BILAG

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

Andersen, M.M. & Winther, H. Submitted to: Clinical Rehabilitation

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

Andersen, M.M. & Winther, H. Submitted til: Journal of Sport and Development

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

Andersen, M.M. Anmodning om publicering i en special edition i: Disability and Rehabilitation.

Studie IV

The Red Zone – 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.

Studie I

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.

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

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.

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 “Friendship, 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 itself” (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 one’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).

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 “a 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.” (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 person’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

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

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

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 – 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.

Participants Location

Camp 1 20 Elsass Foundation

Camp 2 16 Elsass Foundation

Camp 3 11 Egmont Folk Highschool

Camp 4 10 Club La Santa Table 1. The four Elsass Foundation camps included in this study

Age

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

Condition

Able to walk Able to walk Using wheelchair Able to walk

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; O’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.

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

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 “being a part of a peer community at camp”. The themes presented in the following findings section describe how the phenomenon is present for the participants.

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.

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

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

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.

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

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. (…) 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.

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

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 participants’ 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 participants’ daily lives – 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

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 other’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

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.

References

Aggerholm, K. & Moltke Martiny, K.M. (2017). Yes We Can! A Phenomenological Study of a Sports Camp for Young People with Cerebral Palsy. Adapted physical activity quarterly. 34(4): 362-381.

Aisen, M. L. et al. (2011). Cerebral Palsy: clinical care and neurological rehabilitation. Lancet Neurology, 10, 844-852.

Anaby D, Law M, Coster W, et al. (2014). The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Archives of Physical Medicine and Rehabilitation. 95: 908–17.

Andersen, M.M. (2016). Camp-håndbog: Praksis-teoretisk håndbog for fagpersoner - En aktivitetsintervention for målgrupper med udfordringer. Elsass Fonden

Ashton-Shaeffer C, Gibson H, Autry C. (2001). Meaning of Sport to Adults with Physical Disabilities: A Disability Sport Camp Experience. Sociology of Sport Journal. 18:95-114.

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological review, 84(2), 191-215.

Bandura, A. (1982). Self-Efficacy Mechanism in Human Agency. American Psychologist. 37(2), p. 122-147

Bandura, A. (1995). Self-efficacy in changing societies. Cambridge University Press.

Bandura, A. (1997). Self-efficacy, the Exercise of control, W. H. Freeman and Company New York.

Barnes, M. P. (2001). An overview of the clinical management of spasticity. In Barnes M. P. & Johnson G.R. (eds.), Upper motor neuron syndrome and spasticity: Clinical management and neurophysiology. Cambridge: Cambridge University Press, 1 – 11.

Borge, A. I. H. (2010). Resiliens: Risiko og sunn utvikling. (2) Gyldendal Norsk Forlag.

Braun V. & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology. 3:77-101.

Colver A, Thyen U, Arnaud C, et al. (2012). Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Archives of Physical Medicine and Rehabilitation. 93: 2154–64.

Dawson, S., Liddicoat, K. (2009). "Camp Gives Me Hope": Exploring the Therapeutic Use of Community for Adults with Cerebral Palsy. Therapeutic Recreation Journal, 43(4): 9-24

Deci, E.L. & Ryan, R.M. (1985). Intrinsic motivation and self-determination in human behaviour. New York: Plenum.

Devine, M.A., Piatt, J. & Dawson, S. L. (2015). The Role of a Disability-Specific Camp in Promoting Social Acceptance and Quality of Life for Youth With Hearing Impairments. Therapeutic Recreation Journal 49(4) p. 293–309

Devine, M.A. & Dawson, S. (2010). The Effect of a Residential Camp Experience on Self Esteem and Social Acceptance of Youth with Craniofacial Differences. Therapeutic Recreation Journal. 44(2) p. 105–120

Garmezy, N., Masten, A. S., & Tellegen, A. (1984). The study of stress and competence in children: A building block for developmental psychopathology. Child Development, 55: 97-111.

Giorgi, A. & Giorgi, B. (2003). The descriptive phenomenological psychological method. I: Camic, P., Rhodes, J. & Yardley, L. (red.) Qualitative research in psychology – Expanding perspectives in methodology and design. p. 275-297. Washington, Dc: American Psychological Association Press.

Goffman, E. (2009). Stigma: Om afvigerens sociale identitet. København: Gyldendal.

Goodwin D. L. & Staples K. (2005). The Meaning of Summer Camp Experiences to Youths with Disabilities. Adapted Physical Activity Quarterly. 22(2):160-178.

Goodwin, D.L., & Lieberman, L.J. (2011). Connecting Through Summer Camp: Youth with Visual Impairments Find a Sense of Community. Adapted Physical Activity Quarterly, 28(1), 40-55.

