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KØBENHAVNS UNIVERSITET DET SUNDHEDSVIDENSKABELIGE FAKULTET

BETYDNINGSFULDE OPLEVELSER Udviklingsprocesser for unge og voksne med cerebral parese gennem resiliensbaserede sociale tilpassede idræts- og bevægelsesindsatser

Ph.d.-afhandling 2020

•

Mie Maar Andersen

This thesis has been submitted to the Graduate School of Health and Medical Sciences, University of Copenhagen 12-07-2020

KØBENHAVNS UNIVERSITET DET SUNDHEDSVIDENSKABELIGE FAKULTET

BETYDNINGSFULDE OPLEVELSER Udviklingsprocesser for unge og voksne med cerebral parese gennem resiliensbaserede sociale tilpassede idræts- og bevægelsesindsatser

Ph.d.-afhandling Mie Maar Andersen 2020

Name of Department:

Department of Neuroscience University of Copenhagen, Denmark

Author:

Mie Maar Andersen

Contact:

mma@elsassfonden.dk

Titel:

Betydningsfulde oplevelser Udviklingsprocesser for unge og voksne med cerebral parese gennem resiliensbaserede sociale tilpassede idræts- og bevægelsesindsatser

Title:

Significant experiences Development processes for young people and adults with cerebral palsy through resilience-based social adapted physical activity interventions

Academic Advisors:

Jens Bo Nielsen Department of Neuroscience University of Copenhagen, Denmark Helle Winther Department of Nutrition, Exercise and Sports University of Copenhagen, Denmark Kristian Møller Moltke Martiny Center for Subjectivity Research University of Copenhagen, Denmark

Assessment committee:

Professor Reidun Birgitta Jahnsen Department of Clinical Neurosciences for Children Oslo University Hospital, Norway Associate Professor Louise Bøttcher Institut for Uddannelse og Pædagogik Aarhus Universitet, Denmark Associate Professor Jakob Lorentzen (Chairman) Department of Neuroscience University of Copenhagen, Denmark

Funded by:

Elsass Fonden, DK-Denmark Innovations Fonden, DK-Denmark

Submission:

12 – 07 – 2020

Grade:

Ph.d.

“At vove er at miste fodfæste for en stund – ikke at vove er at miste sig selv”

Nyfortolket udgave af passage fra ”Sygdommen til Døden” af Søren Kierkegaard, 1849

Acknowledgements Først og fremmest en stor tak til alle de mange børn, unge og voksne med cerebral parese, som jeg har haft muligheden for at være sammen med i nogle af deres mest sårbare og succesfulde camp-øjeblikke. De mange oplevelser vi har haft sammen, har været dybt inspirerende for mig. En særlig tak skal lyde til de personer, der har været en aktiv del af dette forskningsprojekt. Mine venner, kæreste og familie skal vide, at jeg er taknemmelig for, at de interesseret har lyttet til mine mange historier fra camps samt uendelige refleksioner, spørgsmål, ideer og frustrationer om stort og småt. Mest af alt tak for at være de faste og kærlige holdepunkter i mit liv, der gør, at jeg tør vove pelsen og kaste mig ud, hvor jeg ikke ved, om jeg kan bunde. En særlig tak skal også lyde til alle mine kollegaer i Elsass Fonden. De mange gode diskussioner og refleksioner og ikke mindst skabelsen af det bedste arbejdsmiljø, har gjort en kæmpe forskel for mig. Uden jeres støtte, engagement, begejstring, kram og nutella-gaver havde jeg aldrig fundet energien eller fastholdt motivationen i et projekt som dette. En særlig tak til Camilla Voigt, der har stået ved min side på alle sports camps. Også tak til tidligere direktør Peder Esben Bilde for at se et potential i mig og sports camps. Tak til Elsass Fonden der har fondet projektet og samtidig har været en betydningsfuld og værdsat arbejdsplads gennem mange år. Med det ansvar og den opbakning jeg har fået fra fondens side, har jeg haft mulighed for at eksperimentere, fejle og lege med min teoretiske og praktiske kreativitet, hvilket har været afgørende for min udvikling og læring. Tak til Innovations Fonden for at anerkende det innovative i projektet og hermed vælge at støtte dette. En tak skal også lyde til den humanistisk og samfundsvidenskabelige afdeling på Institut for Idræt og Ernæring (NEXS). I åbnede jeres døre og lukkede mig ind i jeres forskningsmiljø. På NEXS, skal en særlig tak gives til de tre idrætsstuderende; Ida Marie Dahlgaard Hansen, Mathias Bille og Fie Frederiksen. I har gjort et kæmpe stykke arbejde og udvist et overvældende engagement i forbindelse med projektet.

Til sidst skal lyde en stor tak til mine tre vejledere, der på hver sin måde, har været en enorm hjælp og støtte i hele processen. Kristian Møller Moltke Martiny, du tilbød mig muligheden for at lave en ph.d., og fastslog hermed at humanistisk forskning, har en plads i dette felt. En stor tak for din enorme energi, støtte, sparring og opløftende ord omkring mit arbejde og mine budskaber. Uden dig, dine progressive tanker og handlinger var dette aldrig sket - tak.

Jens Bo Nielsen, tak fordi du kæmpede for, at projektet rent organisatorisk kunne lade sig gøre. Tilmed en stor tak for de mange inspirerende samtaler vi har haft, om de mange potentialer og muligheder, der ligger foran os. Muligheder der nok skal blive til virkeligheder, hvis vi fortsætter med at understøtte de (speed)både, vi har sat i søen. Ikke mindst tak til min mentor og inspirator Helle Winther. Uden dig ville jeg ikke have haft den faglige sparring og opbakning til projektet, som jeg har haft brug for. Ydermere vil jeg fremhæve, at du Helle, uden tvivl er den person, der har påvirket mit professionelle liv mest. Du er en kæmpe inspiration, der med din favnende, støttende, motiverende og omsorgsfulde energi har bevæget mig dybt. Det er ingen overdrivelse at sige, at du er en af grundene til, at mit professionelle liv har taget den retning, det har taget. Du gør en forskel!

Forord Denne ph.d.-afhandling ’Betydningsfulde oplevelser - Udviklingsprocesser for unge og voksne med

cerebral

parese

gennem

resiliensbaserede

sociale

tilpassede

idræts-

bevægelsesindsatser’, er et praktikerforskningsprojekt, der er udført i perioden fra oktober 2016 til juli 2020. Projektet er udført i Elsass Fonden i samarbejde med Institut for Idræt og Ernæring samt Institut for Neurovidenskab ved Københavns Universitet. Ydermere er projektet støttet af Innovations Fonden. I Elsass Fonden er visionen at skabe bedre livskvalitet for mennesker med cerebral parese. Dette gøres både gennem innovative praksisinitiativer og forskningsprojekter. I dette projekt har jeg haft mulighed for at forsøge at forene og bygge bro mellem forskellige videnskabelige paradigmer samt mellem praksis og forskning. Med et tværvidenskabeligt vejledningsteam bestående af repræsentanter fra bevægelsespsykologien, filosofien og neurovidenskaben er projektet både blevet udfordret og styrket. Det har således på den ene side været en svær kunst at navigere mellem diskurser og discipliner, men mest af alt har det været et værdifuldt privilegie, at få så bred en opbakning og så nuancerede diskussioner og indspark. I sidste ende har de mange indfaldsvinkler rustet både afhandlingens ståsted og min rolle som forsker i et felt, hvor folk ytrer sig og handler på baggrund af deres passion for at støtte og styrke sårbare målgrupper på bedste vis. Broen mellem praksis og forskning er skabt via rollen som praktikerforsker. Her har jeg både været nærværende praktiker i bevægelsesindsatsen sports camp, og samtidig skulle forholde mig distanceret, nysgerrigt og åbent via min forskerrolle. En position der har skabt en stor indsigt i, hvorledes de tilpassede idræts- og bevægelsesaktiviteter samt fællesskabet blandt ligestillede har influeret deltagerne på campen. En indsigt, der kan bidrage til, at der kommer en større viden om, hvordan

helhedsorienterede

bevægelsesfællesskaber

kan

fungere

som

meningsfulde

sundhedsfaglige indsatser for mennesker med sårbarheder – ikke mindst for mennesker med cerebral parese.

Dansk resumé At være et menneske der lever med cerebral parese (CP), kan have betydning for mange dele af ens liv fra tidlig barndom til sen alderdom. At have CP betyder derfor også, at man ofte bliver tilknyttet sundhedssystemet og herigennem tilbydes en række behandlings- og rehabiliteringsindsatser. Dog udbydes der i Danmark og mange andre velhavende lande kun en systematisk og koordineret indsats fra sundhedssystemet indtil den dag, hvor man som et ungt menneske med CP fylder 18 år. I indsatserne er der et særligt fokus på, hvorledes de nedsatte fysiske funktioner kan støttes og styrkes bedst muligt. Et fokus der betyder, at indsatserne i henhold til disse centrale områder, er utrolig langt i deres udvikling. Dog betyder det også, at der hidtil har været et mindre fokus på indsatser, der tilmed stiler mod at støtte og afhjælpe de psykologiske og sociale problemstillinger, der tilmed kan være forbundet med det at leve med CP. Med dette in mente er ambitionen med denne afhandling at belyse, hvilken betydning det har, når indsatsen for unge og voksne med CP integrerer de fysiske, psykologiske og sociale aspekter i sit design og primære formål. Spørgsmålet undersøges via en fænomenologisk inspireret tilgang, hvor der søges en belysning af hvilke oplevelses- og udviklingsaspekter, der fremstår som betydningsfulde, når unge og voksne med CP deltager i den helhedsorienterede resiliens-baserede indsats sports camp¸ der er udviklet af Elsass Fonden.

I studie I rettes der fokus mod oplevelsen og betydningen af at være i et fællesskab med ligestillede. Deltagerne beskrev en oplevelse af tilhørsforhold, social sikkerhed, en opløftende gruppesynergi, symmetri i evner, en følelse af at være en ressource og en fælles forståelse af at være et menneske med CP. Dimensioner der medførte, at deltagerne fik en større tro på sig selv, turde være sårbare og deltage aktivt i de udfordringer, de blev præsenteret for.

Studie II omhandler deltagernes oplevelse af at deltage i sports campens udfordrende tilpassede idræts- og bevægelsesaktiviteter. Deltagerne oplevede campens aktiviteter som meget anderledes og udfordrende sammenlignet med de aktiviteter, de bliver præsenteret for i deres daglige liv, samt i de rehabiliteringsindsatser de er tilknyttet. Deltagelsen og mestringen i aktiviteterne gav dem nye og styrkede perspektiver på sig selv, deres handicap og evner.

I studie III undersøges det, hvilke spor en sports camp sætter i tiden efter camp. Deltagerne beskriver, at de oplevede positive ændringer i deres hverdag på to planer. På et niveau var der elementer fra sports campen, som de kunne implementere direkte i hverdagen. På et andet niveau var der elementer fra campen, som viste sig i deres liv i nye transformerede versioner. Ændringerne som deltagerne fokuserer på, vedrører fire områder: 1) sociale relationer, 2) strategier til at håndtere udfordringer, 3) Nye historier og selvfortællinger samt 4) deltagelse i aktiviteter. Fundene indikerer ydermere, at deltagerne oplever at stå meget alene i tiden efter en camp, hvilket ser ud til at forstyrre deltagernes fulde udbytte af sports campen. Det anbefales således, at der i supplement til campen sættes større fokus at integrere campen i deltagernes hverdag, samt at inkludere deres lokale sociale miljø.

Studie IV søger gennem en grounded theory analyse, at belyse, udrede og konkretisere et nyt oplevelsesfænomen, der kan være medskabende til udvikling af en styrket tro på egne evner. Fænomenet har fået benævnelsen en ’rød zone oplevelse’. Kernekategorien, der indfanger fænomenet, defineres som en inkongruens mellem deltagerens forudfattede forventning om ikke at kunne håndtere en vilkårlig opgave, og den efterfølgende oplevelse af at kunne håndtere opgaven. Tre yderligere kerneelementer omfatter konceptet: 1) en metamotivation, der viser sig som et dyb lyst på trods af en umiddelbar modstand; 2) tilstedeværelsen af betydningsfulde andre; 3) en transformativ selvfortælling, der ændrer selvopfattelsen samt åbner blikket for de muligheder man har i verden. Resultaterne viser, hvordan store udfordringer kan transformere og styrke menneskers selvopfattelse, såfremt de professionelle formår at støtte på en beslutsom men varsom facon.

English summery Living with cerebral palsy (CP) can affect many parts of one's life from early childhood to late adulthood. Thus, having CP also means becoming affiliated with the health system and thereby offering a range of treatment and rehabilitation programs. However, in Denmark and many other wealthy countries, only systematic and coordinated programs are offered until the day the young person with CP turns 18. The majority of these programs specifically focus on how to best support and improve the individualâ€™s physical functioning, which means that these important types of programs are well established and have a strong knowledge base. However, less attention has been given to interventions aimed at dealing with the psychosocial challenges of living with CP. Hence, this thesis aims to elucidate the impact of integrating physical and psychosocial aspects in the design and primary objective of an intervention for young people and adults with CP. This is done by using a phenomenological inspired approach to examine the experiences of young people and adults with CP who participated in a holistic resilience-based sports camp intervention designed by the Elsass Foundation. This thesis elucidates which aspects of the participantsâ€™ experience are meaningful for the participantsâ€™ physical and psychosocial development.

Study 1 focusses on how the participants experience being part of a group of similarly disposed individuals. The participants described feeling that they belonged to the group and that they were safe in the group. They described feeling a sense of positive group synergy in which there was symmetry between the abilities of the individual group members and a shared understanding of what living with CP means. Together, these dimensions resulted in the participants believing more in themselves and in daring to be more vulnerable and to participate actively in the challenges they were given.

Study 2 deals with how the participants experience participating in the challenging adapted physical activities of the sports camp. The participants found the activities to be very different and challenging when compared to their everyday activities and traditional rehabilitation interventions. By participating in the activities, the participants learned to see themselves, their disability and their abilities in a new light.

Study 3 examines how participating in a sports camp affects the lives of participants after the camp. The participants described how the camp had positively changed their everyday lives in two ways. First, they were able to implement some of the elements from the camp when 11

they returned to their everyday lives, and second, they found that some of the elements from the camp were present in their lives in new and transformed ways. In describing these positive changes, the participants focussed on the following areas: 1) forging social relationships, 2) using strategies for dealing with challenges, 3) creating a new self-image and self-narrative, and 4) participating in activities. Furthermore, the study’s findings indicate that some of the participants find the time after camp very lonely, which may hinder participants from gaining as much as they could from the sports camp. Thus, the recommendation is to focus more on integrating the camp in the participants’ everyday lives and to include their local social environment.

Study 4 aims to elucidate, elaborate and concretise a new experience phenomenon referred to as a ’red zone experience’ based on a grounded theory analysis. The core category that captures this phenomenon is defined as a an inconsistency between the participant’s preconceived negative expectation of not being able to perform an activity and the subsequent positive experience of succeeding at the activity. Three additional core elements form the concept: 1) a meta-motivation that is present as a deep-felt wish to engage despite an instinctive resistance; 2) the presence of significant others; and 3) a transformative self-narrative that changes the way in which the individual sees themselves and what the world has to offer. The findings show how great challenges can transform and strengthen an individual’s self-image, if the professionals are able to support in a resolute but cautious way.

Oversigt over manuskripter Alle manuskripter kan findes i bilagene.

Studie 1

I dare to be myself. The value of peer communities in adapted physical activity interventions for young people and adult people with cerebral palsy Andersen, M.M. & Winther, H. Submitted til: Clinical Rehabilitation

Studie 2

Moved by Movement. A phenomenological study of how young people and adults with cerebral palsy experience participating in the challenging adapted physical activities at a sports camp Andersen, M.M. & Winther, H. Submitted til: Journal of Sport and Development

Studie 3

You learn to believe more in yourself. Experienced development processes after attending a resilience-based sports camp for young people and adults with cerebral palsy Andersen, M.M. Anmodning om publicering i en Special Edition i: Disability and Rehabilitation.

Studie 4

The Red Zone â€“ The psychology of significant mastery experiences. A grounded theory study based on challenging and adapted physical activities Andersen, M.M. & Winther, H. Submitted til: New Ideas in Psychology.

Indholdsfortegnelse ACKNOWLEDGEMENTS ........................................................................................................... 5 FORORD........................................................................................................................................ 8 DANSK RESUMÉ ......................................................................................................................... 9 ENGLISH SUMMERY ............................................................................................................... 11 OVERSIGT OVER MANUSKRIPTER ...................................................................................... 13 INDHOLDSFORTEGNELSE ..................................................................................................... 14 1. INTRODUKTION ................................................................................................................... 15 1.1 Afhandlingens struktur ......................................................................................................................................... 17 1.2 Begrebsafklaring .................................................................................................................................................. 18 1.3 Cerebral parese ..................................................................................................................................................... 21 1.4 Helhedsorienteret rehabilitering og behandling.................................................................................................... 22 1.5 Muligheder og udfordringer forbundet med de traditionelle indsatser ................................................................. 23 1.6 Fysisk aktivitets og bevægelses mange potentialer .............................................................................................. 25 1.7 Fællesskabets betydning ....................................................................................................................................... 32 1.8 Camps som indsats for sårbare målgrupper .......................................................................................................... 33

2. FORSKNINGSINDSATS – SPORTS CAMPS....................................................................... 40 2.1 Praktiske rammer.................................................................................................................................................. 40 2.2 Teoretisk og metodisk fundament ........................................................................................................................ 41

3. METODISKE TILTAG OG OVERVEJELSER ..................................................................... 47 3.1 Fænomenologisk indgangsvinkel ......................................................................................................................... 47 3.2 Forskerrolle – praktikerforsker ............................................................................................................................. 49 3.3 Deltagere .............................................................................................................................................................. 53 3.4 Metodiske tilgange ............................................................................................................................................... 54 3.5 Analyse strategi .................................................................................................................................................... 62 3.6 Kvalitetssikring .................................................................................................................................................... 65

4. DE FIRE STUDIER ................................................................................................................. 67 4.1 Studie I ................................................................................................................................................................. 67 4.2 Studie II ................................................................................................................................................................ 71 4.3 Studie III............................................................................................................................................................... 74 4.4 Studie IV .............................................................................................................................................................. 77

5. DISKUSSION - VIDERE FORSKNING ................................................................................ 81 5.1 Kan >< Tør ........................................................................................................................................................... 81 5.2 Intensitet >< Kontinuitet ...................................................................................................................................... 82 5.3 Cerebral parese >< Andre målgrupper ................................................................................................................. 83

6. KONKLUSION........................................................................................................................ 85 REFERENCER ............................................................................................................................ 87 BILAG........................................................................................................................................ 100 I dare to be myself .................................................................................................................................................... 102 Moved by Movement ............................................................................................................................................... 126 You learn to believe more in yourself ...................................................................................................................... 152 The Red Zone – the psychology of significant mastery experiences........................................................................ 184

1. Introduktion ”Og så ved jeg bare med de her venner her [på sports camp], så vil de hjælpe mig lige meget hvad. De ser mig som et menneske i stedet for kun at se på mit handicap.” (Pige med cerebral parese, 13 år) At være et menneske der under graviditeten, ved fødslen eller inden for de første år erhverver sig en hjerneskade betyder ydermere, at man bliver et menneske, der tilegner sig diagnosen cerebral parese (CP) (Rosenbaum et al, 2007). En diagnose og tilstand, der vil komme til udtryk, blive opfattet og udlevet af den enkelte på forskellig vis. Dog er det fælles for alle, at tilstanden gennem hele livet vil kunne ændres og bedres, men aldrig helbredes. At have CP, vil således være ens norm og måde at være menneske på i denne verden fra tidlig barndom og resten af livet. Det er dog en oplevelse af normalitet, der ikke deles med omverdenen. Her er det at have CP blevet fortolket som en anderledeshed – et handicap. Et handicap, hvor mange har behov for hjælp og støtte både fra de allernærmeste venner og familie, den lokale institution, skole og arbejdsplads, men også fra de politiske, økonomiske og sundhedsfaglige samfundsarenaer. Spørgsmålet er dog, hvordan der kan udvikles initiativer, der kan udvide vores forståelse af, hvordan der kan hjælpes og støttes bedst muligt? Denne afhandling kredser omkring dette spørgsmål i relation til den praksis, der tilbydes og udøves i sundhedssystemet for unge og voksne mennesker med CP. Sundhedssystemet har været præget af et fokus på, hvorledes de nedsatte fysiske funktioner (fx spasticitet, fejlstillinger og kontrakturer), der kan være forbundet med CP, kan støttes og bedres bedst muligt (Wang & Yan, 2018; Michelsen et al, 2010). Dette fokus har betydet, at indsatserne på disse områder er nået utroligt langt. I modsætning er udviklingen af indsatser, der tilmed stiler mod at støtte og styrke de psykologiske og sociale problemstillinger, ikke særlig langt. Med dette in mente er ambitionen med dette projekt at belyse, hvilken betydning det har, når indsatsen for mennesker med CP adresserer både fysiske, psykologiske og sociale aspekter i sit design og primære formål. Ydermere er det af særlig betydning, at målgruppen unge og voksne med CP adresseres. En målgruppe der er valgt af flere årsager. Som det første er det meget begrænset, hvor meget forskning der er på dette område. Som det andet ønsker jeg med dette projekt at sætte fokus på betydningen af, at der udbydes tilbud for disse målgrupper. Dette skal ses i lyset af, at der i Danmark (og i langt de flest andre lande) ikke findes nogen systematisk og koordineret indsats for mennesker med CP, der er over 18 år. Dette er på trods af, at CP er en livslang tilstand.

Afhandlingens fund og diskussioner skal således ses som et bidrag til forsknings- og praksisfeltet inden for CP. Et bidrag, der særligt kan give en bedre forståelse for, hvorledes der kan arbejdes med psykosociale aspekter som selvopfattelse, troen på egne evner og betydningsfulde relationer, uden at gå på kompromis med en opmærksomhed på betydningen af bevægelse for kroppens fysiske udvikling. Dette er en helhedsorienteret tilgang, der således vil kunne udvide det samlede mulighedsrum for, hvordan mennesker med CP kan støttes og hjælpes i deres væren i verden. Mere konkret retter dette projekt sig mod indsatsen sports camp. Sports camp er en indsats for mennesker med CP, der i både sin opbygning og formål søger at stimulere til en helhedsorienteret udvikling af individet. Indsatsen har således til formål at styrke deltagernes motivation til idræt og bevægelse, deres sociale relationer samt deres selvopfattelse og selvfortælling gennem legende, anderledes og udfordrende idrætter og bevægelsesaktiviteter i fællesskab med ligestillede (Andersen, 2016). Spørgsmålet er dog, hvorledes mennesker der lever med CP, oplever at deltage i en sports camp? Ydermere er det interessant at få skabt en indsigt i, hvordan campen sætter spor i deltagerne efter endt ophold, og herigennem belyse hvorvidt sports camps indeholder udviklingspotentialer, der kan overføres til deltagernes hverdag. Det er afgørende at forholde sig til denne indsigt, hvis der skal skabes klarhed omkring, hvordan en indsats som sports camp kan bidrage til at støtte og hjælpe mennesker med CP. Gennem et kvalitativt fænomenologisk inspireret undersøgelsesdesign søger denne afhandling således at belyse og besvare spørgsmålene: ”Hvordan oplever unge og voksne med cerebral parese at deltage i den helhedsorienterede bevægelsesindsats sports camp? Hvilke udviklingsprocesser viser sig hos deltagerne på baggrund af deltagelse heri?” Ved at belyse problemstillingen bliver det muligt at få en større forståelse for, hvorledes en sports camp kan være udviklende og sætte betydningsfulde spor i mennesker med CP. En belysning, der både kan skabe en større forståelse for mennesker med CP, men som også kan give nye perspektiver på praksissen sports camp. Set i et større perspektiv er hensigten, at afhandlingen kan være med til at inspirere sundhedsvæsenet til integrere en mere helhedsorienteret bevægelsesstrategi i deres rehabiliteringstilbud for mennesker, der lever med CP eller andre sårbarheder.

1.1 Afhandlingens struktur I det følgende gives en kort beskrivelse af hvorledes afhandlingen er opbygget. Som det første laves en begrebsafklaring, idet der i afhandlingen benyttes flere ord og begreber, der afhængig af praksis samt videnskabsteoretisk kultur og tradition kan fortolkes forskelligt. Herefter præsenteres en række centrale områder, der har til formål at give læseren en bedre indsigt i det udgangspunkt samt den kontinuitet, udvikling og forandring, der har været i forståelsen af målgruppen samt de hertil hørende rehabiliterende indsatser og tiltag. Som det første præsenteres således nogle af de mere udbredte og traditionelle baggrundsforståelse, herefter opstilles en række nye perspektiver, der har til formål at tydeliggøre nødvendigheden af yderligere differentierende rehabiliteringstiltag. Dette fører til sidst læseren hen til en indføring i, hvilke nye og supplerende tilgange, der i denne afhandling tages udgangspunkt i. Afhandlingen har ikke et traditionelt opdelt state-of-the-art- og teoriafsnit. Derimod vil der i indføringen til feltet, løbende blive refereret til relevante teoretiske referencerammer, samt understøttende empiriske studier. Valget af opbygning skyldes, at dette vil give læseren et bedre læse-flow og hermed også en bedre forståelse for afhandlingens positionering i feltet. Efter en introduktion til feltet præsenteres selve indsatsen sports camp. Igen vil der her blive anvendt centrale begreber til at tydeliggøre de teoretiske og metodiske principper og konstruktioner som indsatsen er bygget op omkring. Videre herfra gives en indføring i de metodiske valg og refleksioner, en kort introduktion til de fire forskningsstudier vil blive fremstillet og slutteligt vil en perspektiverende diskussion og konklusion blive præsenteret. Afhandlingens fire artikler er vedlagt som bilag.

Rigtig god læselyst.

1.2 Begrebsafklaring 1.21 Mennesker med cerebral parese

Betegnelsen ”mennesker med CP” benyttes i denne afhandling, når der henvises til målgruppen som helhed. Dog har dette projekt ikke fokus på indsatser, der vedrører mindre børn med CP. Projektet skal således primært ses i relation til unge og voksne med CP.

1.22 Deltagerne

Betegnelsen ”deltagerne” benyttes konsekvent i afhandlingen, når der henvises til unge og voksne med CP, der har været med i forskningsprojektet.

1.23 Camps

Når camps benyttes i afhandlingen, er det betegnende for et intensivt ophold i en begrænset og tidsbestemt periode.

1.24 Helhedsorienteret

Når begrebet ”helhedsorienteret” benyttes, er det i relation til to dimensioner. Dels er det med henvisning til WHO’s bio-psyko-social forståelsesmodel og klassifikationssystem International Classification of Functioning, Disability and Health (ICF; WHO, 2001), der fremlægger en forståelse af menneskers funktionsevne som værende præget af indbyrdes afhængige psykiske, sociale og fysiske forhold. Ydermere relaterer begrebet til en helhedsorienteret fænomenologisk forståelse af mennesket som værende både et biologisk, sansende, tænkende og socialt betinget væsen (Merleau-Ponty, 1962/2002). Menneskets væren i verden er således på en og samme tid præget af at have en biologisk krop og at være en sansende og erfaringsbærende levet krop, der igennem sin intentionalitet altid er forbundet med omverdenen.

1.25 Udviklingsprocesser

Udvikling indebærer en dynamisk bevægelse fra et stadie til et andet, hvor en forandring finder sted (Damon, 2015; Sommer, 2017). Når der i problemformuleringen henvises til udviklingsprocesser, er det således med en ambition om at forstå, hvordan deltagerne på forskellige måder forandrer sig på baggrund af deres deltagelse i sports campen. Når Damon (2015) og Sommer (2017) definerer udvikling, bygger de på forståelse af en proces, der fører til 18

det bedre. Det er ikke tilfældet i dette projekt. Her undersøges udviklingsprocesser i relation til deltagelse i sports camps med en åbenhed overfor, at sports campen kan medvirke til både mere eller mindre hensigtsmæssige forandringer i deltagerne og deres liv.

1.26 Rehabilitering

Da CP er en uhelbredelig tilstand, kan det synes misvisende at snakke om rehabilitering, da re i ordets oprindelige betydning henviser til et ønske om en før-tilstand. En før-tilstand, der ikke er aktuel, når man er et menneske, der lever med CP, og således har levet hele sit liv med en uhelbredelig hjerneskade. Når rehabilitering benyttes fremfor habilitering, skyldes det en forståelse af begrebet, der ikke nødvendigvis handler om at ’komme tilbage’, men derimod har til formål at etablere indsatser, der skaber en styrket, selvstændig og meningsfuld tilværelse for den berørte person (WHO, 2011; MarselisborgCentret, 2004; CRPD, 2019). Når begrebet bruges konsekvent i dette projekt, er det således med en bevidsthed om denne tvetydighed.

1.27 Fysisk aktivitet

Fysisk aktivitet er defineret som: ”Ethvert muskelarbejde, der øger energiomsætningen i skeletmuskulaturen, dvs. både ustruktureret aktivitet og mere bevidst, målrettet, regelmæssig fysisk aktivitet.” (Sundhedsstyrelsen, 2018, s. 21). I afhandlingen benyttes dette begreb til at beskrive indsatser med et medicinsk fokus, hvor fysisk aktivitet primært anvendes som middel til at behandle, forebygge eller forbedre den objektive fysiske krop.

1.28 Helhedsorienterede bevægelsesaktiviteter

Betegnelsen helhedsorienterede bevægelsesaktiviteter knytter sig til en kropsfænomenologiske forståelsesramme. Kroppen anses i denne sammenhæng både som værende et fysisk objekt og et sansende, meningsøgende og intentionelt kommunikerende subjekt (Merleau-Ponty, 2009). Merleau-Ponty betegner denne sammensmeltning af objekt og subjekt som den levede krop. En levet krop der er i et dynamisk og gensidigt forhold med omverdenen, og kan hermed aldrig ses som en isoleret enhed. Som mennesker er vi således kroppe, der både lever, oplever og opleves. Og i bevægelsesaktiviteter vil vi derfor også altid både bevæge os og lade os bevæge. En aktiv proces hvor der opstår et interessant samspil mellem kropslige, sociale og identitetsmæssige sammenhænge (Engelsrud, 2013; Duesund, 2006; Kissow & Therkildsen, 2006).

I afhandlingen benyttes betegnelsen helhedsorienteret bevægelsesaktiviteter som en overordnet forståelsesramme for bevægelses aktiviteter, hvor der er en pædagogisk bevidsthed om dette dialektiske forhold mellem krop og verden, og hermed også om bevægelsens mange læringspotentialer.

1.29 Tilpasset Idræt og Bevægelse (TIB)

Tilpasset Idræt og Bevægelse (TIB) er den danske oversættelse af det internationale begreb Adapted Physical Activity (APA). Begrebet benyttes i mange forskellige afskygninger indenfor mange forskellige domæner. Dog er der overvejende enighed om, at begrebet omhandler bevægelsesaktiviteter der er tilrettelagt og tilpasset, så mennesker med nedsat funktionsevne kan deltage på deres niveau. Når tilpasset idræt og bevægelse anvendes i afhandlingen henviser det til indsatser for mennesker med funktionsnedsættelser, hvor tilpasset idræt og bevægelse søger at stimulere

til

empowerment

selvaktualisering

gennem

mere

helhedsorienterede

bevægelsesaktiviteter i et rehabiliteringsforløb (Sherill, 2004; Johansen, 2006). Begrebet beskrives mere indgående i afsnit 1.52.

1.3 Cerebral parese Cerebral parese (CP) er en betegnelse, som i 90 % af tilfældene skyldes en medfødt skade på den umodne hjerne (Ellenberg & Nelson, 2013). I de fleste tilfælde af CP rammer hjerneskaden den motoriske hjernebark og lillehjernen, hvilket skader hjernens evne til at komme med korrekte neurologiske forudsigelser om specifikt signalfeedback (Moltke Martiny, 2016). Denne form for hjerneskade medfører typisk nedsat muskelstyrke og nedsat koordinering af bevægelser. Foruden disse motoriske udfordringer kan hjerneskaden også medføre kognitive vanskeligheder så som problemer med hukommelse, koncentration og sprog (Bottcher, 2010).

De fysiske og kognitive udfordringer forbundet med CP medfører i mange tilfælde, at mennesker med CP udvikler en uhensigtsmæssig selvopfattelse. Studier viser således, at mange mennesker med CP har en lav grad af selvstændighed, ikke stoler på egen krop, føler sig anderledes og har svært ved at være i ukontrollerede og udfordrende situationer (Sandström, 2007; Brunton & Bartlett, 2013; McLaughlin & Coleman-Fountain, 2014; Moltke Martiny, 2015). Tilsammen medfører disse udfordringer ofte nogle begrænsende handlingsmønstre, hvilket i relation til CP kan afspejles i flere samfundsarenaer. Undersøgelser viser således, at børn og unge med CP har et langt lavere aktivitetsniveau sammenlignet med børn og unge med en normal udvikling, og at de ligger betydeligt under de anbefalede retningslinjer for fysisk aktivitet (Carlon et al., 2012). Det er en problematisk tendens, da daglig fysisk aktivitet ikke kun kan reducere hjerneskadens kognitive og motoriske påvirkning (Damiano, 2006), men også anses for at være den væsentligste faktor for at reducere risikoen for udvikling af livsstilssygdomme så som sukkersyge, fedme og hjerte-kar-sygdomme hos mennesker med CP (Peterson, 2012). Flere studier konstaterer tilmed, at mennesker med CP har problemer med at deltage i sociale situationer og fritidsaktiviteter samt danne betydningsfulde relationer med jævnaldrende (Shikako-Thomas et al. 2008; Bottcher, 2010; Imms et al., 2008). Som et sidste punkt viser forskning, at mennesker med CP har tydelige udfordringer i forbindelse med både skole, arbejde og samliv. Færre danske voksne med CP har en erhvervskompetencegivende uddannelse (35% versus 73%), færre er i beskæftigelse (29% versus 76%) og færre har stiftet familie og bor med partner (29% versus 69%) (Michelsen et al., 2017).

Baseret på resultaterne af disse studier kan man sige, at mennesker med CP typisk har et liv, der er præget af komplekse udfordringer. En kompleksitet der både viser sig i sin helhed via både fysiske, psykiske, sociale og samfundsrelaterede problemstillinger.

1.4 Helhedsorienteret rehabilitering og behandling At anskue mennesker med handicap ud fra et komplekst helhedsorienteret perspektiv har været anerkendt i flere årtier, men blev særligt understreget, da WHO i 2001 godkendte og udgav deres bio-psyko-social forståelsesmodel og klassifikationssystem ICF (WHO, 2001). Med ICFmodellen og klassifikationen blev der således udviklet en fælles forståelsesramme og et fælles sprog til at beskrive og arbejde fokuseret med de komponenter og strukturer, der er definerende for menneskers funktionsevne. Funktionsevne bliver i rapporten defineret som “an umbrella term encompassing all body functions, activities and participation” (ICF 2001, s. 3). Yderligere to områder, miljøfaktorer og personlige faktorer, anses også at være afgørende for individets funktionsevne. Denne helhedsorienterede tilgang til mennesker med nedsat funktionsevne understøttes af Convention on the Rights of Persons with Disabilities (CRPD), hvori der står, at rehabilitering bør: “enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”. (CRPD, artikel 26, s. 19).

Med disse helhedsorienterede modeller, intentioner og forståelsesrammer in mente gives i det følgende en kort præsentation af de tre mest dominerende indsatser på internationalt plan: terapi, kirurgi og medicinsk behandling (Wang & Yan, 2018). 1.41 Terapi

Fysio- og ergoterapi er de to mest anvendte terapiformer for mennesker med CP. Fysioterapeutiske indsatser for mennesker med CP har generelt set til formål at fremme de motoriske funktioner og mindske udviklingen af fejlstillinger (Michelsen et al, 2010). Der har således været fokus på styrke-, balance-, koordinations- og udstrækningsøvelser og -træning for at opnå bedst mulig siddestilling, hovedkontrol og ikke mindst gang- og standfunktion. Ergoterapien søger derimod at træne, tilpasse og understøtte mennesket med CP i at håndtere daglige gøremål. Der arbejdes blandt andet med at forbedre mund- eller håndmotorik baseret på antagelsen om, at det kan forbedre individets deltagelse og selvstændighed i forbindelse med blandt andet spise- eller påklædningssituationer (ibid.). 1.42 Kirurgi

Kirurgisk behandling af mennesker med CP søger at forbedre kropsfunktioner, typisk ved at forlænge, frigøre eller flytte muskler, sener eller knogler i arme eller ben (Michelsen et al, 2010). 22

Ca. 20% af alle børn med CP i Danmark bliver opereret (Michelsen et al, 2010), hvoraf den hyppigste operation er akillesseneforlængelse (cpguiden.dk, 2019). En operation som afhjælper spidsfodsstilling og hermed bidrager til, at personen har bedre forudsætninger for at gå på flad fod fremfor på tæer. 1.43 Medicin

Den medicinske behandling består hovedsageligt af muskelafslappende præparater (Michelsen et al, 2010). Systemisk virkende muskelafslappende medicin (fx diazepam og baclofen) virker beroligende og bruges, når spændingen i for mange muskler er for høj, og bevægelserne således er svære at kontrollere. Lokal muskelafslappende medicin (botulinum toxin type A), sprøjtes derimod direkte ind i udvalgte muskler, og bruges således i forbindelse med en lokal forhøjet spasticitet. Ca. hvert tredje barn med CP i Danmark har modtaget systemisk medicin, mens hele to tredjedele har fået lokale indsprøjtninger (ibid.). Med reference til de førnævnte helhedsorienterede forståelser af mennesker med handicap og forståelser af rehabilitering samt den korte præsentation af de tre mest udbredte indsatser i relation til mennesker med CP, synes de psykosociale indsatsområder umiddelbart at være underrepræsenteret. At de tre nævnte interventionsformer, terapi, kirurgi og medicin, traditionelt har domineret feltet, har dog givet god mening: Som det første har de tre interventionsformer vist sig at være med til at afhjælpe og styrke de kropslige funktionsnedsættelser, som mange med CP oplever. Som det andet har det været antaget, at en forbedring af disse fysiske funktioner tilmed forbedrer psykosociale aspekter såsom deltagelsesniveau, personlig uafhængighed og livskvalitet (Barnes, 2001; Rosenbaum et al., 2007; Davis et al., 2006). Spørgsmålet er dog, om disse kausale sammenhænge mellem fysiske og psykosociale forbedringer kan aflæses i de forskningsstudier, der er lavet inden for området.

1.5 Muligheder og udfordringer forbundet med de traditionelle indsatser Med henvisning til ICF-modellens kerneområder, viser et review-studie fra Novak et al. (2013), at flere af de terapeutiske, kirurgiske og biomedicinske indsatser, der anvendes i det rehabiliterende og behandlende arbejde med mennesker med CP, kan forbedre mennesker med CP’s anatomiske krop, deres kropslige funktioner og aktivitetsniveau. Forskning og praksis inden for CP er således kommet rigtig langt i forhold til at forbedre mennesker med CP’s kropslige fysiske tilstand. Med henvisning til samme studie og adskillige 23

andre bliver det dog også tydeligt, at det omfattende arbejde med at forbedre og understøtte den fysiske krops funktioner, ikke i samme grad synes at kunne medvirke til forbedring af psykosociale faktorer som deltagelse, uafhængighed og personlige faktorer (Adair et al, 2015; Wright et al., 2008; Sheean 2001; Pandyan et al. 2005, Aisen et al. 2011, Novak et al, 2013). Ydermere finder andre studier, at der ikke er en stærk sammenhæng mellem funktionsniveau og god livskvalitet (QOL) (Pirpiris et al. 2006; Shelly et al. 2008; Jiang et al. 2016). I studiet af Shelly et al. (2008) forklarer de dette overraskende paradoks som følgende: “There are several reasons why functioning may be only weakly correlated with QOL. The prevailing argument in the research literature is that children adapt to their current state and do not know another health state. The finding that people with disabilities can have a good QOL has been termed ‘the disability paradox’. (…) This study supports the concept that the disability paradox operates in children with CP” (Shelly et al. 2008, s. 202) En sidste udfordring i henhold til nogle af de nuværende indsatser og tilgange omhandler deres potentielle psykologiske og identitetsskabende påvirkning. Hvis den fysiske aktivitet udpræget bliver en trænings- og behandlingsmetode, der centrerer sig omkring fejlfinding og motorisk udvikling, er der således ”(…) risiko for, at fokus for eleven [mennesket med CP] bliver på den dysfunktionelle krop. Det kan påvirke oplevelsen af egen krop og identitet i relation til andre”. (Soulié et al., 2018, s. 190). Et studie af Jahnsen m.fl. (2003) bekræfter at dette kan være tilfældet i nogle fysioterapeutiske indsatser. Studiet finder således at nogle voksne med CP har oplevet at fysioterapeutiske indsatser i deres barndom, blandt andet har medført psykologiske traumer samt en oplevelse af aldrig at være god nok (ibid.). Dette kan således betyde at den positive udvikling af kropslige funktioner samtidig kan fordre uhensigtsmæssig psykosocial udvikling. Med udgangspunkt i de nævnte studier må der stilles spørgsmålstegn ved, om de mest udbredte tilgange og indsatser kan stå alene i det rehabiliterende arbejde? Eller om de kropslige indsatser og helhedsorienterede intentioner vil blive styrket i deres ambitioner, hvis psykosociale strategier og metoder inddrages i højere grad, end tilfældet er i dag? Dette er et fokus, der på et mere generelt plan i relation til mennesker med funktionsnedsættelser, også er omdrejningspunktet i antologien af Kissow & Therkildsen (2006). Her er det en væsentlig pointe at sundhedssektorens overvejende medicinske tilgang i det rehabiliterende arbejde ikke kan stå alene. I et langsigtet rehabiliteringsperspektiv bør pædagogiske, psykologiske, sociologiske og kulturfilosofiske vidensområder således inddrages, når målsætningen er at den enkelte opnår en forståelse for sig selv, og tilmed udvikler mod og myndighed til at deltage i samfundets mange arenaer (ibid.). 24

Spørgsmålet er dog ikke blot, hvorledes der kan etableres psykosociale indsatser for mennesker med CP, men hvordan der kan arbejdes med helhedsorienterede indsatser, der integrerer både fysiske, psykologiske og sociale aspekter. Med et fokus på bevægelse som metodisk indsats i en social kontekst til at fremme helhedsorienterede rehabiliterende udviklingspotentialer bliver ambitionen i overensstemmelse med Kissow (2006) ”at deltagerne gennem inspirerende bevægelsesoplevelser i et socialt fællesskab har mulighed for at realisere sig selv i en kropslig orienteret kontekst”. Nøgleordene i ovenstående sætning er ”bevægelsesoplevelser” og ”socialt fællesskab”. I overensstemmelse hermed vil der i de følgende to afsnit 1.6 og 1.7 blive fremført pointer, der relaterer sig til hvorledes henholdsvis bevægelsesoplevelser og fællesskaber kan stimulere til forskellige udviklingspotentialer.

1.6 Fysisk aktivitets og bevægelses mange potentialer 1.61 Udbredte perspektiver i relation til mennesker med CP

Når aktivitet anbefales for mennesker med CP, har særligt de mange neurologiske, fysiologiske og motoriske perspektiver været i centrum. Et væsentligt argument i denne sammenhæng har været, at kropslige aktiviteter der - i overensstemmelse med de neuroplastiskeprincipper - er tilpas udfordrende, motiverende og som udøves med intensitet og flere gentagelser over længere tid, til en vis grad kan mindske hjerneskadens indflydelse på den pågældende person (Dayan & Cohen, 2011; Lorentzen & Nielsen, 2012). Den opnåede tilstandsforbedring skal ses i sammenhæng med, at aktivitet under de rette forudsætninger kan medvirke til udvikling af nye nerveceller og –forbindelser, der kan styrke hjernens plastiske evne til at søge nye veje og således arbejde uden om hjerneskaden (ibid.). Ydermere har både forskning og praksis fokuseret på, hvorledes motorisk kontrol og kropslige funktioner kan forbedres hos mennesker med CP. Flere studier har således vist, at intensiv og fokuseret træning kan forbedre kroppens generelle funktioner, så som muskelstyrke, koordination og balance (Nupo, 2011; Kitago & Krakauer, 2013; Nielsen et al., 2015). Andre mere specifikke kropslige funktionsevner, fx gang-, hånd- og mundfunktion, kan også opøves og styrkes gennem fokuseret og intensiv træning af den aktuelle aktivitet og funktionalitet (ibid.). Et sidste væsentlige perspektiv relaterer sig til en sekundær problematik. Forskningsstudier har således vist, at

mennesker med funktionsnedsættelser i stigende grad har en uhensigtsmæssig inaktiv bevægelsesadfærd, og som konsekvens heraf også har en større risiko for at udvikle livsstilssygdomme (Carlon, 2012; Peterson, 2012). Denne forhøjet risiko kan imødekommes gennem kropslig aktivitet og de heraf afledte positive metaboliske, kardiovaskulære og respiratoriske processer (Nsenga et al., 2013; Unnithan et al. 2007; Verschuren etal, 2007; Slaman et al., 2014). Foruden ovenstående udviklings- og forbedringspotentialer er den positive indvirkning af fysisk aktivitet på den kognitive udvikling også blevet et betydningsfuldt argument i relation til mennesker med CP (Kramer & Erickson, 2007; Hilman et al., 2014). Et perspektiv, der skal ses i sammenhæng med, at det i dag anerkendes, at CP er en tilstand, hvor mange til en vis grad er udfordret på kognitive elementer så som koncentration, hukommelse samt på spatiale, perceptuelle og eksekutive funktioner (Bottcher, 2010).

De ovenfor omtalte perspektiver taler alle for, at indsatser med fokus på kroppen i bevægelse fortsat bør tildeles en stor opmærksomhed i indsatser for mennesker med CP. Dog er pointen også at der i arbejdet hermed skal være en opmærksomhed på, hvad det er for en bevægelsesoplevelse, der stimuleres til i den pågældende bevægelsesindsats. Ambitionen er således at rette fokus mod hvorledes aktiviteter med kroppen i bevægelse tilmed kan stimulere til en række hensigtsmæssige psykosociale udviklingspotentialer. Potentialer, der ikke skal forstås som en modsætning til fysisk udvikling, men som derimod kan sættes i spil uden at gå på kompromis med hverken de neurologiske, fysiske eller kognitive udviklingspotentialer.

1.62 Komplementerende perspektiver i relation til mennesker med CP

Som et bærende element i dette projekt ønskes en opmærksomhed og bevidsthed omkring, at kropslige aktiviteter har en egenværdi, der kan stimulere til en række værdifulde dannelsespotentialer, såfremt de organiseres og faciliteres med omhu (Rønholt, 2008). I relation til dette projekt rettes et særligt blik mod idrætten og bevægelsens identitets- og socialt udviklende egenskaber. For at forstå disse komplekse udviklingspotentialer, gives som det første en introduktion til, hvorledes begreberne kan forstås i en overordnet teoretisk ramme. Herefter tydeliggøres betydningen af et fokus på henholdsvis identitets- og sociale udviklingsprocesser i relation til mennesker med funktionsnedsættelser. Til sidst sættes de to begreber i relation til bevægelseskonceptet Adapted Physical Activity (APA)

Identitets- og socialudvikling i en overordnet teoretisk ramme

Identitet kan forstås som noget, der skabes på baggrund af elementer, der henholdsvis taler til en kropsfænomenologisk (Merleau-Ponty, 2009; 1962/2002), narrativ (Bruner, 2004; White, 2008; Smith & Sparkes, 2006) og socialkonstruktionistisk (Gergen, 2010) teoriforståelse (Stelter, 2012). I en fænomenologisk forstand danner mennesker deres selvopfattelse ud fra de erfaringsdannelser og meningsfortolkninger, de skaber på baggrund af de oplevelser og kropslige perceptioner, de præsenteres for i mødet med omverdenen. I forlængelse heraf er det en narrativ pointe, at mennesker skaber sig selv gennem de fortællinger, de konstruerer i relation til deres handlinger og livshistorie. Selvopfattelsen bliver i denne sammenhæng menneskets særegen fortolkning og forståelse af sig selv og den verden, som de lever i. En væren i verden, hvor den enkelte skaber en subjektiv virkelighedsforståelse af, hvordan man ser ud, hvad man kan og ikke kan, hvad der gør en glad og bange, samt hvad ens holdninger, værdier og mål er i livet. På den anden side bliver identitet og selvopfattelse i en narrativ og socialkonstruktivistisk forståelse ikke blot noget, der skabes i individets møde med den sociale omverden, men også noget der skabes i omverdenens møde med individet. Individet vil således med udgangspunkt i sin egen virkelighedsforståelse møde andre individer i forskellige omverdensituationer, der ligeledes bringer deres virkeligheder i spil. I et sådant møde mellem mennesker sker der en forståelsesforhandling og identitetsudvikling, idet vi lader os påvirke af, hvordan andre mennesker taler om os, opfatter os, ser på os, taler til os eller undlader selvsamme. En dimension er således hvorledes sam- og modspillet med omverdenen influerer vores blik på os selv, en anden dimension er hvorledes vi agerer i og interagere med omverdenen. En handlingsog deltagelsesdimension der ikke kan forstås særskilt fra vores selvopfattelse og identitet, men derimod skal forstås som et reciprokt forhold (Bandura, 1997; Ryan & Deci, 2000; Antonovsky, 2000). Vores selvopfattelse og identitet er således afgørende for de handlinger, vi fortager os, og samtidig er handlingerne med til at skabe de opfattelser og fortællinger, vi har om os selv. Handling og selvopfattelse skal således ses som gensidigt afhængige komponenter, der er afgørende for menneskers blik på sig selv og deres væren i verden. Personer med en stærk selvopfattelse og -fortælling er således typisk mere modige, viljestærke og motiverede til at begive sig ud i fremmede og udfordrende situationer. Situationer hvori deres vilje og mod tilmed gør dem i stand til at arbejde hårdt for at mestre den nye situation. Man kan betegne det som en positiv spiral, hvor de igennem handling fremmer deres egen succes og mulighed for en positiv selvopfattelse og -fortælling. Modsat vil mennesker med en lav selvopfattelse typisk være utrygge og betvivle og negligere egne kompetencer, og hermed agere mere usikkert, give op eller forholde

sig passivt. Denne usikkerhed og passivitet bliver en selvopfyldende profeti: de lykkes ikke i at opnå deres mål og drømme, og derved bekræftes de i deres egen inkompetence.

Til forståelsen af at den sociale kontekst præger ens identitet knyttes tilmed en forståelse af, at ens identitet er til forhandling fra kontekst til kontekst (Keupp, 1989; Dreier 2007; 2008; Lave 1999). Ens identitet i idrætsforeningen kan således være anderledes fra ens identitet i hjemmet, på skolen eller på arbejdspladsen. På trods af denne kontekstspecifikke opdeling er der dog teoretisk enighed om, at lokale oplevelser og virkelighedsopfattelser kan transformeres over i andre arenaer. Fra kritisk psykologi er det således en pointe fra Dreier (1999), at meningsfulde oplevelser og opfattelser, der er foretaget i en lokal kontekst, kan omdannes til nye meningsfulde handlinger i andre sammenhænge.

Værdien af identitets- og socialudvikling i relation til mennesker med funktionsnedsættelser

At arbejde med identitetsprocesser, der kan styrke menneskers selvsikkerhed, selvværd og selvfortælling kan anses som særlig betydningsfuldt for mennesker med CP, da de qua deres medfødte funktionsnedsættelse vil være bærende af et stigma fra starten til slutningen af deres liv (Goffman, 2009). Stigma betegner ifølge Goffman (2009) en miskrediterende egenskab hos en person, der indebærer at denne stemples med negativt ladede fordomme, der medfører en placering i en bestemt kategori med dertilhørende fordomme. I denne sociale proces, der er stærkt influeret af omgivelsernes reaktioner, kategorisering og bedømmelse, gælder nogle grundlæggende sociologiske mekanismer. Disse mekanismer består i, at den stigmatiserede tiltrækker sig ufrivillig opmærksomhed og efterfølgende bliver mødt af en social afvisning samt fraværende anerkendelse af potentielle positive egenskaber (ibid.). Et møde med omverdenen, der ikke blot er ekskluderende, diskriminerende og undergraderer ens sociale status, men som også kan medføre en devalueret selvforståelse, hvor den stigmatiserede internaliserer en forståelse af sig selv som værende en afviger (ibid.). Dette er særdeles uhensigtsmæssige udviklingsprocesser, der dog kan aflæses i undersøgelser, der viser hvorledes mange mennesker med CP både føler sig anderledes, ikke oplever at blive accepteret, ikke stoler på deres egen krop og at særligt kvinder med CP giver udtryk for lavt selvværd (Sandström, 2007; Horsman et al., 2010; Brunton & Bartlett, 2013; McLaughlin & Coleman-Fountain, 2014; Moltke Martiny, 2015; Shields et al., 2006).

Som skrevet i foregående afsnit kan ens selvopfattelse og identitet i en overordnet teoretisk ramme anses som værende årsagssammenhængene med ens deltagelses- og handlingsadfærd. I overensstemmelse hermed er der i relation til mennesker med funktionsnedsættelser, lavet undersøgelser og modeller, der netop afspejler og understreger denne dynamik. I et systematisk review fra 2016, præsenterer Imms mfl. således hvordan de har fortaget en analyse af sprogbrugen, definitionerne og konstruktionerne, der er anvendt i forskningsstudier af indsatser der fokusere på mennesker med funktionsnedsættelser og deltagelse. På baggrund af analysen er udviklet en definition af deltagelse samt fundet relaterbare koncepter, der er afgørende for selve deltagelsesprocessen. Til sammen benævner Imms mfl. (2017) disse tæt relaterbare begreber the family of participation-related constructs (fPRC), og definerer dem hver især som følger. Begrebet deltagelse anses som værende dækkende for en livssituation, hvor man både er tilstedeværende og samtidig aktivt involveret. Det væsentlige i denne sammenhæng er dog at Imms mfl. (2016) opstiller tre person-fokuserede komponenter som værende afgørende for selve deltagelsesprocessen. Som det første anses den involverede persons selvopfattelse som værende afgørende, ydermere er personens oplevelse af kompetencer i relation til den konkrete aktivitet vigtig, og som en sidste komponent er personens præferencer centrale. Dog er det en centrale pointe i artiklen fra Imms mfl. (2017), at disse komponenter ikke blot kan stimulere deltagelse, men at deltagelse også kan stimulere både selvopfattelsen, oplevelse af kompetence og ens præferencer. At rette fokus på denne sociale dimension kan anses som yderst betydningsfuldt i arbejdet med mennesker med CP, da flere studier viser, hvorledes både børn, unge og voksne med CP ofte finder det svært at deltage i sociale situationer samt indgå i diverse omverden arenaer såsom fritidsaktiviteter, uddannelse og beskæftigelse (Shikako-Thomas et al. 2008; Bottcher, 2010; Imms et al., 2008; Michelsen et al., 2014; 2017).

Set i lyset heraf vil indsatser med fokus på processer, der styrker identitet- og socialudvikling være yderst betydningsfuldt for mennesker med CP. I det følgende gives en indførsel i, hvorledes bevægelseskontekster kan fremme disse elementer.

Identitets- og socialudvikling i en idræt- og bevægelsesteoretisk ramme

Med udgangspunkt i den fænomenologiske og narrative forståelse, hvor selvopfattelsen og fortællingen bliver en prærefleksiv og levet bearbejdning af de handlingsoplevelser og perceptioner

individet

stimuleres

mødet

med

omverdenen,

kan

idræts29

bevægelsesaktiviteter være en værdifuld omverdenarena for både mennesker med og uden funktionsnedsættelser (Stelter, 1995; Kissow & Therkildsen, 2006; Duesund; 1993; 1995; Engelsrud, 1998). I arbejdet med identitets og socialt udviklende processer i en bevægelseskontekst for mennesker med funktionsnedsættelser har særligt bevægelsesbegrebet Adapted Physical Activity (APA) vundet indpas på internationalt plan. Et begreb der på dansk oversættes til Tilpasset Idræt og Bevægelse (TIB). APA skal forstås som et paraplybegreb, der er dækkende for mange forskellige bevægelsesarenaer. Herunder kan nævnes konkurrenceorienteret parasport, idræt i foreningsregi samt rehabiliterende, sundhedsfremmende, sygdomsforebyggende og socialpædagogiske bevægelsesindsatser (Sherrill & DePauw, 1997). Som overordnet formål har APA til hensigt at stimulere til empowerment og selvaktualisering via en proces, hvor måde fysiske, psykiske og sociale dimensioner styrkes gennem tilpasset idræt og bevægelse (Sherrill, 2004). I denne sammenhæng er det dog en væsentlig pointe fra Sherill (2004), at det er selve aktiviteten og konteksten der skal tilpasses deltagerens behov for at muliggøre aktiv deltagelse, og ikke deltageren der skal tilpasse sig idrætten og bevægelsen. APA retter sig således mod den enkeltes forudsætninger, og søger at være fleksibel i forhold til skabe inkluderende idræt og bevægelsesaktiviteter og -miljøer. I indsatsen sports camp som denne afhandling tager udgangspunkt i, er der et særligt fokus på APA

helhedsorienteret

rehabiliterende

kontekst.

tilpassede

idræts-

bevægelsesaktiviteter er således valgt og tilrettelagt med det formål, at stimulere til personlige, sociale og fysiske oplevelser og erfaringer, der kan stimulere til en mere styrket, selvstændig og meningsfuld tilværelse for deltagerne. En APA-tilgang kan anses som særlig betydningsfuld for mennesker med funktionsnedsættelser herunder mennesker med CP, idet det kan imødekomme nogle af de barrierer som mange oplever i de almene idræts- og bevægelsesmiljøer. Miljøer der hurtigt bliver en scene for nederlag og eksklusion idet tempoet bliver for højt, reglerne for rigide, omgivelserne og gruppen størrelse for uoverskuelige, udstyret ikke passer eller teknikken bliver for kompliceret. I modsætning hertil kan idræts- og bevægelsesaktiviteter, når de er didaktisk velplanlagte, gennemtænkte og tilpassede, muliggøre at langt de fleste deltagere vil kunne opnå selvforglemmende flowoplevelser, mestring og de hertil hørende positive kropslige, tanke- og følelsesmæssige respons. Tesen i forbindelse med sports camps er således at tilpassede idræt- og bevægelsesindsatser kan være et afgørende opmuntrende, konfronterende og transformerende redskab og vendepunkt til at skabe succesfulde oplevelser. Disse oplevelser kan muligvis give nye erfaringer, der kan udvikle og ændre

deltagernes blik på dem selv. Et blik der tilmed kan ændre deres motivation for deltagelse og engagement i nye handlingsoplevelser. Der er flere studier, der viser hvorledes en APA-tilgang til mennesker med funktionsnedsættelser herunder mennesker med CP kan have gavnlige identitets og socialt udviklende effekter. Her kan blandt andet nævnes et studie af Powrie mfl. (2015), der i et systematisk review undersøger meningen ved at deltage i fritidsaktiviteter for mennesker med fysiske funktionsnedsættelser. I studiet er samlet 14 studier, hvoraf langt de fleste fokusere på oplevelsen eller effekten af at deltage uorganiseret eller organiseret tilpasset idræt og bevægelse. Studiet finder at disse aktiviteter stimulerede til værdifulde elementer som en følelse af at have det sjovt, have frihed til at være og vælge, opdagelse, udvikling og opfyldelse af potentiale og social tilknytning og tilhørsforhold (Powrie et al., 2015). Ydermere finder studier, at deltagelse i både spontane og mere strukturerede idrætsfritidsaktiviteter samt deltagelse i terapeutiske programmer med fokus på fritidsaktiviteter, er medvirkende til en styrkelse af livskvaliteten for børn med funktionsnedsættelser (Shikako-Thomas et al., 2012; Dahan-Oliel et al., 2011). Da fokus i denne afhandling mere konkret er på APA i en campsammenhæng laves en mere uddybende litteratur gennemgang af indsatser, der fokuserer på intensive camp-lignende indsatser i afsnit 1.8. Som en afsluttende bemærkning skal det nævnes at APA-begrebet er aktuelt at anvende som overordnet begrebsramme i relation til de bevægelsesaktiviteter som indsatsen sports camps er bygget op omkring. Dog vurderes det at begrebet kan synes for overordnet til at forstå de konkrete bevægelsesprocesser, der arbejdes med på selve sports campen. I forhold til at forstå betydningen af den anvendte tilpassede idræt og bevægelse i denne konkrete campsammenhæng, er det således nødvendigt at beskrive nogle bevægelsesbegreber, der kan siges at hører under den overordnede APA-ramme. På campen anvendes således mere konkret tilpassede legeaktiviteter, almene idrætsaktiviteter og mere adventure prægede aktiviteter. Tre bevægelsesområder der alle hører under APA, men som bevægelsesaktiviteter kan være medskabende til meget forskellige udviklings- og læringsprocesser. Disse tre begreber beskrives mere indgående i relation til sports campen i afsnit 2.21. Med disse indgangsvinkler til idræt og bevægelse suppleres formålene vedrørende forbedringer af hjernens og kroppens nedsatte fysiske funktioner, med et formål om at idræts- og bevægelsesoplevelser potentielt kan styrke mennesker med CP’s opfattelse af de muligheder de har, med de evner og funktionsnedsættelser de har, i den verden som de lever i. I arbejdet med idræt og bevægelse er det dog væsentligt at have for øje, at de positive effekter ikke blot kommer af sig selv. Det kræver mange didaktiske overvejelser, et godt kendskab til 31

målgruppen samt en velovervejet professionel tilgang og relation at stimulere og motivere til ovenstående potentialer. Hvis ikke professionelle formår at skabe en stimulerende og motiverende relation, situation og bevægelseskultur, kan idræt og bevægelse i lige så høj grad være medskabende til social usikkerhed, skam, nederlag og bevægelsesubehag. Hvorledes disse didaktiske og relationelle aspekter gribes an af de professionelle i relation til sports campen uddybes ikke i denne afhandling, men er nøje beskrevet i camp-håndbogen (Andersen, 2016).

1.7 Fællesskabets betydning Idrætten og bevægelsen er centrum i arbejdet med de rehabiliterende processer i en APA-kontekst, men i de forskellige bevægelsesindsatser vil der typisk også være et særligt fokus på den sociale konstruktion som den tilpassede idræt og bevægelse foregår i. I en camp-sammenhæng er dette et element, der er helt centralt for de udviklingsprocesser der søges. I det følgende vil der derfor blive fremstillet pointer relateret til: hvorledes der kan skabes givende sociale fællesskaber, hvilken egenværdi det kan have at være en del af et socialt fællesskab samt hvilken merværdi det kan have at være en del af et givende socialt fællesskab.

At samle en gruppe mennesker danner ikke automatisk et givende socialt fællesskab. Dette er en proces der kræver en findsats. En metode kan være at skabe et praksisfællesskab (Wenger, 2004), som bliver et fælles tredje, der kan bygge bro mellem forskellige mennesker. Idrætten og bevægelsen har i denne sammenhæng vist sig at være et fremragende fællesskabsdannende praksisfællesskab af flere årsager. Ikke blot kan der være en fælles interesse, men idræt og bevægelse har nogle iboende fordele, der betyder, at disse i deres direkte form kan være relationsog fælleskabsstyrkende (Bugge et al., 2015). Særligt kerneelementer som tæt kropskontakt, latter, kommunikation, samarbejde, støtte og tillid vil fremme disse sociale potentialer (Winther, 2014; Peitersen, 2008; Rønholt, 2008). I forbindelse med opbygningen af et givende socialt fællesskab kan praksisfællesskabet dog ikke stå alene. Selve gruppesammensætningen af mennesker kan tilmed have en stor betydning. I relation hertil er det en velkendt strategi i indsatser til mennesker i forskellige sårbare eller udsatte positioner at søge at danne grupper af mennesker, der er i ligestillede situationer. Ifølge Goffman (2009) betegnes ligestillede som ”de egne”, da de er bærer af selvsamme stigma som en selv. De egne bliver således en gruppe af mennesker, som man kan spejle sig i, og som i modsætning til store dele af resten af samfundet refereres til som værende 32

sympatisk indstillede, da de gennem egne erfaringer ved præcist hvad det indbefatter at være et menneske der lever med det pågældende stigma. Det er ligeledes en pointe at disse fælles erfaringsdannelser vil kunne styrke skabelsen af et trygt miljø, hvor en følelse af accept, forståelse og tilhørsforhold kan opnås (ibid.). Alene disse anerkendende, empatiske og inkluderende sociale oplevelser kan være givende i sig selv, men anerkendte teoretiske perspektiver peger også på at disse sociale konstruktioner kan være fundament for yderligere udviklingspotentialer. Ifølge Deci & Ryan (1985; 2000) er denne følelse af fællesskab og tilhørsforhold helt central i deres SelfDetermination Theory. En teori der beskriver hvad der motiverer og driver mennesker til at udforske verden og dens muligheder. Et andet relevant teoretisk perspektiv præsenteres af Bandura (1977) i hans self-efficacy teori. Self-efficacy omhandler “[…] how people judge their capabilities and how, through their self-percepts of efficacy, they affect their motivation and behavior.” (Bandura 1982, p. 122). En persons forventninger til egne evner og handlekompetence kan således være helt afgørende for, hvorvidt en person vil engagere sig i de situationer og udfordringer denne står overfor. I relation til dette begreb præsenterer Bandura fire komponenter, der kan være medvirkende til hvorledes ens self-efficacy udvikles. En af disse komponenter benævner han vicarious experiences, hvilket refererer til læring gennem observationer af andres handlinger. En person kan således få en større tro på sig selv i konkrete situationer, ved at observere andre mestre lignende situationer. En væsentlig pointe i denne sammenhæng er dog at det er mere sandsynligt at den observerende oplever en styrket tro på sig selv, såfremt personen der observeres opfattes som ligestillet. Fællesskaber med ligestillede kan således være et trygt og motiverende socialt fundament, der skaber grobund for værdifulde udviklingsprocesser. I tillæg hertil findes der en række empiriske camp-studier som viser betydningen af et tilhørsforhold mellem ligestillede i en rehabiliterende kontekst for mennesker med funktionsnedsættelser. Disse studier præsenteres i det følgende afsnit sammen med de resterende camp-studier.

1.8 Camps som indsats for sårbare målgrupper På internationalt plan er camps som interventionsstrategi ikke noget nyt. Ramsing (2007) beretter således om, at Dr. Rothbrock allerede i år 1876 skulle have etableret en camp for skrøbelige drenge med henblik på at styrke deres sundhed. Siden den gang har antallet af sygdoms- og handicapspecifikke camps udviklet sig i tråd med at behandling og teknologiske fremskridt har forbedret betingelserne og mulighederne for mennesker, der lever med forskellige sygdomme og 33

handicaps. I dag findes der således camps for børn og unge med en lang række forskellige tilstande så som astma, kræft, diabetes, HIV, tarmsygdomme, hjerteproblemer, hudsygdomme, høre- og synsnedsættelser mfl. (Sendak et al., 2018). Grundet disse mange forskellige målgrupper, findes der tilsvarende mange studier, der belyser disse forskellige camps. Studier der er hensigtsmæssige at have kendskab til, for at kunne argumentere for relevansen af denne afhandling. I relation til denne afhandling hvor oplevelsesdimensioner og udviklingspotentialer søges belyst i en sports camp kontekst for mennesker med CP, synes det dog relevant afgrænse og fokusere søgning en smule. I det følgende vil der således blive lavet en gennemgang af studier, der undersøger og belyser de oplevelses- og udviklingspotentialer, der viser sig i en camp-kontekst for unge og voksne mennesker med et fysisk handicap i et bevægelsesmiljø. I arbejdet med at lokalisere relevante studier er der blevet søgt i databasen på Det Kongelige Bibliotek (REX) samt Google Scholar. I skemaet nedenfor kan ses de ord, der er blevet anvendt i søgningen. Ordene i de lodrette kolonner skal forstås som synonymer og har således en ”OR”betydning. Ordene anvendt i de vandrette kolonner er derimod rammesættende for et nyt begreb, og har hermed en ”AND”-betydning. Disability Cerebral Palsy

Young Adults Adolescent Teenager

Sport Physical activity Adapted Physical Activity Adventure Outdoor Wilderness

Camp Recreation Program Rehabilitation

Foruden søgninger på kombinationer af ovenstående ord, er der gjort brug af en sidste søgerunde ud fra relevante referencer, der fremgik i de allerede fundne studier.

1.81 Litteratur gennemgang

I de fundne studier er det blot to af dem, der udelukkende fokusere på mennesker med cerebral parese (Dawson & Liddicoat, 2009; Aggerholm & Martiny, 2017). Disse to studier præsenteres som de første.

I et studie af voksne med cerebral parese benytter Dawson & Liddicoat (2009) et kvalitativt undersøgelsesdesign og en fænomenologisk tilgang til at belyse, hvorledes 27 deltagere med forskellige grader og af cerebral parese oplever deres deltagelse i en ugelang aktivitets camp. Deltagernes havde alle flere års erfaringer med at være på camp – nogle helt op til 42 års erfaring. I undersøgelsen blev forældrene også inddraget for at få et yderligere perspektiv på 34

campoplevelsen. Temaerne der udgør deltagernes oplevelser er: 1) at være et respekteret medlem af et miljø, 2) et sted hvor man har det sjovt, 3) giver mulighed for at deltage i udendørs fritidsaktiviteter, 4) en uges uafhængighed og 5) et tiltrængt pusterum for både forældre og campdeltagere. Samlet set var det mest fremtrædende tema at være en del af et støttende miljø.

I studie af Aggerholm & Martiny (2017) undersøges det hvorledes unge med cerebral pareses oplever at være med på en 4-dages tilpasset vintercamp, hvor hovedaktiviteten var skiløb. Deltagerens oplevelser blev undersøgt gennem kvalitative fokusgruppeinterviews, hvor resultaterne blev analyseret i lyset af de kropsfænomenologisk begreber kropsskema og kropsbillede. Studiet viser, at deltagerne lærte at begive sig ud udfordringer på nye måder, fik kropslig kontrol i udfordrende situationer, udvidede deres forståelse for deres muligheder og lærte at forstå og acceptere sig selv.

Foruden disse to studier er der en række andre studier, der fokuser på camps som enten har blandede handicapgrupper eller som i overensstemmelse med de to ovenstående studier har blot en enkelt målgruppe samlet. Et af de største studier blev udgivet i 1997, hvor The National Camp Evaluation Project (Brannan, 1997) gav indsigt i en 3-årig national undersøgelse af 15 camps for børn, unge og unge voksne med forskellige handicaps. Denne undersøgelse evaluerede 1 uges organiserede outdoor camps, der havde til formål at stimulere til positive ændringer hos mennesker i forskellige aldre med forskellige typer af handicap. Forskerne inkluderede både kvantitative og kvalitative tiltag i deres undersøgelsesdesign. Undersøgelsens fund indikerer, at deltagerne oplevede positive ændringer, der kunne overføres til deres live efter camp. Disse ændringer bestod af øget uafhængighed samt bedre selvværd, kommunikationsevne, selvtillid og outdoor færdigheder. På baggrund af fundene konkluderer forskerne at et outdoor campophold på en uge kan være en nyttig metode til personlig udvikling af mennesker, der lever med et handicap.

Goodwin og Staples (2005) bidrog med et interessant perspektiv til litteraturen gennem deres fænomenologiske undersøgelse af en canadisk sommercamp-oplevelse for 9 unge med forskellige handicaps, herunder 5 der har cerebral parese. På trods af en målgruppe med forskellige handicaps, fandt forfatterne overensstemmende oplevelser blandt deltagerne. I deres tematiske analyse opstilles tre temaer. Som det første oplevede deltagerne ikke at være alene, hvilket var i kontrast til den følelse af isolation de ofte havde i deres hverdag. Som det andet havde de en følelse af at være mere selvstændige og stole mere på sig selv. Til sidst oplevede de campen som 35

et sted, hvor de fik mulighed for at opdage nye aktivitetsmuligheder samt nye forståelser af deres egne kropslige potentialer.

I denne undersøgelse undersøgte Ashton-Shaeffer, Gibson, Autry og Hanson (2001) via semistrukturerede interviews hvorledes 15 voksne med forskellige fysiske handicap oplevede at deltage i en 2-dags sport camp. Analysen, der er guidet af Foucaults terminologier, indikerer at deltagerne normalt vis oplever at bliver meget overvåget på grund af deres anderledeshed. I modsætning hertil oplevede deltagerne af deltagelsen i campens aktiviteter i et rummeligt miljø øgede deltagernes oplevelse af modstandsdygtighed og empowerment.

I en nyere kvalitativ undersøgelse søger Nyquist et al. (2019) at opnå en bredere forståelse af, hvordan børn mellem 10 og 13 år med forskellige handicaps oplever at deltage i selvudvalgte tilpassede idræts- og bevægelsesaktiviteter under et tre-ugers grupperehabiliteringsprogram på det norske Helsesportsenter i Beitostølen. Et yderligere mål var at undersøge, hvordan de nye færdigheder og erfaringer fra opholdet kunne overføres til meningsfuld deltagelse i deltagerens lokale miljø. I studiet afledes fem hovedtemaer: 1) "At lære og vise andre nye aktiviteter", 2) "tilhørighed, solidaritet og venskab", 3) "aktivitet og nydelse af deltagelse", 4) "deltagelse på mine egne vilkår" og 5) "overførsel til det lokale miljø derhjemme". Fundene for forfatterne til at konkludere, at det rehabiliterende intensive ophold med ligestillede skabte en ramme, der resulterede i mestring, venskab og glæde der kunne overføres til deres lokale miljø. Et kvantitativt studie af Røe mfl. (2018) har tilmed undersøgt denne tre-ugers APA-baserede rehabiliteringsindsats. Denne undersøgelse inkluderede deltagere over 17 år og sammenlignede dem med personer der stod på ventelisten. Resultaterne indikerede at indsatsen forbedrede deltagernes fysiske og mentale funktion. Forbedringen var relateret til reduceret smerte, forbedret motivation og self-efficacy. Fundene får forfatterne til at konkludere at et APA-baseret rehabiliteringsprogram

kan

forbedre

mennesker

med

fysiske

funktionsnedsættelsers

funktionsevne. To yderligere studier har set på langtidseffekten af netop denne indsats. Disse to opfølgningsstudier konkluderer, at indsatsen har potentialet til at motivere deltagerne til at opretholde niveauet af fysisk aktivitet i hverdagen Baksjøberget et al. 2017). Ydermere viser et studie at indsatsen et år efter endt ophold har medvirket til en signifikant øgning i både fysisk og mental funktionsevne (Preede et al., 2015).

I et yderligere norsk studie undersøgte Standal & Jespersen (2008), hvorledes voksne kørestolsbrugere oplevede at en gruppe af ligestillede kunne medvirke til læringsprocesser på det 2,5 uge lange rehabiliterende bevægelsesophold. Via observationer og semi-strukturerede interviews fremkom fire temaer. Som det første viste studiet at deltagerne i høj grad lærte mange nye teknikker og færdigheder ved at arbejde sammen og observere hinanden. Herudover havde det stor betydning, når både deltagere og instruktører var ligestillede og hermed forstod hinanden meget bedre. Et tredje afgørende tema omhandlede, at deltagerne blev bedre til at være kritiske overfor de ting de blev præsenteret for i rehabilitative sammenhænge samt klogere på dem selv og deres liv, ved at indgå i diskussioner og erfarings- og meningsudvekslinger med de andre deltagere. Det sidste tema omhandler, hvordan deltagerne sammen danner et fælles sprog, der var unikt for dem som kørestolsbrugere.

I endnu et fænomenologisk studie undersøger Goodwin et al. (2011), den sociale betydning af at deltage i en ugelang sports camp for unge med synshandicap. Erfaringerne fra 13 unge i alderen fra 9 og 19 år blev samlet ved brug af interviews og feltnotater. Den tematiske analyse medførte tre temaer: 1) Forbundet. Dette tema dækker over den delte følelsesmæssige forbindelse mellem deltagerne, når de blev forbundet til andre med et synshandicap 2) Nå ud. Dette dækker over oplevelsen af at campen skabte et landskab, der gjorde det muligt for deltagerne at nå ud og udforske deres tanker, fantasi og personlige grænser. 3) Modstand og frigørelse. Dette tema dækker over et komplekst forhold mellem deltagere og professionelle. På den ene side var de professionelle med til at skabe et succesorienteret og trygt miljø, men samtidig var de også med til at begrænse deltagernes mulighed for selvstændighed. Disse temaer for forfatterne til at konkludere, at oplevelsen af at være i en gruppe med ligestillede i en understøttende sportslig kontekst var særdeles betydningsfuld, til trods for oplevelsen af at ens evner blev betvivlet af de professionelle.

I 2015 undersøgte Devine, Piatt & Dawson forholdet mellem social accept og sundhedsrelateret livskvalitet (HRQL) for unge mennesker med hørevanskeligheder, der deltog i en sommercamp designet specielt til dem. Denne undersøgelse fandt, at social accept og HRQL-score til sammenligning med pre-camp-testen var højere både efter campen samt i opfølgningstesten, der blev fortaget 10 uger efter.

I et studie fra 2010 (Devine og Dawson) undersøges effekten af en uges lang sommerlejr på selvværd og social accept for børn og unge med kraniofaciale forskelle. Rosenberg37

selvværdsskala og en indikator for social accept blev anvendt før, lige efter og 6-8 uger efter campens afslutning. Til sammenligning med ovenstående studie indikerede resultaterne signifikante gevinster i begge variabler i slutningen af campen. Dog viste studiet også at stigningerne i selvværd og social accept viste en stor spredning 6-8 uger senere, hvorfor ingen længerevarende effekt kunne konkluderes.

Andre undersøgelser har ligeledes undersøgt oplevelsen og effekten af at være på camp. Disse camps adskiller sig imidlertid i den forstand, at de er designet som integrerede indsatser, hvor personer med og uden et handicap deltager i campen sammen.

En af disse undersøgelser (Anderson et al., 1997) rapporterer om hvorledes en integreret udendørs adventurecamp kan medvirke til at stimulere positive forandringer for mennesker med og uden et handicap over en længere periode. Ved at anvende forskellige kvantitative og kvalitative metoder fandt denne longitudinelle undersøgelse adskillige ændringer i den 2 ½ -årige periode. Studiet fremhæver især en stigning i relationsudvikling, outdoor færdigheder og adskillige livskvalitetsindikatorer som værdifulde resultater af deltagelse i dette wilderness adventure program. I en kvalitativ undersøgelse af Devine & O’Brien (2007) blev 8 deltagere i alderen 12-16 år med og uden et handicap inkluderet i studiet. Deltagernes handicap inkluderede blandt andet cerebral parese. Forskningsdesignet omfattede brugen af interviews og analysen blev foretaget ved brug af kontakt-teori. Fundene indikerede at campdeltagerne både havde positive og negative holdninger til den inkluderende campoplevelse. På den ene side medførte campen en kontakt til de andre, der både blev oplevet som autentisk og tilmed stimulerede en oplevelse af at blive accepteret som den man er. På den anden side havde kontakten dog også negative nuancer, idet flere af deltagerne med et handicap følte at kontakten blev oplevet som påtaget og konstrueret.

Som et sidste studie i denne litteratur gennemgang skal nævnes en undersøgelse af en integreret wildernesscamp af McAvoy et al. (2006). I dette studie søger forfatterne at forstå, hvordan deltagere der har et handicap, overførte de oplevelser og udviklingspotentialer der blev opnået på campen tilbage i deres hverdag. Forskerne valgte at interviewe en gruppe på 14 deltagere med forskellige handicaps seks måneder efter campoplevelsen. Resultaterne antydede, at deltagere med handicaps var i stand til at overføre deres wildernessoplevelser til deres arbejde, outdoor færdigheder, deres familieliv og til hverdagens stressende og udfordrende situationer. De fleste 38

deltagere berettede desuden om højere niveauer af motivation og øget selvtillid i forhold til at mestre livet som en effekt af deres campoplevelse.

På baggrund af litteraturgennemgangen kan det konkluderes, at der i løbet af de sidste 20 år er kommet større fokus på hvorledes mennesker med forskellige handicaps oplever at deltage på en camp. Dog er der ikke mange studier, der har fokuseret på camps alene for mennesker med CP. I de fleste studier fremhæves særligt det sociale miljø med ligestillede som noget særligt værdifuldt. Ligeledes nævner flere studier hvorledes deltagelsen i de tilpassede bevægelsesaktiviteter har medført til nye færdigheder og oplevelser af sig selv. For at forstå disse oplevelser bedre, synes det relevant at denne afhandling søger at forstå disse elementer mere i dybden, så disse elementer i fremtiden kan sættes i spil mere intentionelt i rehabiliteringssammenhænge for mennesker med CP og andre funktionsnedsættelser. Herudover synes litteraturen vedrørende hvorledes deltagerne oplever at en camp sætter spor i den efterfølgende periode at være mindre belyst. En bedre forståelse af denne udviklingsproces vil derfor ligeledes kunne bidrage med nye betydningsfulde indsigter. En pointe der også fremhæves i et review af Henderson et al. (2007), hvilket får forfatterne til at opfordre fremtidige studier til at fokusere herpå.

2. Forskningsindsats – sports camps Dette forskningsprojekt omhandler indsatsen ’Sports camp for mennesker med CP’. Det konkrete sport camp-koncept, denne afhandling tager udgangspunkt i er udviklet af Elsass Fonden, hvor undertegnede har været primær konceptudvikler – en position, jeg beskriver og diskuterer i metodeafsnit 3.2 ’Forskerrolle – praktikerforsker’. Da selve camp-konceptet adskiller sig i indhold, opbygning og formål fra de camps, der er beskrevet i det foregående afsnit, vil der i det følgende blive beskrevet, hvorledes denne indsats er opbygget rent praktisk, teoretisk og metodisk.

2.1 Praktiske rammer På et praktisk plan er alle sports camps bygget op omkring de samme rammer. En camp er således en afgrænset periode på typisk fire dage, hvor deltagerne overnatter på campen i deres tildelte værelse, spiser alle måltider sammen og deltager i alle dagens planlagte aktiviteter. Gruppestørrelsen kan variere, men er typisk på 10-20 deltagere med CP. De forskellige camps er opdelt således, at deltagerne er sammen med nogle, der nogenlunde er på deres egen alder og fysiske funktionsniveau. Foruden deltagerne er der et tværfagligt team bestående af eksempelvis idrætsuddannede,

fysioterapeuter,

ergoterapeuter,

eller

psykologer

med

idrætsfaglige

kompetencer. Det faglige fokus i disse camps er at skabe tryghed, bevægelsesglæde, optimisme og succes samt at være så kreativ, løsnings- og ressourceorienteret som mulig. Selve programmet er sammensat således, at der på en dag typisk er to til tre bevægelsesaktiviteter og to samlinger. Alle bevægelses- og idrætsaktiviteter er forskellige og har til formål at stimulere til forskellige psykosociale aspekter – dette uddybes senere. Samlingerne, der ligger morgen og eftermiddag, har primært tre formål: 1) De fungerer som et strukturelt samlingspunkt, hvor dagens program kan præsenteres, vigtige beskeder kan gives, og gruppen kan stille opklarende spørgsmål. 2) De skaber et rum, hvor fagpersonerne kan fornemme, hvordan de enkelte deltagere har det, og hvad de tænker om dagens aktiviteter (om morgenen) og hvordan de oplevede dem (om eftermiddagen). Man kan sige, at samlingerne tjener som en lille forventningsafstemning og erfaringsudveksling, der kan guide fagpersonerne i forhold til, om der er nogle deltagere, de skal være særligt opmærksomme på. 3) Samlingerne bruges også til at rette fokus mod et specifikt tema, det kunne være: grænser, kreativitet, venskab, krop-tanke-samarbejde, indstilling eller kommunikation. Det valgte tema sætter fokus på noget, der støtter op omkring de potentialer og

budskaber, der ligger i dagens aktivitetsprogram. På denne måde får deltagerne noget viden og nogle mentale, praktiske eller sociale redskaber, som de kan tage med sig over i aktiviteterne. På grund er forskellige målgrupper (alder og fysisk funktionsniveau) er temaerne til samlingerne blevet formidlet meget forskelligt. Dette betyder at det ikke præcist kan gengives og rekonstrueres, hvorledes disse er blevet afholdt. Helt overordnet er det dog væsentligt at påpege, at disse reflekterende samlinger tilmed fungerer som en læringssituation, hvor der i større eller mindre grad dannes et fælles sprog for det der sker på campen. Denne sprogbrug har tilmed afspejlet sig i nogle af interviewene, hvilket nærmere omtales metodeafsnit 3.41.

I dette forskningsprojekt er der taget udgangspunkt i fire camps, der alle er bygget op i henhold til de samme teoretiske og metodiske rammer, men som i praksis adskiller sig en smule fra hinanden. Som det første afholdes de forskellige steder, for det andet er aldersgrupperne forskellige og for det tredje divergerer graden af deltagernes fysiske funktionsniveau på de enkelte camps.

De fire camps: Camp 1 Camp 2 Camp 3 Camp 4

Antal deltagere 20 16 11 10

Lokation Elsass Fonden Elsass Fonden Egmont Højskolen Club La Santa

Alder 10 - 13 år 14 - 18 år 10 - 17 år 30 - 60 år

Tilstand Kan gå (GMFCS I-II) Kan gå (GMFCS I-II) Bruger kørestol (GMFCS III-IV) Kan gå (GMFCS I-II-III)

2.2 Teoretisk og metodisk fundament Sports camps søger at stimulere til en udvikling eller fastholdelse af resiliens. Et begreb, der tillægges mange betydninger og arbejdes med på flere forskellige måder, hvorfor det i det følgende vil blive præciseret, hvordan det benyttes i sports camp regi. Som overordnet begreb betegner resiliens dynamiske processer, hvor mennesker, en gruppe, en organisation, et samfund eller et miljø klarer sig tilfredsstillende på trods af stor belastning og modgang (Jacobsen, 2014). Begrebet benyttes således både inden for biologi, fysik, økonomi, og psykologi, hvoraf sidstnævnte område er omdrejningspunkt i denne indsats. I den psykologiske litteratur er der mange definitioner af fænomenet resiliens, dog har de flest det tilfælles, at de omhandler en proces, hvor et menneske, der lever et liv med modgang og ugunstige omstændigheder, på trods heraf klarer sig tilfredsstillende (Rutter, 2002; Luthar, 2003; Ungar & 41

Liebenberg, 2013; Hjemdal et al., 2006). Mere konkret tages der i dette projekt udgangspunkt i en definition fremsat af børnepsykiateren Michael Rutter: ‘- processer, der bevirker, at udviklingen når et tilfredsstillende resultat, til trods for at barnet har erfaringer med situationer, der indebærer en relativ høj risiko for at udvikle problemer eller for afvigelser’ (Rutter, 2002, s. 10) Med udgangspunkt heri tager resilienstanken en plads i udviklingspsykologien – der i overensstemmelse med de neuroplastiske principper – arbejder ud fra overbevisningen, at mennesket udvikler sig gennem hele livet. Resiliens anses således ikke for at være en egenskab hos den enkelte, men et udviklingspotentiale og en proces alle mennesker som udgangspunkt har mulighed for, ”[…] hvilket betyder, at resiliens udvikler sig over tid og afhængigt af det dynamiske samspil mellem individ og den omverden og de fællesskaber, som den enkelte deltager og indgår i.” (Jacobsen, 2014, s. 29) I relation til definitionen og området som helhed, synes det relevant at uddybe og forholde sig til enkelte elementer, der kan synes vage og uklare.