Hidecker, M.J.C., Paneth, N., Rosenbaum, P.L., Kent, R.D., Lillie, J., Eulenberg, J.B., Chester, K., Johnson, B., Michalsen, L., Evatt, M., & Taylor, K. (2011). Developing and validating the Communication Function Classification System (CFCS) for individuals with cerebral palsy, Developmental Medicine and Child Neurology. 53(8), 704-710.

ICF (The International Classification of Functioning) (2001). Disability and Health. Geneva, World Health Organization.

Jacobsen, B., Tanggaard, L. & Brinkmann, S. (2015). Fænomenologi. I. Brinkmanm, S. & Tanggaard, L. (red.) Kvalitative metoder en grundbog. 2. udgave. Hans Reitzels Forlag.

Kvale, S. & Brinkmann, S. (2009). InterView. Introduktion til et håndværk. 2. udgave. Hans Reitzels Forlag.

Martiny, K. M. (2015). Embodying Investigations of Cerebral Palsy: a Case of Open Cognitive Science. Doctoral Dissertation. University of Copenhagen, Copenhagen.

Maxwell G, Alves I, Granlund M. (2012). Participation and environmental aspects in education and the ICF and the ICF-CY: findings from a systematic literature review. Dev Neurorehabil. 15: 63–78.

McAvoy, L., Holman, T. Goldenberg, M. & Klenosky (2006). Wilderness and Persons with Disabilities Transferring the Benefits to Everyday Life. International Journal of Wilderness. 12(2): 23-35.

Michalski, J. H., Mishna, F., Worthington, C., & Cummings, R. (2003). A multi-method impact evaluation of a therapeutic summer camp program. Child and Adolescent Social Work Journal, 20(1), 53-76.

Miles, M.B. & Hubert A.M. (1994). Qualitative data analysis – An expanded sourcebook. London: Sage Publications.

Novak, I. et al. (2013). A systematic review of interventions for children with cerebral palsy: state of the evidence, Developmental Medicine and Child Neurology. 55: 885–910.

Nyquist A., Jahnsen R.B., Moser T. & Ullenhag A. (2019). The coolest I know - a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program. Disability Rehabilitation. P. 1-9.

O’Leary, V. E. (1998). Strength in the face of adversity: Individual and social thriving. Journal of Social Issues, 54, 425-446.

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.

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.”

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

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

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

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 participants’ 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

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 (Sandström, 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

camp was designed to stimulate resilience processes (Luthar, 2003; Rutter, 2008; Ungar & Liebenberg, 2013). More specifically, the sports camp aimed to enhance the participants’ 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 participants’ 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,

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; Røe 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

physically active person, are a greater indicator of physical activity participation for people with disabilities, than environmental factors or factors related to functioning (Saebu & Sørensen, 2011; Martin, 2006; Sørensen, 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

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.

The four sports camps involved in this study can be seen in the table below:

Participants Location

Camp 1 20 Elsass Foundation Camp 2 16 Elsass Foundation Camp 3 11 Egmont Folk Highschool Camp 4 10 Club La Santa Table 1. The four Elsass Foundation camps included in this study

Age

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

Condition

Able to walk Able to walk Using wheelchair Able to walk

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.

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 participants’ 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

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 participants’ 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.

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.”

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?".

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 not… 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 “walking” 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,

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.

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.

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 (Sandström, 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

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 & Sørensen (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 “higher 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.” (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

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

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.

References

Aggerholm, K. & Martiny, K.M.M. (2017). Yes We Can! A Phenomenological Study of a Sports Camp for Young People with Cerebral Palsy. Adapted physical activity quarterly. 34(4): 362-381.

Andersen, M.M. (2016). Camp-håndbog: Praksis-teoretisk håndbog for fagpersoner - En aktivitetsintervention for målgrupper med udfordringer. Elsass Fonden

Ashton-Shaeffer C, Gibson H, Autry C. (2001). Meaning of Sport to Adults with Physical Disabilities: A Disability Sport Camp Experience. Sociology of Sport Journal. 18:95-114.

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological review, 84(2), 191-215.

Bandura, A. (1994). Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behavior (Vol. 4, pp. 71-81). New York: Academic Press. (Reprinted in H. Friedman [Ed.], Encyclopedia of mental health. San Diego: Academic Press, 1998).

Bandura, A. (1997). Self-efficacy, the Exercise of control, W. H. Freeman and Company New York.

Borge, A. I. H. (2010). Resiliens: Risiko og sunn utvikling. (2) Gyldendal Norsk Forlag.

Bottcher, L. (2010). Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child Neuropsychology, 16(3): 209-228.