2.21 Processer

Proces er et nøglebegreb i en resilienssammenhæng, da det tydeliggør, at udviklingen ikke sker af sig selv, men at der aktivt skal gøres noget, for at opnå en bedring af tilstand. Hvad disse processer skal indeholde, er dog mindre tydeligt. Som teoretisk fundament og ramme i en sports camp-sammenhæng er der taget udgangspunkt i tre modeller: Beskyttelses-, kompensations- og udfordringsmodellerne, der anses for at kunne fremme udviklingen af resiliens i en given proces (Garmezy et al., 1984; O’Leary, 1998; Borger, 2010). På campen er disse tre modeller indtænkt i alle campens aspekter. I camp-håndbogen (Andersen, 2016) er der således gjort rede for, hvorledes både den professionelle relation, gruppen af deltagere, aktiviteterne og campens fysiske og kulturelle rammer støtter op omkring de forskellige beskyttende, kompenserende og udfordrende processer. I nedenstående uddybes det, hvad de tre teoretiske resiliensmodeller indebærer på et generelt plan, samt hvorledes de tre modeller er implementeret i relation til de tilpassede idræts- og bevægelsesaktiviteter der anvendes på campen. For en uddybning af refleksionerne bag den professionelle relation og tilgang, gruppen af deltagere og rammerne på campen henvises der som nævnt til Camp-håndbogen (ibid.), hvor alle refleksioner og teoretiske perspektiver bag campen er nøje beskrevet. 42

Beskyttelsesmodellen – legende holdaktiviteter

Beskyttelsesmodellen bygger på, at beskyttende faktorer kan være med til at øge kompetenceudvikling og selvværd. I denne sammenhæng synes det vigtigt at præcisere, at beskyttende faktorer ikke betyder, at mennesker i sårbare positioner skal skærmes fra risiko, udfordring og konflikter. Ordet ’beskyttelse’ skal nærmere forstås som skabelsen af elementer, der kan skabe et trygt fundament hos den enkelte. I camp-regi anvendes derfor ordet tryghed fremfor beskyttelse. I praksis anvendes der altid lege, teambuilding og holdaktiviteter den første dag på campen, da disse aktiviteter særligt har nogle relationelle kvaliteter, der kan medvirke til at fremme det ønskede tryghedsskabende fundament (Peitersen, 2008; Wikman et al., 2018). Legene er nøje udvalgt, med det formål at fungere som icebreakers i en ny og lidt usikker social gruppe. Gennem en fri humoristisk stemning og nær kropskontakt er målet således at stimulere til tillid, tryghed og samtidig udforskes intime, personlige og sociale grænser deltagerne imellem (Peitersen, 2008; Winther, 2008). Teambuilding er som ordet hentyder til, en metode til at bygge et hold eller en gruppe op. Aktiviteterne er derfor baseret på samarbejde, kommunikation og dynamiske synergieffekter, der kan danne fælles klangbund og stimulere til vellykket fælles opgaveløsning, hvilket potentielt kan styrke relationerne deltagerne imellem (Henriksen et al., 2007; Stelter, 1999). Kompensationsmodellen – almene aktiviteter

Kompensationsmodellen indebærer, at der iværksættes tiltag, der kan støtte og imødekomme elementer, der umiddelbart mangler i målgruppens liv. Sports campen søger dog nærmere at fremme komplementerende fremfor kompenserende elementer. En nuance, der bygger på, at campen ikke direkte søger at erstatte det, mennesker med CP ikke har, men derimod kan være medskabende til at fremme elementer og ressourcer, der kan supplere, styrke og udvikle den position, de allerede er i. På campen er aktiviteterne på anden- og til dels tredjedagen typisk valgt med det fokus, at de skal stimulere til nogle anderledes kropslige erfaringer, end deltagerne er vant til. Aktiviteterne må på dette stadie gerne stimulere til en umiddelbar opfattelse af kompleksitet, men de skal ikke stimulere til stor nervøsitet og frygt. Processen skal gerne være drevet af bevægelsesglæde, lyst og nysgerrighed. Igennem mødet med det anderledes er ambitionen, at deltagerne gennem kreative og succesfulde handlinger udvider deres horisont og mulighedsrum i forhold til, hvad de kan med deres kroppe. De skal få en oplevelse af kompetence i fremmed terræn, der kan stimulere til en styrket selvopfattelse samt motivation, flow og nysgerrighed i forhold til nye kropslige arenaer 43

(Csikszentmihalyi, 1991; Bandura, 1997; Deci & Ryan, 1985). For at stimulere hertil vælges nogle forholdsvis almene idrætsaktiviteter, som mange af dem ville kunne dyrke ude i de almene idrætsforeninger. Dog er det en væsentlig pointe, at de forskellige tilpassede idræts- og bevægelsesaktiviteter bør vælges med henblik på, at deltagerne ikke er afhængige af hinanden for at lykkes. Aktiviteterne er således individuelle og nemme at pro- og regrediere, så de kan matche de enkelte deltageres kompetencer og udviklingsniveau, og herigennem stimulere til en vellykket handling (Vygotsky, 1978). Aktiviteterne kunne i denne sammenhæng være trampolin, kampsport, racerunning, spinning/cykling eller fægtning mm. Selve aktiviteten er central, men mindst lige så væsentligt er det, at der bliver opbygget de rigtige rammer og en hensigtsmæssig kultur omkring aktiviteten. Det er således væsentligt, at deltagerne – på trods af den individuelle disciplin – oplever at være i et støttende og optimistisk fællesskab, hvor de kan lade sig inspirere og motivere af hinanden i processen (Bandura, 1997; Deci & Ryan, 1985). Ligeledes er det afgørende, at der opbygges en kultur, hvor anerkendelsen ligger i selve processen med forsøg, eksperimenter og nederlag fremfor i selve resultatet. Ambitionen er at motivere deltagerne til at være nysgerrige, kreative og eksperimenterende i mødet med det uvante, fremfor at forholde sig passivt på baggrund af erfaringer og tillærte normalitetsforståelser i relation til, hvordan aktiviteterne skal og bør udføres. Udfordringsmodellen – adventure aktiviteter

Hensigten bag udfordringsmodellen er, at mennesker vil blive stærkere og bedre i stand til at være i nye udfordringer, hvis de bliver passende udfordret og oplever at kunne håndtere udfordrende situationer. På campen er udfordringer således en essentiel del af opholdet. De udfordrende discipliner introduceres for deltagerne i slutningen af campen, når tryghedsfundamentet er bygget så meget op, som det kan lade sig gøre inden for campens rammer. Aktiviteterne, der vælges, er typisk adventure og outdoor-inspirerede discipliner, som eksempelvis klatring, kajak, minitriatlon, militærforhindringsbane og udspring fra vipper. At arbejde med denne type aktiviteter i et rehabiliterende øjemed benævnes i litteraturen ofte som Outdoor Experiental Therapy (OET) (Ewert, McCormick & Voight, 1999;2001). Et bevægelsesbegreb, der refereres til som værende en samlet betegnelse, der også omfatter de to relaterbare bevægelsesbegreber: wilderness therapy og adventure therapy (ibid.). Dette er bevægelsestilgange der alle er kendetegnet ved strukturerede bevægelsesprogrammer, der typisk benytter sig af udendørs og risikobetonede aktiviteter til at stimulere til direkte selverfarede oplevelse (ibid.). OET har således sine rødder i experiential education and learning (Dewey, 1938; Kolb, 1984), hvor intentionen er at stimulere til forandringsprocesser i deltagerne gennem direkte oplevelser og en refleksiv bearbejdning heraf. 44

Mere konkret søger disse OET-programmer typisk at styrke deltagernes personlige udvikling gennem mestring af bevægelsessituationer, der er præget af frygt, usikkerhed og uforudsigelighed i et tillidsfuldt og trygt miljø (Nadler & Luckner, 1992). Ambitionen med adventureaktiviteterne på campen er i overensstemmelse at stimulere til, at deltagerne får nogle oplevelser og erfaringer, der kan konfrontere deres eksisterende selvopfattelse og -fortælling. Deltagerne stilles således over for en konfrontation, der har potentiale til at styrke deres tro på egne evner i ukontrollerede og udfordrende situationer, og ligeledes kan udvide deres muligheds- og handlerum. I denne situation, hvor den enkelte deltagers selvopfattelse sættes i spil, bliver de andre deltageres støtte, samt fagpersonernes tro på projektet altafgørende for processen. Når der arbejdes med den store udfordring, handler det således lige så meget om at arbejde på den trygge, støttende og optimistiske sociale kontekst.

2.22 Tilfredsstillende resultat

At der i definitionen af resiliens henvises til et tilfredsstillende resultat, er en meget vag betegnelse. Der er derfor opsat en række kriterier i arbejdet med sports camp, der viser hvilke udviklingspotentialer, der ligger i konceptet. På et overordnet plan er konceptet skabt med henblik på at åbne op og styrke det blik, deltagerne har på sig selv og de muligheder, de har i verdenen. Et blik, der i denne sammenhæng refererer til en helhedsorienteret forståelse, og derfor både kan omfatte de tidligere beskrevne fysiske, sociale og psykologiske udviklingspotentialer. Ambitionen er ikke, at alle deltagere skal rykke sig på alle parametre, men med reference til resiliensdefinitionen, så er det afgørende for et tilfredsstillende resultat, at deltagerne rykker sig på de områder, som de har erfaringer med kan indebære en relativ høj risiko for at udvikle problemer, og hermed kan opleves som hæmmende for deres liv og udvikling.

2.23 Problemer, afvigelse og modgang

At udvikle resiliens bliver sat i kontrast til en situation, der er præget af modgang eller en høj risiko for afvigelse og problemer. En risiko som mennesker med ”Fysisk og somatiske betingede belastninger (for eksempel handicap eller somatisk sygdom med hyppig og lange indlæggelser)” (Jørgensen et al., 1993, p. 10), per definition er en del af. På den ene side legitimerer dette benyttelsen af begrebet i relation til mennesker med CP, men samtidig synes det fordomsfuldt at antage, at mennesker er i en risikofyldt situation, blot fordi de har et handicap. Når begrebet bruges i denne afhandling, er det således ikke med antagelsen om, at mennesker med CP per definition 45

er i risiko, men derimod med en forståelse af, at begrebet og hertil hørende modeller kan fungere som teoretiske rammer i en praksisindsats, som søger at styrke mennesker – med eller uden CP – i den position de er i.

Med en præsentation af konceptet sports camps, opsummeres det, at afhandlingen for det første søger at belyse, hvordan deltagerne oplever at deltage i en sports camp. For det andet søges en belysning af de udviklingsprocesser, der viser sig hos deltagerne på baggrund af deltagelse i campen. Med denne orientering vil de metodologiske tiltag, overvejelser og refleksioner i relation til forskningsprojektet blive gennemgået i det følgende afsnit.

3. Metodiske tiltag og overvejelser At sikre en høj kvalitet i kvalitative studier hænger nøje sammen med at skabe transparens omkring forskningsprocessen, metodologisk refleksion og at der er en tydelig sammenhæng mellem målet og ambitionen med undersøgelsen og de anvendte metodiske fremgangsmåder (Thagaard, 2004; Olsen, 2003; Tanggaard & Brinkmann, 2015;). Det anses derfor som nødvendigt at beskrive de tiltag og overvejelser, der ligger til grund for dette projekt.

Kvalitativ forskning betyder almindeligvis, at der er en interesse for, hvordan noget siges, gøres, fremtræder, opleves eller udvikles (Brinkmann & Tanggaard, 2015). En interesse der – med henvisning til problemformuleringen – netop er i dette projekt, hvor der ønskes en indsigt i deltagernes oplevelse af at deltage i en sports camp, samt hvilke udviklingsprocesser, der viser sig i tiden efter camp. I det følgende afsnit vil det blive fremlagt, hvilken rolle jeg har haft som forsker, hvilke konkrete kvalitative metoder, der anvendes i processen, hvorledes det empiriske materiale er blevet analyseret samt givet en kort beskrivelse af de unge og voksne med CP, der har deltaget i forskningsprojektet. Løbende vil det blive beskrevet hvilke overvejelser, der ligger til grund for de forskellige til- og fravalg. Ydermere vil det undervejs blive diskuteret hvilke fordele og ulemper, der kan være forbundet med de enkelte elementer. Til at starte med gives dog først en kort præsentation af projektets videnskabsteoretisk position.

3.1 Fænomenologisk indgangsvinkel Da projektet er orienteret mod deltagernes subjektive oplevelser, tages et fænomenologisk udgangspunkt, da denne videnskabsteoretiske retning søger at skabe viden ved at belyse erfaringer og oplevelser, som de melder sig for bevidstheden (Jacobsen et al., 2015; Giorgi & Giorgi, 2003; van Manen, 1997;2016). Fænomenologi kan således oversættes til at være ”(…) læren om det, der kommer til syne eller fremtræder for en bevidsthed” (Jacobsen et al, 2015, s. 217). I henhold til dette projekt bliver det således interessant at undersøge hvilke bevidsthedsfænomener der fremtræder, når deltagerne er en del af en sports camp for mennesker med CP, samt få en forståelse for, hvilket meningsindhold disse afspejler.

For at nå ind til deltagernes bevidsthedsfænomener bliver en orientering mod deltagernes intentionalitet væsentlig, da det er gennem denne, vi får adgang til fænomenerne, som de fremkommer for deltagerne. Intentionalitet, henviser således til en rettethed mod verden, hvilket betyder at deltagernes bevidsthed aldrig kan forstås isoleret, men derimod altid vil bestå af en relation mellem deltagerne der oplever, og selve sports campen der opleves. En individ-verdenrelation der i fænomenologien gør sig gældende som livsverdenen (Birkler, 2009). Livsverdenen, er den verden som deltagerne på sports campen oplever i et første-person perspektiv. En subjektiv og prærefleksiv erfaringsverden, der for dem altid vil være en lokal sandhed, og som der derfor ikke bliver stillet spørgsmålstegn ved (Zahavi, 2003). I belysningen af deltagernes livsverden bliver det med fokus på tilstanden, det vil sige selve oplevetheden, som skal undersøges i den verden som deltagerne udlever, oplever og erfarer (Birkler, 2009). Det er således ikke objektet i form af sports camps som koncept, der er interessant, men derimod selve oplevelsen af at deltage på en sports camp. Bevidsthedsfænomener, kan associere til rene kognitive processer. Dog er kroppen i et fænomenologisk perspektiv helt central. Den franske filosof Merleau-Ponty (1962/2002) introducerer med begrebet den levede krop en kropslig erkendelsesform, der går forud for tanken og den intellektuelle forståelse. Med den levede krop som kilde til erkendelse, bliver bevidsthedens intentionalitet set som funderet i en forudgående prærefleksiv kropslig intentionalitet. Deltagernes kroppe anses hermed for at rumme mere information og viden, end de umiddelbart kan sprogliggøre - en viden der har afgørende betydning for, hvilke erkendelsesmuligheder der åbner sig for dem. Rent metodisk betyder dette, at det bliver helt afgørende at benytte metoder, der kan medvirke til at åbne op for deltagernes kropslige sansende oplevelser og erfaringer, så både de betydninger og meninger der ligger eksplicit og implicit i deltagernes camperfaring får en lyd. Hvorledes dette gribes an i praksis berøres i afsnit 3.4 ’Metodiske tilgange’.

Inden de konkrete metodiske tilgange beskrives, gives en præsentation og hertil hørende refleksioner i relation til min rolle som forsker samt en kort introduktion til deltagerne, der har været involveret i projektet.

3.2 Forskerrolle – praktikerforsker Som nævnt i første linje i dette metodekapitel, er det et helt centralt kvalitetskriterie, at der skabes transparensen omkring min egen rolle som forsker. Denne vigtighed bliver kun skærpet af, at jeg i dette projekt har haft en tilgang som praktikerforsker. En forskningstilgang, der består i, at man som professionel forsker i sin egen praksis (Winther, 2015; Jarvis, 2002). En forskning i egen praksis, der typisk opstår, når praktikeren begynder at stille spørgsmål, der ikke kan besvares med metoder som eksempelvis målinger og spørgeskemaer. Dette har også været tilfældet i dette projekt, hvilket tydeliggøres i det kommende afsnit. Den primære årsag til valg af praktikerforskningstilgangen er dog, at denne anses som gavnlig og yderst relevant i relation til problemformuleringen. En relevans, der skal ses i sammenhæng med at praktikerforskning kan benyttes ”(…) til at undersøge idrættens og bevægelsens potentialer for at understøtte personlige og sociale udviklingsprocesser eller til at undersøge nye undervisnings- eller behandlingsmetoder og fagområder, der senere kan implementeres direkte i praksis.” (Winther, 2015, p. 173).

Praksissen, der undersøges i dette projekt, er sports camps, og min involvering heri spænder over flere snitflader, og tydeliggøres i det følgende.

3.21 Har camps et potentiale?

Som det første har jeg været med helt fra starten, da konceptet blev bragt til Elsass Fonden i 2013 af professor Jens Bo Nielsen og fysioterapeut og lektor Jakob Lorentzen. Begge havde været på en konference, hvor de var blevet inspireret af et projekt, der lavede cirkus- pirat- og tryllecamps for børn med handicaps. Et projekt, der havde til formål at bruge nogle motiverende og legende aktiviteter – set i relation til de klassiske fysioterapeutiske tiltag – til at fremme børnenes motoriske evner. Ved at lave et intensivt camp-forløb med fægtning, jonglering mm. var tesen, at børnenes håndmotoriske funktioner kunne styrkes. Ligeledes var intentionen med sports camps på Elsass, at børnene ved at deltage i et intensivt forløb kunne forbedre konkrete fysiske kompetencer. Dog endte sports campens aktiviteter med at blive tilrettelagt således, at deltagerne blev tilbudt et bredt udvalg af aktiviteter, der havde til hensigt at arbejde med hele kroppen frem for specifikke fysiske funktioner. Et valg der blev afgørende for, at der ikke kunne laves meningsfulde fysiske funktionelle effektmål efter campen. Dog observerede jeg som daværende instruktør og praktiker noget andet end potentialet for fysiske effektmål – jeg så venskaber, der blev knyttet, børn der for første gang følte sig som en del af et ligesindet fællesskab og store succesoplevelser. Elementer, der ifølge mig ikke kunne ignoreres. Daværende direktør Peder 49

Esben Bilde, var heldigvis nysgerrig på dette nye potentiale, og jeg blev tilbudt en stilling, hvor jeg dels skulle lave en camp-håndbog, hvor jeg teoretisk forklarede, hvordan camps skulle bygges op, så de kunne styrke målgruppen indenfor de mere psykosociale områder. Og dels skulle jeg sammen med min kollega Camilla Voigt medvirke til, at teorien blev overført til praksis på de kommende sports camps. Camp-håndbogen (Andersen, 2016) udkom, og har siden dannet grundlag for hvordan sports camps i Elsass Fonden praktiseres. I dette projekt forsker jeg således ikke blot i min egen praksis, hvor jeg har været en kombination af organisator, hjælper, instruktør og leder af alle sports camps, men forsker også i et koncept, jeg teoretisk har opbygget fra bunden. At være tydelig omkring min store involvering i alle dele af sports camps, anser jeg som afgørende, da det kan medføre, at jeg har nogle interesser, der potentielt kan være i konflikt med god forskerskik, hvilket uddybes i det følgende.

3.22 Konflikt eller styrke?

Der er noget på spil

En hel åbenlys potentiel konflikt er, at jeg professionelt har noget på spil. På den ene side har jeg lagt de teoretiske grundsten i camp-konceptet, med en ambition om at kunne hjælpe, støtte og fremme mennesker med sårbarheder i deres udvikling. På den anden side kan jeg i et fænomenologisk inspireret studie som dette potentielt finde, at intentionerne bag camps ikke sætter sig i deltagerne på den ønskede måde. Denne potentielle konflikt har jeg været bevidst om fra projektets start, hvilket blot har skærpet min professionelle forskningstilgang i processen. Det er således med en klar ambition om, at forskningsprojektet ikke har til hensigt at bevise men derimod at belyse (Winther, 2009). En belysning, hvor interessen og værdien af fundene ikke ligger i en vurdering af grader af effekt, men derimod i den deskriptive beskrivelse og forståelse af, hvad der er på spil. Det er således med en interesse for belysning, samt med Peter Jarvis’ ord i mente, at praktikerforskningen i denne sammenhæng har sin ret: ”Jo mere forskning, der foretages af praktikere-forskere, desto mere information får vi om praksisprocesserne, udviklingen af praksis viden og andre relevante facetter blandt praktikere. (Jarvis, 2002, s. 140). For-forståelse

Et andet opmærksomhedspunkt er, at min store indsigt i konceptet kan gøre det svært at sætte parentes om mine for-forståelse (epoché), hvilket der typisk søges i en fænomenologisk tradition. Et aspekt der kan gøre det svært for mig at se på camps med et nyt og åbent blik.

Jeg valgte derfor i stedet at gøre mig mine for-forståelser bevidste. En bevidsthed der dels blev skabt ved at Elsass Fondens kommunikationsmedarbejde Sarah Kahia Humle, som noget af det første i projektet, foretog et for-forståelses-interview med mig. En måde hvorpå jeg kunne placere alle mine tanker og fordomme, og herfra bedre har kunne lade mig inspirere og blive forundret over dimensioner, jeg ikke havde været opmærksom på før. Denne proces kan lyde simpel, men er i praksis meget kompleks. At være åben, undrende og nysgerrig er derfor noget jeg gennem hele projektet har skulle arbejde bevidst med, så jeg har kunne lade mig guide af deltagernes ord, fremfor mine egne teoretiske og praktiske forståelser og erfaringer. I det følgende gives et kort resumé af hovedpointerne i for-forståelsesinterviewet. Interviewet blev optaget, men pointerne er ikke direkte transskriberede. Derimod fremstilles disse i jeg-form i en komprimeret fortælling, med brug af så mange af de direkte vendinger, der blev anvendt under interviewet.

Mine tanker på et helt overordnet plan er, at det vi gør og de processer vi sætter i gang på campen, de vil gælde for alle mennesker og ikke kun mennesker med CP. Det er helt almene udviklingsprocesser, der kan adressere alle typer målgrupper. Når der på campen arbejdes ud fra et helhedsorienteret perspektiv, så har jeg en forventning om, at vi kan gå ind og rykke, den opfattelse deltagerne har af deres eget mulighedsrum. Via kropslige oplevelser der i deres direkte form er med til at bekræfte eller afkræfte hvad da kan og ikke kan, så kan vi muligvis påvirke deres måde at handle på i verden – også når de kommer hjem. Hvis de på campen oplever at kunne mere, så vil det forhåbentlig også betyde at de gør mere. Jeg tror ikke på at campen kan det samme for alle. Der er ikke to mennesker der udvikler sig ens. Men fordi de fire camps som jeg skal kigge på, ligner hinanden i strukturen og er bygget op omkring de sammen teoretiske forståelser, så kan det i princippet stimulere til det samme for alle aldersgrupper. Så jeg forventer helt klart, at der er nogle overensstemmelser i det de oplever på tværs i de forskellige camps. Men jeg aner ikke hvordan de kommer til at udvikle sig i tiden efter, det er jeg simpelthen i tvivl om. Men jeg håber og tror på, at de i højere grad end tidligere ikke bare drømmer om hvad de vil, men rent faktisk handler og gør det de drømmer om. Og går ud og involverer sig i nogle ting, som de ellers ikke havde gjort. Jeg tror at det er realistisk at skabe disse udviklingsprocesser på blot fire dage. Og det tror jeg på, fordi vi har bygget campen op omkring nogle aktiviteter som vil være anderledes, ifht. hvad deltagerne ellers har været involveret i. Og hvis deltagerne gennem disse bevægelsesoplevelser kan få stimuleret til nogle succeser, der kan give dem en større tro på at de godt kan håndtere situationer i fremmet og uvant terræn, så tror jeg på, at vi ret hurtigt kan gå ind og arbejde med deres selvforståelse. Jeg tror på campen som den er i de fire dage, men en af mine umiddelbare største bekymringer og kritikpunkter ifht. campen er i forhold til den efterfølgende periode. Jeg synes det er rigtig ærgerligt at dette koncept ikke rummer en opfølgning, hvor man kan følge deltagerne til dørs, fordi det tror jeg på vil kunne sikre den bedste udviklingsproces. Så jeg er spændt på at se, hvad det så betyder, når der ikke er en organiseret opfølgning. Som campen er nu, så kan den være en referenceramme man kan henvise til, når man står i nogle svære situationer derhjemme. Hvis jeg kunne på campen, så kan jeg også nu. Men jeg tror faktisk at det kan være svært at komme hjem fra camp. Det bliver interessant at se om et potentielt dyk

efter camp vil medføre at de ikke udvikler sig yderligere, eller om de formår at omsætte nogle af campelementerne i deres liv.

Som det kan ses i resuméet forholdt jeg mig til en række forskellige elementer inden hele projektet gik i gang. Dette var en proces, som jeg var meget opmærksom på hele tiden at have i baghovedet. Inden interviewene skulle foretages og efterfølgende når de skulle analyseres var der således en konstant opmærksomhed på, at forholde mig åbent, nysgerrigt og undrende til deltagerne, deres oplevelser og de transskriberede ord, så mine egne forforståelse ikke blev rammesættende for skabelsen og bearbejdningen af empirien. Subjektivitet

Et sidste potentielt konfliktpunkt jeg vil rette fokus mod, er praktikerforskerens subjektivitet i den videnskabelige proces. At lave praktikerforskning er ikke ensbetydende med at bedrive subjektiv forskning, dog er den subjektive indgangsvinkel afgørende for forskningsprocessen. En ambivalent position, der kræver en grundig metodebevidsthed samt et reflekterende dobbeltblik, der gør mig i stand til både at agere nærværende og distancerende i forskningsprocessen (Hastrup, 2010; Winther, 2011). På den ene side er det således afgørende at forstå, at det netop er den subjektive tilgang, der skaber muligheden for en værdifuld nærværende indsigt. I dette projekt er det således netop den dybe, kropsnære, praksisbaserede subjektive involvering i konceptet, der gør, at jeg kan stille relevante spørgsmål og indfange nye nuancer i de processer, der sker i og omkring mig. Subjektiviteten bliver således ikke en modsætning til meningsfuld og god forskning men derimod en forudsætning (Dads & Hart, 2001). På den anden side er det afgørende, at jeg som forsker også formår at have et distancerende og reflekteret blik på den skabte empiri i analyseog refleksionsfasen, hvor empirien skal bearbejdes.

Med en orientering om min forskerrolle, vil der i nedenstående blive udformet en kort beskrivelse af dem det hele handler om – deltagerne på de fire camps.

3.3 Deltagere På hver af de fire camps, er der blevet taget udgangspunkt i fire deltagere. Da alle deltagere er anonymiserede i afhandlingen, kan der ikke fremstilles detaljerede beskrivelser af deltagerne. I nedenstående gives således blot en overordnet beskrivelse, der kan give en lille indsigt.

2.31 Sommercamp

Deltagerne var 10-13 år og bestod af tre drenge og en pige, hvoraf tre var fra Jylland og en fra Sjælland. Alle de fire er kategoriseret som 1’ere eller 2’ere på GMFCS-skalaen, og har således ikke de helt store motoriske udfordringer. Alle fire er ligeledes integreret i en almindelig folkeskole og deltager i fritiden i aktiviteter som spejder, fodbold, gaming og trampolin på ugentlig basis. Alle kommer på papiret fra velfungerende familier, hvor forældrene fortsat er sammen, er i arbejde og har fornuftige indkomster. De to yngste deltagere giver udtryk for at have en tilværelse med mange venner og virker glade og tilfredse med deres tilværelse. De to ældste drenge fortæller derimod om svære tider i skolen, hvor de til tider har haft svært ved at indgå i fællesskabet og tage imod de udfordringer og krav, der stilles fra skolens side.

2.32 Teencamp

Deltagerne var 15-17 år og bestod af to piger og to drenge. To fra Jylland og to fra Sjælland. Alle de fire er kategoriseret som 1’ere eller 2’ere på GMFCS-skalaen, og har således ikke de helt store motoriske udfordringer. De to piger er ved at afslutte 9. klasse i en specialklasse, mens de to drenge er integreret i normal folkeskole og ungdomsuddannelse. Alle fire har ved siden af skolen haft fritidsinteresser, men de to piger går pt ikke til noget fast. Begge drenge spiller fodbold flere gange om ugen på højt plan. Den ene dreng giver udtryk for et teenage-liv med gode venner, kæreste og hårdt pres fra skolen – han virker til at hvile i sig selv. De tre andre synes derimod at have det svært. Særligt tegn på ensomhed, anderledeshed og utilstrækkelighed fylder i deres fortællinger om dem selv.

2.33 Camp for kørestolsbrugere

Deltagerne var 13-17 år og bestod af tre piger og en dreng. Tre fra Jylland og en fra Sjælland. Alle de fire er kategoriseret som 3’ere eller 4’ere på GMFCS-skalaen, og har således store motoriske udfordringer, hvorfor de i mange sammenhænge har brug for hjælp og støtte. To af pigerne er 53

integreret i den almindelig folkeskole, mens de to andre er i gang med at færdiggøre deres 9. klasse på en specialskole. En af pigerne dyrker racerunning i sin fritid – de tre andre har ikke nogen fast fritidsinteresse. To af pigerne har gode venskaber, mens de to andre er meget alene. Alle giver udtryk for, at det kan være svært at deltage i sociale sammenhænge, og at andre ikke forventer så meget af dem, hvilket ofte sætter dem i begrænsende og ekskluderende situationer. 2.34 Voksencamp

Deltagerne var 30-58 år og bestod af to kvinder og to mænd. En fra Jylland og tre fra Sjælland. De fire er kategoriseret som 1’ere, 2’ere og en mild 3’er på GMFCS-skalaen. Alle kan således begå sig i det daglige uden hjælpemidler, men kan blive usikre og søge støtte hvis terrænet bliver vanskeligt. Alle har de dagligt arbejde, dog på nedsat tid og på særlige ordninger. To af deltagerne har fritidsinteresser, som ridning, spinning og racerunning, mens de to andre er involveret i fysioterapeutiske indsatser, og har ikke en selvvalgt fritidsinteresse. En er single, en fraskilt med to børn, en gift med to børn og en enkemand. Fælles for de fire er en fortælling om en svær barn- og ungdom, hvor de har følt sig mindre værd, ensomme og forkerte. Elementer, der har sat spor i deres voksenliv, hvor flere berette og social usikkerhed og lavt selvværd.

3.4 Metodiske tilgange I projektet er benyttet interviews af 16 deltagere både før, lige efter og fem-seks måneder efter deres deltagelse i en sports camp. Ydermere er der blevet lavet observationer af deltagerne på campen. Mens interviewene har fungeret som primær empiri, og vil være fundamentet for både analyse og diskussioner i de fire artikler, skal observationer derimod ses som et supplerende og understøttende redskab til interviewene. I det følgende kommer en gennemgang af de refleksioner, overvejelser og beslutninger, der er lavet og taget i arbejdet hermed.

3.41 Det kvalitative forskningsinterview

Det kvalitative forskningsinterview vil danne ramme og grundlag for den primære empiri i dette projekt. Et valg, der er taget da det anses for at være en af de bedste metoder til åbne op for vores medmenneskers oplevelser, fortællinger og forståelser af sig selv og verdenen omkring dem (Brinkmann & Tanggaard, 2015; Smith & Sparkes, 2018). Med interviewet bliver det tilmed muligt at skabe en nuanceret og intensiv analyse af et forholdsvis begrænset antal deltageres oplevelser af at deltage på sports camp. Fire deltagere fra hver camp er blevet udvalgt med henblik på at få så forskellige deltagere som muligt. Der er således lagt fokus på både at vælge drenge og piger, de yngste og ældste, de mest funktionsdygtige og de hårdest fysisk ramte samt en geografisk fordeling. Alle de 16 udvalgte er blevet interviewet individuelt tre gange hver. Tre interviews, der havde hvert sit formål og derfor også var bygget lidt forskelligt op. Inden første interview var der blevet indhentet samtykke fra alle, og alle var tilmed blevet orienteret om deres rettigheder og muligheder for at trække sig fra forskningsprojektet til hver en tid (Kvale & Brinkmann, 2009). Hvilke andre etiske overvejelser jeg har forholdt mig til, vil blive beskrevet løbende i relation til de konkrete interviews. Første interview – belysning af et menneskes livsverden

Det først interview blev foretaget en uge før camp. Interviewet var et semistruktureret life-story interview og havde først og fremmest til formål at få en indsigt i deltagerne og deres livsverden (Smith & Sparkes, 2018). Formålet hermed var at få en forståelse for hvordan de opfatter sig selv, deres relationer, interesser, ressourcer, udfordringer, drømme og væren i verden. I arbejdet med interviewet er der lavet en interviewguide med henblik på at have en ramme, der sikrer, at forskellige aspekter af deltagernes liv bliver belyst. I den konkrete interaktion med deltagerne ses det dog som en styrke og et fænomenologisk princip, at deltagerne forfølges i de fortællinger, som de selv er mest optaget af (ibid.). Foruden ovenstående forskningsmæssige intention er der i dette interview ydermere stor fokus på de etiske forudsætninger og mellemmenneskelige rammer. Det var således en bevidst prioritet at søge en tryg og tillidsfuld relation til både de deltagere som jeg kendte, men særligt dem jeg aldrig havde mødt før. Først del af interviewet omhandlede derfor lidt smalltalk, en briefing af hvad der konkret skulle ske i interviewet, en gennemgang af projektet i sin helhed samt en orientering om at et interview som dette godt kan blive meget personligt. Et element, der betyder at jeg dels fandt det vigtigt at fortælle, at deltagerne naturligvis ville fremstå anonymt i mine artikler, og dels en anerkendelse af, at det naturligvis var helt i orden, hvis der var dele af deres liv, som de ikke havde lyst til at dele med mig. Min oplevelse er, at de fleste deltagere valgte at være meget ærlige og 55

åbne omkring deres private og personlige fortællinger. De fremstod som nogle, der havde sig selv med i processen og have en stor lyst til at give noget af sig selv. Efter interviewet blev deltagerne tilbudt at modtage den transskriberede version til gennemlæsning. Ydermere blev det gjort tydeligt for dem, at de til en hver tid kunne trække sig fra projektet, eller kunne sige til, hvis der var elementer af interviewet, de ikke ville have at jeg benyttede (Kvale & Brinkmann, 2009). I relation til projektets problemformulering er dette livsverden-interview ikke så interessant i sig selv. Dets relevans skal ses i sammenhæng med de andre to interviews, hvor betydningsfulde elementer i campen samt deltagernes potentielle udvikling efter campen, bliver tydeligere, når der er et sammenligningsgrundlag. Anden interview – belysning af oplevelsen af at være på sports camp

Det andet interview blev foretaget i dagene lige efter campen, for at sikre at deltagerne havde en frisk kropslig erindring. Interviewet var designet som et semi-struktureret interview (Kvale & Brinkmann, 2009; Smith & Sparkes, 2018), da dette ”har til formål at indhente beskrivelser af den interviewedes livsverden med henblik på at fortolke betydningen af de beskrevne fænomener” (Kvale & Brinkmann, 2009, s. 19). Interviewet havde således til hensigt at skabe en forståelse for deltagernes oplevelse af at være på camp. Foruden den rene verbale interviewdialog blev der i dette interview benyttet to supplerende aspekter, der begge havde til hensigt at skabe en mere kropslig tilgang samt nogle mere nuancerede beskrivelser. Det først inddragede element var en lang række billedkort bestående af diverse fotografier, illustrationer og symboler. Et valg taget af primært to årsager, der bunder i praksiserfaring med både denne type interview samt målgruppen. Som det først er det min erfaring, at både mennesker med CP og andre målgrupper (drenge med anden etnisk herkomst og hjemløse) kan finde det vanskeligt at snakke sanseligt og nuanceret omkring oplevelser. Ydermere har jeg erfaret, at mange ligeså har svært ved at fortælle og reflektere, når der stilles åbne spørgsmål, hvor interviewpersonen selv skal sætte en retning. En type spørgsmål som et fænomenologisk orienteret semistruktureret interview typisk vil være bygget op omkring (ibid.). Symbolikken og metaforikken fra billedkortene skal således både gøre det mere konkrete og håndterbart for deltagerne at svare på nogle af spørgsmålene, men samtidig også muliggøre en mere kropsligt sansende bevidsthed, der kan bidrage til flere af oplevelsens facetter. Et ræsonnement, der bunder i, at metaforer anses for at være ”(…) den bedste måde at italesætte følte fornemmelser, oplevelser og kropsligt forankrede erfaringer på.” (Stelter, 2012, s. 170). Som et eksempel på inddragelsen af kortene, blev deltagerne som noget af det første i interviewet bedt om at indsamle de kort, som der for dem beskrev oplevelsen af at være på camp. 56

En deltager har eksempelvis valgt kortene, der ses her.

Herefter spørges der ind til hvert kort – ”Hvad betyder dette kort for dig?”, ”Hvordan relaterer du det til camp?” og ”Kan du fortælle lidt mere om det?”. Med et begrænset antal billedkort og motiver er jeg bevidst om, at jeg har stimuleret deltagernes intentionalitet i bestemte retninger. Kortene er dog ikke udvalgt af mig, men er taget fra et coachingkit, hvor de i andre professionelle sammenhænge har været anvendt med det formål at stimulere til forskellige nuancerede refleksioner. Der var således utrolig mange kort at vælge imellem, og ligeledes var de forskellige i deres udtryk, hvorfor de ikke associerede til bestemte typer oplevelser eller situationer. Ydermere gjorde jeg meget ud af at sige, at der ikke var noget bestemt antal kort de skulle vælge, at de skulle kigge dem alle sammen igennem, at de kunne bruge al den tid de havde brug for, og at der vigtigst af alt ikke var nogle rigtige eller forkerte kort de kunne vælge. Det vigtigste var, at kortet for dem, sagde noget om at være på camp. Min oplevelse var, at kortene helt tydeligt støttede deltagerne i deres fortælling af campen, og således gjorde samtalen både mere håndterbar og nuanceret. Som en del af dette interview, blev deltagerne bedt om at fortælle om deres mest betydningsfulde oplevelser på campen. Det blev her præciseret, at ordet ’betydningsfuld’ hverken skulle forstås positivt eller negativt, men derimod være beskrivende for de oplevelser, der havde gjort størst indtryk på dem, som de tillagde en større værdi og hermed skilte sig lidt mere ud fra de andre. I deres fortælling af deres betydningsfulde oplevelser valgte jeg først at lade dem spontant fortælle om oplevelsen, samtidig med de skulle lave en tegning, der for dem fortalte noget om oplevelsen. 57

En beslutning taget med henblik på at stimulere til et umiddelbart kropsligt respons. Efter deres første umiddelbare beretning og beskrivelse af deres tegning, søgte jeg en mere detaljeret narrativ beskrivelse af hele situationen (White, 2008; Smith & Sparkes, 2018). Deltagerne skulle således fortælle så nuanceret de kunne fra start til slut om, hvad der skete, hvad de følte, tænkte og gjorde i lige netop den situation. En måde hvorpå der blev skabt en indsigt i de sammenhænge og strukturer, der var udslagsgivende for de handlinger, følelser og reaktion, der blev oplevet af deltagerne. I disse fortællinger blev det tydeligt at deltagerne i nogle tilfælde havde adapteret sprogbrugen, der blev anvendt på selve campen. Eksempelvis blev termerne grøn, gul og rød zone i samlingerne på campen præsenteret som et kommunikationsværktøj, til at deltagere og professionelle bedre kunne opnå en fælles forståelse for, hvorledes deltagerne havde det i de forskellige aktiviteter. Grøn zone henviste således til at man havde en oplevelse af at være tryg eller synes aktiviteten var nem. Gul zone betød at man var nervøs eller at aktiviteten blev oplevet som værende lidt svær. Til sidst var rød zone et udtryk for at være meget utryg/bange eller have en oplevelse af at aktiviteten var alt for svær til at man kunne mestre den. I selve interviewene kan man høre, hvordan deltagerne flere gange benytter disse termer til at beskrive, hvordan de havde det i de forskellige betydningsfulde situationer. Et element der har afspejlet sig i afhandlingen, hvor denne reference er blevet omdrejningspunktet i studie fire.

Efter fortællingen blev deltagerne opfordret til igen at finde et billedkort, der for dem opsummerede oplevelsen. Igen med henblik på at konkretisere og skabe en dybde og nuance i deres oplevelser. Et eksempel på en deltagers betydningsfulde oplevelser kan ses nedenfor.

Et yderligere opmærksomhedspunkt i dette interview var af etisk karakter, og relaterede sig til min nye relation til deltagerne. Interviewet er som sagt foretaget få dage efter camp, og vi havde derfor fået etableret en stærk relation. En relation, der på den ene side gjorde, at deltagerne havde stor tillid til mig fra starten, og jeg kunne hermed stille meget nærværende og relevante spørgsmål. Spørgsmål, der kan kaste lys over aspekter, som andre ikke ser. Samtidig kan min store personlige indsigt i dem og deres oplevelser gøre, at jeg potentielt overser det banale og samtidig tror, at jeg allerede kender svarene. Det var derfor vigtigt, at jeg gjorde det tydeligt overfor deltagerne og mig selv, at alt havde værdi, at de ikke måtte tage noget for givet, og selvom det kunne virke indlysende og overflødigt at fortælle detaljeret om deres oplevelser (fordi jeg ofte selv havde været tilstede), så måtte de prøve at lade som om, de fortalte det til en, der ikke har været en del af campen. De gange hvor svarene alligevel blev for indforståede, var jeg opmærksom på at bede deltagerne beskrive scenariet mere nuanceret en gang til. Tredje interview – belysning af hvordan en sports camp har sat spor

Dette tredje interview blev foretaget 5-6 måneder efter campen var afholdt. Formålet med interviewet var at få en forståelse for, hvordan deltagerne oplevede, at campen havde eller ikke havde sat spor i deres hverdag. Interviewet var som de andre interviews semi-struktureret og billedkortene blev ligeledes benyttet til blandt at belyse, de elementer deltagerne oplevede de tog med hjem fra camp. I sin opbygning adskiller dette interview sig således ikke meget fra de to andre interviews, dog var der to elementer, jeg var særlig opmærksom på. Elementer der dels relaterer sig til målgruppens typiske erfaringer fra sundhedssystemet og dels nogle etiske overvejelser i forhold til min position som praktikerforsker. I relation til målgruppen er det kendt, at de fleste har været meget tæt knyttet til sundhedssystemet hele deres liv. En tilknytning der har medført, at mange tilsyneladende dels har tillært sig et særligt fagsprog, når de snakker om sig selv, og dels godt ved hvad det er fagpersonen på den anden side godt vil høre. For at imødekomme for-forståelser, gjorde jeg meget ud af at forklare deltagerne, at der ikke var nogle rigtige eller forkerte svar. Det eneste jeg var interesseret i var, at de var tro overfor deres egen oplevelse af, hvordan de havde oplevet tiden efter camp. I forlængelse heraf var jeg opmærksom på at stille opfølgende og uddybende spørgsmål i de sammenhænge, hvor jeg fornemmede, at de muligvis kom med et tillært rutine-svar. I relation til min rolle som praktikerforsker, hvor jeg både har ageret som instruktør og leder på campene samtidig med, at jeg har været forsker, kan det antages, at deltagerne har fået opbygget et forhold til mig, der kan gøre det svært at være kritisk i en interviewsituation. Dette kan skabe 59

et etisk dilemma, hvor de potentielt kan føle, at de skylder mig noget, at de ikke vil gøre mig ked af det eller bare gerne vil gøre mig glad, fordi jeg og Elsass har hjulpet dem. Jeg sagde derfor flere gange meget tydeligt, at de endelig måtte være ærlige og dele det, hvis de havde nogle uheldige eller direkte dårlige oplevelser og erfaringer med fra camps. Mit indtryk er, at det lykkedes at få dem til at komme med autentiske svar, og at min tætte relation til dem, blot var en styrke, der fik dem til at åbne op. Flere gange var der deltagere, der sagde ”Det her fortæller jeg jo også kun fordi det er til dig”. En udtalelse, der kunne have været forbundet med et etisk dilemma, hvis den var relateret til passager i samtalen, der var relateret til meget følsomme beretninger, der kunne være svære at håndtere for mig og dem selv. Dog var mit indtryk, at det i højere grad relaterede til, at de under normale omstændigheder ikke var så trygge ved at berette om dem selv i selskab med fremmede.