Braun V. & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology. 3:77-101.

Brinkmann, S. & Tanggaard, L. (2015). Kvalitative metoder. En grundbog. 2. udgave. Hans Reitzels Forlag.

Brunton, L. & Bartlett, D. (2013). The bodily experience of cerebral palsy: a journey to selfawareness. Disability & Rehabilitation. 35: 1981–1990.

Dahan-Oliel, N., Shikako-Thomas, K. & Majnemer, A. (2011). Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis of the literature.

Damiano, D.L. (2006). Activity, Activity, Activity: Rethinking Our Physical Therapy Approach to Cerebral Palsy. Physical Therapy 86 (11).

Dawson, S., Liddicoat, K. (2009). "Camp Gives Me Hope": Exploring the Therapeutic Use of Community for Adults with Cerebral Palsy. Therapeutic Recreation Journal, 43(4): 9-24

Devine, M.A., Piatt, J. & Dawson, S. L. (2015). The Role of a Disability-Specific Camp in Promoting Social Acceptance and Quality of Life for Youth With Hearing Impairments. Therapeutic Recreation Journal. 49(4): 293–309

Devine, M.A. & Dawson, S. (2010). The Effect of a Residential Camp Experience on Self Esteem and Social Acceptance of Youth with Craniofacial Differences. Therapeutic Recreation Journal. 44(2): 105–120

Ewert, A., McCormick, B., & Voight, A. (1999). Outdoor experiential therapy: Introduction and overview. 28th Annual Midwest Symposium on Therapeutic Recreation. St. Louis, MO.

Ewert, A., McCormick, B., & Voight, A. (2001). Outdoor experiential therapies: Implications for TR practice. Therapeutic Recreation Journal, 35(2), 107-122

Gallagher S. (2005) How the body shapes the mind. New York: Oxford University Press.

Garmezy, N., Masten, A. S., & Tellegen, A. (1984). The study of stress and competence in children: A building block for developmental psychopathology. Child Development, 55: 97-111.

Giorgi, A. & Giorgi, B. (2003). The descriptive phenomenological psychological method. I: Camic, P., Rhodes, J. & Yardley, L. (red.) Qualitative research in psychology – Expanding perspectives in methodology and design. p. 275-297. Washington, Dc: American Psychological Association Press.

Goodwin D. L. & Staples K. (2005). The Meaning of Summer Camp Experiences to Youths with Disabilities. Adapted Physical Activity Quarterly. 22(2):160-178.

Henriksen, K., Hansen, J. & Hansen, M. (2007). Gyldendals Idrætspsykologi. Nordisk Forlag A/S, København.

Herbert, J.T., (1996). Use of adventure-based counseling programs for persons with disabilities. Journal of Rehabilitation.

Hillman, C.H., Pontifex, M.B., Castelli, D.M., Khan, N.A., Raine, L.B., Scudder, M.R., Drollette, E.S., Moore, R.D., Wu, CT. & Kamijo, K. (2014). Effects of the FITKids randomized controlled trial on executive control and brain function. Pediatrics. 134: 1063-1071.

Jacobsen, B., Tanggaard, L. & Brinkmann, S. (2015). Fænomenologi. I. Brinkmanm, S. & Tanggaard, L. (red.) Kvalitative metoder en grundbog. 2. udgave. Hans Reitzels Forlag.

Kissow, A.M. (2006). Rehabilitering – et pædagogisk projekt. In: Kissow, A.M. & Therkildsen, B., Kroppen som deltager – idræt og bevægelse i rehabiliteringen. Handicapidrættens Videnscenter.

Kissow, A.M. & Singhammer, J. (2012). Participation in physical activity and everyday life of people with disabilities. European Journal of Adapted Physical Activity. 5(2), 65-81

Kitago, T. & Krakauer, J.W. (2013). Motor learning principles for neurorehabilitation. Handbook of clinical neurology. 110: 93-103

Kramer, A.F. & Erickson, K.I. (2007). Effects of physical activity on cognition, well-being, and brain: human interventions. Alzheimers Dement. 3: pp. 45-S51.

Kvale, S. & Brinkmann, S. (2009). InterView. Introduktion til et håndværk. 2. udgave. Hans Reitzels Forlag.

Lorentzen, J. & Nielsen, J.B. (2012). Den foranderlige hjerne. Neurorehabilitering i praksis. Gads Forlag.

Luthar, S. S. (2003). Resilience and vulnerability: Adaptation in the Context of Childhood Adversities. New York: Cambridge University Press.

Martin J.J. (2006). Psychosocial aspects of youth disability sport. Adapted Physical Activity Quarterly. 23: 65–77.

Martiny, K. M. M. (2015). Embodying Investigations of Cerebral Palsy: a Case of Open Cognitive Science. Doctoral Dissertation. University of Copenhagen, Copenhagen.

McAvoy, L., Holman, T. Goldenberg, M. & Klenosky (2006). Wilderness and Persons with Disabilities Transferring the Benefits to Everyday Life. International Journal of Wilderness. 12(2): 23-35.

McLaughlin, J. & Coleman-Fountain, E. (2014). The unfinished body: the medical and social reshaping of disabled young bodies. Social Science & Medicine, 120, 76–84.

Michelsen, S.I. (2006). Social consequences of cerebral palsy. National Institute of Public Health Copenhagen.

Michelsen, S.I., Laursen, B., Flachs, E.M., Voss, I., Due, P. & Uldall, P. (2017). Voksne med cerebral parese I Danmark. Statens Institut for Folkesundhed, SDU.

Michalski, J. H., Mishna, F., Worthington, C., & Cummings, R. (2003). A multi-method impact evaluation of a therapeutic summer camp program. Child and Adolescent Social Work Journal, 20(1), 53-76.

Nsenga, A.L., Shephard, R.J. & Ahmaidi, S. (2013). Aerobic training in children with cerebral palsy. International Journal of Sports Medicine. 34:533–537.

Nielsen, J.B., Willerslev-Olsen, M., Christiansen, L., Lundbye-Jensen, J. & Lorentzen, J. (2015) Science-based neurorehabilitation: recommendations for neurorehabilitation from basic science. Journal of Motor Behavior. 47(1): 7-17.

Novak, I., Mcintyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, SA. & Goldsmith, S. (2013). A systematic review of interventions for children with cerebral palsy: state of the evidence, Developmental Medicine and Child Neurology. 55: 885–910.

Nupo, R.J. (2011) Neural bases of recovery after brain injury. Journal of Communication Disorders. 44(5):515-20

Normann, T., Sandvin, J. T. & Thommesen, H. (2004). A Holistic approach to rehabilitation. Oslo. Norway. Kommuneforlaget.

Nyquist A., Jahnsen R.B., Moser T. & Ullenhag A. (2019). The coolest I know - a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program. Disability Rehabilitation. P. 1-9.

O’Leary, V. E. (1998). Strength in the face of adversity: Individual and social thriving. Journal of Social Issues, 54, 425-446.

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.

Rosenbaum, P. (2009). A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. Developmenttal Medicine & Child Neurology. 51(2).

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

Rutter, M. (2008). Developing concepts in developmental psychopathology. Developmental Psychopathology and wellness: Genetic and Environmental Influences, 3-22.

Røe C., Preede, L., Dalen, H., Bautz-Holter, Nyquist, A., Sandvik, L. & Sæbu, M. (2018) Does adapted physical activity-based rehabilitation improve mental and physical functioning? A randomized trial. European Journal of Physical and Rehabilitation Medicine. 54(1) :419-27.

Saebu, M.& Sørensen, M. (2011). Factors associated with physical activity among young adults with a disability Scandinavian Journal of Medicine & Science in Sports. 21: 730-738

Sandström, K. (2007). “The lived body – experiences from adults with cerebral palsy.” Clinical Rehabilitation, 21, 432–441.

Sherrill, C., & DePauw, K. (1997). Adapted physical activity and education. In J.D. Massengale & R.A. Swanson (Eds.), The history of exercise and sport science (pp. 39-108). Champaign, IL: Human Kinetics

Sherill C. (2004) Adapted physical activity, recreation and sport; crossdisciplinay and life span. 6th ed. Boston: McGraw-Hill

Shikako-Thomas, K., Majnemer, A., Law, M. & Lach, L. (2008). Determinants of Participation in Leisure Activities in Children and Youth with Cerebral Palsy: Systematic Review. Physical & Occupational Therapy In Pediatrics. Informa.

Shikako-Thomas, K., Dahan-Oliel, N., Shevell, M., Law, M., Birnbaum, R., Rosenbaum, P., Poulin, C. and Majnemer, A. (2012). Play and Be Happy? Leisure Participation and Quality of Life in School-Aged Children with Cerebral Palsy. International Journal of Pediatrics.

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

Sutthibuta, U. (2014). Systematic Review of Aquatic Exercise Programming for Children and Adolescents with Cerebral Palsy. International Journal of Child Development and Mental Health. (1):49-66

Standal, Ø.F., Kissow, A.-M., & Morisbak, I. (2007). Adapted Physical Activity and Rehabilitation: A Scandinavian Perspective. Sobama Journal, 12(1), 125–129.

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.