3.42 Deltagende observation

Observationsmetoden er kendetegnet ved, at livet blandt en udvalgt gruppe mennesker observeres - enten fra distancen eller som en integreret del af gruppen - i deres egne omgivelser. Herigennem søger forskeren at forstå og fortolke deres oplevelser og handlinger fra de involverede parters synspunkt (Ottesen, 2013). I dette projekt har jeg observeret deltagerne på alle de fire camps, der har været en del af dette projekt. Formål

Som nævnt har observationerne haft til formål at understøtte interviewene. En understøttelse, hvor observationerne både har fungeret som direkte empiri i form af sceniske beskrivelser (beskrives nederst på siden), men også har givet mig en indsigt som jeg har kunne benytte i interviewene. Jeg har således brugt min viden fra observationerne til dels at kunne spørge mere nuanceret og nysgerrigt ind til deltagernes oplevelser. Særligt i situationer, hvor der er noget i interviewet der strider imod mine egne observationer, eller hvor umiddelbare væsentlige elementer er blevet udeladt af fortællingen, har jeg tilladt at undre mig, og hermed stillet nogle opfølgende spørgsmål. Ydermere har observationerne været med til at kvalitetssikre de tematikker jeg har fået skabt gennem analyserne. Jeg anser det således som en styrke at tematikkerne både afspejler deltagernes fortællinger og er genkendelige i mine observationer.

Deltagende observatør

Som forsker kan man agere observatør på flere forskellige måder, og der arbejdes hermed med et kontinuum fra den rene observatør til deltagerobservatøren (Spradley, 1980; Kristensen & Krogstrup 1999). Qua min position som praktikerforsker, definerer jeg min rolle som deltagende observatør. En position, det har gjort mig i stand til at være nærværende og sanseligt tilstede under alle aktiviteterne på campen. Jeg har således haft muligheden for at være med i fællesskabet og aktiviteterne, og hermed været tilstede i deltagerne mest sårbare, betydningsfulde, intense og succesrige øjeblikke. Øjeblikke hvor jeg har kunne mærke, se og høre både frygten, glæden, skuffelsen og succesen, når den har været på sit højeste og laveste. Et observerende og deltagende nærvær, der har givet en indsigt, der har gjort det muligt at formidle nye nuancer af den komplekse individ-verden relation og interaktion, der udspiller sig særegnet for deltagerne på campen. Feltnotater og sceniske beskrivelser

I forhold til den tekniske fremgangsmåde har det været vigtigt at gå systematisk til værks, for at kunne dokumentere så meget af det der er blevet set og hørt under de forskellige camps, da dette er afgørende for kvaliteten af observationerne (Ottesen, 2013). Til dette kan der anvendes en række forskellige teknikker, hvor blandt feltnotater og –dagbog anses som særligt gavnlige og ofte benyttede (Ottesen, 2013; Spradley, 1980), hvorfor også jeg har gjort brug af disse. I brugen heraf anbefaler Spradley (1980) en condensed account, hvor de første observationer hurtigt skrives ned, en expanded account, hvor man uddyber de første hurtige felt observationerne og en fieldjournal, hvori en mere personlig side af feltarbejdet noteres og hermed kan bruges til at notere oplevelser, nye ideer, spørgsmål, fejl, frustrationer, gennembrud og problemer, der kan have relevans for projektet. Optimalt set havde jeg kunne skrive mine observationer ned med det samme, men da min rolle på campen indebar, at jeg var praksisdeltagende både i aktiviteterne og mellemrummene efter aktiviteterne, var dette problematisk. Jeg valgte derfor en hurtigere digitalløsning, hvor jeg efter hver aktivitet brugte 5-10 minutter på at indtale et memo til mig selv på mobiltelefonen. Et memo, der både indeholdt direkte observationer og mere personlige refleksioner og overvejelser. Om aftenen når dagens program var slut satte jeg mig herefter og nedskrev på computeren nogle mere uddybende og sanselige sceniske beskrivelser. I modsætning til klassiske observationsnotater, der typisk beskriver længere seancer i et neutralt og unuanceret sprog, er de sceniske beskrivelser nedskrevet som små sanselige, kropsnære og nuancerede passager med fokus på særlige campøjeblikke (Winther, 2015; Nagbøl, 2013). For at indskrænke fokus, har der særligt været fokus på de øjeblikke under aktiviteterne, hvor jeg som observatør har fornemmet, der er noget 61

betydningsfuldt – såvel positivt som negativt – på spil. Valget af metoden sceniske beskrivelser – i modsætning til klassiske observationsnotater – er taget, da den i overensstemmelse med den fænomenologiske indgangsvinkel kan medvirke til en dybere og mere sanselig indsigt, og hermed også en større forståelse for, hvad der i situationerne er på spil for deltagerne.

Med en gennemgang af de valgte metoder vil det i det følgende blive tydeliggjort, hvorledes materialet er blevet analyseret.

3.5 Analyse strategi Analyse strategien, der er valgt i de første tre studier er i tråd med den fænomenologiske tradition, der i sin form ”(…) dvæler ved det beskrivende niveau i håbet om at få viden om, hvordan et fænomen fremtræder i erfaringen.“ (Thing, 2013, s. 277). På det deskriptive niveau søges der en autentisk reduceret gengivelse, hvor de essentielle strukturer bliver tydelige, og kernen der udgør oplevelsen, træder frem (ibid.). I belysningen af oplevelsernes essens, er der gjort brug af en tematisk analyse. Studie fire divergerer fra de andre studier, da der her søges en udvikling af et teoretisk koncept, der kan forklare og rammesætte nogle af deltagernes oplevelser. I dette studie anvendes således en grounded theory analyse. Begge beskrives i det følgende.

3.51 Tematisk analyse

I studie 1, 2 og 3 er der blevet anvendt en tematisk analyse strategi i behandlingen af empirien. En analyse strategi, der er i overensstemmelse med metoden beskrevet af Braun og Clarke (2006), og har til hensigt at identificere mønstre og nøgletemaer i data, der tilsammen skal udgøre essenserne af deltagernes oplevelser. Den tematiske analysestrategi har tre faser. Som første led i analyseprocessen er alle de sceniske beskrivelser blevet læst igennem, og alle interviews blevet hørt igennem og transskriberet, hvorefter selve transskriberingen er blevet læst igennem. Denne fase og tilgang er ens for både denne type analyse samt for første fase i en grounded theory analyse, og har til formål at danne et umiddelbart helhedsindtryk og overblik over det skabte materiale. I anden fase samles deltagernes udtalelser i sammenfattede brudstykker. Med dette menes, at alle de meninger og oplevelser deltagerne giver udtryk for i interviewene, gengives i sammenfattede kortere udsagn med det formål, at få hovedbetydningerne til at fremstå tydeligere. På denne måde dannes et mere håndterbart overblik af empirien, og der kan på baggrund af denne 62

sammenfattede forståelsesramme påbegyndes en mere formalistisk bearbejdning af materialet. En bearbejdning, hvor alle brudstykker bliver tildelt en datadrevenkode, der fungerer som et nøgleord, der anvendes med henblik på at identificere de forskellige tekstsegmenter. Som ordet antyder er datadrevne koder ikke fastlagt fra begyndelsen, men udvikles ad hoc i selve processen på baggrund af det indsamlede datamateriale (Kvale & Brinkmann, 2009). Som det tredje og sidste element blev der foretaget en endelig reduktion. En reduktion, hvor alle de sammenlignelige datadrevne koder bliver grupperet for at danne kategorier, som tilsammen i sin helhed præsenterer essensen af fænomenet, der bliver undersøgt – i dette tilfælde ”oplevelsen af at være en del af det sociale miljø på camp”, ”oplevelsen af at være en del af aktiviteterne på camp” og slutteligt "oplevelsen af hvordan en camp har sat spor i tiden efter camp”. Et eksempel på disse forskellige faser hentet direkte fra empirien ses i det følgende skema. F = forsker, I = interviewe. Transskriptionsuddrag fra interview F: Ja. Og så sagde du ”udfordringer” (da hun skulle beskrive camps”. I: Ja, der er masser udfordringer. Der er hele tiden udfordringer. Når du skal ud over din komfortzone. Det kommer du jo tit på sådan en camp, det er jo det der er meningen. Hvis det hele bare er sådan, vi skal kun liiiiige.. Og det skal være sjovt og hyggeligt hele tiden, eller det skal det, det er ikke det jeg mener, men du skal ud af din komfortzone for at udvikle dig, og det må sgu lige præcis være det, der er en af hjørnestenene i en camp, at du udvikler dig som person, og du tør udfordre dig selv. Det må det altså alt andet lige være. Hvis du tager derned og tænker ”jeg vil kun sådan her, fordi så har jeg det godt”, så får du sgu da ikke en skid ud af det.

Sammenfattede brudstykker

Datadreven kode

Der er hele tiden udfordringer

Udfordringer

det er jo det der er meningen

Mening

ud af din komfortzone for at udvikle dig

Komfortzone Udvikle

en af hjørnestenene i en camp, at du udvikler dig som person, og du tør udfordre dig selv

Tør udfordre dig selv

Datakoder fra eksemplet kan således ses samlet i kategorien ”Meaningful challenge >< (Meaning)less challenge” i studie 2: ”Moved by Movement”.

3.52 Grounded theory

Med udgangspunkt i ovenstående tematiske analyser fremkom utrolig mange tekstpassager i både de sceniske beskrivelser og transskriberede interviews, hvor deltagerne kropsligt udtrykte eller verbalt beskrev en oplevelse af mestring af en udfordring, de havde forventet var umulig at håndtere. Udtryk og beskrivelser, der vakte en særlig interesse og nysgerrighed, idet beskrivelserne flere gange var i direkte konflikt med mange af de dominerende lærings- og udviklingsteorier vi kender i dag. Med en nysgerrighed vakt, som jeg ikke kunne skubbe til side, besluttede jeg at forfølge oplevelserne med henblik på at udvikle et teoretisk koncept, der kunne

være medskabende til at opstille en forståelsesramme for, hvad der er på spil i deltagernes oplevelser. Til dette formål er en grounded theory analyse velegnet, da den netop søger at opdage, udvikle og verificere ny teori, der bunder i systematisk samlet empirisk materiale, der kan medvirke til at give nye forklaringer og forståelser for sociale processer (Strauss & Corbin, 1998/2008). For at sikre en høj kvalitet og validering af analyseprocessen præsenterer Strauss and Corbin (1998/2008) en tretrins induktiv-deduktiv strategi, der består af en åben-, akse- og selektivkodning. En strategi også jeg har brugt. Åbenkodning

Forinden den åbne kodning havde jeg som sagt allerede identificeret, at mange af de betydningsfulde oplevelser jeg havde observeret, og som deltagerne havde beskrevet for mig i interview 2, skilte sig ud på en helt speciel måde. Jeg startede således med at finde alle disse detaljerede beskrivelser frem fra både de sceniske beskrivelser og de 16 interviews. Herefter blev der foretaget en åben kodning, der svare til den første fase i den tematiske analyse beskrevet ovenfor. Alle tekstpassager blev således brudt ned til mindre meningsenheder og kategorier, der kunne identificere og tydeliggøre hvad teksten handlede om. Aksekodning

Aksekodning er anden fase, og består af en proces, hvor der som det første identificeres en type situation eller kernekategori, der kan fungere som en central akse, hvortil de forskellige meningsenheder og underkategorier kan relateres til (Strauss & Corbin, 1998). Kernekategorien, der udgør essensen af det empiriske materiale og udviklingspotentialet i dette projekt, omhandler inkongruens mellem deltagernes forudgående forventninger og efterfølgende oplevelser af en udfordrende bevægelsessituation. Ved at identificere problemer, årsager, konsekvenser og strategier i deltagernes fortællinger, opstår en aksial årsagssammenhængene historie, der går på tværs af alle fortællingerne. For at gøre processen gennemsigtig, håndterbar og fortællingerne sammenlignelige, blev den aksiale historie lavet til en matrix med syv underkategorier: D = deltager, P = professionel D & P’s opfattelse af udfordring

D & P’s D & P’s opfattelse forventning af D’s til udfaldet evne til at takle udfordring

D & P’s reaktioner, tanker, følelser og kropsligt respons før og under

D & P’s oplevelse af udfaldet

D & P’s reaktioner, tanker, følelser og kropsligt respons efter

D’s fortolkning af oplevelsen

Selektiv kodning

Det sidste led, selektiv kodning, omhandler en integration af kategorier rundt om kernekategorien, samt udfyldning af dimensioner, der har behov for videre udvikling (ibid.). Ved at udvælge fortællingerne med den mest gennemsigtige historie og den mest meningsfulde udviklingsproces, blev det efter flere gennemlæsninger af empirien samt diskussioner med kollegaer, tydeligt at tre yderligere kerneelementer, var forudsætninger for at en betydningsfuld udviklingsproces kunne finde sted. Kernekategorien og de tre yderligere kerneelementer er beskrevet i studie 4: ”The Red Zone”.

3.6 Kvalitetssikring Som et led i kvalitetssikringen anbefales det, at man inddrager andre i den kvalitative forskningsproces (Elliott, Fischer & Rennie, 1999). For at imødekomme dette har jeg løbende søgt sparring med mine kollegaer på Elsass, der har forskellige professionelle baggrunde som eksempelvis idrætsuddannede, psykologer, kommunikations-medarbejdere samt ergo- og fysioterapeuter. Ydermere har de haft forskellige positioner i forhold til sports camps. Nogle har således været medarrangører, andre har fungeret som hjælpere og instruktører, mens enkelte blot har kendt til konceptet på distancen. For at tydeliggøre hvordan jeg har benyttet mig af relevante samarbejder, kommer her en kort beskrivelse af tiltagende før interviewene, under den analytiske proces og efter færdiggørelsen af de forskellige fund og tematikker.

3.61 Før

Før interviewene blev der udformet en interviewguide til hvert af de tre interviews. En interviewguide, som jeg fik min daværende kollega David Eskelund, til at kigge igennem og sparre med mig omkring. David har stor erfaring med kvalitativ forskning og den fænomenologiske tradition, og kunne derfor stille gode undrende spørgsmål og ydermere komme med forslag til andre måder at gøre det på. Tilsammen medvirkede denne proces til, at rammerne for interviewene var velovervejede, reflekterede og eksternt valideret i forhold til om de var tro mod den fænomenologiske tradition.

3.62 Under

Efter interviewene var foretaget, inviterede jeg tre af mine kollegaer ind til den første analytiske fase, for at sikre at der var en overensstemmelse, mellem det jeg og andre så i materialet. Det blev dog hurtigt tydeligt, at det var en utrolig langsommelig og besværgelig proces, der afledte mere forvirring end klarhed. Jeg besluttede derfor i stedet selv at foretage alle de analytiske trin – meningskondensering, kodning og kategorisering, og herefter invitere mine camp-kollegaer til at høre om det jeg fortalte skabte resonans hos dem, eller om de synes der var mangler eller direkte uenigheder. Disse snakke har kun bekræftet aktualiteten af de tematikker, der er blevet skabt i analyserne. Ydermere har de kollegiale samtaler bidraget til en bedre forståelse for materialet, da mine kollegaer kunne komme med supplerende fortællinger og refleksioner, der har understøttet de forskellige tematikker. Foruden en snak med mine kollegaer har alle de involverede campdeltagere fået tilsendt det transskriberede interview, og har haft mulighed for at kommentere herpå. Der er ingen af deltagerne der har meldt tilbage omkring misforståelser eller fejl-citering.

3.63 Efter

Som et sidste led har jeg i tiden efter mine analyser og udarbejdelse af artiklerne haft mulighed for at præsentere mine fund adskillige steder. Særligt min pointe om et udviklingspotentiale i den røde zone (studie 4) har jeg valgt at præsentere i alle de sammenhænge, jeg har kunne kommet til. I min position som erhvervs-ph.d. har det således være muligt både at holde forelæsninger for idrætsstuderende samt fagfolk med baggrund i både pædagogik, fysioterapi, ergoterapi, psykologi og sundhedspleje. Et valg jeg har taget, da jeg har haft behov for at prøve denne nye teoretiske forståelse af på praktikere, for dels at få et indtryk af om de forstod og godtog den teoretiske præmis, men mest af alt for at se, om de kunne se forbindelsen til deres egen praksis. En teoretiskpraktisk oversættelse, der for mig er afgørende for, at dette nye teoretiske koncept kan tillade sig at få en plads indenfor udviklings- og læringsfeltet. Med en gennemgang af de metodiske refleksioner og valg præsenteres i det følgende et kort referat af de fire studier.

4. De fire studier Da der i forrige afsnit blev givet et dybdegående metodisk indblik, vil nedenstående referater primært bestå af korte introduktioner til feltet, formålet med studierne, de væsentligste fund og konklusioner. Hvis der ønskes et større indblik i studierne, henvises til de fulde manuskripter, der er vedlagt som bilag. Studierne præsenteres i en rækkefølge, hvor læseren først får en forståelse for deltagernes oplevelser af at være på camp. Studie I giver således et indblik i deltagernes oplevelser af at medvirke i et bevægelsesfællesskab med ligestillede, og studie II retter fokus mod deltagernes oplevelser af at deltage i campens aktiviteter. Herefter præsenteres campens udviklingspotentialer. I studie III belyses det således, hvilke spor campen har sat i deltagerne i tiden efter deres deltagelse. Til sidst bliver der i studie IV udviklet en ny teoretisk referenceramme til at forstå nogle af deltagernes mest betydningsfulde oplevelser.

4.1 Studie I

I dare to be myself The value of peer communities in adapted physical activity interventions for young people and adult people with cerebral palsy

Studier har fundet, at nogle af de mest motiverende og meningsfulde aspekter for mennesker med funktionsnedsættelser i relation til sport og bevægelse, er at være en del af et inkluderende miljø og fællesskab med ligestillede (Powrie et al., 2015). Den sociale faktor er tilmed ofte anset som vigtigere end den pågældende aktivitet (ibid.). Værdien af et socialt fællesskab med ligestillede bliver tilmed påpeget som værende en af de mest betydningsfulde elementer i adskillige campstudier for mennesker med funktionsnedsættelser (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Gill, 1997; Michalski et al., 2003; Ashton-Shaeffer et al., 2001; Nyquist et al., 2019; Aggerholm & Moltke Martiny, 2017; Goodwin & Lieberman, 2011; Devine and Dawson, 2010). I studierne er det særligt oplevelsen af at blive accepteret og respekteret som den man er samt følelsen af at høre til, der fremhæves. På trods af dette, er den sociale faktor ikke en anerkendt metodisk komponent i den traditionelle rehabilitering af mennesker med CP (Wang & Yan, 2018; Novak, 2013; Sundhedsstyrelsen, 2014). Med dette studie ønskes en belysning af, hvordan mennesker med CP oplever at være en del af et socialt miljø med ligestillede på en sports camp. En indsigt, der kan bidrage med viden 67

omkring, hvorledes miljøer med ligestillede kan benyttes som en betydningsfuld komponent i indsatser, der udbydes til mennesker med CP.

Med udgangspunkt i fænomenologisk og narrativ inspirerede semi-strukturerede interviews (hvilke er beskrevet i metodeafsnittet), er der fortaget en tematisk analyse, der har resulteret i fem temaer, der præsenteres nedenfor.

4.12 Deltagernes oplevelse af det sociale miljø med ligestillede på sports campen

De fem temaer belyser alle elementer, der står i kontrast til deltagernes hverdag, og er således fund, der bidrager til noget mere og andet end mange af deltagerne er vandt til. Oplevelsen af at høre til

Deltagerne beskriver oplevelsen af at høre til som en kontrast til deres hverdag, hvor de ofte oplever sig selv som en, der afviger fra normen i skolen eller på arbejdet. En rolle og position i det sociale samfund, som mange enten forbinder med kampen for at passe ind eller kampen for at forklare sig selv overfor deres omgivelser. På campen er dette anderledes. Her befinder de sig blandt ligestillede og føler hermed de passer ind, som de er, og hermed kan være sig selv. Oplevelsen af social sikkerhed.

Oplevelsen af social sikkerhed bunder i en følelse af, at de andre deltagere vil støtte og hjælpe en til hver en tid. En social sikkerhed, der medfører at deltagerne tør vise og udforske nogle af de mere sårbare sider af sig selv, som de i deres hverdag ofte bruger mange kræfter på at kompensere for og gemme væk. Oplevelsen af en dynamisk synergi

En fælles refleksion fra deltagernes hverdag er oplevelsen af at være alene med deres forskellige kampe. På campen kæmper deltagerne også mange kampe, men føler i modsætning til hverdagen, at gruppen i et tæt samarbejde skaber energi og synergi til at løfte hinanden til et højere kompetenceniveau. Oplevelse af symmetri

På campen oplever deltagerne, at de rammer et niveau, hvor alle kan være med, hvis de vil. Ydermere bidrager den oplevede symmetri til, at deltagerne kan overføre de andres succeser, og

motiveres herigennem til selv at gøre et forsøg. Tesen ”hvis de kan, så kan jeg også!” påvirker således ikke blot deres tro på sig selv, men også deres adfærd. Oplevelsen af at være en ressource På campen oplever deltagerne at de bliver ressourcepersoner for hinanden i målet for at opnå succes i aktiviteterne. En position, der både er givende for personen der modtager hjælp og støtte, men i høj grad også for ressourcepersonen. At være en vigtig person for andre beskriver deltagerne kan medføre en oplevelse af at være noget værd. Ydermere kan der være en faktor, der er med til at styrke relationen imellem de involverede parter. Oplevelse af en fælles forståelse

På campen oplever deltagerne, at de andre har en helt særlig implicit forståelse for det at leve med CP. Et faktum, der gør det til en fælles norm, hvilket på den ene side betyder, at alle kan snakke med, men samtidig også er årsag til, at alt ikke behøver blive italesat. Omstændigheder, der får deltagerne til at føle, at forholdet imellem dem er stærkere og mere inderligt. Derudover et element der gør mange mere afslappede.

Temaerne viser, at den sociale komponent har en værdifuld effekt. Både tilknytningen deltagerne i mellem, deres tro på egne evner samt engagement og deltagelse på campen øges som følge heraf. Dog viser empirien også nogle enkelte uhensigtsmæssige opmærksomhedspunkter. Som det første fortalte en af pigerne, at hun oplevede det meget ubehageligt, at hun ikke blev lukket ind i af de andre piger. Som den eneste følte hun sig udenfor. At være udenfor på en camp, hvor alle synes at passe ind, kan virke endnu hårdere. Det skal dog siges, at hun til sidst kom med i gruppen. En anden oplevelse, der har været svær at tackle for flere deltagere, handler om kontrasten til hverdagen. På campen lykkes deltagerne ofte i flok, eller fordi de har den nære støtte fra gruppen. En gruppe, der pludselig er meget langt væk, når man kommer hjem. Savnet og kampen på egen hånd, kan som følge af denne nye gode erfaring, synes endnu hårdere efterfølgende.

4.13 Fællesskab og relation som metode

Fundene viser, at miljøet med ligestillede primært har sin værdi i relation til to overordnede elementer: det unikke fællesskab og den reciprokke relation. Med udgangspunkt heri omhandler

diskussionen perspektiver på, hvordan 'værdien af det unikke fællesskab' og 'værdien af den reciprokke relation' kan være gavnlig for rehabiliteringsindsatser.

Det unikke fællesskab

Værdien af det unikke fællesskab beskrives af deltagerne som en oplevelse af tilhørighed, social sikkerhed og synergi. Et nyt socialt miljø, der desuden får dem til at handle mere aktivt og modigt end de plejer, og hermed pludselig også mestre flere aktiviteter end de plejer. Elementer der påpeger en sammenhæng mellem det sociale miljø deltagerne er en del af, og deres deltagelse og handlekompetence. Dette antyder, at rehabiliteringsindsatser kan have gavn af at dyrke gruppeaspektet og fællesskabet aktivt. Ydermere bør det tillægges en opmærksomhed, at campformatet har en stærk effekt på camp, men kan være svært at håndtere efterfølgende. Et element der antyder, at en opfølgning eller en mere kontinuerlig indsats kunne være meningsfuld som supplement. Den reciprokke relation

Værdien af reciprokke relationer beskrives af deltagerne som en følelse af symmetri, en dyb levet forståelse og en optimistisk tro på hinanden. Relationer som er anderledes i forhold til dem i deres hverdag, hvilket stimulerer til, at mange beskriver at få nye perspektiver på sig selv, sine evner og sit handicap. Primært to aspekter synes at være afgørende i denne henseende. Som det første taler mange deltagere på campen om, hvordan de finder mod og tro til at handle ved at observere de andre deltagere handle. ”Hvis de kan - så kan jeg også”, er en almindelig sætning, der benyttes på campen, hvilket indikerer, at deres camp-kammeraters succes fortolkes som overførbare og hermed stimulerer en forbedring af tro på egne evner. Endnu et aspekt er, at flere af deltagerne beskriver, at de på campen møder hinanden med en mere optimistisk tankegang, hvilket får deltagerne til at tro mere på sig selv. En tro der medfører, at de engagerer sig og mestre udfordringer, som de ikke troede var mulige.

Med udgangspunkt i fundene og diskussionen anbefales det, at den sociale komponent tillægges en metodisk opmærksomhed og inddrages aktivt i rehabiliteringsindsatser for mennesker med CP. I fremtidige studier kunne det være interessant at undersøge betydningen af at kontinuerlige rehabiliteringsprogram inkluderer et bevægelsesfællesskab med ligestillede.

4.2 Studie II

Moved by Movement A phenomenological study of how young people and adults with cerebral palsy experience participating in the challenging adapted physical activities at a sports camp

I rehabiliteringsindsatser for mennesker med cerebral parese (CP) har fysisk aktivitet været en af de vigtigste metodologiske komponenter (Novak et al., 2013; Verschuren et al., 2008; 2016). I denne sammenhæng har fysisk aktivitet primært været anvendt som et behandlende middel, med et formål om at forbedre og vedligeholde nedsat fysisk funktionsevne (Normann et al., 2004; Kissow, 2006). Over de sidste 50 år er mere helhedsorienterede bevægelsesindsatser for mennesker med funktionsnedsættelser dog blevet mere udbredt. Særligt en tilgang med tilpasset idræt og bevægelse er vundet ind (Sherrill, 2004; Kissow & Therkildesen, 2006; Standal & Kissow, 2007). En tilgang der foruden et fokus på bevægelse, også har vist sig hensigtsmæssig i relation til både social og person udvikling (Powrie et al. 2015; Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Aggerholm & Martiny, 2017; McAvoy et al., 2006; Michalski et al., 2003; Ashton-Shaeffer et al., 2001; Nyquist et al., 2019). På trods af disse fund har helhedsorienterede bevægelsesindsatser fortsat ikke en stærk stemme i rehabiliteringsprogrammer for mennesker med CP. I dette studie ønskes en belysning af, hvorledes de udfordrende tilpassede idræts- og bevægelsesaktiviteter på sports campen opleves af deltagerne. En vinkel der vil bidrage med nye og supplerende psykosociale nuancer og perspektiver i relation til anvendelse af bevægelsesaktiviteter i rehabiliterende indsatser for mennesker med CP. Med udgangspunkt i fænomenologisk og narrativt inspirerede semi-strukturerede interviews (hvilke er beskrevet i metodeafsnittet), er deltagernes oplevelser af aktiviteterne på campen blevet undersøgt. Med udgangspunkt heri er fortaget en tematisk analyse, der har resulteret i to temaer, der præsenteres nedenfor. 4.22 Deltagernes oplevelse af aktiviteterne på camp

Det empiriske materiale viser, at deltagerne oplever aktiviteterne på campen som meget anderledes, sammenlignet med hvad de er vant til. Forskellige aktiviteter, der stimulerer forskellige oplevelser, som påvirker den måde, mange af deltagerne opfatter sig selv, deres handicap og kompetencer. I den tematiske analyse stod to temaer som centrale for deltagernes oplevelser: (1) Rutine > < Nyt (2) Meningsløs udfordring > < Meningsfuld udfordring.

Rutine >< Nyt

De fleste af deltagerne forbinder fysisk aktivitet, sport og bevægelse med enten øvelser og rehabiliteringsprogrammer hos fysioterapeuten eller med parasports discipliner, de har praktiseret. Tilsvarende for næsten alle er, at de har været involveret i det samme program og de samme discipliner det meste af deres bevægelsesliv. Et aktivitets- og bevægelsesliv, der er i stor kontrast til campen, hvor deltagerne hver dag bliver introduceret til 2-3 nye discipliner. Discipliner, der for dem ofte bliver oplevet som nye og anderledes. Hvad der gør aktiviteterne atypiske for deltagerne er paradoksalt nok, at de valgte aktiviteter typisk er "normale" idrætsgrene og således adskiller sig fra traditionelle fysioterapeutiske aktiviteter og parasports discipliner. Oplevelsen af de nye og anderledes aktiviteter stimulerer til forskellige oplevelser hos deltagerne. For mange er det en øjenåbner, at de rent faktisk kan det samme som mennesker uden et handicap. Dette skal dog ikke forstås som om de oplever det som nemt – tværtimod. Dyb koncentration er gennemgående for, hvordan deltagerne beskriver deres engagement i disse discipliner. Ydermere beskriver specielt kørestolsbrugerne, hvordan de oplever deres egen og andres kroppe på en helt ny måde. Et sidste element mange fortæller om, er oplevelsen af at blive overrasket over egne evner. Meningsløs udfordring > < Meningsfuld udfordring

I kontrast til campen beskriver mange af deltagerne (især kørestolsbrugerne), hvordan de i deres hverdag ofte præsenteres for rolige, afslappende og mindre udfordrende aktiviteter. Nogle deltagere fortæller dog også om udfordringer forbundet med deres træning, men i deres optik bliver de ofte meningsløse for dem. I modsætning hertil beskriver næsten alle deltagere, hvordan de mest udfordrende aktiviteter på campen medfører til de mest betydningsfulde og meningsfulde oplevelser. Meningsfuldheden og betydningen er i først omgang til stede som en øjeblikkelig følelse af overvældende glæde og stolthed over at have udført noget, de opfatter som ekstraordinært. Udover denne umiddelbare følelse af stolthed har mestringen af de udfordrende oplevelser et meningsfuldt overførselspotentiale. Et potentiale, der kan opdeles i tre underkategorier, som hypotetisk kan være til stede på samme tid. Hvad der er beskrevet af deltagerne, er en potentiel overførbar aktivitet, strategi og fortælling. Med dette menes, at eksempelvis en mestring af aktiviteten klatring kan medføre, at deltagerne også har mod på at klatre, når de kommer hjem. Det kan også være, at det ikke er selve aktiviteten klatring, der overføres, men derimod den strategi, som deltageren benyttede til at springe ud i aktiviteten, de tager med sig. Til sidst kan overførbarheden ligge i den fortælling, som deltagerne tager med sig. En fortælling om eksempelvis at være modig, og turde gøre noget de synes er 72

risikofyldt. En fortælling de kan tage med sig hjem, og benytte næste gang de står i en anden risikofyldt situation.

4.23 Værdien af anderledes aktiviteter

Diskussionen omhandler hvordan fundene kan bidrage til nye aspekter og overvejelser i relation til, hvordan bevægelsesaktiviteter kan være meningsfulde i rehabiliteringsindsatser for mennesker med CP. Som det første er der alene et potentiale forbundet med at præsentere mennesker med CP for forskellige idrætter og bevægelser fremfor rutine øvelser, der primært styrker den biologiske krop. Et potentiale der bunder i at en introduktion til forskellige bevægelseslandskaber og muligheder, vil stimulere til nuancerede oplevelser. Oplevelser hvor deltagerne i udforskningen af deres egen krop, handicap og evner i forskellige situationer, skaber en mere realistisk opfattelse af sig selv. En opfattelse, der vil gøre dem i stand til i højere grad at tage beslutninger baseret på levede sammenlignelige erfaringer i stedet for hypotetiske scenarier, der kan være stærkt influeret af usikkerhed, tvivl og andres påvirkninger. Ydermere er der et stort potentiale forbundet med at vælge idræts- og bevægelsesaktiviteter som deltagerne har en meget begrænset erfaring med, og hermed formodentlig vil skabe en negativ mestrings-forventning til. Ved at mestre disse aktiviteter, som deltagerne ved først indtryk fortolker som uhåndterlige, får de en betydningsfuld succesrig oplevelse. Denne type oplevelser er et af kerneelementerne på campen og giver deltagerne et instinkt boost og følelse af modstandsdygtighed, de kan tage med hjem.

På baggrund af fundene konkluderes det at anderledes og udfordrende bevægelsesaktiviteter, der både rummer et fysisk og psykosocialt potentiale kan have et potentiale i det rehabiliterende arbejde med unge og voksne med CP. I fremtidige studier kunne det være interessant at undersøge betydningen af at benytte helhedsorienterede bevægelsesaktiviteter som en del af den almene terapeutiske praksis. Tilmed kunne det være interessant at undersøge, hvordan andre sårbare målgrupper oplever at deltage i et lignende bevægelsesprogram.

4.3 Studie III

You learn to believe more in yourself Experienced development processes after attending a resilience-based sports camp for young people and adults with cerebral palsy

Flere studier viser tydeligt, at mennesker med cerebral parese (CP) ikke deltager i sociale og samfundsmæssige arenaer i samme grad som mennesker uden funktionsnedsættelser (Imms et al., 2008; Shikako-Thomas et al. 2008; Wendelborg & Ytterhus, 2009; Michelsen et al., 2014; 2017). Traditionelt set har den lavere grad af deltagelse for mennesker med funktionsnedsættelser været kædet sammen med deres fysiske begrænsninger (Barnes, 2001, Rosenbaum et al, 2007). Dog viser adskillige studier, at denne kausalitet mellem fysisk funktionsevne og deltagelse ikke kan bekræftes (Adair et al, 2015; Wright et al., 2008; Novak et al, 2013). Andre studier viser derimod, hvordan miljømæssige- og personlige faktorer er vigtige komponenter i forhold til at stimulere til deltagelse (Imms et al. 2016; Maxwell et al., 2012; Colver et al., 2012; Anaby et al., 2014). I dette studie undersøges det hvilke spor en sports camp sætter i unge og voksne med cerebral parese (CP). Ydermere har studiet til hensigt at opnå en bedre forståelse af hvorledes deltagerne kan overføre deres oplevelser på campen til deres hverdag efter campen. Sports camps er udviklet af Elsass Fonden (Andersen, 2016), og har til formål at stimulere til resiliensprocesser (Luthar, 2003; Rutter, 2008; Ungar & Liebenberg, 2013). Mere konkret er målet med campen at øge deltagernes motivation til idræt og bevægelse samt styrke deres sociale relationer, selvopfattelse og tro på fremtidige muligheder (Andersen, 2016). I undersøgelsen heraf benyttet semistruktureret interviews med 16 deltagere 5-6 måneder efter camp.

4.32 Oplevelsen af hvordan en sports camp sætter spor

Det empiriske materiale viser, at fire temaer indfanger essensen af, hvordan sports campen har stimuleret til ændringer i deltagernes liv. De fire temaer er: (1) Sociale relationer og deltagelse (2) Tilgang til udfordringer (3) Historier og personlige fortællinger (4) Aktiviteter og deltagelse. I relation til hvert tema fremgår det, at der er dimensioner, som deltagerne direkte kan overføre til deres hverdag, og andre aspekter som er overførbare i en transformeret version.

Sociale relationer og deltagelse

Direkte

Et værdifuldt og anderledes venskab nævnes som et af de mest

gennemgående og meningsfulde direkte følger af campen. I modsætning til deres venner uden CP beskriver deltagerne en følelse af at have forbindelse med mennesker, der viser omsorg, forstår og støtter dem. Ikke desto mindre beskriver deltagerne mange niveauer af venskab.

Transformeret

De værdifulde sociale oplevelser, som mange af deltagerne har haft på

campen, ser ud til at have påvirket nogle af deltagernes motivation og mod til at konfrontere og ændre nogle af de sociale vaner, konstruktioner og relationer, de kæmper med i deres hverdag.

Tilgang til udfordringer

Direkte

På campen blev der blandt andet fokuseret på at udvikle strategier, der

hjalp deltagere til at forpligte sig til at gøre, hvad de ønskede at gøre på trods af følelser af angst, bekymring eller tvivl. Flere af deltagerne beskriver, hvordan de har brugt nogle af disse strategier i deres hverdag, når de har fundet det vanskeligt at tage en risikabel beslutning, eller når de har været nervøse eller bange for at udføre en given handling.

Transformeret

Næsten alle deltagere fortæller, hvordan campen ikke blot har givet

konkrete mentale værktøjer i udfordrende situationer, men på et generelt plan har ændret deres tankegang i forhold til, hvordan de opfatter og gebærder sig i udfordrende situationer. I stedet for at fortolke udfordringer som mulige fiaskoer, anser mange dem som mulige sejre. En sejr der ikke nødvendigvis relaterer sig til selve præstationen (lykkes jeg eller ej), men derimod er forbundet til det at være modig nok til overhovedet at engagere sig i udfordringen. Historier og personlige fortællinger

Direkte

På campen fik alle deltagere nye oplevelser, som genererede historier,

som de har kunne fortælle til deres familier, venner og kollegaer. Især oplevelserne fra de adventureprægede aktiviteter beskrives som værende værdifulde historier.

Transformeret

At kunne fortælle en historie kan være meget værdifuld, men det, der

virkelig tæller, er hvad deltagerne fortæller om sig selv - deres personlige historie. Den mest gennemgående ændring der er beskrevet af deltagerne - uanset alder, køn og handicapniveau - er en styrket selvfortælling. Deltagerne beskriver således en ny og styrket opfattelse og fortolkning

af sig selv og deres egne evner. Ændringer de dels kobler til de betydningsfulde succesrige oplevelser de har fået på campen, og dels relaterer til det inkluderende og tillidsfulde sociale miljø de har været en del af. Aktiviteter og deltagelse.

Direkte

De fire dage på camp er fyldt med forskellige idrætsaktiviteter. Nogle

af disse aktiviteter viser deltagerne også interesse for efterfølgende – dog på forskellige planer. Mens nogle starter på en fritidsaktivitet inspireret fra camp (eks. bordtennis eller spinning), bliver nogle af aktiviteterne integreret i deltagernes hverdag (eks. cykling). Til sidst giver flere også udtryk for, at de godt gad prøve nogle af adventuredisciplinerne (eks. klatring eller kajak) igen på et tidspunkt.

Transformeret

Den styrkede selvfortælling, der er beskrevet af de fleste deltagere, har

tilmed øget deres motivation til at konfrontere nogle af de udfordrende områder, de personligt opfatter som begrænsende for deres liv. Noget de beretter, de tidligere ikke har haft energi, tro eller mod til at håndtere. Dette er udfordringer, der ikke blot relaterer sig til idræt, men som også omfatter deltagernes skole-, arbejde- og fritidsliv.

På trods af disse mange gavnlige følger af camp, er det også tydeligt at deltagerne ikke formår at omsætte deres motivation fra campen til handling efter camp i det omfang, der er potentiale for. Fundene indikerer således, at der er elementer, der gør at denne proces udfordres. De to elementer der træder frem, omhandler at camp er en begrænset periode, hvor man efterfølgende overlades til sig selv, og at deltagernes lokale miljø ikke inddrages tilstrækkeligt. Det er således hårdt at komme alene hjem, når ingen helt forstår, hvad man har gennemgået. Den gejst, tro og motivation, der bliver bygget op på campen, kan således være svær at integrere i en hverdag, hvor intet udover en selv - har ændret sig.

På baggrund af fundene kan det konkluderes, at en sports camp særligt kan være medvirkende til, at styrke deltagernes sociale relationer til ligestillede, deres egen selvopfattelse og motivation til at konfrontere de områder de føler sig mest udfordret på i deres liv. Dog konkluderes det også, at der bør være et større fokus på at transformere campens oplevelser over i deltagernes hverdag, hvis motivationen og troen der sidder i deltagerne, for flere skal blive til handlinger i deres verden

efter campen. Det anbefales således, at der kommer en opfølgning efter camp og en større inddragelse af deltagerne lokale miljø. Da sports camps er bygget op omkring teoretiske principper, der ikke alene adresserer mennesker med CP, kunne det være interessant for fremtidige studier at undersøge, hvordan lignende resiliensbaserede sociale bevægelsesinitiativer opleves af og har betydning for andre sårbare målgrupper.

4.4 Studie IV

The Red Zone – the psychology of significant mastery experiences A grounded theory study based on challenging and adapted physical activities

Kropslige levede oplevelser er en af de mest afgørende elementer, når der skal stimuleres til psykologiske forandringsprocesser (Bandura, 1977). Bandura (1977; 1995; 1997) refererer til denne personlige kropslige kilde som ’mastery experiences’, og anser dem for at have den største indflydelse på hvorvidt mennesker udvikling en høj eller lav tro på egne evner (self-efficacy). Mestringsoplevelser i udfordrende situationer er således med til at skabe en styrket tro på egne evner, mens gentagende nederlag er med til at devaluere troen på egne evner (ibid.). I denne undersøgelse præsenteres et fænomen som benævnes ’rød zone oplevelser’. Rød zone fænomenet stammer fra et studie af fire sports camps for mennesker med cerebral parese (CP) (Andersen & Winther, submitted (b)), hvor udtrykket blev brugt som beskrivende for situationer, hvor deltagerne som udgangspunkt havde en oplevelse af manglende tro på egne evner, stor usikkerhed, stress eller frygt. Dette er elementer der ofte vil medvirke til passivitet eller en undvigelsesadfærd (Bandura, 1977). Dog endte mange af deltagerne på campen med at engagere sig i disse rød zone-oplevelser, og omtalte dem tilmed som deres mest betydningsfulde oplevelser. Med udgangspunkt i disse rød zone-oplevelser søger dette studie via en grounded theory analyse at undersøge, hvad der karakteriserer oplevelser, der stimulerer til de mest betydningsfulde succeser, og hermed også til de mest intense udviklingsprocesser af troen på egne evner.

4.41 Den røde zone

Dette studie udspringer af anden interviewrunde, der havde til formål at belyse deltagernes oplevelse af at være på sports camp. Under interviewene og i udarbejdelsen af den tematiske analyse optog særligt en type oplevelse vores nysgerrighed og interesse. En oplevelse, som deltagerne forbandt med følelser, tanker og kropslige reaktioner, der var relateret til panik, angst eller mangel på evner, hvorfor aktiviteten som udgangspunkt syntes umulig at håndtere. Ikke desto mindre endte deltagerne med at mestre de udfordrende situationer og ydermere associere dem med de mest meningsfulde og betydningsfulde oplevelser, de havde haft på campen. Fælles for de fleste af deltagerne var, at de brugte udtrykket ”den røde zone” til at beskrive disse udfordrende situationer. Et udtryk de har adapteret på campen, hvor de lærte at kommunikere i forhold til begreberne grøn- (jeg kan/tør), gul- (jeg kan/tør måske) og rød zone (jeg kan/tør ikke).