Sørensen M. (2006). Motivation for physical activity of psychiatric patients when physical activity was offered as part of treatment. Scandinavian Journal of Medicine & Science in Sports. 16: 391–398.

Ungar, M. & Liebenberg, L. (2013). Contextual factors related to school engagement and resilience: A study of Canadian youth with complex needs. Journal of Child and youth Development.

Unnithan VB, Katsimanis G, Evangelinou C, Kosmas C, Kandrali I, Kellis E. (2007). Effect of strength and aerobic training in children with cerebral palsy. Medicine & Science in Sports & Exercise. 39:1902–1909.

van der Slot, W.M.A., Nieuwenhuijsen, C., van den Berg-Emons, R.J.G., Wensink-Boonstra, A.E., Stam, H.J. & Roebroeck, M.E. (2010). Participation and health-related quality of life in adults spastic bilateral cerebral palsy and the role of self-efficacy. Journal of Rehabilitation Medicin. 42: p. 528–535

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.

Verschuren O, Ketelaar M, Gorter JW, Helders PJ, Uiterwaal CS, Takken T. (2007). Exercise training program in children and adolescents with cerebral palsy: a randomized controlled trial. Archives of pediatrics & adolescent medicine. 161:1075–1081.

Verschuren O, Ketelaar M, Takken T, Helders PJM, Gorter JW (2008). Exercise programs for children with cerebral palsy: a systematic review of the literature. American Journal of Physical Medicine & Rehabilitation. 87:404–417.

Verschuren, O. et al. (2016). Exercise and Physical Activity Recommendations for People with Cerebral Palsy. Dev Med Child Neurol. 58(8): 798–808.

Wang, H. & Yan, Q. (2018). A review of the treatment of cerebral palsy in children. TMR NonDrug Therapy. 1(4): 151-158.

Studie III

“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.”

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

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 participants’ 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

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

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 Fonden’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 participants’ 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.

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,

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.

Participants (n) Location

Camp 1 20 Elsass Foundation Camp 2 16 Elsass Foundation Camp 3 11 Egmont Folk Highschool Camp 4 10 Club La Santa Table 1. The four Elsass sports camps for people with CP included in this study.

Age

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

Condition

Able to walk Able to walk Using wheelchair Able to walk

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

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

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,

kayaking or jumping from a diving board in the swimming pool, which aim to challenge the participants’ 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 – 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

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 participants’ 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 – illustrative coaching cards that showed many different kinds of situation, emotions and symbols. The cards could be used as metaphors for the participants’ 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

Figure 1: Cards representing the camp-effect another (Miles & Hubert, 1994). Figure 1 shows the cards chosen by one of the participants during an interview.

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; narratives; and (4) Activity participation. (3) Stories and personal

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

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:

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:

“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.

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.”

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:

“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’” .

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

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.

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):

“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

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; Michalskiet 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

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; Baksjøberget 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 participants’ 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 participants’ 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

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)

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 – 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 – 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 participants’ 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.

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.

References

Adair B, Ullenhag A, Keen D, Granlund M, Imms C. The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review. Dev Med Child Neurol 2015; 57: 1093–104.

Anaby D, Law M, Coster W, et al. (2014). The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Arch Phys Med Rehabil. 95: 908–17.

Aggerholm, K. & Martiny, K.M.M. (2017). Yes We Can! A Phenomenological Study of a Sports Camp for Young People with Cerebral Palsy. Adapted physical activity quarterly. 34(4) 362-381.

Andersen, M.M. (2016). Camp-håndbog: Praksis-teoretisk håndbog for fagpersoner - En aktivitetsintervention for målgrupper med udfordringer. Elsass Fonden

Anderson, L., Schleien, S., McAvoy, L., Lais, G., & Seligmann, D. (1997). Creating positive change through an integrated outdoor adventure program. Therapeutic Recreation Journal, 31(4), 214-229.

Ashton-Shaeffer C, Gibson H, Autry C. (2001). Meaning of Sport to Adults with Physical Disabilities: A Disability Sport Camp Experience. Sociology of Sport Journal. 18:95-114.

Barnes M.P. (2001). “An overview of the clinical management of spasticity.” In Barnes M. P. & Johnson G. R. (eds.), Upper motor neuron syndrome and spasticity: Clinical management and neurophysiology. Cambridge: Cambridge University Press, 1 – 11.

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological review, 84(2), 191-215.

Baksjøberget, P.E., Nyquist, A., Moser, T. & Jahnsen, R. (2017). Having Fun and Staying Active! Children with Disabilities and Participation in Physical Activity: A Follow-Up Study. Physical & Occupational Therapy In Pediatrics. 37(4): 347-358

Brannan, S. et al. (1997). The National Camp Evaluation Project: A National Study on the Effects of Specialized Camps. Camping Magazine, vol 70(1) p. 28-31

Borge, A.I.H. (2010). Resiliens: Risiko og sunn utvikling. (2) Gyldendal Norsk Forlag.