For at forstå deltagernes oplevelser i rød zone og det tilhørende udviklingspotentiale, blev der udført en grounded theory analyse som beskrevet i metodeafsnit 3.52. 4.42 Forståelse for læringspotentialet

Ved at studere rød zone-oplevelserne i relation til de tre trin, der er angivet i grounded theory analyseprocessen, opstod en kernekategori. Kategorien forener kodningsmønstrene til en helhed og indeholder således kernen af det opnåede teoretiske koncept. Hvad der beskrives af deltagerne og bør forstås som kernekategorien, er begrebet inkongruens. En inkongruens, der i denne sammenhæng kan defineres som: Potentialet for en styrkende rød zone oplevelse er til stede, når der er inkongruens mellem deltagernes forudfattede negative forventninger til ikke at kunne håndtere en vilkårlig udfordring, og den deltagerens efterfølgende positive oplevelse af at kunne håndtere udfordringen. I denne sammenhæng skal termen negativ forstås som en forventet uhåndterbar udfordring. I modsætning hertil skal udtrykket positiv forstås som en oplevet håndterbar udfordring. Udviklingen opstår, da oplevelsen umiddelbart vil være uforenelig med deltagerens eksisterende forventninger til sig selv. En kontrast der hermed åbner muligheden for en psykosocial læringsproces, hvor den deltagende i interaktion med verden ændrer sin fortolkning og fortælling om udfordringerne i verden og sine egne evner og muligheder.

I den tredje del af analyseprocessen – selektiv kodning – viste det sig, at yderligere tre supplerende kerneelementer skal være til stede, for at en meningsfuld udviklingsproces kan finde sted. De tre kerneelementer er: 1. Meta-motivation 2. Betydningsfulde andre 3. Transformativ selvfortælling. Meta-motivation

I rød zone oplevelser vil deltageren have en umiddelbar modstand, der gør at denne ikke vælger at deltage af sig selv. Dog er det væsentligt, at der er en form for motivation til stede, så denne ikke påføres et overgreb, der kan stimulere til en traumatisk oplevelse. I denne sammenhæng introduceres begrebet meta-motivation. En motivation, der er defineret ved en indre konflikt mellem vilje og handling. På trods af denne umiddelbar modstand der passiviserer deltageren, skal personen have en indre lyst til at deltage i udfordringen. En lyst der således ikke er forbundet med et umiddelbart: ”Jeg kan, jeg tør, jeg vil”, men derimod i et metaniveau som: ”Jeg gad godt jeg kunne, jeg gad godt jeg turde, jeg gad godt jeg ville”. Er denne meta-motivation tilstede, så er der mulighed for en styrkende udviklingsproces. Betydningsfulde andre

Som nævnt ovenfor defineres disse inkongruente udviklingsprocesser i rød zone ved et paradoks, hvor den deltagende gerne vil begive sig ud i udfordringen, men alligevel har en indre modstand, der leder til passivitet. Det er i denne sammenhæng, at en betydningsfuld anden bliver vigtig. En der tror på deltageren eller kan agere rollemodel, og hermed få deltageren med ud i den udfordring, som han/hun ikke formår at begive sig ud i på egen hånd. Transformativ selvfortælling

Som et sidste element er bearbejdning af oplevelsen væsentlig. Det er således afgørende for udviklingspotentialet at deltageren efterfølgende skaber en ny selvfortælling, der medvirker til et styrket selvbillede samt en styrket tro på mulighederne i verden.

Til sammen kan den styrkende proces i rød zone opsummeres i nedenstående proceslinje. Before A participant - driven by a meta motivation - face a perceived unmanageable challenge.

Under A significant other supports and believes in the participant, who despite great doubt choose to act and complete.

After The participant has a mastery experience, takes self-credite and makes a transformative selfstory.

Studiet viser, at udfordrende rød zone oplevelser kan være medvirkende til betydningsfulde udviklingsprocesser, for mennesker der har et begrænset perspektiv på sig selv. Der er behov for studier, der undersøger hvorledes rød zone opleves af andre målgrupper i andre situationer for at forstå det fulde potentiale. Tilmed er der behov for tydelige retningslinjer for, hvorledes professionelle bedst muligt kan være medskabende til hensigtsmæssige rød zone oplevelser.

5. Diskussion - videre forskning Med en belysning af hvad deltagerne oplever, og hvordan de udvikler sig på baggrund af deltagelse i en sports camp, er det ydermere en hensigt med denne afhandling at få en større forståelse for praksissen sports camp. En forståelse, der tilmed åbner op for en videreudvikling af indsatsens praksismetoder og teoretiske og praktiske rammer. Med udgangspunkt i studiernes fund og diskussioner, vil der i det følgende blive åbnet op for nye perspektiver, der kan være interessante og relevante at forfølge fremadrettet.

5.1 Kan >< Tør I de forskellige studier er det blevet tydeligt, at deltagernes begrænsninger ikke blot har været en afspejling af manglende motoriske eller kognitive færdigheder, hvilket typisk har været adresseret som kerneudfordringerne for mennesker med CP’s funktionsevne (Rosenbaum et al., 2007). Hvad der derimod synes at være afgørende i de fleste tilfælde, er at deltagerne har fået skabt en selvopfattelse og en fortælling omkring deres funktionsevne, der har udviklet en mistillid til egen formåen og hermed udviklet en frygt for at handle. En dybtliggende kropslig tvivl og mistro, der også fremhæves i studier, der undersøger mennesker med CP’s oplevelse af dem selv (Sandström, 2007; Martiny, 2015, Brunton & Bartlett, 2013; McLaughlin & Coleman-Fountain, 2014;). Deltagernes modstand mod deltagelses- og forandringsprocesser kan således ses som overvejende at være et udtryk for en lav self-efficacy (Bandura, 1977; 1997). Dette bevirker således at de udfordringer deltagerne møder i mange tilfælde vil blive opfattet som potentielle trusler, hvorfor flere som udgangspunkt vælger at undvige de pågældende aktiviteter eller situationer. I langt de fleste tilfælde på campen, er deltagernes største barriere således ikke relateret til at de objektivt set ikke kan handle, men at de ikke tør handle, fordi de forudsiger worst-case-scenarier. Det er således ikke kun færdigheder eller mangel på samme, der er rammesættende for, hvordan deltagerne agerer. Det er i mindst lige så høj grad frygten for, hvad de potentielle sociale, emotionelle og fysiske konsekvenser for deres handlinger kan medføre, der er determinerende. I relation til de konstruktioner (preferences, activity competences og sense of self), der ifølge Imms mfl. (2016), er relateret til mennesker med funktionsnedsættelsers deltagelse, understreger empirien blot aktualiteten af at mennesker med CP får rum til at styrke deres ’sense of self’, så de kan få opbygget en selvsikkerhed og beslutsomhed, der kan støtte dem i at begive sig ud i udfordrende situationer.

Med udgangspunkt i disse refleksioner kunne det være interessant, at videre forskning dels beskæftiger sig mere med at få en bedre forståelse for, hvad der hjælper mennesker til at handle i meningsfulde udfordrende situationer, der er præget af manglende tro på egne evne, nervøsitet og frygt. Ydermere kunne det være interessant at undersøge, hvorledes der kan opbygges og implementeres helhedsorienterede praksisindsatser med fokus på at træne og udvikle modige mennesker, der tør begive sig ud i meningsfulde handlinger, på trods af de kan være akkompagneret af nervøsitet og frygt.

5.2 Intensitet >< Kontinuitet Fundene indikerer, at deltagelse i sports campen i langt de fleste tilfælde sætter positive udviklingsspor, der både har influeret campdeltagernes oplevelse af sig selv og måden hvorpå de deltager i deres eget liv. Fundene bekræfter således den teoretisk forståelse af at erfaringer, der er opnået på baggrund af deltagelse i en kontekst, kan overføres til andre kontekster (Dreier 2007; 2008; Lave 1999). Overførbarhed til hverdagen er ligeledes fund, der også ses i andre studier af intensive campophold for mennesker med funktionsnedsættelser (Baksjøberget et al. 2017; Preede et al., 2015; Anderson et al., 1997; McAvoy et al., 2006; Brannan, 1997). Dog fremgår det ligeledes af undersøgelserne i denne afhandling, at der i enkelte filfælde ydermere kan være et etisk dilemma relateret til deltagelsen i en sports camp. Et dilemma, der relaterer sig til at flere af deltagerne oplever, at de relationer samt den gejst, tro og motivation de kommer hjem med efter camp, ikke kan omsættes i deres hverdag i det omfang de ønsker. Det ses således at flere af deltagerne efter endt campophold oplever at stå meget alene med deres campoplevelser og deres hverdagsudfordringer. Udfordringer som de også havde før campen, men som pludselig fremtræder tydeligere, da der på campen er blevet skabt en erfaring og bevidsthed omkring, hvorledes de i et stærkt campfællesskab og tilpassede aktiviteter kan mestre og håndtere de fleste udfordringer. Det samme dilemma viser sig blandt andet i et studie af Goodwin & Samples (2005), hvor en mor til en deltager beskriver hvorledes den intense campuge havde givet hendes søn nogle nye optimistiske perspektiver på sig selv og de muligheder han har i verden. Dog syntes det i overensstemmelse med nogle af sports camp deltagerne ligeledes svært for dem at indfri disse forestillinger i deres efterfølgende hverdag. Ligeledes finder Devine & Dawson (2010) i deres studie, at den stigning, der blev målt i social accept og selvværd efter campen ikke kunne måles

efter 6-8 uger. I studiet kunne det således ikke konkluderes at campen havde nogen længerevarende effekt. Dilemmaet består således i, at camps på den ene side synes at bidrage til nye betydningsfulde udviklingsprocesser, men på den anden side ikke i alle tilfælde synes at kunne overføre disse elementer tilfredsstillende til deltagernes hverdag. For enkelte deltagere synes tiden efterfølgende ligefrem at være svær at håndtere. Med udgangspunkt i denne betragtning kan følgende spørgsmål stilles: Kan et intensivt, stimulerende og opløftende campophold forsvares, hvis det bevirker, at enkelte deltagere efterfølgende oplever at blive efterladt alene i deres hverdag? Og er det reelt set en udviklingsproces, hvis nogle deltagere oplever at flytte sig i den lokale campsammenhæng, men forbliver i deres selvbillede og adfærdsmønstre, når de komme hjem? I relation til videre forskning synes det dog mere relevant at spørge: Hvorledes kan sports campkonceptet optimeres og udvikles, så der sikres et endnu større potentiale for overførbarhed til deltagernes hverdag?

5.3 Cerebral parese >< Andre målgrupper Sports camps bygger på modeller hentet fra resiliensforskningen (Garmezy et al., 1984; O’Leary, 1998; Borger, 2010), og hviler således på et fundament, der rækker udover over diagnosen cerebral parese. I overensstemmelse hermed viser studie III ’You learn to believe more in yourself’, at deltagerne ikke blot udvikler sig inden for ét bestemt område, men derimod oplever at udvikle sig i relation til netop det område, de selv anser som deres største sårbarhed. To aspekter, der stimulerer en nysgerrighed for at undersøge, hvorvidt andre målgrupper med andre sårbarheder vil opleve en meningsfuld udvikling ved at deltage i en indsats bygget op omkring de samme teorier og metoder, der anvendes i sports campen. Spørgsmålet og antagelsen om hvorvidt andre målgrupper vil have gavn af en tilsvarende indsats, kan relateres til mere end det teoretiske grundlag for indsatsen og fundet i studie tre. Flere andre campstudier, der er bygget op omkring lignende teoretiske og metodiske perspektiver angiver, at mange forskellige målgrupper giver udtryk for gavnlige effekter, der hjælper dem i den sårbar position netop de er i. Som omtalt i afhandlingen gælder dette i forhold til mennesker med mange forskellige fysiske handicaps (Goodwin & Samples, 2005; Goodwin & Lieberman, 2011; AshtonShaeffer et al., 2001; Nyquist et al., 2019; Devine, Piatt & Dawson, 2015). Flere studier viser dog også at en campoplevelse med ligestillede i en bevægelseskontekst kan være værdifuldt for mennesker med mere usynlige handicaps så som ADHD og autisme (Pleiss, 2016) samt for 83

mennesker der lider af både fysisk og psykisk invaliderende sygdomme, som eksempelvis kræft (Gillard &Watts, 2013), diabetes (Winsett et al., 2010), PTSD (Gelkopf et al., 2013) og depression (Norton, 2009). At der findes studier, der understøtter den gavnlige effekt af at anvende forskellige genre af tilpasset idræt og bevægelse i relation til mange forskellige sårbare målgrupper, understøtter blot denne afhandlings pointe om, at aktiviteter med kroppen i centrum i rehabiliteringen bør have en mere helhedsorienteret tilgang og målsætning.

6. Konklusion To paradokser fylder det billede, der i dag tegner sig af de sundhedsfaglige indsatser, der udbydes for mennesker der lever med CP. For det første har indsatserne et primært fokus på at styrke og kompensere for de nedsatte fysiske funktioner. Dette er på trods af, at adskillige forskningsstudier viser, at de fleste mennesker, der lever med CP, oplever at have udfordringer der både relatere sig til fysiske såvel som psykologiske og sociale problemstillinger. Helhedsorienterede problemstillinger som ikke alene kan imødekommes gennem fysiske forbedringer. For det andet bliver disse indsatser, selv i et rigt velfærdssamfund som Danmark, kun udbudt systematisk indtil den dag den unge med CP fylder 18 år. Dette er velvidende, at CP er en livslang tilstand. Med denne afhandling har det været et mål at bidrage med nye indsigter omkring, hvilken betydning det har, når indsatsen for unge og voksne med CP integrerer fysiske, psykologiske og sociale dimensioner både i sit design og primære formål. Mere konkret er det via en fænomenologisk inspireret tilgang blevet belyst hvilke oplevelses- og udviklingsaspekter, der fremstår som betydningsfulde under og efter deltagelse i den helhedsorienterede resiliensbaserede indsats Sports Camp¸ der er udviklet af Elsass Fonden. Studierne har vist, at unge og voksne med CP særligt tillægger det rummelige og styrkeorienterende fællesskabet blandt ligestillede en stor værdi. På sports campen oplever de således et unikt tilhørsforhold, en social sikkerhed, en opløftende gruppesynergi, symmetri i evner, at være en ressource for andre og en fælles forståelse af at være et menneske med CP. Dimensioner, der medfører, at deltagerne beskriver en oplevelse af større tro på sig selv, mod til at være sårbare samt en parathed til at deltage aktivt i de udfordringer, de bliver præsenteret for. Foruden oplevelsen af et betydningsfuldt fællesskab tillægges specielt de mere udfordrende tilpassede idræts- og bevægelsesaktiviteter en værdifuld betydning. I interaktionen med udfordringerne oplever deltagerne store succeser, der stimulerer til et nyt og mere optimistisk perspektiv på sig selv, deres handicap og kompetencer. I undersøgelsen af deltagernes oplevelser med de udfordrende aktiviteter, opstod der tilmed en nysgerrighed. Dette har medført udviklingen af et nyt teoretisk koncept, der i afhandlingen omtales som ’rød zone oplevelser’. Kernekategorien, der indfanger fænomenet, defineres som en subjektiv mistolkning, der skaber inkongruens mellem deltagerens forudfattede negative forventning til ikke at kunne håndtere en vilkårlig opgave, og den efterfølgende positive oplevelse af at kunne håndtere opgaven. Resultaterne viser, hvordan store udfordringer under de rette omstændigheder kan transformere og styrke mennesker med CP’s selvopfattelse og mulighedsrum. 85

I tiden efter camp beskriver deltagerne, at de oplevede positive ændringer i deres hverdag på to planer. På et niveau var der elementer fra sports campen, som de kunne implementere direkte i hverdagen. På et andet niveau, var der elementer fra campen, som viste sig i deres liv i nye transformerede versioner. Ændringerne som deltagerne fokuserer på, vedrører fire områder. 1) sociale relationer, 2) deltagelse i aktiviteter, 3) strategier til at håndtere udfordringer samt 4) ændring i selvbillede og selvfortælling. Foruden disse gavnlige fund, indikerer deltagernes udtalelser tilmed, at flere har svært ved at omsætte og integrere tankerne, ideerne og troen fra camp i deres hverdag, i det omfang de har motivationen til. Hverdagen efter camp opleves derfor af nogle som en ensom kontrast, der kan være svær at håndtere på egen hånd. Det anbefales således, at der i supplement til campen sættes større fokus på at integrere denne i deltagernes hverdag, samt at inkludere deres lokale sociale miljø i højere grad. Samlet set kan det på baggrund af afhandlingens resultater konkluderes at fællesskaber med ligestillede og kropslige mestringsoplevelser i tilpassede idræts- og bevægelsesudfordringer, kan styrke unge og voksne med CP’s selvopfattelse. En styrkelse, der i sidste ende viser sig som en motivation, en vilje og et mod til at opsøge nye muligheder, samt konfrontere de udfordringer livet byder på. Dog antyder resultaterne også, at denne proces ikke kan stå alene som en isoleret hurtig løsning i form af en sports camp. En camp kan skabe gode betingelser for et optimistisk vendepunkt, men kontinuerlige tiltag og indsatser bør tiltænkes, hvis motivationen, troen og modet skal forblive og sætte varige spor i både hverdagen og mennesket.

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Camp is freedom for me. Huge freedom. Because I am together with people who are a bit like me. They are in the same situation and canâ€™t make their arms and legs do as they like. It has just been so great. (â€Ś) I feel more comfortable with myself in some way. You dare to show who you are. I might be a little shy, but when I'm with you, it's actually not that bad.

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I dare to be myself The value of peer communities in adapted physical activity interventions for young people and adult people with cerebral palsy

Mie Maar Andersen¹ ², Helle Winther³

1 Elsass Foundation, Charlottenlund, Denmark 2 Department of Neuroscience, University of Copenhagen, Copenhagen, Denmark 3 Department of Nutrition, Exercise and Sports, University of Copenhagen, Copenhagen, Denmark

Keywords Disability Social community Sports camp Peers Rehabilitation

Corresponding author: Mie Maar Andersen Elsass Fonden Holmegårdsvej 28 DK - 2920 Charlottenlund Mail: mma@elsassfonden.dk Phone: (+45) 30489048

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I dare to be myself The value of peer communities in adapted physical activity interventions for young people and adult people with cerebral palsy

Abstract Research literature has shown that being a part of a disability peer community are highlighted as one of the most motivational and meaningful aspects in many adapted physical activity settings. Nevertheless, this focus is seldom found in the predominant rehabilitation intervention strategies and recommendations for people with cerebral palsy. This study investigated how people with cerebral palsy experience being a part a community with equal peers at a four-day resilience-based sports camp. Two semi-structured interviews with 16 participants from four of the camps were carried out. The first interview aimed at getting a sense of the participants and their life situation, and the second at getting a sense of their experiences at camp. We identified social dimensions that encouraged the participants to believe in themselves, dare to be vulnerable and participate in challenging activities. These dimensions included an experience of belonging, social security, empowering group-synergy, symmetry in perceived abilities, a sense of being a resource and a feeling of being seen and understood. The findings indicate that a community with peers can improve the self-perception and situated participation of young and adult people with cerebral palsy. Therefore, future clinical recommendations and strategies for people living with cerebral palsy could consider including this aspect.

Keywords: Disability; Sports camp; Peers; Social community; Rehabilitation

1. Introduction This paper proposes that healthcare systems would benefit from an increased understanding of the meaning and value for young people and adults with cerebral palsy of being a part of a peer movement community. This might enable healthcare systems to better integrate social dimensions into intervention and rehabilitation strategies and guidelines for young people and adults with cerebral palsy. In this paper we elucidate how young people and adults with cerebral palsy (CP) experience being a part of a peer community at a four-day sports camp for people with CP. Furthermore, we discuss how peer communities can enhance a rehabilitation process. 103

Research literature reports that being a part of a disability peer environment and community is one of the most motivational and meaningful aspects in diverse movement settings. In a systematic review, Powrie et al. (2015) investigated the meaning of leisure activities for children and young people with disabilities. All the included studies reported the importance of social themes consisting of friendships, feelings of belonging and social connectedness as a positive factor in meaning creation for children and young people with disabilities. Furthermore, the study concludes that â€œFriendship, being with others, and a sense of belonging to a social group often seemed to be more important to CYP [children and young people] than the leisure activity itselfâ€? (Powrie et al., 2015 p. 1006-1008). The study also emphasizes the value of segregated settings such as camps, as they provide a special sense of connectedness with others with disabilities (ibid.). In this regard, Standal & Jespersen (2008) focus on the learning potentials associated with being in a peer community in a rehabilitative movement camp setting. In the study the most prominent finding is that the participants learn a lot by observe and model each other. Furthermore, it is valued in the learning situation that the peers truly understand each other. Finally, the discussions, negotiations of meanings, and shared experiences in the group of peers helps the participants forming a realistic interpretation of their possibilities in everyday life. In other camp studies the value of the peer element is highlighted too. Thus, Dawson & Liddicoat (2009) describe the experiences from a summer camp for adults with CP and found that being a part of a supportive community was the most prominent theme. Many of the participants described the camp and the other members to be like a loving home and a family that had great respect for each other. Such a sense of belonging, respect and acceptance caused by shared life experiences and a deep understanding are seen in several other studies that investigate the experience of being at a camp for people with disabilities (Goodwin & Samples, 2005; Michalski et al., 2003; AshtonShaeffer et al., 2001; Nyquist et al., 2019; Aggerholm & Moltke Martiny, 2017; Goodwin et al., 2011; McAvoy et al., 2006; Devine and Dawson, 2010; Devine et al., 2015). In some of these studies, other elements of the peer community are also emphasized. Thus, a common finding is that being in a peer community at camp helps the participants expressing oneâ€™s true self and additionally develop an empowered sense of self (ibid.). This perspective is in Nyquist et al. (2019) and Goodwin et al. (2011) linked to being able to help and teach others. In other studies, this perspective is related to a sense of not being an outsider (Goodwin & Samples, 2005; Goodwin et al., 2011) and from speaking with and observing peer participants (Goodwin & Samples, 2005; Ashton-Shaeffer et al., 2001; Goodwin et al., 2011; Aggerholm & Moltke Martiny, 2017). 104

Despite the many benefits of peer movement communities for people with disabilities, such communities are seldom built into the predominant intervention strategies and recommendations for people with CP (Novak et. al., 2013; Wang & Yan, 2018, Sundhedsstyrelsen, 2014). The absence of peer movement communities may be linked to the most used definition of CP, and to traditions in the health care system. Cerebral palsy is defined as â€œa group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.â€? (Rosenbaum et al, 2007, p. 9). This definition refers to limited motor functions as the main adversity and as the main explanation for activity limitations. This correlation between physical factors and human behavior is reflected in clinical practice, guidelines and strategies for rehabilitation and treatment of CP in the health care system (Novak et. al., 2013, Sundhedsstyrelsen, 2014). For treatment and rehabilitation in relation to CP, the most used methods in the health care system are standard physiotherapeutic and occupational training and therapy, orthopedic surgery, and antispastic medical treatment (Wang & Yan, 2018). These interventions rest on the hypothesis that the improved motor control and function provided by such methods leads to better functioning (Barnes, 2001). This concept of functioning stems from the definition in the International Classification of Functioning, Disability and Health (ICF) created by the World Health Organization (WHO), and includes a personâ€™s body structure and anatomy, activity, and participation (ICF, 2001). Despite this correlation between motor function and functioning, research has shown that improvements of physical aspects do not have a strong clinical effect on participation and activity in daily life (Sheean 2001; Pandyan et al. 2005; Aisen et al. 2011, Novak, 2013). This indicates that improvements in physical functions can be beneficial to some extent, but cannot alone accommodate the complexity related to living with CP. According to Martiny (2015), psychosocial challenges related to people with CP, such as fundamental bodily uncertainty rooted in self-doubt and pervasive social anxiety, also need to be addressed. If we recognise that the functional challenges of people with CP are grounded in both physical and psychosocial factors, we need intervention strategies that address and accommodate both groups of factors. To better understand how these factors can be helpful in rehabilitative practice, this paper aims to gather more insights on the meaning of peer communities at a camp for young people and adults with cerebral palsy. Furthermore, we discuss how dimensions of the peer community can provide benefits in a rehabilitation context by reflecting on theories that link social and environmental

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factors with how people behave and become motivated (Deci & Ryan, 1985;2000; Bandura, 1977;1995;1997; Goffman, 2009; Smith & Sparkes, 2006).

1.1 Theoretical background Deci & Ryan’s (1985; 2000) Self-Determination Theory (SDT) describe what makes people thrive, and what motivates people to explore the world and seek interaction and fellowship with the outside world. They conclude that three basic psychological needs must be fulfilled for people to thrive and be motivated for the activities they are involved in. These are the needs to experience autonomy, competence and relatedness. That is, a person needs to experience a degree of free will and personal initiative (autonomy) to manage the tasks they meet (competence), and to experience community and fellowship with others (relatedness). The third psychological need, relatedness, is central to our perspective in this paper. Another relevant theoretical point is Bandura’s (1997) concept of self-efficacy. This concept is “(…) concerned with how people judge their capabilities and how, through their self-percepts of efficacy, they affect their motivation and behavior.” (Bandura 1982, p. 122). Expectations of selfefficacy can thus determine whether a person will be able to exhibit coping behavior and how much effort they will put into the process. A high level of self-efficacy will typically motivate someone to make a sufficient effort and create potential for success, whereas people with low levels of self-efficacy often be demotivated and cease efforts early and fail. A high level of selfefficacy will thus potentially stimulate more active and engaging behavior in people with CP. In a social and environmental perspective, Bandura states that self-efficacy is highly influenced by the social relations we interact with and are surrounded by. Besides the importance of having mastery experiences and positive affective/physiological feedback, Bandura (1997) also proposed two social factors that people look at when evaluating their levels of self-efficacy – vicarious experiences and verbal persuasion. Vicarious experience refers to learning through observations of the actions of others. A related point is that observing a person who successfully engages in an activity is more likely to increase self-efficacy, if the person is perceived as being similar to the observer – especially in cases where other personally salient barriers are similar, e.g., if a chronic condition is shared. Verbal persuasion means that our social relations can strengthen our beliefs in our self. Being persuaded that we possess the capabilities to manage and master certain activities thus means that we are more likely to put in the effort when problems arise. In accordance with Bandura, Goffman’s (2009) theory of stigma focuses on the meaning of being in an environment with ‘like-situated individuals’, who are fellow-sufferers. In Goffman’s terminology, similar persons are referred to as ‘the own’. Furthermore, a group of people who 106

carry the same stigma is known as an ‘in-group’. This in-group is a group of people who, unlike much of the rest of society, are seen as sympathetic, as they through their own experiences know exactly what it means to be a person who carries the same stigma. According to Goffman, this relationship between relatable people can enhance the creation of a safe environment where a sense of acceptance and understanding can be achieved (ibid.). Such social experiences contrast with many other social situations in which the stigmatized person will often be labeled as different and will feel socially excluded. A further perspective that highlights the importance of social community for our identity and behavior is provided by the two narrative researchers Smith & Sparkes (2006). They argue that environmental input is central to our identity and behavior, as “[…] the stories that people tell and hear from others form the warp and weft of who they are and what they do” (Smith & Sparkes, 2006, p. 169). This means that the stories people with CP hear about themselves will influence their self-stories and direct their actions. A social community that tells empowering stories can thus potentially stimulate more optimistic and action-orientated behavior.

2. Method 2.1 Phenomenological approach and method The present study uses a phenomenological inspired approach to elucidate the meaning of peer communities, as the phenomenological approach allows us to study how people create meaning from their experiences in their lifeworlds (van Manen, 1997;2016; Jacobsen et al., 2015; Giorgi & Giorgi, 2003;). In a phenomenological perspective, the lifeworld represents the individual’s subjective way of perceiving and being in the world. The lifeworld in focus in this paper is the world the participants experience in a first-person perspective when participating in the peer community at a sports camp. This approach is chosen for four reasons. First, this study wishes to shed light on the underprioritized area of peer communities in interventions for people with CP. Second, a qualitative descriptive approach can help us understand the significant nuances in peer communities that can influence interventions. Third, this study wishes to give a voice to the people with CP, and hereby an insight into how the participants experience being a part of a peer community when participating in a sports camp. Finally, the phenomenological approach can uncover aspects of peer communities that researchers have not been aware of before. As Van Manen (2016) states “Even the most ordinary experience may bring us to a sense of wonder” (p. 31). Such insights

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can hereby lead to new perspectives that can broaden our understanding of how interventions in the health care system can be strengthened. With these elements in focus, this study can bring new insights on how peer communities can be of value when living with CP.

2.2 Context - sports camp The context of this study has been four separate 4-6-day long sports camps for people with CP developed and arranged by the Elsass Foundation of Denmark (Andersen, 2016). The Elsass Foundation offers camps for people with CP in the age range from 5 â€“ 60+ years and with different levels of disability. The participants are gathered at different camps in relation to age and level of physical ability. In this study, we have included four camps, which are presented in Table 1.

Camp 1 Camp 2 Camp 3 Camp 4

Participants 20 16 11 10

Location Elsass Foundation Elsass Foundation Egmont Folk Highschool Club La Santa

Age 10 - 13 14 - 18 10 - 17 30 - 60

Condition Able to walk Able to walk Using wheelchair Able to walk

Table 1. The four Elsass Foundation camps included in this study

Despite a great range in age and physical abilities, all camps are basically designed in the same way. All camps include accommodation, the participants share rooms with one to three other participants, everybody participates in all meals and follows the same activity program. The location of the camps differs, and each participant at the camp for wheelchair users is accompanied by their private helper. The activity program can differ from camp to camp but follows the same structure. This structure builds on three models of psychological resilience (the protective, compensatory and challenge models) (Garmezy et al., 1984; Oâ€™Leary, 1998; Borger, 2010). First, there is a focus on social games and teambuilding activities, to create a good trustful atmosphere and help the participants get to know each other (protective model). Second, the participants are presented with different activities such as martial arts, stand up paddle board or trampoline, to let them experience that they can participate and manage in many activities as long as they have a flexible and creative mindset (compensatory model). Finally, the participants are presented with adventure activities such as climbing, kayaking or jumping from a diving board in the swimming pool (challenge model). These activities aim to challenge the perceived abilities of the participants.

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Confrontational and successful experiences that can have the potential to (re)frame their perspective on themselves and their possibilities. In addition to the adapted physical activities, two group talks are arranged every morning and afternoon. The talks aim to stimulate reflection and create a bridge between the participants’ personal stories, expectations and experiences at camp. For a further elaboration of theoretical and methodological design of the camp see the ‘Camp handbook’ (Andersen, 2016).

2.3 Participants After the registration period, the professional team that was in charge of the camps reviewed each participant’s information. Four participants at each camp (16 in total) were selected and asked to participate in the study. Every participant chose to accept the invitation and parents and participants more than 18 years old signed a form of consent. The participants were selected to achieve a group that displayed the greatest diversity in gender, age, level of ability/disability and camp-experiences. All 16 participants had cerebral palsy, and 12 of them (camp 1, 2 and 4) were classified as level I and II on the Gross Motor Function Classification System (GMFCS) (Palisano et al, 2008). This ensured that they could perform gross motor skills such as walking, running and jumping. The last four participants (camp 3) were classified as level III and IV. While two of them could walk with assistance, all used a wheelchair most of the time, and needed support in many activities. The communicative abilities of the 16 participants were very different; levels I – IIII of the Communication Function Classification System (CFCS) (Hidecker et al, 2011) were represented among the participants. This meant that some participants spoke clearly, while others spoke slowly and were difficult to understand. In the article every participant is anonymized. The names used in the paper are created by the authors.

2.4 Data creation All participants engaged in two individual semi-structured interviews (Kvale & Brinkmann, 2009; Smith & Sparkes, 2018). The first interview took place a month before camp and focused on the participant’s lifeworld to get a first-person insight on how the participants experience their own lives. In the interview the participants were asked to describe their background, themselves, their interests, everyday routines, social relationships, values and personal resources and challenges. The second interview was a camp-experience interview, held at the latest a week after camp to ensure a fresh memory of the camp. From a phenomenological point of view, we were interested 109

in studying how the participants experienced, perceived and interpreted being a part of the peer community at camp (Jacobsen et al, 2015; Giorgi & Giorgi, 2003; van Manen, 1997;2016). When planning the interviews, our personal experience from our previous work with people with CP were taken into consideration. For example, some people with CP find it difficult to reflect in a nuanced manner on open and abstract questions related to experiences and perceptions. To accommodate this perceived challenge, we used coaching cards that displayed many different kinds of situations, emotions and symbols. The cards were used to help the participants talk about metaphors that described their experiences of the camp, which provided participants with another way to express their feelings and bodily experiences (Stelter, 2012). The cards were used as a bridge for meaning making and understanding between us and the participants, as metaphors are used to understand one thing through another (Miles & Hubert, 1994). Figure 1 shows the cards chosen by one of the participants during an interview. Figure 1. Example of chosen coaching cards

2.5 Analysis strategy A thematic analysis using the three-step method described by Braun and Clarke (2006) was conducted to identify patterns and key themes in the data. First, all the interviews were transcribed and read to obtain an impression of the data as a whole. Second, the words of the core message of each response were identified and a data-driven code was added. Third, a final reduction was made that grouped all similar initial data-driven codes into key themes that were to represent the essence of the phenomenon â€œbeing a part of a peer community at campâ€?. The themes presented in the following findings section describe how the phenomenon is present for the participants.

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3. Findings Teenagers in wheelchairs who are laughing and screaming while bouncing into each other in a chaotic ball game, a nervous woman trying to stand up on a stand-up paddle board as her camp-friends support her on both sides of the board, and children cheering for each other when climbing a large wall on an obstacle course – these are all episodes from the sports camps where the social context has been a major part of the experience. In this section we elaborate on how the participants experience being a part of the peer community at camp. Our thematic analysis identified five themes central to the participants’ experiences of the peer community (Figure 2).

Figure 2. The six themes

3.1 Divergency >< Belonging. ‘You don’t have to adapt – you already fit in’ Most of the participants experience themselves as someone who diverges from the norm at school or at work. A role and position in society which many participants connect with either their struggle to try to fit in or their struggle to explain themselves to their surroundings. At camp this is different. At the camps, they found themselves among peers. This gave them an experience of belonging, which Margrethe (42 years old) expresses as: At camp you don´t have to adapt – you already fit in, because that is how it’s made. In everyday life you must adapt all the time. In contrast to the participants’ everyday life, the divergent component, CP, is what makes them fit in at camp. Using a metaphor of a gospel choir, Amanda (30 years old) describes this condition of belonging as: I have taken a picture of a gospel choir that just goes completely crazy. They are in the same jerseys and that kind of shows what I feel the camp is for me - unity and equality somehow. There isn’t anybody who is violently sticking out of the crowd, and if we do, we all do it together. And it may well be that one doesn’t follow the beat completely, and it may well be that one sings a little false, but when you are enough, no one will ever notice.

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What Amanda is indicating in the quote above is a paradox about experiencing being similar and equal as a result of total divergence. Everybody is different, nobody is following the exact same beat, but that is exactly what stimulates the great harmony. If everybody is different, nobody stands out alone. This element affects many of the participants in very valuable ways, as several connect the feeling of belonging with a sense of social security. A sense of social security, which will be elaborated in the following theme. Nevertheless, one experience by Mathilde (16 years old) was very different from the others. Mathilde was at one of the camps the only girl who did not know any participants prior to the camp. This made her feel alone, uninteresting and ignored by the other girls. At the end of the four days, Mathilde felt she had become a part of the group, but it is worth noticing that she felt: it could be a little tough to be there.

3.2 Social insecurity >< Social security. ‘You dare to show who you are’ Many of the interviewed participants describe how they often take a passive role in social contexts because they feel shy, insecure, left behind or find that this is what is expected of them. An example of this is Paul (60 years old), who struggles with insecurity related to talking because of his speech impediment. He explains that he gets nervous when speaking to people he does not know, and even at family parties rarely speaks. Nevertheless, he finds the courage to show his most vulnerable side at camp. He dares to speak up and even gives a talk in front of the entire group about his life — a performance he credits the social security: you feel so damn safe here.

The feeling of social security and support that gives many of the participants the courage to be vulnerable is closely connected to a sense of freedom, which the participant Sofie (16 years old) described as: Camp is freedom for me. Huge freedom. Because I am together with people who are a bit like me. They are in the same situation and can’t make their arms and legs do as they like. It has just been so great. (…) I feel more comfortable with myself in some way. You dare to show who you are. I might be a little shy, but when I'm with you, it's actually not that bad. We can see that the theme of social security is central to Sofie’s reflections when she uses the word “dare” when she describes showing who she is. This suggests that she, like Paul, experiences how a feeling of social security stimulates social courage. In addition, it may indicate 112

that she usually hides and limits herself. For both Paul and Sofie, social security sets them free and stimulates a more authentic and engaging behavior in contrast to how they both describe their usual more unsociable passive behavior. The experiences of Paul and Sofie are representative for many of the participants, but not all. Despite everybody mentioning the unity of the group as unique, secure and valuable, three of the teen boys did not find themselves being braver than they were used to. They appear as confident, talking about believing in themselves and having a good social community at home. For them the camp is a good experience, but they do not describe it as significant for them in their personal development.

3.3 Lonely struggle >< Dynamic synergy. ‘Ten individuals and then we just become one’ A common reflection from the everyday lives of the participants is an experience of being alone with their struggles. In this context, the symbol of the holding hands, which was chosen by 13 out of 16 participants, is interpreted by the participants in a more dynamic way. The holding hands do not exclusively reflect social security but becomes a metaphor for a unit that collaborates closely and creates the energy and synergy to lift and push the participants to another ability level. As Margrethe (43 years old) explains: Together we are stronger and can do virtually anything. (…) That's how it is when you are in a community where you feel like you are one, even if you are ten. Perhaps you can really say it like that - ten individuals and then we just become one. The synergy of the group as a unit working together is described by many of the participants as crucial for the things they accomplish and manage at the camp. The synergy creates a significant group strength that influences the participants’ actions and belief in themselves. Margrethe reflects on the meaning of the group in relation to the time after camp as follows: Well actually, there is also a great contrast. Because you get the feeling that you can handle the whole world, but at the same time the world becomes very big when you come home again. Suddenly you stand alone. So, if you are in a challenging situation, there is nobody to give a high five and say, "you can do it". This statement from Margrethe indicates that the loneliness struggle back at home may be perceived as even bigger than before engaging in the camp. This perception is grounded in the experience about how struggles and challenges can be managed differently than she used to 113

manage them. In addition, the perception leads to frustration because she cannot transfer the feeling of unity to her everyday life. Nevertheless, Margrethe concludes that she (in accordance with many of the other adults with CP) identifies the other group members as her CP family, and she would not miss that for the world.

3.4 Asymmetric >< Symmetric. ‘If they do it, I can do it too’ Some of the participants attend special-needs schools that cater for people with disabilities, but most school-age participants attend normal schools. Attending a normal school leads to many participants experiencing an asymmetric relationship between their own and their school peers’ abilities. This asymmetry and confrontational comparison cause self-doubt and limits the social life of people with CP, as many of them opt out of physical education classes and active breaks during the school day. At camp, this is different, which Oliver (14 years old) reflects on:

It is much easier to do things together because we are at the same level. You can easily play games, run and play soccer because people have the same problems as yourself. The experience of being able to participate as a result of the same ability level is shared by all participants. Furthermore, this symmetry in abilities seems to have an additional valuable affect when participants find themselves in a challenging situation. This is described by Oliver when he recounts an experience from the climbing track: That was why I signed up to be in the back of the climbing track. Because it always gives me some inspiration when I see how the others do it. It helps me a lot. Because if they do it, I can do it too. This statement shows that a challenge managed by the others is experienced as transferable to Oliver’s own perceived abilities. It creates a belief in himself as a result of a mirror effect, which is an effect he does not benefit from in his everyday life where he perceives himself as less capable in relation to his classmates. This enhancement in perceived abilities and readiness to participate caused by a mirror effect are reflected in many of the stories, the participants tell about their experiences in the challenging adapted physical activities.

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3.5 Burden >< Resource “I can make a big difference” While many of the participants are the ones who need the most help and adjustments in their everyday lives, they find that the symmetry in their camp relationships changes their social position. Suddenly they do not only get help, they are also in a position where they take responsibility and offer their help to the other participants. This reciprocal relationship prompts Margrethe (43 years old) to say: “Here [at camp] is someone who needs you. I can make a big difference, and I think that is great.” This is a feeling of being needed, contributing to the other participants’ victories and making a difference, which both have an effect in terms of a self and relational reward. Thus, helping others is described as valuable for the self, as Paul (60 years old) says: “when I give five cents, I feel I'm getting a million back”. Furthermore, the stronger relational bond between the helper and the one receiving help is described by Catharine (13 years old): (…) we [Catharine and another participant] were not that close before that incident where we wanted to jump [from the stool in the swimming pool] and I thought “Okay, we have to help each other”. The statements from Paul and Catharine indicate that being a resource for other people, can both positively affect the self-feeling, and additionally stimulate stronger relational bonds between the helper and the one who gets help.

3.5 Being looked at >< Being seen. ‘That deep deep understanding’ Another consequence of being the only one with a disability, is the feeling of not being able to share common bodily lived experiences. Amanda (30 years old) describes this perspective as: People in my everyday life are very kind to respect when I say how it is and what I feel, but it is not that they know it themselves. Or “we have also tried…” or “we have seen others who also…” or something. There is never really anyone who has seen it, done it or tried it before in my everyday life, but at camp there are. You as leaders of the camp have seen it many times before. You have seen the patterns and experienced the reactions, but the other participants have tried something similar before, and that is cool. While Amanda experiences the respect and sympathy of the people she is surrounded by in her everyday life, she still experiences a distance between herself and them, because they lack experience with people who are living with CP. At camp this is different. Here she meets 115

professionals who have an academic and practical knowledge of CP that creates an understanding between them. Nevertheless, she experiences the relation to her peers at camp as the most valuable relation, because of their shared lived experiences and deep understanding. These experiences are described by many of the participants as meaningful in relation to mainly three aspects. First, being able to have a dialogue about everyday circumstances with somebody who can reflect on matters in relation to their own lived experience are perceived as very beneficial. When the other participants have the same story and experience, such dialogues make them feel mutually understood and affiliated. In addition, these dialogues allow the participants to ask questions, get advice and share recommendations. Second, a shared humor is mentioned as a thing that makes the atmosphere more joyful. This is an intra-group humor that hinges upon common struggles and misunderstandings that are turned into a shared inside joke, instead of a serious mistake or failure that should be pitied. Finally, the deep understanding between the participants, causes the them to accept and understand each other without any explanations. This is in great contrast to when the participants are among people without disabilities. Here they describe how they often feel observed and forced to explain or legitimize themselves and their struggles. This understanding makes the participants feel that the relationship between them and their peers at camp is strong and heartfelt. In addition, this understanding makes many feel relaxed about their circumstances at camp.

We noted that the participants who participate in sports associations for people with CP have experienced this symmetry in ability level and lived understanding before. An example is given by Christopher (10 years old), who compares the reciprocal relationship at camp with his soccer team: Well I've tried it before. That's how it is when I go to soccer. There we also struggle a bit more than others. (â€Ś) You feel like you understand each other and so.

4. Discussion Our analysis showed that the camp comprised two social dimensions that were valued by the participants. One dimension was the sense of a unique unity. The other was the sense of a reciprocal relationship between the participants.

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We will discuss our findings in relation to the two social dimensions ‘the value of the unique unity’ and ‘the value of the reciprocal relation’, and elaborate on how knowledge of these dimensions can be beneficial for designing and implementing rehabilitation interventions and programs.

4.1 The value of the unique unity The value of the unique unity is described by the participants as a sense of belonging, security and synergy. This is a new social community that makes them behave, act and participate differently. This change in behavior is a key effect of the camps, and reveals a connection between the participants’ social community and the way they act. We believe this connection can be understood by looking at aspects presented by Goffman (2009) and Ryan & Deci (2000). When referring to Goffman’s (2009) theoretical framework, the participants’ central experiences of a sense of security and relatedness, make good sense. Thus, their experiences can be explained by the construct of an in-group of participants who relate to each other as fellow-sufferers. A group construct, which according to Goffman is the one to which the individual naturally belongs and find comfort. This sense of belonging and comfort is not only seen in this study, but is also seen in many other camp studies (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Michalski et al., 2003; Ashton-Shaeffer et al., 2001; Nyquist et al., 2019; Aggerholm & Moltke Martiny, 2017; Goodwin et al., 2011; McAvoy et al., 2006; Devine and Dawson, 2010; Devine et al., 2015). How these social experiences furthermore can influence the way the participants act and behave can be elucidated through Ryan & Deci’s Self Determination Theory. Here they expand on how human nature can be described in a variety of ways that reflect how an individual reacts to their social community: “The fact that human nature, phenotypically expressed, can be either active or passive, constructive or indolent, suggests more than mere dispositional differences and is a function of more than just biological endowments. It also bespeaks a wide range of reactions to social environments” (Ryan & Deci, 2000 p. 68) In a further elaboration of the influence of the social environment, Ryan & Deci states that people are more likely to be motivated, engaged and to act “[…]in contexts characterized by a sense of security and relatedness (Ryan & Deci, 2000, p. 71). These social motivational aspects indicate 117

that the participants at camp do not act differently because they become something more, better, or extraordinary. At camp, they simply just dare to become and show who they already are. They experience development and growth because they dare to be vulnerable and let go of their avoidance behavior. They become a brave version of themselves that makes them engage and take risks. This approach unfolds their potential and leads to successful actions, an enhanced selfperception and inner power they can bring back home. The same causality between social security and being brave enough to act despite fear of failure is also presented in Nyquist et al. (2019) and Goodwin et al. (2011). This suggests that rehabilitation programs should focus on establishing a peer community that stimulates a sense of social security so that participants dare to open up and place themselves in perceived risky situations. This focus on social environmental factors correspond with several other studies that too highlight these elements as important for participation (Anaby et al., 2014 Maxwell et al., 2012; Steinhardt et al., 2019; Colver et al., 2012). Thus, we propose paying more attention to the causality between social security and participation. This view on causality stems from what (at the sports camp) is perceived as the primary obstacle to participation. Many cases from the camp thus indicate that what mostly impedes the participants is not a lack of motor functions that makes them unable to act, but that a lack of motor functions makes them too uncertain to act. Nevertheless, they find the courage to confront this uncertainty when they have the appropriate social support and security. This feeling of belonging and the effect of the powerful group synergy described by participants indicates that teams of peers can form a valuable part of a rehabilitation program. Nevertheless, we should be aware that the four-day camp may not be the best way to structure the intervention, if it stands alone. Even though the four days seem to affect the participants in very meaningful ways, the findings also indicate that the time after camp can be challenging and lonely. In this sense, the power of the unity can backfire and cause emotional pain if there is no transfer of this power to the participantsâ€™ everyday lives. This indicates that camps have great potentials but should be complemented and followed by more continuous programs and interventions that form a more structured part of the participantsâ€™ daily lives â€“ in the same way as traditional physiotherapy and occupational therapy can be available on an ongoing basis.

4.2 The value of a reciprocal relation The findings presented in the last three themes show how relationships can affect the way we perceive ourselves and how we act. The participants describe significant relationships that are 118

different to the relationships in their everyday lives. This difference stimulates a new perception of themselves, their abilities and disability, which is interesting to discuss in relation to the theory of self-efficacy presented by Bandura (1977; 1995;1997) and narrative thinking presented by Smith & Sparkes (2006). Perceived self-efficacy refers to beliefs in one’s capabilities to organize and execute the courses of action required to manage prospective situations. Efficacy beliefs influence how people think, feel, motivate themselves, and act. (Bandura, 1995, p. 2) With this definition in mind, a strong sense of self-efficacy is crucial for people to develop a life in which they actively take charge and make the choices and decisions they find meaningful. Four main factors influence how people perceive their self-efficacy: (1) Mastery experiences, (2) vicarious experiences, (3) verbal persuasion and (4) emotional arousal (Bandura, 1977). In relation to the social themes identified in our analysis the factor ‘vicarious experiences’ is the most relevant. The power of vicarious experiences comes from the idea that “Seeing people similar to oneself succeed by sustained effort raises observers' beliefs that they too possess the capabilities [to] master comparable activities to succeed.” (Bandura, 1994, p. 3). Unfortunately, in the participants everyday lives, this factor has either been absent, or have stimulated the participants’ self-efficacy beliefs in an unfortunate way. In contrast, many participants at camp talk about how they find the courage and belief to act by observing the other participants act. “If they can do it – so can I” is a common phrase used by the participants, which indicates that the success of their peers is interpreted as transferable and hereby enhances their self-efficacy beliefs. This beneficial effect of observing peers was also one of the most prominent themes in the study by Standal & Jespersen (2008). Furthermore, this phenomenon is also seen in several other camp studies (Goodwin & Samples, 2005; Ashton-Shaeffer et al., 2001; Goodwin et al., 2011; Aggerholm & Moltke Martiny, 2017). In accordance with the findings in this study, the former studies also report how modelling of peers can stimulate an increasement in self-perception. Hence the observations of equals can additionally change our self-story. In line with narrative thinking (Smith & Sparkes, 2006) the environmental input can change how we tell about our self. A story which at the camp shifts from “I cannot”-story to a more positive “I can”-story. A change in self-story is also seen in the theme “Burden >< Resource”. The new position as a person who can help others, make some of the participants change the character they occupy in the storyline. In these stories they do not take the place as the “victim” who needs help and support – as they often do in everyday life – but becomes det “hero”, who helps and makes a big difference. 119

Despite a great turn in story a potential challenge is that this story might be limited to the camp setting, if the participants do not have a community of equal peers in their local environment. This indicate that we should develop local rehabilitation programs that allow participants to engage in teams of peers. Such teams should comprise participants of comparable ability levels and should allow the participants a sense of lived connection and understanding, thus allowing them to support each other and benefit from each otherâ€™s achievements and hereby develop and grow together.

4.3 Strengths and limitations A critical point can be connected to the role of one of the researchers, who has been closely involved in the camp and with the participants doing the camp. This means that the participants and the researcher have developed a strong relational, that may result in the participants not being critical in the interviews. Or it may be that the interviews would not have the descriptive depth sought because of a shared camp experience that could motivate the interviewees not to share experiences as they seemed too obvious to the researcher. To accommodate this the researcher began each interview with a briefing that encouraged the interviewees to be honest, critical and tell about their experiences as they would tell them to someone who had no camp experience. Despite these potential limitations there is also an advantage connected to this point. Due to the trustful relationship between the interviewee and the researcher, the experience of the researcher was that the interviews resulted in very detailed and honest descriptions and stories from the participants. Finally, it is a sign of trustworthiness that the unique findings, contributing with new nuances to the use of peer communities in rehabilitation for people with CP, resonate with the research literature presented in the introduction (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Gill, 1997; Michalski et al., 2003; Ashton-Shaeffer et al., 2001; Nyquist et al., 2019; Aggerholm & Moltke Martiny, 2017. This resonance and new findings presented in this article can provide a valuable contribution and furthermore be transferred to other target groups and contexts.

5. Conclusion We have shown how young people and adults with CP experience being a part of the peer community at a sports camp. The participants describe a very different social community compared to the communities they are used to in their everyday lives. At camp they felt they 120

belonged instead of being an outsider. This sense of belonging gave them a feeling of social security, an empowering group energy and support, which made them dare to confront many of the challenges they were presented with. Furthermore, the symmetry in perceived abilities, the feeling of making a different and the internal lived understanding of being a person with CP were key factors that enhanced participants’ beliefs in themselves. Our findings indicate that the different dimensions of the peer community can stimulate a stronger self-efficacy and -story and thereby make the participants dare to become and show who they are — a brave version of themselves that makes them engage and take risks. This approach unfolds their potential and leads to successful actions, and an inner power they potentially can take back home. Our findings indicate that a focus on peer communities could be included in recommendations and interventions for people living with CP. Furthermore, our findings also indicate that the camp concept would benefit from a complementary continuous follow-up program or intervention, which could support the participants in their transfer to everyday life. For future research, it would be interesting to explore the meaning of peer communities in regular rehabilitation program for people living med CP.

Acknowledgements First, we would like to thank all the participants who engaged in this study. Furthermore, we thank you the Elsass Foundation and Innovation Fund for financial support. Finally, would also like to thank Jens Bo Nielsen and Kristian Møller Moltke Martiny for fruitful discussions and feedback on the article.

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Palisano, R. J.; Rosenbaum, P. L.; Bartlett, D. J.; Livingston, M. H. (2008). Content validity of the expanded and revised gross motor function classification system. Developmental Medicine and Child Neurology. 50: 744-750. Pandyan A. D. et al. (2005). “Spasticity: clinical perceptions, neurological realities and meaningful measurement.” Disability and Rehabilitation, 27, 2-6. Powrie, B., Kolehmainen, N., Turpin, M., Ziviani, J. & Copley, J. (2015). The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis. Developmental Medicine & Child Neurology. 57: 993–1010 Rosenbaum, P. et al. (2007). “A report: the definition and classification of cerebral palsy April 2006.” Developmental Medicine and Child Neurology, 109(suppl 109), 8-14. Ryan, R. M. & Deci, E. L. (2000). Self-Determination Theory and the Facilitation of Intrinsic Motivation, Social Development, and Well-Being. American Psychological. 55(1), 68-78. Sheean, G. (2001). “Botulinum toxin treatment of spasticity: Why is it so difficult to show a functional benefit?” Current Opinion in Neurology, 14:771 – 776. Smith, B. & Sparkes, A.C. (2006). Narrative inquiry in psychology: exploring the tensions within, Qualitative Research in Psychology, 3:3, 169-192. Smith, B. & Sparkes, A. (2018). Interviews: qualitative interviewing in the sport and exercise sciences. In: B. Smith and A.C. Sparkes, eds., Routledge Handbook of Qualitative Research in Sport and Exercise. London and New York: Routledge, pp. 103-123 Steinhardt, F., Ullenhag, A., Jahnsen, R., Dolva, A-S. (2019): Perceived facilitators and barriers for participation in leisure activities in children with disabilities: perspectives of children, parents and professionals, Scandinavian Journal of Occupational Therapy. Stelter, R. (2012). Tredje generations coaching – en guide til narrativ-samskabende teori og praksis. Dansk Psykologisk Forlag. Sundhedsstyrelsen (2014). National klinisk retningslinje for fysioterapi og ergoterapi til børn og unge med nedsat funktionsevne som følge af cerebral parese – 9 udvalgte indsatser. van Manen, M. (1997). Researching lived experiences: Human science for an action sensitive pedagogy. London, Canada: The Althouse Press. van Manen, M. (2016). Phenomenology of Practise. Meaning- Giving Methods in Phenomenological Research and Writing. London and New York. Routledge. Wang, H. & Yan, Q. (2018). A review of the treatment of cerebral palsy in children. TMR NonDrug Therapy. 1(4): 151-158.

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Studie II

“then the other trainer said: "try if you can jump alone". And I just thought "fuuuuuck alone" (laughs). But then I tried it alone and thought “I can actually do this”. (…) I became very proud of myself because I had never believed I could do that. It wasn't because I was insecure about it, it was just… Wow.”

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Moved by Movement A phenomenological study of how young people and adults with cerebral palsy experience participating in the challenging adapted physical activities at a sports camp

Mie Maar Andersen¹ ², Helle Winther³

Keywords Adapted physical activity Camp Holistic Disability Rehabilitation

Corresponding author: Mie Maar Andersen Elsass Fonden Holmegårdsvej 28 DK - 2920 Charlottenlund Mail: mma@elsassfonden.dk Phone: (+45) 30489048

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Moved by Movement A phenomenological study of how young people and adults with cerebral palsy experience participating in the challenging adapted physical activities at a sports camp.

Abstract Using physical activity in rehabilitation programs for people with cerebral palsy has a long and strong tradition. In this tradition physical activity primarily has been considerate as a method for treatment purposes mainly to improve and restore lost function. As a contribution to this important field of practice and research, this paper investigates how a phenomenological approach can be used to elucidate how people with cerebral palsy experience being a part of the multiple adapted physical activities at a four-day sports camp. In doing so, we examine the ways in which adapted physical activities can be used to enhance the psychosocial development potential of people living with cerebral palsy. Two rounds of semi-structured interviews with 16 participants at four camps were carried out. The first round aimed at getting a sense of the participantsâ€™ daily lives, and the second at getting a sense of their experiences at camp. The participants experienced the camp and adapted physical activities as different and challenging compared to their daily lives and traditional rehabilitation measures. Participating in the activities gave them new and enhanced perspectives on themselves, their disability and abilities. This study shows that a more holistic, diverse and challenging approach to adapted physical activity could be included in rehabilitation interventions for people living with cerebral palsy.

Keywords: Adapted Physical Activity; Camp; Holistic; Disability; Rehabilitation

1. Introduction Using physical activities in rehabilitation programs for people with cerebral palsy (CP) has a long and strong tradition. In this tradition, physical activity has primarily been considered as a treatment method that aims to improve and restore lost function (Normann et al., 2004; Kissow, 2006). Alternatives to this traditional approach have emerged over the last fifty years that embrace more holistic movement rehabilitation interventions for people with disabilities. Especially the use of Adapted Physical Activity (APA) (Sherrill, 2004) has become an important component in holistic rehabilitation of people with disabilities (Standal & Kissow, 2007). Additionally, the use of Outdoor Experiential Therapy (OET) (Ewert et al., 2001) has expanded. It can be said that OET 127

is a discipline within APA, but in this paper, we choose to divide the two concepts as they come from different traditions. This paper is motivated by a wish to argue for a more holistic orientation toward using APA and OET in rehabilitation programs for people with CP. Despite the increased use of holistic approaches and the promising research findings related to them, the arguments for why movement and physical activity are beneficial, and the recommendations on how they should be practiced in relation to people with CP are still mainly dominated by arguments related to the biological physical body (Verschuren et al. 2008; 2016; Novak et al., 2013; Wang & Yan, 2018). These arguments and recommendations draw on research that demonstrates the benefits of physical activity for people with CP, including studies that show how physical activity for people with CP can reduce the impact of fetal or infant brain damage on the person living with CP (Damiano, 2006; Lorentzen & Nielsen, 2012). Furthermore, physical activity can help improve motor control and local bodily functions (Nupo, 2011; Kitago & Krakauer, 2013; Nielsen et al., 2015), reduce the risk of developing lifestyle diseases (Nsenga et al., 2013; Unnithan et al. 2007; Verschuren etal, 2007; Slaman et al., 2014) and improve cognitive development (Kramer & Erickson, 2007; Hilman et al., 2014). As can be seen in the above development potentials, the use of physical activity is a rehabilitation strategy that can be beneficial in various ways. However, practice and rehabilitation recommendations also need to pay attention to the value of more holistic development potentials that take account of psychosocial factors in the lives of people living with CP. This holistic perspective is relevant, as people with CP per definition will carry a stigma (Goffman, 2009), which most likely will have a devaluating psychosocial influence. Research studies have demonstrated that people living with CP often have a sense of not trusting their own body, feel different and unaccepted, and find it difficult to be in uncontrolled and challenging situations (Sandstrรถm, 2007; Horsman et al., 2010; Brunton & Bartlett, 2013; McLaughlin & ColemanFountain, 2014; Martiny, 2015). Furthermore, people living with CP often find it difficult to form important relationships with peers and to participate in social situations (Shikako-Thomas et al. 2008; Bottcher, 2010; Michelsen et al., 2006), and have clear challenges related to coping with school, work and cohabitation (Michelsen et al., 2014; 2017).

This paper therefore aims to contribute to the psychosocial arguments for and recommendations on how movement can be beneficial in a rehabilitation process for people with CP. This is done by using a phenomenologically inspired approach to elucidate how young people and adults with CP experience being a part of the adapted physical activities at a four-day sports camp, and we discuss how the activities can be understood as valuable in a rehabilitation process. The sports 128

camp was designed to stimulate resilience processes (Luthar, 2003; Rutter, 2008; Ungar & Liebenberg, 2013). More specifically, the sports camp aimed to enhance the participantsâ€™ motivation for sports and movement, their social relationships, self-perception and perceived future possibilities (Andersen, 2016). This was done by using a combined APA and Outdoor Experiential Therapy (OET) approach to the movement activities in an overall resilience-based framework. This approach will be expanded on in the methods section, while we in the following elaborate on APA, OET and relevant findings made in these fields.

Adapted Physical Activity (APA) and Outdoor Experiential Therapy (OET) The term APA is used in different areas, including the professions of education, disability sport, recreation and rehabilitation (Sherrill & DePauw, 1997). When using APA in this paper, we refer to a movement approach used in relation to recreational and rehabilitative programs. In this context, all movement activities can be included in APA. What is important is that the activity and context around the activity must be adapted to the participantsâ€™ needs and not the other way around (Sherrill, 2004). The term OET can be interpreted as a discipline within APA. However, OET is highlighted independently in this article as this concept plays a central role in the intervention sports camp that this study is based on. In this context, OET is used as an umbrella term that encompasses the different, but related, modalities of wilderness therapy and adventure therapy (Ewert, McCormick & Voight, 2001). These approaches are characterized by a structured movement program that utilizes an outdoor setting and direct experience (ibid.). In a rehabilitation setting, both the APA and OET approaches acknowledge the physical health and physical well-being benefits of movement programs, while also emphasizing movement as a psychological, pedagogical or socio-cultural therapeutic method. According to APA, this holistic use of movement can empower and help to stimulate self-actualization (Sherrill, 2004), and in an OET perspective, movement can enhance an individual's physical, social and psychological wellbeing (Ewert et al., 1999). In a rehabilitative setting for people with CP, the APA approach, has especially been used with water activities (Sutthibuta, 2014) and horse riding (Rosenbaum, 2009). However, there are no clear and reliable conclusions about effectiveness and clinical applications (Sutthibuta, 2014; Rosenbaum, 2009). This does not mean that APA disciplines are not valuable. On the contrary, a review focusing on the meaning of APA leisure activities for children and young people with disabilities found that these activities stimulated valuable elements such as feelings of fun, freedom, fulfillment of potential and social connectedness (Powrie et al., 2015). Additionally, 129

studies find that participating in both spontaneous and more structured forms of leisure activities and therapeutic programs focusing on leisure improve the quality of life of children with disabilities (Shikako-Thomas et al., 2012; Dahan-Oliel et al., 2011). Finally, Kissow & Singhammer (2012) found a significant correlation between people with disabilities who participated in sports or movement activities and employment, educational status, volunteerism, leisure time schooling and membership in a disability organization.

In rehabilitative settings for people with CP and other disabilities, camp programs that integrate multiple movement disciplines have also used an APA approach, an OET approach, or a combination of these approaches (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Michalski et al., 2003; Devine and Dawson, 2010; Devine et al., 2015; McAvoy et al., 2006; Ashton-Shaeffer et al., 2001; Goodwin et al., 2011; Nyquist et al., 2019; RĂ¸e et al., 2018; Aggerholm & Moltke Martiny, 2017). All these studies highlight the significant contribution of a social community with equals to rehabilitative outcomes. Nevertheless, in relation to the present study, we are more interested in the findings associated with movement activities. In this regard, many associated themes related to movement activities are highlighted in the aforementioned studies. Firstly, the activities lead to many new skills, learning situations and an opportunity to discover new activities available to them (Nyquist et al., 2019; Goodwin & Samples, 2005; Dawson & Liddicoat, 2009, Ashton-Shaeffer et al., 2001; McAvoy et al., 2006; Goodwin et al., 2011; Aggerholm & Moltke Martiny, 2017). Furthermore, the accomplishments in the activities stimulated increased self-confidence and an opportunity to create new identity alternatives (ibid.). Another common finding in the studies is that many participants associated the activities with great enjoyment and fun. (Nyquist et al., 2019; Goodwin & Samples, 2005; Dawson & Liddicoat, 2009; Ashton-Shaeffer et al., 2001; Goodwin et al., 2011). Finally, some studies highlight how the accomplishments in the activities encouraged greater independence (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005), and additionally, inspired some of the participants to make changes in their everyday life, as the experiences provided an opportunity to realize their potential (Nyquist et al., 2019; Goodwin & Samples, 2005; Aggerholm & Moltke Martiny, 2017; McAvoy et al., 2006) These findings appear important in relation to accommodating some of the psychosocial challenges many people with CP experience. Furthermore, these five components can be understood as important mediators that also promote physical benefits. This corresponds with studies that show how personal factors, such as intrinsic motivation and having an identity as a 130

physically active person, are a greater indicator of physical activity participation for people with disabilities, than environmental factors or factors related to functioning (Saebu & SĂ¸rensen, 2011; Martin, 2006; SĂ¸rensen, 2006). In a similar fashion, Steinhardt and colleagues (2019) found that children with disabilities primarily identify their own preferences, enjoyment and friendship as the factors that motivate them to participate in leisure activities.

Despite the research findings described above, holistic movement approaches still do not have a strong voice in rehabilitation practice and recommendations for people with CP in most countries (Verschuren et al. 2008; 2016; Novak et al., 2013; Wang & Yan, 2018). This study aims to provide new perspectives and insights that can further substantiate a holistic movement approach in rehabilitation programs for people with CP. This is done by giving a voice to young people and adults involved in a sports camp, and hereby elucidating in a first-person perspective how they experience being a part of the challenging adapted physical activities.

2. Method 2.1 Phenomenological approach and method The present study uses a phenomenological inspired approach to elucidate the meaning of participating in the adapted physical activities at the sports camp. Through this phenomenological approach, we are interested in looking at how people create meaning from their experiences in their lifeworlds (van Manen, 1997;2016; Jacobsen et al., 2015; Giorgi & Giorgi, 2003). The lifeworld in this context will be the world the participants experience in a first-person perspective when participating in the adapted physical activities at camp. This approach is chosen for mainly two reasons. First, there is a need for phenomenological insights on the effects of adapted physical activities in interventions for people with CP, as little research has been carried out on this aspect of interventions. Second, a qualitative descriptive approach can uncover aspects of the activities that have not been elucidated before. These insights can thus create various understandings of how adapted physical activities can create meaning and stimulate development. Such insights could lead to new strategies and recommendations in rehabilitation for people with CP.

2.2 Context - sports camp This study investigated four 4-day residential sports camps run in Denmark, each of which comprised two-three daily activities, two daily group talks, and three meals. The sports camps were developed and arranged by the Elsass Foundation of Denmark (Andersen, 2016) and was 131

designed to stimulate resilience processes. The conceptual framework of the camp is inspired by three models of psychological resilience (the protective, compensatory and challenge models) (Garmezy et al., 1984; O’Leary, 1998; Borger, 2010).

1. The protective model of resilience,

posits

that

an environment that is

perceived as protective, safe and secure can enhance competence development and selfesteem. Establishing such an environment formed the foundation of the camp and is therefore in focus from the first day. The participants must experience being part of an inclusive and tolerant environment that is characterized by collaboration, unity, optimism and support. This foundation must be established so that the participants can dare to risk themselves when their competences, safety limits and boundaries are challenged towards the end of the camp. The activities in the first part of the camp will therefore always be inclusive games, exercises and activities with a focus on trust, fun and teambuilding.

2. The compensatory model of resilience,

implies actions that can support and

accommodate elements that are missing in a person’s life. In relation to the camp activities, there is a great focus on a flexible and optimistic mindset where collaborative and creative solutions are in focus when activities and surroundings are adapted to fit the participants. To accomplish this in practice, many of the chosen activities are formed as communities of individual action. The individual focus means that a participant’s chance of success is not dependent on the other participants as it would be in team sports. At the same time, they participate side by side, and therefore still get an experience of shared participation. Examples of such activities are trampolining, martial arts or stand-up paddle board.

3. The challenge model of resilience,

argues that people will be stronger and

more able to cope with new challenges, if they are adequately challenged and experience to manage this kind of situation. At the camp, it is vital that the professional team dare to invite the participants into scenarios which cross the boundary of their perceived possibilities and abilities. This is a crucial point, as participants’ level of experienced success and belief in their own abilities will often grow in line with the level of perceived challenge, if the challenge is satisfactorily managed (Ewert, 1999; Herbert, 1996; Henriksen et al., 2008). Depending on the weather the activities chosen often will be in – or outdoor adventure activities such as climbing, jumping from a diving board in the swimming pool, mountain biking, going through a military obstacle course or kayaking. 132

The four sports camps involved in this study can be seen in the table below: Camp 1 Camp 2 Camp 3 Camp 4

Participants 20 16 11 10

Location Elsass Foundation Elsass Foundation Egmont Folk Highschool Club La Santa

Age 10 - 13 14 - 18 10 - 17 30 - 60

Condition Able to walk Able to walk Using wheelchair Able to walk

Table 1. The four Elsass Foundation camps included in this study

Despite diversity in age, camp location and level of disability, the activity program was similar at every camp. At all camps, a team of professionals from the Elsass Foundation from the fields of sports psychology and pedagogy, physiotherapy and occupational therapy were involved. The role of the professionals was to create a safe and trusting environment, by engaging in a personal, equal and collaborative relationship with the participants. In addition, the role of the professionals was to seek solutions, show belief in the participants, push and support them in challenging situations, and have reflective conversations continuously during the activities in relation to the subsequent narrative interpretation.

2.3 Participants The professional team in charge of the camps reviewed data on the registered participants to select four participants at each camp (16 in total) who were then asked if they could agree to participate in the study. Participants were chosen in a manner that achieved the greatest possible diversity in gender, age, camp experience and degree of disability. All participants asked to participate chose to accept the invitation and parents and participants more than 18 years old signed a form of consent. All 16 participants had CP, and 12 of them (camp 1, 2 and 4) were classified as level I and II on the Gross Motor Function Classification System (GMFCS) (Palisano et al, 2008). This ensured that they could perform gross motor skills such as walking, running and jumping. The last four participants (camp 3) were classified as level III and IV. While two of them could walk with assistance, all used a wheelchair most of the time, and needed support in many activities. The participants represented a diversity of circumstances in their daily lives. While some participants attended normal schools without extra support or were employed under normal conditions, many participants had special arrangements at school or work. Several participants participated in spare time activities such as sport, while some did not. Some had many friends with or without CP, while some felt very lonely. Some had strong cognitive abilities, while some struggled to find a sense of coherence. 133

In the article every participant is anonymized. The names used in the paper are created by the authors.

2.4 Data creation This study collected qualitative insights on the experiences of 16 people with CP. Participant observations were made at the camp and semi-structured interviews with a narrative dimension were conducted (Kvale & Brinkmann, 2009; Smith & Sparkes, 2018). Both methods aimed to provide an understanding of how the participants experienced and perceived being a part of the activities at the sports camp. All participants engaged in two individual semi-structured interviews; an interview about their life and an interview about their camp experiences. The first interview was arranged to be held a month before camp, aiming at getting a sense of their lives, personal values, self-image and expectations about the camp. This insight gave us the opportunity to compare the participantsâ€™ perceptions of their everyday lives and themselves in relation to the experiences they went through at camp. The second interview was held at the latest a week after camp to ensure a fresh recollection. At this interview, we used illustrative coaching cards as a way of communicating through metaphors. This method was chosen because we knew some of the participants would find it difficult to give nuanced descriptions of their camp experiences. To start the interview, each participant was first asked to choose the cards which best illustrated how they experienced being part of the camp. The rest of the first part of the interview comprised a talk about the selected cards in relation to the thoughts and experiences behind them. The second part of the interview had a narrative dimension (Smith & Sparkes, 2018). The participants were asked to tell stories about their most meaningful and significant experiences during the sports camp. To nuance and elaborate these first-person experiences presented by the participants, they were asked to tell the full story with as many details as possible, to make a drawing of their experiences, and to choose an illustrative card that could be used as a metaphor of the experience.

2.5 Analysis strategy A thematic analysis consistent with the method described by Braun and Clarke (2006) was conducted to identify patterns and key themes in the data. First, all the interviews were transcribed and read to get a picture and impression of the data as a whole. Second, the words of the core message of each response were identified and a data-driven code was added, to point out the main message and make the meanings appear clear. Third, a final reduction was made that grouped all 134

the similar initial data-driven codes to form key themes and subcategories, which in their entirety represent the essence of the experiences of the camp participants. Our

analysis

revealed

the

two

key

themes

Routine><New

and

(Meaning)less

challenge><(Meaning)full challenge and additionally subcategories. All findings will be elaborated in the following section.

3. Findings Children who are laughing and falling while they are jumping on the trampolines, young people who are supporting each other and looking nervous and concentrated as they are exploring a military obstacle course, and a terrified woman who is about to jump from a five-meter diving board in the swimming pool while her camp-friends are cheering for her. These are all scenes that describe episodes and activities from the sports camps. In this section we elaborate on how the participants experience being a part of these adapted physical activities. The empirical material indicates that the participants experience the activities at sports camp as very different compared with what they are used to in their daily lives. These activities stimulated new experiences that influenced the way many of participants perceive themselves, their disability and abilities. Through the thematic analysis two key themes and additional subcategories stood out as central to the participantsâ€™ experiences. First, we elaborate on the key theme: Routine >< New. Second, we reflect on the key theme: (Meaning)less challenge >< (Meaning)full challenge.

3.1 Routine >< New Most of the participants connect sport and physical activities with either exercises and rehabilitation programs at the physiotherapist, or with parasport disciplines they have participated in. Common to almost all participants are the fact that they have been involved with the same therapeutic programs and disciplines for many years. At camp, this is different and thus stimulate new and different experiences. What makes the activities new and atypical for the participants is the paradoxical fact that many of the activities are traditional and typical sports disciplines. These new adapted physical activities create many new learning situations for the participants. This is camp situations which is mentioned by all participants and is described well by Eric (13 years old) with the symbol of a thinking woman surrounded by pieces from a puzzle.

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P (participant): There are puzzle pieces and a woman thinking about it. R (researcher): Yes. How's that camp for you? P: It is that you are always trying something new. You have to concentrate all the time. You must solve that puzzle in a way. You must learn how it is. The new learning situations affect the participants in different ways, which will be elucidated in the following three subcategories.

Bodily expansion and contact Especially the wheelchair users talk about brand-new bodily experiences. One dimension they describe is the feeling of being free and light when being on a trampoline or jumping from a stool in the swimming pool. This is explained as liberating, joyful and as a big contrast to the sense of heaviness and stagnancy when sitting in a wheelchair. In addition, Sofie (15 years old) talks about the sense of body contact (at the discipline martial arts) as a new experience for her as a wheelchair user. It was a little unpleasant to begin with, but then you get used to it, and then it's actually nice being able to get a hug. I'm used to getting hugs at home and I’m used to getting hugs from all but not from wheelchair users, and I think that has something to say. (…) Well, it's just a very special feeling to get that hug, and I think that’s also why I'm craving to get out and meet with others who are sitting in a chair. Being out of the wheelchair and practicing martial arts is described with mixed emotions. To begin with, it seems to be an unpleasant situation as the participants encroach on each other’s intimate spheres. Nevertheless, it creates a valuable situation as they get closer and connect with each other in a deeper and more vulnerable way that strengthens their social relations and makes Sofie wish for more interactions with peers.

Ability surprise Another effect of the new activities that is often seen and described by the participants is the feeling of surprise. A surprise over their own abilities, which for example is described by Catherine (13 years old), when she is jumping on the trampoline: “then the other trainer said: "try if you can jump alone". And I just thought "fuuuuuck alone" (laughs). But then I tried it alone and thought “I can actually do this”. (…) I became very proud of myself because I had never believed I could do that. It wasn't because I was insecure about it, it was just… Wow.” 136

Like Catherine, many of the other participants react with disbelief when they are invited to join the new disciplines. They expect to fail, which usually makes them observers instead of practitioners – why engage if you and everybody around are sure you cannot make it? At camp, the participants are supported and gently pushed to try, despite their disbelief. They are invited to experiment and explore their limits and possibilities. In many cases, this causes a confrontational experience, where they get surprised by their own abilities and success. The experience makes them happy and proud, and opens the way they think about themselves, their abilities and opportunities. One of these surprisingly experiences prompts the participant Caroline (15 years old, wheelchair-user) to state: I realized that there are things that other people can do, that I actually also can do. In this sense, being able to manage the activities at camp stimulates a change in self-image, as someone who can participate in the same activities as people without disabilities. Another reflection is made by Amanda, when she to her own surprise managed to kayak: I actually think that was the first time I thought to myself, that it shouldn’t be the physical part that was holding me back. You know, then it’s just because my head is playing tricks on me, and I don’t believe I can. The quote from Amanda reveal a new perception of what holds her back in the adapted physical activities. Where she earlier has been doubting her physical body, she now perceives her mindset to be the most decisive factor.

Of course, the participants do not manage every activity that is presented to them, but when the expectations do not rely on the result but on the attempt, they rarely interpret the lack of success as a failure. It rather becomes a free opportunity, and something worth practicing. The only activities that seem to stimulate a sense of failure are the ones the participants perceive as manageable and expect to be able to manage, but nevertheless do not manage to do. This becomes an unpleasant surprise. An example is Caroline, who had a bad experience on a swing. P: It wasn’t that awesome. R: No, why wasn’t it awesome? P: Well, I actually think it had something to do with that I didn’t know I was afraid of heights. Well, I knew I wasn’t that crazy about being in tall buildings and such, but I had no idea it would be that bad just being two meters over the ground. So, it was very strange that I felt that way. And that was probably why I thought "why am I feeling like this now?".

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In common for all these new pleasant and unpleasant experiences is that they help broaden the participants' gaze on themselves and create a more realistic interpretation of their opportunities in the world.

3.2 (Meaning)less challenge >< (Meaning)full challenge In great contrast to the camp, many of the participants describe how they in their everyday lives often are presented with quiet, relaxing and less challenging activities. Especially the wheelchair users express this. When they are presented with different, new and challenging activities at camp, the calm everyday activities are put into perspective. This perspective prompts Sofie to say this about her everyday life:

Usually you just lean back and don't have to do shit. I would like to practice something where I was more challenged. Not just something where you have to sit in your chair. But something where I really get challenged and use my body. The statement shows how Sofie enjoys being challenged and in addition expresses a desire for more bodily-challenging activities in her leisure time. Other participants express how they experience being bodily challenged in their everyday lives. Nevertheless, they find the challenges meaningless. The meaninglessness is described by Caroline with a coaching card of nuns playing hockey.

It's because I think it's a little odd to exercise. I feel somehow that I should notâ€Ś Or of course I should exercise, but it is still a little silly. I'm never going to be good at walking. So, when people go: "wow, you are so good at walking", it feels a bit like something you would say to a three-year-old. And it may well be that the nuns are good at playing hockey - I don't know, but it is also a bit wrong. They are probably better at something else. And so am I. The activity â€œwalkingâ€? makes no sense for Caroline, as she does not interpret the hard work as something she should be proud of or something that she can benefit from. In contrast, almost every participant describes how the most challenging activities at camp lead to the most significant and meaningful experiences. The significance and meaning experienced by the participants are first expressed as an immediate sense of overwhelming joy and pride about having accomplished something they perceive as extraordinary. The participants have managed to do an activity which they at first found unmanageable because of the level of complexity, 138

exhaustion or risk. Nevertheless, they find that their expectations do not reflect reality. Instead, they experience having skills in perceived complex and difficult activities (like in the trampoline story by Catherine). They also experience showing persistence in the exhausting activities (for example completing a mini-triathlon), and being brave in what was perceived as a high-risk and dangerous activity (for example climbing, kayaking or jumping from a diving board). In the end, this gives them an experience of success that affects their self-confidence and self-image, as someone who can and dares to do such activities. Besides this immediate sense of pride, overcoming the challenging experiences has a meaningful transfer potential. A potential that can be divided into three subcategories, which hypothetically can be present at the same time. The participants describe a potential (1) transferable activity (2) transferable strategy and (3) transferable narrative.

Transferable activities The transferable activity is characterized by an experience where the participants manage to do an activity at camp and become motivated to continue that same activity back at home. For example, Frank (53 years old) describes how being a part of the camp have given him an energy boost and a gentle push to be active again. At camp, he tried spinning for the very first time, and describe a great motivation to join a team, and make this a new regular leisure activity.

Transferable strategies The transferable strategy is not related to the actual activity involved in the challenging situation, but to the experience of how the challenge was managed. For example, the participants talk about being aware of the importance of having somebody they trust by their side, how to communicate about their emotions, reactions and behavior when being challenged, how to push themselves in a challenging situation, and how a perceived great challenge can change very fast, as Noa describes below, when talking about his first tree climbing experience.

P: First, I was in the red zone [sense of anxiety]. I thought it was very dangerous. But when I stepped on the first branch, there was already one meter less to the top. I just got calmer, and then I was already in the green zone [sense of comfort]. I just think it's crazy how it can change so fast. I think you have to hold on to that. I would also tell others about it if they were nervous. R: Yes. What would you tell them? P: Well, sometimes it just might be really easy to get from the red to green zone.

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Transferable narrative The transferable narrative is a very powerful dimension of the sense making for the participants. Often, the challenging activities that cause the transferable narrative potential are one-time experiences that only take a very short period of time. An example is the jump from a five-meter diving board in the swimming pool by Margrethe (40 years old). That five-meter diving board man! That is one experience I will NEVER forget. While standing up there on the platform I remember telling you that I couldn’t do it. I was sure something bad would happen. I was so afraid. Totally out in the red zone. Such anxiety is mentioned by almost every participant in relation to various activities. In addition, the experience of anxiety prompts Margrethe to say: I will never do it again. At first appearance, this statement does not seem to indicate a meaningful challenging experience. What is central is that Margrethe in addition connects the experience with one of her most significant experiences and continues by explaining: This whole experience is linked by something completely terrifying and crazy cool. Crazy cool because I did it, I actually did it! I crossed a boundary and jumped into something terrifying. But I just knew I had to do it. What else would I be doing up there? Climbing all the way up just to climb down again. That would not make any sense. Also, I have always wanted to try it. She is deeply motivated, and she is proud. She is proud about making the terrifying jump that she was too afraid to make in the beginning. This is not a transferable activity, rather it is a transferable experience and narrative about being brave — brave enough to act and do something she deepdown really wishes, despite a situated sense of anxiety and panic. Margrethe can use this story back at home every time she stands in front of a difficult situation where she needs the courage to take the decision to make “the jump”. The story Margrethe should tell herself is “If I could make the jump in the swimming pool, I can also do this”.

All transferable potentials relate to a point made by Christian (17 years old), who chooses a card showing a road sign with the phrase “Hope ahead”: P: You [the professionals at camp] show, there is hope ahead. After all, that's what it’s all about. R: How do you think we show that? P: By showing we can do things, even if we have a disability. That shows a hope.

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4. Discussion. The value of diverse and challenging activities. In this section we will discuss how our findings can contribute to new considerations in relation to how adapted physical activities can be a meaningful holistic part of rehabilitation designs and strategies when working with people with CP. The value of the new and challenging activities described by the participants will be discussed in relation to the phenomenological theory of body schema and body image presented by Gallagher (2005) and the theory of self-efficacy by Bandura (1977;1994;1997). The body scheme can be understood as a collection of unconscious pre-reflective information and experiences acquired through action and interaction (Gallagher, 2005). This is a scheme and foundation the individual will use as an embodied guideline when engaging in a new situation or situations similar to previously experienced situations. The ability to master an activity is thus not something we automatically mature into, it is something we train, develop and learn through experiences based on real-life actions. Connected with the body scheme is a body image (ibid), which includes the subjective conscious perception we have of our own body as well as the subjective perception of what we can and dare to do. Almost every participant at camp describes the activities as new, different and very challenging compared to what they are used to. They have no lived experiences in this field to rely on and therefore no chance to know what to expect. With no established body scheme in relation to the activities they are presented with at camp, many interpret the activities in front of them as too difficult or dangerous. For many participants, this interpretation causes an instinctive behavior of passivity or attempt to escape. This reaction corresponds with studies that have shown how people with CP do not trust their own bodies and have difficulty in being in perceived uncontrolled and challenging situations (Sandstrรถm, 2007; Brunton & Bartlett, 2013; McLaughlin & ColemanFountain, 2014; Martiny, 2015). At camp, these new activities are a precondition for all participants. They are in the new challenging situation together in a trustful and save community, which is the reason why they often end up engaging, despite their immediate doubts. Their engagement carries no expectations of perfection, and often leads to success at some level. This success results in a strong positive feedback from the confronting and unexpected experience. This leads to a sense of achievement, which according to the participants is often experienced as a surprising success and extraordinary accomplishment they are very proud of. A significant experience that challenge their current limiting self-image and hereby opens a possibility for a new enhanced interpretation. This feeling of great success and new interpretation of the sense of self caused by direct bodily involvement in the adapted physical activities, are additionally highlighted in many other camp studies as a 141

central result (Dawson & Liddicoat, Goodwin & Samples, 2005; Michalski et al., 2003; AshtonShaeffer et al., 2001; McAvoy et al., 2006; Goodwin et al., 2011; Nyquist et al., 2019; Aggerholm & Martiny). Despite resonating findings, this study seems to contribute with new perspectives in how participants with CP experience participating in very challenging activities. By managing to do activities the participants at first perceive as unmanageable, they gain a significant successful experience. Bandura (1994) refers to such experience as a mastery experience, as it is a lived first-person achievement. Mastery experiences are described as the most effective way of creating a strong sense of self-efficacy, as: Successes build a robust belief in one's personal efficacy. (Bandura, 1994, p. 3). These mastery experiences are one of the core elements in an OET and APA approach, and at the Elsass sports camp it clearly gives the participants an instant boost and sense of resilience they bring back home. The importance of a great focus on an increased self-efficacy, should be seen in relation to the valuable rehabilitative perspectives. Thus, a study by Saebu & SĂ¸rensen (2010) indicate that personal factors, such as self-efficacy are the most important factor to explain physical activity for people with disabilities. Furthermore, research regarding adults living with CP have shown, how a â€œhigher general selfefficacy or a greater willingness to expend effort in achieving behavior was related to better participation and a higher physical and mental health-related quality of life.â€? (van der Slot, 2010, p. 528). Nevertheless, it is important to state that these relatively quick successes can have an unfortunate consequence which professionals should be aware of. Bandura expands on this: If people experience only easy successes, they come to expect quick results and are easily discouraged by failure. A resilient sense of efficacy requires experience in overcoming obstacles through perseverant effort. Some setbacks and difficulties in human pursuits serve a useful purpose in teaching that success usually requires sustained effort. After people become convinced, they have what it takes to succeed, they persevere in the face of adversity and quickly rebound from setbacks. By sticking it out through tough times, they emerge stronger from adversity. (Bandura, 1994, p. 2-3) In relation to the use of adapted physical activity in future rehabilitation programs, this suggests two things. First, failure and obstacles should be interpreted as an important part of the learning process. They mature people to become resilient and follow their goals and dreams despite adversity. By stating this, we also state that we do people a disservice and decrease their development potential by protecting and expecting too little of them. Second, this indicates the 142

importance of time and a more continuous program. The intensive camp can be the important turning point that gives the boost, while a consistent adapted physical activity program can both continue boosting and furthermore provide a sustained effort to deal with long-term adversity.