Braun V. & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology. 3:77-101.

Bugge, A. et al. (2015). Forsøg med læring I bevægelse. Institut for Idræt og Biomekanik, Syddansk Universitet.

Colver A, Thyen U, Arnaud C, et al. (2012). Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a crosssectional multicenter European study. Arch Phys Med Rehabil. 93: 2154–64.

Damiano, D.L. (2006). Activity, Activity, Activity: Rethinking Our Physical Therapy Approach to Cerebral Palsy. Physical Therapy 86 (11).

Dayan E. & Cohen L.G. (2011). Neuroplasticity subserving motor skill learning. Neuron. Nov 3;72(3):443‑54.

Dawson, S. & Liddicoat, K. (2009). Camp Gives Me Hope": Exploring the Therapeutic Use of Community for Adults with Cerebral Palsy. Therapeutic Recreation Journal; 43(3), p. 9-24

Devine, M.A. & Dawson, S. (2010). The Effect of a Residential Camp Experience on Self Esteem and Social Acceptance of Youth with Craniofacial Differences. Therapeutic Recreation Journal. 44(2) p. 105–120

Ewert, A., McCormick, B., & Voight, A. (1999). Outdoor experiential therapy: Introduction and overview. 28th Annual Midwest Symposium on Therapeutic Recreation. St. Louis, MO.

Ewert, A., McCormick, B., & Voight, A. (2001). Outdoor experiential therapies: Implications for TR practice. Therapeutic Recreation Journal, 35(2), 107-122.

Garmezy, N., Masten, A.S., & Tellegen, A. (1984). The study of stress and competence in children: A building block for developmental psychopathology. Child Development, 55: 97-111.

Giorgi, A. & Giorgi, B. (2003). The descriptive phenomenological psychological method. I: Camic, P., Rhodes, J. & Yardley, L. (red.) Qualitative research in psychology – Expanding perspectives in methodology and design. p. 275-297. Washington, Dc: American Psychological Association Press.

Goodwin D. L. & Staples K. (2005). The Meaning of Summer Camp Experiences to Youths with Disabilities. Adapted Physical Activity Quarterly. 22(2):160-178.

Goodwin, D.L., & Lieberman, L.J. (2011). Connecting Through Summer Camp: Youth with Visual Impairments Find a Sense of Community. Adapted Physical Activity Quarterly, 28(1), 40-55.

Henderson, K. A., Bialeschki, D. & James, P. A. (2007). Overview of Camp Research. Child and Adolescent Psychiatric Clinics of North America. 16(4): 755-767.

Herbert, J.T. (1996). Use of adventure-based counseling programs for persons with disabilities. Journal of Rehabilitation. 62(4): 3-9.

Hillman, C.H. et al. (2014). Effects of the FITKids randomized controlled trial on executive control and brain function. Pediatrics. 134: pp. 1063-1071.

Hidecker, M.J.C., Paneth, N., Rosenbaum, P.L., Kent, R.D., Lillie, J., Eulenberg, J.B., Chester, K., Johnson, B., Michalsen, L., Evatt, M., & Taylor, K. (2011). Developing and validating the Communication Function Classification System (CFCS) for individuals with cerebral palsy, Developmental Medicine and Child Neurology. 53(8), 704-710.

ICF (The International Classification of Functioning) (2001). Disability and Health. Geneva, World Health Organization.

Imms C, Adair B, Keen D, Ullenhag A, Rosenbaum P, Granlund M. (2016). ‘Participation’: a systematic review of language, definitions and constructs used in intervention research with children with disabilities. Developmental Medicine and Child Neurology. 58: 29–38.

Imms, C., Granlund, M., Wilson, P. H., Steenbergen, B., Rosenbaum, P. L. & Gordon, A. M. (2017). Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine and Child Neurology. 59:16-25

Jacobsen, B., Brinkmann, S. & Tanggaard, L. (2015). Fænomenologi. I: Brinkmann, S. & Tanggaard, L., Kvalitative metoder – en grundbog. p. 217-240. Hans Reitzels Forlag.

Kramer, A.F. & Erickson, K.I. (2007). Effects of physical activity on cognition, well-being, and brain: human interventions. Alzheimers Dement. 3: pp. 45-S51.

Kvale, S. & Brinkmann, S. (2009). InterView. Introduktion til et håndværk. 2. udgave. Hans Reitzels Forlag.

Lorentzen, J. & Nielsen, J.B. (2012). Den foranderlige hjerne. Neurorehabilitering i praksis. Gads Forlag.