Strength and limitations Individual semi-structured interviews with 16 participants was considered to be the best approach to elucidate the participants experiences and understand the meaning of a peer community for young and adults with CP. A strength in the study is that the sample size is in accordance with the recommendations for a research project using qualitative interviews (Brinkmann & Tanggaard, 2015). In addition, the selected interviewees constituted a representative group, as they varied in age, gender, level of physical and cognitive abilities and urban regions of Denmark. However, no one in the group was classified as a V at the GMFCSscale or had a mental retardation. Therefore, the findings do not reflect experiences made by these specific target groups. Limitations of this study can be related to the procedure of the analysis. The analysis of the interviews was only carried out by one person. Furthermore, the large amount of empirical material has made it impossible to include and elucidate every aspect of the participants experiences. This means that the researcher has made choices that have influenced the direction of the findings. In this sense other findings may have been given more attention if other researchers had been a part of the procedure. To ensure the reliability of the analysis the findings were presented for other professionals who had participated in the camps. The sharing of the findings resonated with the observations the other professionals had been doing, and hereby increased trustworthiness.

5. Conclusion In this paper, we have elucidated how the participants with CP experience being a part of the adapted physical activities at a resilience-based sports camp. This study has shown how the participants experience the adapted physical activities as very different and challenging compared to the movement activities in their daily lives. Two factors stand out. First, many of the activities are completely new to the participants. Participants describe this unfamiliarity as something that stimulate a sense of freedom, new bodily contact and senses, and experiences where they get surprised by their own abilities. The second aspect is connected to the challenging activities that 143

lead to significant successful experiences and in addition build the self-confidence of participants, hereby leading to transferable potentials and a hope for the future. Based on the findings and discussion we suggest that rehabilitation programs not only should aim at local bodily improvement and basic motor skills, as many interventions aim at today. Rehabilitation movement programs should also seek to open up the landscape of new and challenging adapted physical activities. By doing this, the participants will get an opportunity to explore their bodies, disabilities and abilities in different situations, and hereby get an enhanced and more realistic perception of themselves. This perception can encourage them to make decisions based on lived comparable experiences, instead of imaginable scenarios influenced by uncertainty, doubt, assumptions and expected lack of abilities. For future research, it could be interesting to investigate how the use of adapted physical activity as a method would affect people with CP, if it was adapted to the same organizational structure that traditional physiotherapy operates under today.

Acknowledgements We would like to thank the Elsass Foundation and the Danish Innovation Fund for financial support. We would also like to thank Jens Bo Nielsen and Kristian Moltke Martiny for great discussions and for reviewing the article.

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â€œAs a person, I have learned that it is okay to be me, but that is also goddamn important. Can you believe it should take so many years? But I really think it's a huge part of what the camp has done for me. That it's okay. And with that comes a belief in one's own abilities and an enjoyment in doing things that previously just have been a survival or a proof.â€?

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You learn to believe more in yourself Experienced development processes after attending a resilience-based sports camp for young people and adults with cerebral palsy

Mie Maar Andersen¹ ²

1 Elsass Foundation, Charlottenlund, Denmark 2 Department of Neuroscience, University of Copenhagen, Copenhagen, Denmark

Keywords Disability Adapted Physical Activity Participation Transfer

Corresponding author: Mie Maar Andersen Elsass Fonden Holmegårdsvej 28 DK - 2920 Charlottenlund Mail: mma@elsassfonden.dk Phone: (+45) 30489048

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You learn to believe more in yourself Experienced development processes after attending a resilience-based sports camp for young people and adults with cerebral palsy

Abstract When a person can participate in the many aspects of life, they are better able to learn and develop, and maintain their health and well-being. Unfortunately, people who live with the disability cerebral palsy (CP) do not participate in social and societal arenas to the same extent as their typical developed peers. This paper reports on how young and adults with cerebral palsy experience a holistic resilience-based sports camp has affected them in the time after camp. Furthermore, it is discussed if the findings can be interpreted as signs of improved participation. Semi-structured interviews with 16 participants five-six months after the camp were conducted, and the empirical material were thematically analyzed using a phenomenological approach. Participants reported how the camp experiences have been transferred to their lives both in direct and new adapted shapes. The areas in which the participants describe positive changes are: (1) social participation, (2) activity participation (3) approach to challenges, and (4) stories and personal narratives. These findings indicate that the camp has strengthened person-focused processes and motivated them to participate in situations they earlier did not have the confidence and courage to engage in. Nevertheless, the participants also describe the time after camp as a lonely and difficult contrast to camp. This seemed to disturb the development process in some cases. To develop the sports camp intervention program, a follow-up program and an integration of the participantsâ€™ social environment is recommended.

Keywords: Disability; Adapted Physical Activity; Participation; Transfer

1. Introduction When a person can participate in the many aspects of life, they are better able to learn and develop, and maintain their health and well-being (Imms et al., 2017; Michelsen et al., 2014). Unfortunately, people who live with the disability cerebral palsy (CP) do not participate in social and societal arenas to the same extent as their typical developed peers (Imms et al., 2008; Wendelborg & Ytterhus, 2009; Michelsen et al., 2014; 2017). People who live with CP thus

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participate less in leisure activities, education and work (ibid.). Furthermore, they spend less time with friends, rarely have an intimate relationship and have less autonomy in their daily life (ibid.) The traditional explanation for why people living with CP participate less in social and societal arenas builds on biomedical thinking. This involves a hypothesized causality between bodily functions and participation (Barnes, 2001, Rosenbaum et al, 2007). Nevertheless, no strong causality seems to have been identified between single interventions aimed at changing specific physiological functions at the level of body structure and function and changes in participation (Adair et al, 2015; Wright et al., 2008; Novak et al, 2013). This indicates that an improvement of bodily functions alone does not solve the complex participation challenges of people living with CP. Recent studies offer an alternative explanation for why people living with CP and other disabilities participate less in social and societal arenas. These studies argue that environmental and personal factors may help explain the lower levels of participation (Imms et al. 2016; Maxwell et al., 2012; Colver et al., 2012; Anaby et al., 2014). In a systematic review from 2016, Imms and colleagues present a content analysis of research notions about participation from which they develop a family of participation and a family of participation-related constructs (fPRC). In the article Imms et al. (2016) suggests that the concept of participation has two essential components: attendance and involvement. Attendance should be understood as ‘being there’, and involvement is defined as the experience of participation while attending (ibid.). The fPRC modifies the International Classification of Functioning, Disability and Health (ICF) definition of participation, which the ICF defines as “Involvement in a life situation” (ICF, 2001), to “Attending and being involved in life situations” (Imms et al., 2016). In addition to a definition of participation, the fPRC consists of a framework that describes a reciprocal relationship between participation and three central person-focused processes (activity competences, sense of self, and preferences) (Imms et al., 2017). The three person-focused processes both stimulate participation and can be regarded as a potential result of participation (Ibid.). The fPRC defines the three person-focused processes as follows. Activity competences are defined as “the ability to execute the activity being undertaken according to an expected standard” (Imms, 2016, p. 36). Sense of self are defined as “intra-personal outcomes of participation related to confidence, satisfaction and self-esteem” (ibid.). Finally, preferences are defined as “the opportunity to choose and to be able to undertake activities that are meaningful or valued” (Ibid.).

The fPRC gives us conceptual tools that allow us to investigate the effects of participation in camps, which have been used as a typical intervention method for vulnerable people for more 154

than 100 years. Ramsing (2007) reports that already in the year 1876 Dr. Rothbrock established a camp for vulnerable boys to improve their health. The number and types of illness- and disabilityspecific camps has expanded as advancements in treatment and technology have improved the conditions and opportunities for people living with various diseases and disabilities (Sendak et al., 2018). Camps now exist for children with a wide range of physical conditions such as asthma, cancer, diabetes, HIV, inflammatory bowel disease, musculoskeletal diseases, skin diseases, hearing impairments, cerebral palsy and many more (ibid.). However, in this study we only include camps that focus on adapted physical activity for people with disabilities. One such contemporary camp is the Elsass Fondenâ€™s four-day resilience-based sports camp. The camp was designed for young people and adults with CP to be a positive turning point that stimulated resilience processes through a peer community and challenging and joyful adapted physical activities (Luthar, 2003; Rutter, 2008; Ungar & Liebenberg, 2013). More specifically, the sports camp aimed to enhance the participantsâ€™ social relationships, self-perception and stimulate motivation and competences in sports and movement (Andersen, 2016).

Most existing research on camp programs for people with disabilities looks at experiences and short-term effects experienced at camp. Across disability, gender and age, research reports similar aspects of experience from participation in camps. Many studies thus highlight the social community with peers as very valuable (Dawson & Liddicoat, 2009; Aggerholm & Martiny, 2017; Goodwin & Samples, 2005; Ashton-Shaeffer et al., 2001; Nyquist et al., 2019; Goodwin & Lieberman, 2011). Furthermore, themes such as a sense of increased self-confidence and selfesteem (Aggerholm & Martiny, 2017; Goodwin & Samples, 2005; Ashton-Shaeffer et al., 2001), joy and fun (Dawson & Liddicoat, 2009; Nyquist et al., 2019), and independence (Dawson & Liddicoat, 2009; Goodwin & Samples, 2005; Nyquist et al., 2019) are found in several studies. Finally, discovering and learning new activities and skills are a central theme in many studies (Dawson & Liddicoat, 2009; Aggerholm & Martiny, 2017; Goodwin & Samples, 2005; Nyquist et al., 2019; Goodwin & Lieberman, 2011). While the above studies explain how young people and adults experience being at a camp for people with disabilities, they do not look at the longer-term aspects of how participants learn about themselves and how they make changes in perceptions and actions in the time after the camp has ended. This lack of knowledge on the longer-term effects prompted Henderson et al. (2007) to call for future camp research to focus on this topic. The literature review of the present study addresses this call by collating findings and conclusions that have been made in this field over the past 25 years. 155

Literature review In a study of a week-long summer camp for children and adolescents with craniofacial differences, Devine and Dawson (2010) explored the camp’s impact on participants’ self-esteem and social acceptance. Their findings indicated significant gains in both self-esteem and social acceptance in the end of camp, however these gains had dissipated 6-8 weeks later. In a similar study, Devine and Dawson (2010) examined the relationship between social acceptance and health-related quality of life (HRQL) for young people with hearing impairments who attended a residential summer camp. This study found that social acceptance and HRQL scores were higher after camp and in the 10-week follow-up test compared to the pre-camp-test. Two further studies have looked at the long-term effect of a three-week adapted physical activity rehabilitation program for children with various disabilities (Baksjøberget et al., 2017; Preede et al., 2015). One of the two follow-up studies conclude that the intensive program has the potential to motivate participants to maintain the level of physical activity set at the camp in everyday life (Baksjøberget et al., 2017). The other study shows a significant increase in both physical and mental functioning (Preede et al., 2015). Michalski and colleagues (2003) investigated a three-week summer camp for children and adolescents with learning disabilities and related psychosocial problems. The reported findings indicate that campers in the 6-8-month follow-up test experienced less social isolation and modest improvements in self-esteem. However, the measures for social skills failed to register significant changes, even though parents of the campers described improvements in the campers’ cooperation, responsibility, and self-control. Other studies have also investigated the outcomes that people with disabilities associate with participation in a camp program (Anderson et al., 1997; McAvoy et al., 2006). However, these camps diverge in the sense that they were integrated programs that included people with and without disabilities who went on trips together. One of these studies (Anderson et al., 1997) reports on the efficacy of an integrated outdoor adventure program in stimulating positive change for people with and without disabilities. This longitudinal study found an increase in relationship development, outdoor skills, and several quality of life indicators. Another study on integrated camps, by McAvoy and colleagues (2006), aimed at understanding how participants who have a disability, transferred outcomes gained on an integrated wilderness trip back into their everyday lives. The researchers interviewed 14 participants six months after the wilderness trip experience. The findings suggested that the participants with disabilities were able to transfer their wilderness trip experiences to their work, outdoor skills, their family lives, 156

and to everyday stressful and challenging situations. Additionally, most participants indicated higher levels of motivation and enhanced self-confidence in their life abilities as an effect of their wilderness experience.

In conclusion, research on camps for people with disabilities continues to grow, yet more knowledge is still needed on how and if people with disabilities manage to transfer sports camp experiences back into their daily lives. This study aims to describe how young people and adults with CP experience how their participation in the Elsass Fonden’s four-day resilience-based sports camp has affected them in the time after camp. In addition, the study seeks to better understand if and how participants can transfer experiences form the sports camp into their everyday life after participating in the fourday program. By bringing the participants’ own voices into our research, we can create new knowledge on how a sports camp may be a helpful method of helping people with CP to increase their participation in social and societal arenas.

2. Method 2.1 Context - sports camp The four-day sports camp for people with CP is a social adapted physical activity program developed and arranged by the Elsass Foundation, Denmark (Andersen, 2016). Elsass offers camps for all people with CP and with various levels of disability in the age range from 5 – 60+ years. The participants are allocated to camps in relation to age and level of physical ability. In this study, we have included four camps, which are presented in the following table.

Camp 1 Camp 2 Camp 3 Camp 4

Participants (n) 20 16 11 10

Location Elsass Foundation Elsass Foundation Egmont Folk Highschool Club La Santa

Age 10 - 13 14 - 18 10 - 17 30 - 60

Condition Able to walk Able to walk Using wheelchair Able to walk

Table 1. The four Elsass sports camps for people with CP included in this study.

Despite catering for a great range in age and physical abilities, all camps are designed in the same way. All camps include accommodation, the participants share rooms with one to three other participants, everybody participates in all meals and follows the same activity program. The only

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factors that vary between camps are the location of the camps, the mix of specific activities (though the structure of the program remains the same), and at the camp for wheelchair users, participants are accompanied by a private helper. In addition to the adapted physical activities, two group talks are arranged every morning and afternoon. These talks aim to stimulate reflection, and create a bridge between the participants’ personal stories, expectations, lived experiences at camp and topics relevant for their lives outside of camp such as boundaries, creativity, and perceived abilities.

2.2. The holistic resilience strategy of the Elsass sports camp The design and strategy of the Elsass sports camp aims to enhance resilience processes, which in this context include both neurophysiological, psychological and social development potentials (Andersen, 2016). The thoughts behind the design and strategy are elaborated in the following.

Neurophysiological development potential: The many physiological (McArdle, 2015; Michalsik & Bangsbo, 2002), cognitive (Damiano, 2006; Kramer & Erickson, 2007; Hilman et al., 2014) and neurological (Dayan & Cohen, 2011; Lorentzen & Nielsen, 2012) effects of physical activity will often be used as the main arguments for a sport and movement intervention. While this is not directly the case in the Elsass sports camp, as significant neurophysiological effects cannot be expected to occur during the four-day program, the effects of physical activity are still central to the choice of intervention (Andersen, 2016). This is linked to a potential indirect effect of the adapted physical activities. At the sports camp one of the aims is to inspire participants to lead a more active lifestyle by presenting challenging and motivating adapted physical activities that can lead to enjoyment and great successes. Important elements as research indicate how personal factors, such as intrinsic motivation caused by enjoyment and having an identity as a physical active person, demonstrated great power in explaining participation in physical activity for people with disabilities (Saebu & Sørensen, 2011; Martin, 2006; Sørensen, 2006).

Psychological development potential: The camp intervention presents participants with difficult and fear-inspiring adventure activities, as these help to create a setup in which participants can experience success in situations that many of them find most difficult – situations where they must release control, rely on themselves and their bodies (Martiny, 2015). These experiences can potentially enhance the self-efficacy of participants and create new, more optimistic stories and interpretations of themselves, their bodies 158

and abilities (Panicucci, 2007; Ewert, 1999; 2001; Herbert, 1996). Such new bodily experiences could enhance the psychological development potential and furthermore change how participants choose to act in the future (Bandura 1977; 1997).

Social development potential Any type of activity-based camp (sports, theater, arts, music), includes an interest- and practice community that centers the participants’ focus of attention, builds bridges among different people and hereby creates good conditions for relationships (Wenger, 2004), thus enhancing the social development potential of participants. However, sport and movement may in its direct form be relationship-forming when organized with care (Bugge et al., 2015). Sport and movement particularly differs from other intervention methods in three areas – close body contact and laughter when playing games (Winther, 2008; Peitersen, 2008), a requirement for communication and collaboration skills when participating in team building activities (Rønholt, 2008), and the dependency and trust that glues people together when engaging in challenging and fearful adventure activities.

Even though the potential developmental outcomes can be divided theoretically into neurophysiological, psychological and social aspects, the three elements cannot be separated in practice. The different components are interrelated, and hereby each other’s preconditions (Merleau-Ponty, 1962/2002; Lorentzen & Nielsen, 2012). To create an intervention where all components can act together instead of in parallel, the camp design is grounded in three models used in resilience-based interventions: the protective, compensatory, and challenging models (Garmezy et al., 1984; O’Leary, 1998; Borger, 2010).

The sports camp program The protective, compensatory, and challenging models adopted in the design of the sports camp affect the program in several ways. Andersen (2016) elaborates on the theoretical and methodological foundation of the sports camp, the key elements of which are summarized here. The camp begins with a great focus on social games and teambuilding activities to create a good atmosphere and a trustful and secure environment (protective model). Second, the participants are presented with different adapted physical activities (Sherrill, 2004) such as martial arts, stand-up paddle board or trampolining to let the participants experience how they can manage new situations and activities, if they are flexible and creative in their engagement (compensatory model). Finally, the participants are presented with adventure activities, such as climbing, 159

kayaking or jumping from a diving board in the swimming pool, which aim to challenge the participantsâ€™ perceived abilities and courage, in order to let them experience that they can do more than they perceived they could (challenging model).

2.3 Participants Prior to the start of the four camps, the information on participants was reviewed by the professional team that was in charge of the camps, and four participants at each camp (16 in total) were selected and asked to participate in the present study. Participants were chosen in a manner that achieved the greatest diversity in gender, age, level of ability/disability and camp experiences. All participants that were invited to participate in the study accepted the invitation and signed a form of consent (in the case of minors, parents signed a form of consent). All 16 participants had been diagnosed with cerebral palsy. Twelve participants (camp 1, 2 and 4) were classified as level I or II on the Gross Motor Function Classification System (GMFCS) (Palisano et al, 2008), which meant they were able to perform gross motor skills such as walking, running and jumping. The remaining four participants (camp 3) were classified as level III or IV. While two of these participants could walk with assistance, all of the level III or IV participants used a wheelchair most of the time and needed support in many activities. The communicative abilities of the participants varied greatly. In relation to the Communication Function Classification System (CFCS) (Hidecker et al, 2011), levels I â€“ IV were represented among the 16 participants. This meant that some participants spoke in a clear language without any problems, while others both spoke slowly and were difficult to understand. We have anonymized all participants. The names used in the paper are created by the authors.

2.4 Data creation This study is based on a phenomenological inspired semi-structured interview (Kvale & Brinkmann, 2009; Jacobsen et al, 2015) 5-6 months after the participants had participated in the sports camp. Before this interview, the participants had participated in two other interviews. One interview had been held a month before camp, to get a sense of their lives, and a second interview had been held the first week after camp, to get a sense of how they experienced being a part of the camp. The aim of the interview reported on in the present article was to obtain qualitative insights on how the participants have experienced their participation in the sports camp has affected them in the period (5-6 months) after camp. Some of the participants interviewed had been to camp more than once, and therefore refer to a longer period than 5-6 months. From a phenomenological point 160

of view (Jacobsen et al, 2015; Giorgi & Giorgi, 2003; van Manen, 1997; 2016), we are interested in understanding how the participants experience, perceive and interpret whether aspects of their lives have or have not changed in the time after camp. Practitioners and researchers who work with people with CP will know that many people with CP have extensive experience of talking with health care professionals, as they have been a part of the health care system most of their lives. We posit that people with CP develop a special way of communicating in which they use professional terminology or answer questions in a manner they believe or have learned is received in a favorable manner by health care professionals. To ensure that the participants answered our interview questions in relation to their own experiences and perceptions, we took care to inform the participants that there were no wrong types of experience, learning or developmental process. We encouraged them to be honest about how they experienced the camp had or had not influenced them and their lives. In addition, we asked open-ended questions to stimulate free reflection and encouraged participants to exemplify their points, which allowed us to ensure their answers were substantiated. Another methodological concern in relation to the interviews was the participantsâ€™ ability to reflect upon these open-ended and abstract questions in relation to changes, development and learning potentials. In order to accommodate this perceived challenge, we chose to complement the verbal word used in the interviews with a more tangible and bodily element â€“ illustrative coaching cards that showed many different kinds of situation, emotions and symbols. The cards could be used as metaphors for the participantsâ€™ experience of how the camp has affected them in the time after camp. This can be a valuable tool, as metaphors are the best way to talk about feelings and bodily experiences (Stelter, 2012). The cards were used as a bridge for mutual meaning making and understanding between us and the participants, as we used the metaphors to understand one thing through another (Miles & Hubert, 1994). Figure 1 shows the cards chosen by one of the participants during an interview. Figure 1: Cards representing the camp-effect

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2.5 Analysis strategy A thematic analysis consistent with the three-step method described by Braun and Clarke (2006) was conducted to identify patterns and key themes in the interviews. To begin with, all the interviews were transcribed and read to gain a picture and impression of the data as a whole. Second, the core message of each response was described in several words and a data-driven code was added, to identify the main message and make the meanings appear clear. Third, a final reduction was carried out in which all the similar initial data-driven codes were grouped together to form key themes, which in their entirety present the essence of the phenomenon “the experienced influence of a sports camp”. The identified themes will be presented and elaborated on in the following sections.

3. Findings In this study we investigated if a sports camp has the potential to change patterns in the participants’ lives in the time after camp. The empirical material indicates that four themes capture the essence of how the sports camps have stimulated changes in the participants’ lives. The four themes are: (1) Social participation; (2) Approach to challenges; (3) Stories and personal narratives; and (4) Activity participation. All four themes represent development outcomes at two levels. One level represents how the participants have transferred aspects of the camp directly into their lives (direct transfer), and another level represents how aspects of the camp have had a transformative potential and now appear in the participants’ lives in a new adapted shape (adaptive transfer). Beside the four themes describing changes, the participants also describe factors that seem to disturb their development process. We therefore introduce a fifth theme: “Confronted by everyday life”. 3.1 Social participation – ”It’s just like finding a family you didn’t know you had.” Direct transfer:

A valuable and different kind of friendship is mentioned as one of the

most common and meaningful concrete outcomes of the camp. In contrast to the participants everyday lives, they describe a feeling of having connected with people who really care, understand and support them. Nevertheless, the participants describe many levels of friendship outcomes. In the highest end of the friendship span we find those who describe how particular relations at camp have resulted in close friendships in which they see, talk and use each other on a regular basis. Especially the participants at the camp for adults describe how they have 162

developed very powerful and significant bonds with some of the other participants. One of the men, Poul (57 years old) even felt he had found “a family you didn’t know you had”. Participants report sharing sad and happy everyday life stories, consulting and supporting each other when having problems and meeting for events, activities or a simple cup of coffee. They have made a significant difference for each other. At a smaller scale there are those who see and write to each other occasionally and who are invited to big events such as a birthday. In this regard, the group of adults tell about the creation of an annual gathering every Christmas. They know they care for each other and always can write to each other; however, they are not part of each other’s everyday lives or concerns. Finally, there are a group of participants who at first find the friendships at camp very meaningful, add each other on Facebook, but do not have any further interaction. However, they mention the relationships they have these four days at camp as something of value, because the unity and friendships at camp are perceived as a unique and significant contrast to their social lives and conditions back at home, where some feel lonely. This is exemplified by Amanda (17 years old), who already talks about signing up for the next camp and explains: “I just got to know them, so why throw it all away. Because I don't have so many friends at home.” Beside these meaningful relationships, some of the participants address some challenges and a related sense of dissatisfaction. This is related to the fact that many – due to geographical distance – are not able to maintain their friendships at the level they would like to. Describing this unfulfilled wish, Sofie (16 years old) says: “I miss them very much”.

Adaptive transfer:

The valuable social experiences many of the participants

have had at camp appear to have affected some participants’ motivation and courage to confront some of the social constructions and relations they were struggling with in their everyday lives. Social participation seems to have been challenging for the participants in two different ways, one group describes how they felt placed in the social position of what could be described as “the quite insecure outsider”, and the other group describes how they felt placed in the social position of “the over-compensating insecure fighter”. The first group describes how they, prior to the camp, often became a silent and passive observer, who either took the social position of follower or simply just kept to themselves. After participating in the camp, many from this group have had the desire and courage to try to move from this social position. As the 14-year-old boy Noah says:

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It was clearly because the social part at camp did something completely different to me. It gave me much more desire to try to get back into the social community [at school]. Because I had a very hard time in my class before camp. Noah has actively chosen to change his social behavior and participation. He began to invite friends back home and stayed after school to hang out with the other boys. He describes how this has changed his social position in the group and influenced his desire to go to school in a positive way. In connection with this, Poul (57 years old), who has always been very shy and had low selfconfidence, describes how he has become better at taking responsibility for himself, and at saying what he means and doing what he wants. As he says: “I'm probably a little less a follower, I would say. I have become better at standing up for myself than I was in the old days.” The second group describe their insecurity in another way. They have not been afraid to engage actively, but they describe how social relations have been exhausting because they have felt they always had to be the best and strongest version of themselves to gain other people’s acceptance and respect. They have pretended and hidden their vulnerable sides because they did not want to be pitied. At camp, they have learned that vulnerability is not a weakness. In contrast, it is very respectable to dare to open up about one’s vulnerable self to other people. This change in perspective prompts Maria (30 years old) to say: “In general, I think I have become more embracing towards other people because I'm not so afraid that they should see how imperfect I am anymore. (...) I think it’s based on the talks we have had, but also on the basis of people who say "We like you, just the way you are".” Maria describes how she now feels confident enough to show her true self much more, and how this has had a great effect on herself and on the relationship to the people she decides to open up to.

3.2 Activity participation – ”Sometimes it’s better to try something new” Direct transfer:

The four-day camp program is filled with various adapted physical

activities that many of the participants find interesting and motivating, which prompts Margrethe (43 years old) to say:

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“Often you come home from camp and feel like you would like to practice some of these activities in your everyday life. You are filled up with a proper ballast that makes you feel everything is possible.” While Margrethe expresses a desire to participate, it is also a desire she has experienced can be hard to transfer into reality, as she continues to describe: “But then you come home to the realities, where it does not always go hand in hand with everyday life.”. However, this is fortunately not the case for every participant. Three different aspects of direct activity transfers are mentioned by other participants: (1) everyday activity, (2) exercise routine and (3) special occasions.

Everyday activity:

This aspect is described as an acquisition of new activity skills the

participants can use in their everyday lives. One of the most common activity skills mentioned that is useable on a daily basis is bicycling. Some of the participants have started using a bicycle as a means of transport they can use for school, work or excursions, which increases their possibilities for participation as well as their sense of independence.

Exercise routine:

While many of the youngest participants already participated in sports

on a regular basis, the wheelchair users and the adult group did not do so prior to the camp. Some of the adult participants describe how the activities at camp have motivated them to sign up to sports teams or classes where they now participate on a weekly basis. For example, Frank (53 years old) describes how being a part of the camp had given him an energy boost and a gentle push to be active again. He says he needed this push, as his life had been standing still after having lost his wife to cancer. At camp, he found a new passion for spinning and found a spinning class for people with CP he could join. He had never tried spinning prior to the camp, but today he has turned spinning into a regular weekly exercise habit. He describes how this new routine has given him more energy, a new social community and made him lose several pounds. Likewise, Margrethe (43 years old) and Poul (57 years old) have begun playing table tennis after having played it at camp. Inspired by her new-found interest, Margrethe states: “I love Monday morning (…) I think it's so great that we are going to table tennis, I really like it. So it’s like - now it doesn’t matter it is Monday.” In contrast, many of the wheelchair users describe that even though they have felt motivated to begin to some of the activities presented to them at camp, they have not enrolled in any such activities. They mainly explain their lack of as being due to difficulties in finding a fitting sports team or class in their local communities.

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Special occasions:

Several of the adventure activities the participants experience at camp

(kayaking, climbing etc.) are not readily accessible in everyday life. Nevertheless, many of the participants describe how their acquaintance with these new activities has given them the courage and desire to try them again. For example, one of the women describes how she has accepted an invitation to a workplace event that involves a climbing activity – something she otherwise would never have agreed to participate in.

Adapted transfer:

The experiences gained at camp has clearly motivated many of the

participants to further explore and practice the adapted activities presented at camp. Nevertheless, the experiences have in many cases also increased their motivation to confront some of the challenging areas they personally perceive as limiting to their way of living. While these challenges have affected many different aspects of the participants’ lives, the participants describe how they have not previously had the energy, confidence or courage to deal with them. On the one hand, many of the participants report that they have experienced changes in their approach to participating in challenging activities that are an integrated part of their everyday school or working lives. On the other hand, they describe changes to their approach to activities that they are confronted with in their spare time. In relation to the activities the participants are confronted with in their everyday school or working lives, especially the young people describe how they have become better at taking responsibility in relation to tasks that involve participation in school. For example, Noah (13 years old) describes taking part in group presentations, something he has always managed to avoid. In addition, after the camp, Sofie (16 years old) describes how she has decided to do her final exams, which she perceived as too challenging before camp. The biggest changes described by the participants relate to their spare-time activities. Many participants describe how they have been given a boost to either start a new sports activity or participate in activities they had not previously had the courage to engage in. For example, Maria (30 years old) describes travelling by air to see a friend in the Faroe Irelands, despite her fear of flying. Some participants mention taking part in sleepovers despite feeling nervous about being away from home. In addition, many participants have signed up for a winter ski camp, despite their fear of injuries. Noah (13 years old) explains his thinking behind this decision: “I would say that camp teaches us that the old way can seem safe, but that it is not always the best way. Sometimes it’s better to try something new.”

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3.3 Approaches to challenges – “it doesn’t lead to any good to take the easiest way” Direct transfer:

One thing is to be presented with a lot of new and challenging activities

at camp, another thing is to decide to participate in them. Therefore, during the camp, a great focus was placed on talking and reflecting about how to communicate about challenges – how we feel, what we think, how our body reacts and how we act. One way the participants learned how to communicate about challenges was to class challenges in the color zones green, yellow and red. The green zone means you are not challenged (easy/safe) at all, the yellow zone means you are a bit challenged (a bit difficult/insecure) and the red zone means you are very challenged (seems impossible/percieved danger). Many of the participants report that they have adapted and used this communication strategy in their everyday lives when telling people how they feel and relate to different activities. The camp also focused on developing strategies that helped participants to commit themselves to doing what they wished to do despite emotions of anxiety, worry or doubt. Several of the participants describe how they have used some of these strategies in their everyday lives when they are having trouble making a risky decision or action they deep down want to make. One of the specific commitment strategies at camp was called “say it out load”, and is described by Maria (30 years old) when she tells about committing herself to sign up for Winter Ski Camp. She describes the emotions of ambivalence inside her – a feeling of wanting to go, but also a great sense of worry, which holds her back. In the end she wrote to some of the people she knew were going, and their enthusiasm and excitement made it easier for her to sign up. As she said: “And then they all said: ‘awesome that you are joining!’ And then I had to go” Maria thus describes how she could directly transfer this commitment strategy to her everyday life.

Adaptive transfer:

An adaptive transfer described by almost every

participant is how the camp has enhanced their mindset in relation to how they generally perceive and approach challenges in life. Several participants describe how they often tend to build up an inner worry or perception of impossibility when standing in front of a challenge, which drains them of their motivation to take action. At camp, the professionals running the camp demonstrated another mental approach to dealing with challenges through their pedagogical approach. Many participants describe how they have adapted this mentality to challenges in their everyday lives. One important aspect of how their perception of approaching challenges has changed, is reflected in participants’ reports on how they now connect meaningfulness with an engagement in challenges. As Margrethe (42 years old) describes: 167

“I have learned it doesn’t lead to any good to take the easiest way. You must challenge yourself, and that is what the camp shows. Regardless of how scared or hysterical you are right where you are most challenged, it is a victory to face it instead of escaping it. Because I can tend to make the easy choice and make an escape.” In accordance with many of the other participants, Margrethe now interprets challenging situations differently than before. She now connects them with possible victories instead of possible failures. These victories do not necessarily relate to an accomplishment, but just as much to being brave and determined enough to make the decision to engage in the challenge. This focus relates to the process instead of the result. In addition, several participants describe how this focus has changed the way they think and talk about challenges. Instead of telling themselves a negative story about how difficult, hard and dangerous it is going to be, they now tell themselves a more optimistic story, such as “What is the worst thing that can happen”, “I can always give it a shot – maybe I can or maybe I can’t. The important thing is that I try” or “If I believe in it and put some effort into the process, it is more likely that I find a solution”. The participants describe approaches that stimulate action-orientated behavior and participation, instead of resignation and passivity. 3.4 Stories and personal narrative – ” I have learned that it is okay to be me” Direct transfer:

At the camp, all participants gained new experiences which generated

stories for them to tell. Especially the experiences with the adventure-based activities became “something to brag about”, as one of the girls from the camp for wheelchair-users said when she explained why she – despite a sense of anxiety – really wanted to jump from the chair in the swimming pool. She knew she would feel proud and that it was an experience and story she needed to have and share with the people around her. Participants report that having a story to tell is meaningful for them, but what they explained as being most valuable is the reaction they get from the people they tell the story to. For example, one of the women describes how she told her physiotherapist about having completed a mini triathlon at camp. She describes telling a story about an extraordinary accomplishment that provoked a great verbal acknowledgement from the physiotherapist: “Wow, you are good”. This acknowledgement feeds back and clearly strengthens the woman’s self-confidence, as she describes: “Then you just straighten your back a little more. You know… when others also can see it and not just you guys. (…) It just means something when they catch it and receive it in a cool way, and it doesn't just become something like ‘whatever’”.

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One dimension reported by participants is the development of self-confidence, another dimension the participants describe is how the story effects the person it is told to. In the case just mentioned, the physiotherapist may have changed her perception of the woman, as the physiotherapist also said: “Have YOU done that?”. The physiotherapist appears to have doubted her patient’s abilities and persistence, but with this new mini triathlon story the physiotherapist has a new and more powerful story to tell about her patient. This story has the potential to change the physiotherapists’ attitude and approach to her patient.

Adaptive transfer:

A story to tell can be very valuable, but what really

counts is what the participants tell about themselves – their personal narratives. The most common change described by the participants – regardless of age, gender and level of disability – is an enhanced personal narrative. They describe a new perception and interpretation of themselves and their own abilities caused by the significant successful experiences at camp and the inclusive and trustful social environment. One of the changed perspectives described by several of the women is a feeling of having found an inner peace and acceptance about who they are. As Maria (30 years old) says: “As a person, I have learned that it is okay to be me, but that is also goddamn important. Can you believe it should take so many years? But I really think it's a huge part of what the camp has done for me. That it's okay. And with that comes a belief in one's own abilities and an enjoyment in doing things that previously just have been a survival or a proof.” While describing a feeling of achieved self-worth, Maria’s statement also indicates how she has previously had a feeling of low self-confidence, of having to struggle and fight for everything, including the acceptance of others. However, the statement should not be understood as a newly perceived ability to manage everything. The following quote indicates that it rather means that she has found comfort in being herself, because she now knows that people care for her despite all her perceived imperfections. “It gives a sense of security to know it is okay to be a little vulnerable. I can feel my camp friends and my camp family in my everyday life – I can feel that they are there and that we want each other in some way.” Not only the new social relationships have influenced and developed the participants’ self-worth. They also describe a new way of perceiving and interpreting their own actions and abilities in 169

relation to the life they live, which has influenced their development. As Margrethe (43 years old) says: “A tough and cool Margrethe has come out of being at camp. I think it takes a strong person to live the life that I have. Not everyone would be able to manage it, but I can.” This does not mean she can now perform motorically better than before, but her great accomplishments at camp have changed the way she interprets her abilities. Today she is satisfied and even seems proud about her way of managing her everyday life. Not only do the participants describe an enhanced feeling of self-worth, they also describe an enhanced sense of their abilities after having participated in a camp. Especially the significant successes in the adventure-based activities have strengthened their perceptions. The description below by the 16-year-old girl Mathilde sums up something that is explained by almost every participant: “From camp you learn to believe more in yourself. There are many things I thought I couldn't do. (…) I think it´s because you are put in situations that just are... well, we think they are physically impossible. But then it turns out that we can actually manage them, if only we have faith in it.” Nevertheless, three participants (all boys) do not describe a change in their personal narrative. They all describe camp as a great experience, but not as an experience which has developed them as individuals. For them it has rather confirmed their personal narrative, as someone who is likeable, fights for what they want and often has success in doing so.

3.5 Confronted by everyday life The final theme we present from our analysis, ‘confronted by everyday life’, is related to factors that disturb participants from making the positive changes that camp has motivated them to make in their everyday lives.

When participants describe how it can be difficult to integrate the positive aspects of the camp into their daily lives, their descriptions reflect two key disturbing factors. These disturbing factors are related to ‘camp as a limited period’ and ‘the world around the camp’. Both factors will be elaborated on in the following.

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Camp as a limited period Camp as a construct is a place with temporary accommodation. This is an intense and limited period, which is both an advantage and disadvantage of the camp concept. The advantage is connected to the intensity, which gives the participants the opportunity to develop strong social bonds in only a few days. Furthermore, the compressed activity program leads to many great experiences, which give the participants a boost and feeling of euphoria. These intense elements can thus help participants to peak psychologically and socially. However, when they return from camp to everyday life removes the temporary stimuli provided by camp. A person who has reached such a peak, thus risks returning to a previous psychological state or social status. Many participants describe this as a down trip that is a difficult and lonely contrast to the camp. Maria (30 years old) describes such an experience: It’s that thing about coming home. It's so crazy hard because you become so embraced [at camp] and you are loved just as you are. And then it’s just difficult to come home after such a great camp, and suddenly nobody is there. You just get hit right in the face by everyday life... I actually think that the hardest part is that there are no people who can see how wild it has been for me. And I happen to know that there are more people who feel like that. Maria and many of the other participants express a great contrast between camp life and everyday life, which can make it difficult to integrate positive changes in themselves from camp into their everyday lives.

The world around the camp The second disturbing factor is also reflected in the above quote by Maria. This is related to the fact that the camp only integrates the home social environment of participants to a limited extent (Andersen, 2016, p. 108-110). This means that the participants’ classmates, colleagues, parents, partners and physiotherapists only have very limited insights on the processes and the potential changes the participants are going through. In some cases this limited insight seems to have limited the impact the camp has had on the participants’ development in the time after camp. Participants explain that the feel their development is limited because of the difference in perception between themselves and their social environment. They describe how their social environment tends to be locked into a perception of what the participants are able to manage and participate in that is more limiting than the participants’ perception of themselves and their abilities post camp. This experience is described by Margrethe (43 years old): 171

“You come home and find that you can't do all the things you say you can do, because there isn’t anyone back home who believes in it. I don’t have my team at home, so it’s not realistic that I can do these things at home.” Margrethe reports in the interview that she feels she has made great progress in many areas, but emphasizes that the great contrast between her own perception of her abilities and the perception that her social surroundings have of her abilities can disturb her in exploiting her potential in the best possible way. In the worst of such cases, participants describe how they experience being held back in their development and feel a sense of frustration and hopelessness. Such emotions stem from the contrast between their experience of how great they can feel and perform under the right circumstances (at camp), and their subsequent experience of not being able to transfer this success to their everyday lives.

4. Discussion This article set out to investigate the participant-reported outcome of a holistic resilience-based sports camp for young people and adults with CP. We will now discuss how our findings – in relation to the fPRC framework – may be interpreted as development outcomes that have or have not influenced how the young people and adults with CP participate in different life situations in the time after camp. This should help us elucidate whether a sports camp can be a way to increase participation for people with CP. We also discuss some of the challenges and limitations related to the sports camp intervention. We do this to explore the perspectives for future development of camp designs. We hope our discussion can contribute to new considerations in the preparation of guidelines, recommendations and intervention programs for young people and adults who are living with CP.

The four themes presented in our findings were: 1) social participation, 2) activity participation, 3) approach to challenges, and 4) stories and personal narrative. Each of these themes describes changes in the participants’ perceptions and behavior as a result of participation in a sports camp. We now move on to discussing how the four themes can be linked to the concept of participation as presented in the fPRC by Imms and colleagues (2016). In the study Imms et al. (2016) presents participation as a complex multidimensional construct that is interpreted as both a process and an outcome. The construct describes a process where participation potentially can influence intrinsic factors (new sense of self, new preferences, and

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activity competences). In the outcome aspect of the fPRC, intrinsic and environmental factors influence participation. Our findings can be related to both aspects of the fPRC construct. The themes we identified in the participants’ descriptions as ‘new approach to challenges’ and ‘new stories and personal narrative’ can be interpreted as personal development caused by participation in the sports camp. In this case, the development described by the participants are associated with a new sense of self and new preferences as a result of participation as a process – being at camp. Such development is also seen in several other studies (Brannan, 1997; Devine & Dawson; 2010; Michalski et al., 2003). In contrast to this development caused by participation as a process, the two themes ‘social participation’ and ‘activity participation’, can rather be explained as participation as an outcome. This will be further discussed in the following. At the sports camp, the participants develop close significant relationships and distant social networks. These social dimensions were also highlighted in the study by Anderson et al. (1997). The present study provides new insights on how some of the participants aim to transfer social experiences gained at camp into a new social behavior in their local environment. In the terms of the fPRC (Imms et al., 2016), such a change in behavior can in some cases be interpreted as an increased social participation. For example, Noah went from being a boy who mostly kept to himself both in school and at home, to a boy who at camp found meaning in and the value of being part of a social community. This meaning inspired Noah to socialise with the other boys after school and to invite them back to his home. In relation to the fPRC, this newfound meaning can be interpreted as new preferences that motivated an increased social participation, as he now both attends social settings and involves himself with his classmates. This increase in social participation is also seen in the example from Poul. Earlier, Poul attended a lot of social gatherings in his family and with his friends, however he was mostly a shy follower, who did not have the confidence to involve himself in the social settings. Because of his lack of involvement, this social behavior could not be perceived as actual social participation. However, this has changed, and Poul proudly describes how an enhanced sense of self has encouraged him to contribute with his opinions and perspectives. This social transfer is also seen in a study by Dawson & Liddicoat (2009). Thus, in this study some of the participants describe how they through the social interactions at camp increased their comfort level in social situations outside of the camp. Finally, some of the social changes described by the participants cannot be interpreted as a quantitative increase in participation, as they do not attend social settings or involve themselves more than before camp. However, their post-camp social participation may be interpreted as a qualitative increase, as they participate differently. An example is Maria, who was socially both 173

attending and involved in many situations. However, she often only showed her fun and loveable side. After camp she has learned the value of also being more authentic and vulnerable in the interaction with her family, friends and colleagues. Another area where the participants describe an increase in participation is in relation to different activity areas. The direct transfer of participation in activities experienced and explored at camp is also seen in other studies, in which participants for example report better outdoor and recreational skills (Brannan, 1997; Anderson et al., 1997; BaksjĂ¸berget et al. 2017; McAvoy, 2006). When using the fPRC framework, this transfer can be understood in relation to the concept activity competences. At camp, the activities are adapted to the participants, and therefore they experience being competent and successful in the activities most of the time. This awareness of abilities and activity opportunity motivates many of the participants to continue practicing some of the activities when they come home. Unfortunately, most of the wheelchair users do not manage to transfer the activities into their daily lives. This lack of participation mostly seems to be associated with environmental factors, as the participants describe that they find it difficult or impossible to find a fitting sports team or class in their local communities. Despite a lack of direct transfer of the adapted physical activities, the wheelchair users and many of the other participants describe how they after camp have decided to participate in activities at school, work and spare time that they prior to camp did not have the confidence and courage to engage in. This involves for example participation in single or group presentations, final exams and new unexplored events and travel activity. These adapted transfers can be seen as outcomes that link back to experiences at camp that stimulated an enhanced sense of self and new preferences. At camp, the participants experienced having success in new and perceived challenging activities, which created confidence and hereby a strengthened sense of self. Thus, after the camp, many of the participants more often prefer to engage in challenging situations and activities, as they have experienced how engagement in such activities can hold more meaning than being passive or making an escape. These transfers of camp experiences to the participantsâ€™ everyday lives are similar to the findings presented by McAvoy et al. (2006).