Luthar, S.S. (2003). Resilience and vulnerability: Adaptation in the Context of Childhood Adversities. New York: Cambridge University Press.

Martin J.J. (2006). Psychosocial aspects of youth disability sport. Adapted Physical Activity Quarterly. 23: 65–77.

Martiny, K.M.M. (2015). Embodying Investigations of Cerebral Palsy: a Case of Open Cognitive Science. Doctoral Dissertation. University of Copenhagen, Copenhagen.

Masten, A.S. (2001). Ordinary Magic: Resilience processes in development. American Psychologist, 56 (3), 227.

Maxwell G, Alves I, Granlund M. (2012). Participation and environmental aspects in education and the ICF and the ICF-CY: findings from a systematic literature review. Dev Neurorehabil. 15: 63–78.

McArdle, W.D. (2015). Exercise Physiology - Nutrition, Energy, and Human Performance. Wolters Kluwer Health/Lippincott Williams & Wilkins. Philadelphia.

McAvoy, L., Holman, T. Goldenberg, M. & Klenosky (2006). Wilderness and Persons with Disabilities Transferring the Benefits to Everyday Life. International Journal of Wilderness. 12(2): 23-35.

Merleau-Ponty, M. (1962/2002). The Phenomenology of Perception. Oversat af Bjørn Nake. London: Routledge and Keagan Paul.

Michalsik, L. & Bangsbo, J. (2002). Aerob og anaerob træning. Dansk Idræts-Forbund.

Michalski, J. H., Mishna, F., Worthington, C., & Cummings, R. (2003). A multi-method impact evaluation of a therapeutic summer camp program. Child and Adolescent Social Work Journal, 20(1), 53-76.

Michelsen, S.I. et al. (2014). European study of frequency of participation of adolescents with and without cerebral palsy. European Journal of Paediatric Neurology. 18: 282-294.

Michelsen, S.I., Laursen, B., Flachs, E.M., Voss, I., Due, P. & Uldall, P. (2017). Voksne med cerebral parese I Danmark. Statens Institut for Folkesundhed, SDU.

Miles, M.B. & Hubert A.M. (1994). Qualitative data analysis – An expanded sourcebook. London: Sage Publications.

Novak, I., Mcintyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, SA. & Goldsmith, S. (2013). A systematic review of interventions for children with cerebral palsy: state of the evidence, Developmental Medicine and Child Neurology. 55: 885–910.

Nyquist A., Jahnsen R.B., Moser T. & Ullenhag A. (2019). The coolest I know - a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program. Disability Rehabilitation. P. 1-9.

O’Leary, V.E. (1998). Strength in the face of adversity: Individual and social thriving. Journal of Social Issues, 54: 425-446.

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.

Panicucci, J. (2007). Cornerstones of Adventure Education. In: Prouty, D., Panicucci, J. & Collinson, R. Adventure Education: Theory and Applications. Human Kinetics.

Peitersen, B. (2008). Leg. In Rønholt, H. & Peitersen, B. (2008) Idrætsundervisning – En grundbog i idrætsdidaktik. København: Museum Tusculanum.

Pirpiris, M., Gates, P.E., McCarthy, J.J. et al. (2006). Function and well-being in ambulatory children with cerebral palsy. J Pediatr Orthop, 26: 119–24.

Preede L. et al. (2015). One-year trajectories of mental and physical functioning during and after rehabilitation among individuals with disabilities. Health and quality of life outcomes. 13:135.

Ramsing, R. (2007). Organized camping: A historical perspective. Child and Adolcent Psychiatric Clinics of North America, 16: 751-754.

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.

Rutter, M. (1996). Transitions and turning points in developmental psychopathology: As applied to the age span between childhood and mid-adulthood. International Journal of Behavioral Development. 19(3): 603-626.

Rutter, M. (2008). Developing concepts in developmental psychopathology. Developmental Psychopathology and wellness: Genetic and Environmental Influences, 3-22.

Rønholt, H. (2008). Handlekompetence som dannelsesideal. In Rønholt, H. & Peitersen, B. (2008) Idrætsundervisning – En grundbog i idrætsdidaktik. København: Museum Tusculanum.

Saebu, M.& Sørensen, M. (2011). Factors associated with physical activity among young adults with a disability Scandinavian Journal of Medicine & Science in Sports. 21: 730-738

Sandström, K. (2007). The lived body – experiences from adults with cerebral palsy. Clinical Rehabilitation, 21, 432–441.