While we argue above that the camp in some cases influences the participantsâ€™ participation, the findings also lead to a concern that the camp does not fulfill its development potential. The limitations of the camp are grounded in the fact that although many participants describe how they after camp feel very motivated to make changes, to face their fears, and to show themselves and the world who they are and what they are capable of, many of the participants also explain that their actions and level of participation do not reflect the degree of motivation they had felt when 174

they ended the camp. These difficulties in transfer to everyday life are also expressed in a study by Goodwin & Samples (2005). Furthermore, a study by Devine & Dawson (2010) show how the increasement in social acceptance and self-esteem after camp, were not significant after 6-8 weeks. Such findings indicate that the intervention design should be developed further if the participation development potential established at camp should be realized in the participants’ everyday lives after camp. Future work on the Elsass sports camp intervention design should ensure that the developmental potential established at camp is realized in participants’ everyday lives by focusing more on the post-camp transfer process. The current intervention design does not include any follow-up days or programs. This could be taken into consideration in the future, if the camp spirit and motivation for change are to have a stronger impact on how the participants participate in their everyday lives. Another dimension to explore is how the camp can incorporate the participants’ social environments back at home, as the people in the participants’ home environments should be the ones to further motivate and support them in their development. This point is supported by the field of resilience research, which shows that the development of resilience cannot be understood in isolation, and includes several complex processes at both individual, micro and macro levels (Masten, 2001). The participants’ social environment must thus understand the newly found motivation of the participants, if they should have the opportunity to support and further motivate the participants in the best way.

Limitations While our findings elucidate many positive development processes, three aspects of the intervention may have influenced how this specific group of participants with CP perceived their positive development. The first aspect is caused by a combination of two elements. On the one hand, participation in the sports camp intervention is completely voluntary, and on the other hand the theme of the camp is “sport”. This combination makes it reasonable to argue that most participants presumably like to participate in movement activities and therefore find the camp program motivating. However, if these prerequisites were not present, it is questionable if the participants would engage and benefit to the same degree. A second aspect of the intervention which we believe added to its success is related to the fact that many of the participants had attended camps prior to the sports camp, and in addition, participants had the opportunity to attend other CP programs (offered by the Elsass Foundation) 175

in the time in between camps. This means that especially the opportunity for further development of the social relationships between the participants was influenced by other social events than the camp, in some cases. The final aspect we should highlight is related to the cognitive level of participants. All participants at the camp had the ability to reflect upon their experiences, and hereby interpret great accomplishments as both great first-person experiences, and as symbols of what they might be capable of in general. This ability to interpret experiences is crucial in relation to the intended development the sports camp is designed to affect. This also means that the small group of people who are living with CP who have big cognitive challenges, and are therefore not capable of relating to themselves as persons who can interact with the world, might not benefit from this kind of intervention.

5. Conclusion In this paper, we investigated the case of a resilience-based sports camp for young people and adults with CP. We now have insights on how the participants experienced that the intervention affected them in the time after camp. Our findings indicate that the participants at one level experienced having transferred specific aspects from the camp directly into their lives â€“ which we termed as direct transfer. Furthermore, at another level, participants described that the camp experiences also appear in their lives in new transformed shapes â€“ which we termed as adaptive transfer. The changes the participants describe in relation to both direct and adaptive transfer were related to four areas (1) social participation (2) activity participation (3) approach to challenges and (4) stories and personal narrative. These findings indicate that the intervention both function as a process stimulating person-focused processes, and as an intervention where the enhancement of personal factors stimulate participation in new life situation. The findings also indicate dimensions which might disturb the development process. When describing their everyday lives, several participants described how they found it difficult to integrate the camp spirit and brave and persistent actions to the degree that they felt motivated to do at camp. This leads us to conclude that the intervention can be developed further. The two aspects we suggest would be most beneficial to address are ensuring better transfer to everyday life through (1) a follow-up program after camp, and (2) better collaboration with the participantsâ€™ social environment. The findings can contribute with new insights on how adapted physical activity interventions for young and adults with CP can stimulate person-focused-processes and participation.

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Acknowledgements I would like to thank the Elsass Foundation and Innovation Fund for financial support. I would also like to thank Helle Winther, Jens Bo Nielsen and Kristian Moltke Martiny for fruitful discussions and feedback on the article.

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Studie IV

That five-meter diving board man! That is one experience I will NEVER forget. While standing up there on the platform I remember telling you that I couldnâ€™t do it. I was sure something bad would happen. I was so afraid. Totally out in the red zone.

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The Red Zone – the psychology of significant mastery experiences A grounded theory study based on challenging and adapted physical activities

Mie Maar Andersen¹ ², Helle Winther³

Keywords Self-efficacy Adapted physical activity Cerebral palsy Psychosocial development

Corresponding author: Mie Maar Andersen Elsass Fonden Holmegårdsvej 28 DK - 2920 Charlottenlund Mail: mma@elsassfonden.dk Phone: (+45) 30489048

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The Red Zone – the psychology of significant mastery experiences A grounded theory study based on challenging and adapted physical activities

Abstract Bodily lived experiences in which a person successfully performs or manages a perceived challenging activity can be a powerful way of stimulating psychological changes, which may include creating a sense of enhanced self-efficacy. Such bodily-performance-based ways of developing self-efficacy can be referred to as mastery experiences. This article explores the processes behind and characteristics of mastery experiences in the context of four sports camps for people with cerebral palsy. To do so we present and develop a concept we have termed redzone experience. Observations of and interviews with sixteen camp participants were conducted and a grounded-theory analysis carried out. The core category that characterized the concept of the red-zone experience was identified as an incongruence between a participant’s preconceived expectation of an outcome and their subsequent experience of the outcome. Three additional core elements form the concept: a meta-motivation that is present in the participant as a deep-felt wish to engage; the presence of significant others; and a transformative self-story. The findings indicate how great challenges can create a sense of enhanced self-efficacy.

Keywords: Self-efficacy; Adapted physical activity, Cerebral palsy; Psychosocial development

1. Introduction Bodily lived experiences are said to be the most powerful way of stimulating psychological changes, as they provide the most authentic indication of whether one has what it takes to succeed in a particular activity or situation (Bandura, 1977). A person’s sense of self-efficacy is thus strongly influenced by the outcomes of their actions, which implies that successful performance or management of a perceived challenging activity or situation creates a resilient sense of selfefficacy, while repetitive failures or setbacks undermine it (ibid.). Bandura (1977; 1995; 1997) refers to this essential bodily-performance-based way of developing self-efficacy as mastery experiences.

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In addition to mastery experiences, Bandura presents three other sources for developing selfefficacy. These are vicarious experiences, social persuasion, and physiological and emotional states (ibid.). Vicarious experiences covers the observation that when a person sees others succeed or fail, this will influence that person’s self-efficacy beliefs. Social persuasion refers to how a person being persuaded verbally by others that they have or do not have the abilities to master a particular activity or situation can help or hinder that person in developing their sense of selfefficacy. In relation to a person’s physiological and emotional states, people tend to interpret these as indicators of their capabilities. For example, stress can be interpreted as a sign of potential poor performance. While all four sources of self-efficacy beliefs are relevant in understanding the development potential presented in this article, mastery experiences are the key element.

This article explores the elements that characterize experiences that stimulate the most significant personal successes and thereby the most intense increases in self-efficacy. To do so, we present and elaborate on a phenomenon that we in this article refer to as red-zone experiences. This is an experience characterized by a sense of inability to manage and handle a particular situation. The phenomenon ‘red-zone experiences’ stems from a previous study of four different sports camps for young people and adults with cerebral palsy (CP), which provides the empirical basis for this article (Andersen & Winther, submitted). The sports camp concept (Andersen, 2016) was designed to stimulate resilience (Luthar, 2003; Rutter, 2012; Ungar & Liebenberg, 2013) by establishing a trustful environment, peer relationships, and presenting the participants to challenging adapted physical activities. The challenging activities at the sports camp included climbing, kayaking, tackling a military obstacle field, jumping from a diving board, or doing a mini triathlon. Thus, the adapted physical activities were associated with tasks that many people with or without a disability would perceive as risky, difficult, or exhausting. The term red zone was used by the camp instructors and participants to describe states of panic, a sense of anxiety or perceived difficult and unmanageable challenges posed by the camp’s adapted physical activities. Nevertheless, when circumstances were appropriate, the participants described the red-zone experiences as their most significant successful experiences. The success described by the participants in the red-zone experiences correlates with the success of mastery experiences described in self-efficacy theory. Bandura (1997) makes the point that mastery of an easy task will not provide any new efficacy information, as it is in accordance with what is already present for the person involved. However, accomplishing a perceived difficult or risky task – such as in a red zone experience – conveys valuable insights for strengthening belief 186

in one’s capabilities. Hence a significant growth in perceived self-efficacy requires lived experiences in handling and overcoming significant obstacles and adversity through sustained effort. This correlation between self-efficacy theory and observations at the sports camp stimulated a curiosity and desire to understand the structure of these positive red-zone experiences better.

Stimulating an enhancement of perceived self-efficacy will be valuable for all people, as a sense of strong self-efficacy motivates people to set great goals and commit themselves to achieve them (Bandura, 1995). Furthermore, people with a sense of strong self-efficacy interpret obstacles as controllable and manageable challenges, see stress as an indicator of constructive arousal, and recover better from setbacks and failure (ibid.). These valuable characteristics of self-efficacy imply that professionals who work with people who are in a vulnerable position should focus on developing such people’s sense of self-efficacy such that they can overcome the many life situations that demand extra effort and persistence. This article focuses on people with the disability cerebral palsy (CP). The umbrella term CP defines a group of disorders that affect the development of postural and motor control, which occur due to a non-progressive lesion in the developing central nervous system (Bax et al., 2005; Rosenbaum et al., 2007). This condition results in many people with CP having involuntary bodily movements and finding it difficult to predict their own movements, and therefore they often do not feel in bodily control (Martiny, 2016; Ritterband-Rosenbaum et al., 2011). Qualitative studies have also noted that many people living with CP have a fundamental bodily uncertainty, do not trust their own body, have a sense of self-doubt and find it difficult to be in uncontrolled and challenging situations (Sandström, 2007; Brunton & Bartlett, 2013; McLaughlin & ColemanFountain, 2014; Martiny, 2015). With these factors in mind, many people with CP will probably have a sense of rather low self-efficacy in relation to interaction with unfamiliar and challenging movement activities. Therefore, having mastery experiences in perceived difficult or risky movement activities could be powerful experiences that could confront and change people with CP’s existing sense of self-efficacy. However, there are conflicting factors and paradoxes connected to this process of getting involved in and performing in this type of experience. Thus, even though the creation of mastery experiences in theory appears to be both valuable and simple, practice shows that people will often have an immunity to engaging in such experiences (Andersen & Winther, submitted). People who perceive their self-efficacy as low thus tend to shy away from tasks and situations they believe exceed their abilities. Therefore, challenging self-efficacystimulating situations will often be perceived as threatening by people with a sense of low self187

efficacy, and such situations are likely to elicit avoidance behavior instead of engagement (Bandura, 1977). A second paradox relates to situations where a person does engage and furthermore succeed in a perceived challenging situation, but does not enhance their self-efficacy belief. This lack of self-efficacy development can occur because people tend to give more credit and significance to experiences that are congruent with their self-beliefs, indeed, they reduce and overlook experiences that diverge and are inconsistent with their beliefs, even if they have been great successes (Bandura, 1997). These paradoxes show how complex it is to work with strengthening mastery experiences with participants who as a starting point have a sense of low self-efficacy. Hence the aim with this study is to explore, describe and elaborate on the positive aspects of red-zone experiences, in order to understand and explain how professionals can create and stimulate the most significant selfefficacy processes in a structured manner. This study addresses the following question through a grounded-theory analysis: What characterizes the most significant red-zone experiences that have the potential to be a valuable turning point from low to high self-efficacy?”

2. Material and methods In this section we introduce the participants and present the considerations and choices related to the data creation and analysis.

2.1 Participants This study is developed from observations and interviews with people living with CP who attended a sports camp. When these observations and interviews were planned, a phenomenological approach was chosen in order to obtain bodily first-person perspectives on how the participants experienced participating in the sports camp. The findings that are related to the participants’ experiences are presented in the article “Moved by Movement” (Andersen & Winther, submitted). The observations and interviews reported in these articles led us to investigate a specific type of experience that was described by almost every sports camp participant – the red-zone experience. We therefore elaborate on this experience in this article. The sampling of sports camp participants for the present study was inherited from the previously mentioned studies of the sports camps (Andersen, 2016). The sampling was designed to allow for diverse insights on how different participants experience participating in a sports camp. The professional team in charge of the camps reviewed data on the registered participants to select and 188

ask relevant participants if they would participate in a study regarding their camp experiences. Participants were chosen to achieve the greatest possible diversity in gender, age, camp experience and degree of disability. All participants who were invited to participate chose to accept the invitation, and parents of participants under 18 years old and adult participants signed a form of consent. In this study, we have included four camps, which are presented in table 1.

Camp 1 Camp 2 Camp 3 Camp 4

Participants 20 people with CP 16 people with CP 11 people with CP 10 people with CP

Place Elsass Fonden Elsass Fonden Egmont Højskolen Club La Santa

Age 10 - 13 years old 14 - 18 years old 10 - 17 years old 30 - 60 years old

Condition Able to walk Able to walk Using wheelchair Able to walk

Table 1. The four camps involved

As can be seen in table 1, all participants had CP. In this study four participants from each camp were included. Twelve participants (camp 1, 2 and 4) were classified as level I and II on the Gross Motor Function Classification System (GMFCS) (Palisano et al, 2008). This ensured that they could perform gross motor skills such as walking, running, and jumping. The last four participants (camp 3) were classified as level III and IV. While two of them could walk with assistance, all used a wheelchair most of the time, and needed support in many activities. In this paper every participant has been anonymized. The names used in the paper were created by the authors.

2.2 Collection of empirical material – observations & interviews Interviews with participants were carried out (Kvale & Brinkmann, 2009; Smith & Sparkes, 2018), and the participant observation method was used (Spradley, 1980; Kristiansen & Krogstrup, 1999). The choice of methods and considerations made in relation to the execution will be elaborated on in the following.

Interviews:

Semi-structured interviews with the 16 participants were conducted

within the first week after the sports camp. The interviews had a phenomenologically inspired approach characterized by openness, curiosity, and sense of wonderment about the participants’ first-person experiences (Van Manen, 2007; Giorgi & Giorgi, 2003; Todres, 2007; AlleenCollison, 2018). In addition, a narrative element was included, as the participants were asked to tell detailed stories about their most significant experiences at camp (Smith & Sparkes, 2009;

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Sparkes, 2018). To elaborate on their significant experiences, the participants were asked to make drawings of their significant experiences and choose illustrative photos that could be used as metaphorical symbols of their experience. These methods were chosen to add a sensual aesthetic dimension that could open the understanding of the embodied experiences and the first-person experience (Stelter, 2012; Alleen-Collison, 2018; Sparkes, 2018). Figure 1 shows the drawing and cards chosen by one of the participants

during

interview. An interview was carried out five months after the sports camp to gain insights on how the camp had or had not affected the participants in the time after. The last part of this interview was used to ask clarifying follow-up questions in

relation

this

study

Figure 1: Drawing and cards describing significant experiences

regarding the red-zone potential. Thus, the participants were asked to elaborate further on the experiences they addressed in the interview that had been carried out immediately after camp. Furthermore, they were asked to tell stories about significant experiences from their lives that did not include experiences from the sports camp.

Observations:

Participant observations were made at every camp. To narrow the

observation focus, there was a particular focus on the moments during the activities when the observer sensed that something intense, important or significant was at stake. In contrast to classic observation notes, which typically describe longer sessions in a neutral and nuanced language, the intense, important and significant moments were first recorded orally, and subsequently transcribed, and then written up as short, rich, sensory and detailed scenic descriptions (Winther, 2015; NagbĂ¸l, 2013). The choice of scenic descriptions â€“ as opposed to classical observational notes â€“ was taken for several reasons. First, in practice it was impossible to make classic observational notes, as the researcher was participating as an instructor. Second, in this context, scenic descriptions are seen as more meaningful empirical material, as they can contribute a more

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nuanced bodily sensory insight (Winther, 2015). Hence this method can provide a greater understanding of what is at stake for the participants in the red-zone experiences.

2.3 Grounded theory Grounded theory aims to discover, develop and verify new theory that is grounded in empirical material that gives new explanations and understandings of social processes (Strauss & Corbin, 1998/2008). This study follows the tradition presented by Strauss & Corbin (1998/2008) for three reasons. First, Strauss and Corbin legitimize the role of the researcher in bringing their personal insights and experiences into consideration when working with data. This is relevant as one of the authors of the present study has been working in practice with the sports camps for the past three years. Second, grounded theory as presented by Strauss and Corbin is a method that allows the researcher to render theory from qualitative data. Third, Strauss and Corbin have developed a technical system for operations and procedures to ensure quality and to validate the analytical process. This is an inductive-deductive three-step strategy – open, axial and selective coding – which will be elaborated on in the following.

2.4 Analysis process To develop theoretical structures and concepts that explain the positive red-zone experience, the analytical process used Strauss and Corbin’s three coding steps: open, axial and selective coding. Beside these three basic steps, four complementary analytical strategies were used in parallel. Thus, process coding was done, theoretical sampling conducted, and a matrix and diagram were developed. These analytical steps are described in the following.

Open coding:

Step one, open coding, is an inductive approach to the empirical

material, where the purpose is “Breaking data apart and delineating concepts to stand for blocks of raw data” (Strauss & Corbin, 2008, p. 195). In this study, the category of interest “The redzone experience” emerged when coding the second-round interviews. In each interview, narratives related to this category were collected into a single matrix and coded individually, sentence by sentence into smaller units of meaning.

Axial coding:

Step two, axial coding, is ’The process of relating categories to their

subcategories, termed ’axial’ because coding occurs around the axis of a category, linking 191

categories at the level of properties and dimensionsâ€™ (Strauss & Corbin 1998, p. 124). By identifying problems, causes, consequences and strategies in the stories, a causal axial storyline was identified. A process coding was carried out parallel to the axial coding. Process coding is a method which aims at creating transparency about how actions and changes at one level influence actions and changes at another level. In relation to the red zone, it was interesting to study the patterns between the learnerâ€™s expectations, experiences, interpretations and psycho-social learning outcome. To make the process transparent, manageable, and comparable, the storyline was placed in a matrix with seven subcategories:

Perceived challenge

Perceived abilities

Expected outcome

Reaction, thoughts, emotions and bodily responses before and during

Experienced outcome

Reaction, thoughts, emotions and bodily responses after

Meaning of experience

Table 2 Matrix of subcategories

As the specific dimensions from each story were systematically filled in the matrix, a pattern between the seven subcategories shaped a core category. This category clarified the key concept of the empirical material and red-zone potential. Though this step in the analysis may seem simple, it was a dynamic process in which the concepts and categories were developed through constant comparison with other slices of data.

In our findings section, we present two matrices that show the connection between these dimensions from the participantsâ€™ stories at different states. To fill out every space in the two matrices, an additional theoretical sampling contributed supplementary dimensions. This sampling was necessary as the stories from the participants in the first interview did not provide data for every aspect of the matrix. Therefore, we chose to use the last part of another interview with the participants with CP to ask questions about more specific experiences, and hereby complement the existing empirical material. In addition, interviews with six students from the University of Copenhagen Department of Nutrition, Exercise and Sport (NEXS) were made to nuance the theory and matrices. The purpose of interviewing this target group was to find a contrast to people with CP. The target group represented a group who assumingly had high levels of experience of and academic knowledge about movement activities and the body. In addition, this group assumingly had many good bodily experiences and better body control than an average male/female. Therefore, this was a contrast target group that could

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test if self-efficacy and resilience of people in general are improved by mastering red-zone experiences.

Selective coding:

Step three, selective coding is “the integration of concepts [category]

around a core category and filling in of categories in need of further development and refinement” (Strauss & Corbin, 2008, p. 236-237). In studying the core category by selecting the narratives with the most transparent storylines and including the elaborations from the five-month followup interviews and the interviews with the students from the NEXS, three additional and prerequisite core elements emerged. The core category and three additional core elements will be described and elaborated on in the results section. The transcribed interviews were rewritten into small stories (Sparks, 2002), and used to substantiate the findings presented.

As a last dimension, a diagram was developed to illustrate the relation between the different aspects shown in the matrices and the potential for developing significant self-efficacy through the red-zone experiences.

2.5 Trustworthiness To evaluate the quality and trustworthiness of this study, we draw on the work of Sikolia et al. (2013, p. 1) who explain that “[…] the trustworthiness of GTM [grounded-theory methodology] studies can be evaluated by examining the credibility, transferability, dependability and confirmability of the study”. Credibility refers to how accurately the empirical material reflects the different aspects of the phenomenon. This was ensured in several ways, such as a prolonged engagement in the field, empirical material from a variety of sources (interviews and observations), the participants’ words from the interviews were used in the development of concepts, and finally, clarifying follow-up questions were asked in the five-month follow-up interview. Transferability refers to the applicability of one set of findings to another setting. The transferability of the findings has been evaluated in relation to two perspectives. First, in the fivemonth follow-up interview, the participants were asked to tell stories about significant experiences from their lives in general. Many of these stories could clearly be identified as red-zone experiences. This indicates that the red-zone experience is transferable. Furthermore, in the last

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section of this paper we discuss how the transferability can also be understood in relation to people without disabilities. In relation to the concepts of dependability and confirmability, no peer researchers or colleagues can examine the detailed chronology of research activities and processes. Nevertheless, a continuous dialogue at every step in the process was maintained with the peer instructors at camp. These dialogues indicate that talks they have had with the participants and the observations they have made during the camps correlate with the findings in the empirical material.

4. Findings and discussion In this section, we present the core category and additional core elements of the red-zone experience. The results will be discussed in relation to the theory of self-efficacy by Bandura (1977). 4.1 The core category – incongruence between expectation and experience Most participants described experiences from camp that were identified as enhancing red-zone experiences. Such experiences were also described by some of the students from NEXS. These were experiences where, to begin with, the participants and students find the challenge in front of them unmanageable. However, they end up being able to manage the challenge. The analytical steps of the grounded-theory analysis process were used to study the many red-zone experiences and identify a core category. The category unites the coding patterns into a whole and thus contains the core of the theoretical concept obtained. Before we describe and elaborate on the core category, we present a red-zone experience. In the following we meet Margrethe, a 42-year-old woman with CP who recounted this story from the sports camp, which is a typical red-zone experience in our empirical material: That 5-meter diving board man! That is one experience I will NEVER forget. While standing up there on the platform I remember telling you that I couldn’t do it. I was sure something bad would happen. I was so afraid. Totally out in the red zone… I really had to cross a boundary; I just didn’t know how. But then we talked, and you agreed to jump with me. And then you just took my hand and said: “Let’s count out loud to three, it commits”. And when you started counting, I just thought “Oh okay – we are actually doing this”. Whenever I watch the pictures, I still feel all flabbergasted. Dangerous. Completely insane. Honestly - what am I doing? I was so 194

scared, and I remember I started crying after we had jumped, because it was so overwhelming. And then you hugged me in the water I didn’t let go, because I was completely over exited - it had just been so wild. This whole experience is linked by something completely terrifying and crazy cool. Crazy cool because I did it, I actually did it! I crossed a boundary and jumped into something terrifying, but I just knew I had to do it. What else would I be doing up there? Climbing all the way up just to climb down again. That would not make any sense. Also, I have always wanted to try it. When we study Margrethe’s description and similar accounts of red-zone experiences by other participants, we identify a conflicting process where worst-case-scenario thoughts and affections of stress and anxiety at first make it impossible for the participants to act. In self-efficacy theory, these types of thoughts, affective states, and reactions are all characteristics that describe a person who has a sense of low self-efficacy in a given domain (Bandura, 1995). Thus, people with perceived low self-efficacy tend to dwell on their personal weaknesses and all kinds of undesirable outcomes rather than focus on how to react successfully when they are faced with difficult or fear-provoking tasks (ibid.). In relation to people with CP, this sense of low self-efficacy in relation to the challenging adapted physical activities at camp can be explained as a consequence of their bodily uncertainty and selfdoubt, caused by experiences with involuntary bodily movements and difficulties in predictions of their own movements (Ritterband-Rosenbaum et al., 2011; Martiny, 2015; 2016). In relation to the students and other target groups, a sense of low self-efficacy can be caused be many other life circumstances. In the red-zone process, many of the participants end up participating despite great doubt and worries. This participation stimulates a mastery experience of great success. It is exactly this dynamic of incongruence between expectation and experience that we identified as the core category of our theoretical concept. Thus, we could define a core process in the red-zone experience: A red-zone mastery experience that has the potential to stimulate an enhancement of the self is present when there is incongruence between the participant's preconceived negative expectations of the outcome and the participant’s subsequent positive experience of the outcome. In this context, the term negative should be understood as an expected unmanageable situation. In the description by Margrethe, this is apparent in the line: I was sure something bad would happen. This expresses an expectation which stimulates emotions of great 195

worry and anxiety. In contrast, the term positive should be understood as a situation that has been experienced as manageable. In her description, Margrethe ends up taking the jump – a positive experience in the sense that nothing goes wrong. To understand why red-zone experiences in a given context can be valuable at both a situated and more general level, it is important to understand what happens to the participant after having engaged in a red-zone experience. In the story of Margrethe, the valuable development potential could be understood as a learning about jumping from the diving board. Furthermore, in some situations the learning is characterized by an autotelic nature, where the enjoyability stimulates a desire to repeat the activity. However, the valuable psychological development potential is related to what the jump represents. Thus, the potential is not only linked to the transferability of the activity, but additionally to the transferability of the experience and the story about being brave enough to act and to do something she deep down really wants to do, despite an immediate sense of anxiety and panic. In the future, this is a story Margrethe can use every time she stands in front of a challenging situation where she needs the courage to take the decision to make ‘the jump’. Most importantly, it is a confrontational experience that is incongruent with her expectations, and thereby opens the possibility for a psychosocial development process where she in interaction with the world can reconstruct and change her interpretation and story about herself and her abilities at a more general level. Thus, as stated by Bandura (1977), those who manage to persist in situations that are subjectively challenging and threatening yet relatively affordable and safe will gain an experience whereby they gain a sense of heightened self-efficacy. Furthermore, this type of corrective experience can ultimately help eliminate a person’s defensive and passive behavior (ibid.). In accordance with these points, the red-zone experiences clearly show how “People's level of motivation, affective states, and actions are based more on what they believe than on what is objectively the case.” (Bandura, 1995, s. 1). Hence, people's beliefs in their own abilities are key to determining whether they decide to participate and sustain effort in the face of adversity. However, what is interesting in relation to the red zone is that the participants acted despite their lack of belief in their abilities. Thus, in the third part of our analysis process, selective coding, it became apparent that three additional core elements must be present for a meaningful development process to take place. The three additional core elements are: 1. Meta-motivation; 2. Significant other(s); and 3. Transformative self-story.

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4.2 Meta-motivation When we were in the swimming pool and you asked me: ”Have you ever tried to jump from a chair before?” All I could think of was...uhhhmmm NO. That is totally red zone for me, and I will never do that. I was just like seriously I would never push myself into that and yet I did it anyway. I don’t know what triggered me into doing it. I just think I really wanted to, but at the same time I didn’t really have the guts to do it. I really felt unsafe, but still I really wanted to try it. (Caroline, 13 years old, wheelchair user) In the above narrative, Caroline expresses a motivational conflict. At one level, her experience is associated with lack of control and emotions of anxiety caused by perceived inefficacy in coping. In contrast to proximal goal setting, which usually causes intrinsic interest, this distal goal setting in the red zone will limit the intrinsic interest (Bandura, 1982). In addition, the emotional and physiological arousal Caroline experiences can cause amotivation, as these forms of arousal can affect a person’s sense of self-efficacy (Bandura, 1977). Thus, people with a sense of low self-efficacy tend to read their stress arousal in perceived threatening situations as an ominous sign of vulnerability and dysfunction (ibid.). However, Caroline is driven by a reflexive and motivational awareness at another level. This is a metacognitive self-consciousness (Bandura, 2001), where Caroline reflects upon herself, the correctness of her predictive and operative thinking and her emotional and physiological arousal feedback, and hereby evaluates her motivation for engaging in the activity. This motivation is intrinsic but cannot be characterized by pleasure and enjoyment. Since the empirical material shows that an immediate intrinsic motivation characterized by "I want to do it - I can do it - I dare to do it" is not present in red-zone experiences, the participant must necessarily be driven by another form of intrinsic motivation. This must be a motivation that, despite anxiety and great stress, encourages the participant to make the decision to engage with the challenge. To describe and understand this other form of motivation, we have identified a first core element, which we have termed meta-motivation. In this context, meta-motivation should be understood as a motivation that is connected to an inner conflict. This conflict on the one hand appears as a deep-felt wish to engage in the challenge, and on the other hand appears as an immediate resistance. In contrast to the immediate intrinsic motivation, the meta-motivation is characterized by "I wish I wanted to do it - I wish I could do it - I wish I would dare to do it." If neither an immediate intrinsic motivation nor a meta-motivation is present, the challenging situation in question is not necessarily connected with a positive and meaningful development

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potential. At worst, such a situation may cause a traumatic experience, which possibly will have a detrimental effect.

4.3 Significant other(s) As mentioned above, these incongruent development processes are defined by a sense of amotivation that leads to passivity and avoidance behavior – why voluntarily jump into something that one is confident will go wrong and furthermore feels uncomfortable and threatening? Such passivity causes a paradox grounded in the fact that the person involved wishes to engage (meta-motivation), but still does not engage in the process. Thus, this immunity and resistance to the process must be accommodated, as the positive effects of the red-zone experience can only emerge if the participant is bodily actively involved and thereby gains a direct confrontational and incongruent lived mastery experience. This is where the second core element – a significant other – becomes essential. A significant other can have two functions: an implicit and an explicit one.

An example of the implicit significant other (ISO) can be seen in the following: We were going sailing in those small shitty kayaks. Small tiny things that just tilt around and oh no, I sure wasn’t about to get into one. Then I saw Marianne arriving in a kayak and I know she is totally terrified of water. I might not be the big boss in this field, but Marianne, she usually goes completely crazy. But suddenly, she was in a kayak paddling around, and I was sitting at the shore thinking to myself, well if she can do it, then so can I. I actually think that was the first time I thought to myself that it shouldn’t be the physical part that was holding me back. You know, then it’s just because my head is playing tricks on me, and I don’t believe I can. (Monica, 30 years old) The situation in the above description took place at a sports camp where all the participants were adults with CP. This was a community where the participants to some extent could relate to each other as equals. As a result of this, the concept of ISO could seem similar to the concept of vicarious experiences presented by Bandura (1997), which explains that “Seeing people similar to oneself succeed by sustained effort raises observers' beliefs that they too possess the capabilities to master comparable activities to succeed” (Bandura, 1995, p. 3). Nevertheless, the concept of ISO is different from vicarious experiences on one point. Bandura states that the impact of vicarious experiences “is strongly influenced by perceived similarity to the models. (…) If people see the models as very different from themselves, their perceived self-efficacy is not much influenced by the models' behavior and the results it produces” (Bandura, 1995, p. 3-4). In 198

Monica’s description above, she is clearly affected by her peers, but ultimately, it is her observation of Marianne managing the kayaks that gives Monica the courage to engage. This courage does not arise because of similarity, but because of an asymmetric relationship in which Monica she sees herself as a more capable participant and therefore concludes that she can manage it too. This conclusion is based on the facts that Monica is 20 years younger than Marianne, and that her physical abilities are much better than those of Marianne. While Monica has an athletic body, Marianne needs a lot of support and aids to get around. In conclusion, the engagement in red-zone experiences can be influenced by observing similar peers and especially – what seem to be – less-capable peers succeed.

An example of the explicit significant other (ESO) can be seen here: I really believe that the camp can move us as it does because you guys (instructors and leaders) believe we can. And then we also begin to believe in each other. So, I really think that's what it does. It's somewhat camp-like. Well, other people can say to me, "Wow, you are good" or "Of course you can do it" but I do not believe... Or yeah, I believe them when they say so, but with you and the other campers, I can see it in them. I can see in their eyes and their body language that this is something I can do. (Monica, 30 years old) In this description, Monica highlights ‘belief’ as an important dimension of the ESO. In contrast to the participant, the ESO should perceive the challenge in front of participant in relation to the participant’s abilities as being manageable. Because of this difference in perception, where the ESO sees the potential for a successful action and outcome, the ESO can bring faith, solutions, and confidence into the process. In relation to this, Bandura (1997) writes about verbal persuasion, which implies that an enhanced self-efficacy will be achieved “if significant others express faith in one’s capabilities” (Bandura, 1997, p. 101). But as explained in Monica’s description, verbal feedback and encouragement are not enough in these situations. The ESO should in addition be someone whom the participant finds trustworthy. Such trust can be earned if the ESO is authentic, deeply engaged, and present in the experience, and has transparent competences in relation to the challenge ahead. Thus, the ESO should be able to help regulate stress, structure the environment, adapt the activity, and offer protecting aids. These competences can be achieved and developed through personal lived experiences or professional education. This implies that the ESO can be a more capable peer or a professional. Nevertheless, the ESO should not only guide, but also be able to provide a gentle ’push’ to stimulate the required action from the participant. It is important that the ’push’ does not 199

contribute to the actual move, but just ’pushes’ the participant to decide to make the move. The final choice should always be taken by the participant, to ensure an enhancing development process.

4.4 Transformative self-story And those wooden boards man, what's up with that? I did not expect to break it in the first attempt. I actually did not expect to break them at all. I was so surprised that I managed to break it with my bare hands. But I actually did. Afterwards I just stood there and thought: Oh my God what just happened? I think it's completely surreal. Totally wild. God, you must have so much strength inside you. You really must have. Well, if I can do that – I can do anything! (Margrethe, 42 years old) In the above, Margrethe describes a red-zone experience with a positive development potential. Margrethe engaged in a situation where she, against her expectations, broke a wooden board with her bare hands. The action in itself is a significant experience, but what is important in relation to the development potential is how she addresses the experience in relation to herself and her world view. This reflective transfer is essential for the meaning of the red-zone experience. However, this process can be difficult, as experiences that are incongruent with one’s sense of self tend to be reduced, forgotten, or be credited to external factors (Bandura, 1997). In contrast, experiences that are congruent with one’s sense of self are given significance and remembered. In the story by Margrethe the following passage shows how Margrethe at first tries to explain her achievement as being due to external factors rather than to her own capabilities: And then I thought: You must have done something to the wood. You've sawn through them, and then glued them together or whatever. You must have done something to fool us into thinking we are strong. In this quote, we see how Margrethe is struggling to understand her accomplishment, as it does not match her dominant story about herself. This is how we can interpret Margrethe’s description – she tries to find a story that confirms her plot, as a woman who does not have the strength to break a wooden board. This is an inexpedient interpretation for Margrethe, as the experience, despite her great performance, would not affect her sense of efficacy in any remarkable way. Fortunately, Margrethe, in collaboration with other participants and the instructors, ends up concluding that nobody has fooled her. This interpretation leads her to tell a new story:

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You must have so much strength inside you. You really must have. Well, if I can do that – I can do anything! This statement not only indicates that Margrethe interprets herself as more powerful than before the experience, she also addresses the successful experience as a door that opens up new possibilities. In relation to the development potential, we should be aware that the participant first takes selfcredit – “I did this!”, and second, the participant relates it to the world – “if I can do this, maybe I can do that”. After having described and elaborated on the core category and additional core elements, we now present an inclusive and summarizing definition and model.

4.5 Definition and models of the enhancing red-zone experience process To develop a theoretical concept of the red-zone experiences at the sports camps and the situations described by the students from NEXS, we have identified a core category, process, and the associated core elements. This allows us to present a definition and a process line for the significant red-zone experience that has the potential to stimulate and contribute to a sense of heightened self-efficacy.

Definition: The red-zone experience process An enhancing red-zone mastery experience signifies a process in which a participant is driven by a meta-motivation, and with the support of significant others, engages in a perceived unmanageable challenge. This engagement is characterized by an incongruence between the participant’s previous subjective negative expectations for the outcome, and the participant's subsequent subjective positive experience of the outcome. Finally, a self-crediting and transformative self-story that relates to more than the local experience must be present. Process line: Before A participant, driven by a meta-motivation, faces a perceived unmanageable challenge.

Under A significant other supports and believes in the participant, who despite great doubt chooses to act and complete.

After The participant has a mastery experience, takes self-credit and makes a transformative selfstory.

Figure 1. Process line

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In addition to the definition and process line, we have developed a model to make the red-zone potential more transparent and visual. The model is based on matrices grounded in the empirical material, and provides an overview of various types of experience, perceptions, outcomes, and effects. The headlines of the matrix where the different types of situations are inserted are as follows:

Perceived level of challenge

Perceived level of abilities

Interpretation of situation

Expected outcome

Experienced outcome

Potential effect on sense of self-efficacy

In the first box, the word ‘challenge’ is used, and in the second box the word ‘ability’ is used. However, the different types of challenges and abilities that appeared in the empirical material made it difficult to merge the experiences in only one matrix. Hence, two different matrices have been developed. The first matrix focus on experiences where the challenge in front of the participants led to perceptions of “I can” or “I can’t”. These challenging experiences were typically characterized by perceived complexity and exhaustion and abilities such as skills and persistence. On the other hand, the second matrix focus on experiences where the challenge in front of the participants led to perceptions of “I dare” or “I do not dare”. These challenging experiences were typically characterized by perceived risk and the ability ‘courage’.

Before presenting the matrices, a few considerations and explanations should be highlighted. First, it should be noted that it is difficult to insert human perceptions, reactions, and interpretations into a scheme. Thus, the matrices will not represent everybody in every situation. However, the matrix model gives an impression of how most people will react and develop in different situations. Second, the matrices only provide insights on processes where the participant manages the situation they face. While we are aware that failures are typically an important part of a learning process, failures are not a focus in the matrices. Finally, it should be noted that the different levels of challenges and ability in the matrices are linked to different colors, which makes it possible to develop the following color-based model. While the colors in the matrices are divided by clear borders, they should be understood as a continuous spectrum as illustrated below:

Takes no management for granted

Takes management for granted

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In the following the two matrices are presented.

Complexity and exhaustion matrix Perceived level of complexity or exhaustion

Perceived level of skills or persistence

Interpretation of situation

Expected outcome

Experienced outcome

Potential effect on sense of self-efficacy

Unmanageable

Non

Impossible

Very high

Very low

Surreal

High

Low

Ambitious

Neither too high or low Low Very low

Neither too high or low High Very high

Just right

Choked / Overwhelmed Surprised / Euphoric Proud / Happy / Relieved Satisfied

Transforms the perception of yourself Transforms the perception of yourself Extends the perception of yourself Confirmation

Unambitious Boring

Do not care Insignificant

Non Non

Non

Routine

Pre-reflexive

Know I cannot do it Believe I cannot do it Doubt if I can do it Believe I can do it I can do it Of course, I can do it Donâ€™t even question it

Absent

Non

Risk matrix Perceived level of risk

Perceived level of courage

Emotion

Expected outcome

Experienced outcome

Potential effect on sense of self-efficacy

Unmanageable

Non

Anxiety

Very high

Very low

Great worry

Choked / Overwhelmed Surprised / Euphoric / Proud

Changes the perception of yourself Changes the perception of yourself

High

Low

Nervous

Neither too high or low Low Very low

Neither too high or low High Very high

Excited

Proud / Happy / Relieved Satisfied

Extends the perception of yourself Confirmation

Enthusiastic Pleasure

Do not care Insignificant

Non Non

Non

Confident

Relaxed

Certain it will go wrong Believe it will go wrong Uncertain how it will go Expects it to go alright It goes Of course, it goes Do not even question it

Absent

Non

The different types of barriers (risk, exhaustion, and complexity) and competencies (courage, persistence, and skills) the participants have expressed constitute the axes of the model. As an overall term for the risk, exhaustion, and complexity associated with the different situations the term challenge is used, while the overall term for the individual's contribution in terms of courage, persistence, and skill is termed abilities. Below, the positive red-zone potential is illustrated. Thus, the model shows the participantsâ€™ state of perceived self-efficacy based on perceived abilities in relation to the perceived challenge ahead. 203

Furthermore, it shows the significant others’ interpretation of the participants’ abilities in relation to the challenge. The shape and axes of the model is inspired by the flow model of Csikszentmihalyi (1990), and the choice of colors refers to the many interpretations made of the theories ‘Zone of proximal development’ by Vygotsky (1978) and ‘Learning zone’ by Senninger (2000).

The circle, cross and different blue nuances in the diagram should be understood as: Perception of the participant:

= misinterpretation

Perception of a significant other:

= realistic interpretation

Perceived challenge:

Level of challenge

Complexity Exhaustion Risk

Perceived ability: Level of ability

Skills Persistence Courage

Based on the perception of the level of challenge and the level of ability, in the scenario illustrated above, the participant and the significant other make two different subjective interpretations. While the participant will have negative expectations of outcome, the significant other will have positive expectations of outcome. Since the participant in the illustrated scenario makes a misinterpretation and the significant other makes a realistic interpretation, there is a meaningful red-zone potential present. Nevertheless, as shown in our findings, it is important that the

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participant has a meta-motivation and furthermore takes self-credit and hereby creates a transformative self-story, if the red-zone potential is to be realized.

5. Conclusion With a grounded-theory analysis of the phenomenon ‘red-zone experiences’ we have demonstrated how mastery experiences and an enhancing developmental process can occur in situations characterized by great worry, anxiety or a sense of lack of abilities. The red-zone potential can be described as a psychosocial development potential with a core category defined as an incongruence between the participant’s subjective negative expectations of the outcome and the subjective positive experience of the outcome. These significant experiences are surprising and overwhelming for the participant, and may affect the participant’s self-efficacy, personal story, and view on possibilities and future actions. To establish and complete a development situation with an enhancing potential, three additional core elements must be present. First, a meta-motivation – characterized by a deep-felt wish to engage – should ensure that the participant voluntarily engages despite thoughtful, motivational, bodily, and emotional conflict and resistance. Second, a significant other must be a motivational and supportive part of the situation. Without inspiration, encouragement, and support from either an implicit or explicit significant other, the participant will not enter the situation. Finally, a transformative self-story is central. To fully embody the experience and make it influence the participant’s self-story, the participant must take self-credit and create a transformative ’I can’ or ‘I dare’ story that relates to other aspects than just the local experience. The episodes of success in the red-zone experiences in this study indicate that there might be great potential for working with challenging adapted physical activities to stimulate meaningful redzone experiences in the work with people with CP or other target groups with a sense of low selfefficacy. This is not an easy task for either the participant or the significant other. Hence these processes need focus and dedicated engagement. To fully understand the red-zone experience potential, more research in relation to other target groups in other environments should be carried out. Furthermore, clear professional guidelines for using red-zone experiences as a didactic tool should be developed, as these red-zone processes are often associated with high sensitivity and severity.

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Acknowledgements We would like to thank the Elsass Foundation and Innovation Fund for financial support. We would also like to thank Jens Bo Nielsen and Kristian Møller Moltke Martiny for great discussions and proofreading the article.

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