Sendak, M. D., Schilstra, C., Tye, E., Brotkin, S., & Maslow, G. (2018). Positive youth development at camps for youth with chronic illness: A systematic review of the literature. Journal of Youth Development, 13(1-2)

Shelly, A., Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Boyd, R., Reid, S. & Graham, H.K. (2008). The relationship between quality of life and functioning for children with cerebral palsy. Developmental Medicine & Child Neurology 50: 199–203

Sherill C. (2004) Adapted physical activity, recreation and sport; crossdisciplinay and life span. 6th ed. Boston: McGraw-Hill

Shikako-Thomas, K et. al. (2008). Determinants of Participation in Leisure Activities in Children and Youth with Cerebral Palsy: Systematic Review. Physical & Occupational Therapy In Pediatrics. Informa.

Smith, B. & Sparkes, A.C. (2006). Narrative inquiry in psychology: exploring the tensions within, Qualitative Research in Psychology, 3(3): 169-192.

Stelter, R. (2012). Tredje generations coaching – en guide til narrativ-samskabende teori og praksis. Dansk Psykologisk Forlag.

Sørensen M. (2006). Motivation for physical activity of psychiatric patients when physical activity was offered as part of treatment. Scandinavian Journal of Medicine & Science in Sports. 16: 391–398.

Ungar, M. & Liebenberg, L. (2013). Contextual factors related to school engagement and resilience: A study of Canadian youth with complex needs. Journal of Child and youth Development.

van der Slot, W.M.A., Nieuwenhuijsen, C., van den Berg-Emons, R.J.G., Wensink-Boonstra, A.E., Stam, H.J. & Roebroeck, M.E. (2010). Participation and health-related quality of life in adults spastic bilateral cerebral palsy and the role of self-efficacy. Journal of Rehabilitation Medicin. 42: p. 528–535

Van Manen, M. (1997). Researching Lived Experiences: Human Science for Action Sensitive Pedagogy. ON: The Althouse Press. London.

van Manen, M. (2016). Phenomenology of Practise. Meaning- Giving Methods in Phenomenological Research and Writing. London and New York. Routledge.

Wenger, E. (2004). Praksisfællesskaber. Læring, mening og identitet. København: Hans Reitzels Forlag.

Wendelborg, C. & Ytterhus, B. (2009). Sosialt samvær og deltakelse med jevnaldrende i oppveksten: barn med funksjonsnedsettelser i Norge. In: Tøssebro J, editor.

Winther, H. (2008). Body Contact and Body Language: Moments of Personal Development and Social and Cultural Learning Processes in Movement Psychology and Education. Forum Qualitative Social Research, 9(2), Art 63.

Wright F, Rosenbaum PL, Goldsmith CH, Law M, Fehlings DL. How do changes in body functions and structures, activity and participation relate in children with cerebral palsy? Dev Med Child Neurol 2008; 50: 283–89.

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 couldn’t do it. I was sure something bad would happen. I was so afraid. Totally out in the red zone.

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

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

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

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;

development Adapted physical activity, Cerebral palsy; Psychosocial

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.

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

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 self-

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

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.

Participants

Camp 1 20 people with CP

Camp 2 16 people with CP

Camp 3 11 people with CP

Camp 4 10 people with CP Table 1. The four camps involved

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

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;

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 an 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 to 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; Nagbøl, 2013). The choice of scenic descriptions – as opposed to classical observational notes – 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

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

categories at the level of properties and dimensions’ (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 learner’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

Table 2 Matrix of subcategories Reaction, thoughts, emotions and bodily responses before and during Experienced outcome Reaction, thoughts, emotions and bodily responses after Meaning of experience

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 participants’ 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

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

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

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

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.

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

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

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

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:

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.

Figure 1. Process line

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.

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

In the following the two matrices are presented.

Complexity and exhaustion matrix

Perceived level of complexity or exhaustion

Unmanageable

Perceived level of skills or persistence Non

Interpretation of situation

Impossible

Very high

High

Neither too high or low Low Very low

Non Very low

Low

Neither too high or low High Very high

Routine Surreal

Ambitious

Just right

Unambitious Boring

Pre-reflexive

Expected outcome Experienced outcome Potential effect on sense of self-efficacy

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 Don’t even question it

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

Do not care Insignificant

Absent

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

Non Non

Non

Risk matrix

Perceived level of risk

Unmanageable

Very high

High

Neither too high or low Low Very low

Non

Perceived level of courage Non

Very low

Low

Neither too high or low High Very high

Confident

Emotion

Anxiety

Great worry

Nervous

Excited

Enthusiastic Pleasure

Relaxed

Expected outcome

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

Experienced outcome

Choked / Overwhelmed Surprised / Euphoric / Proud

Proud / Happy / Relieved Satisfied

Do not care Insignificant

Absent

Potential effect on sense of self-efficacy

Changes the perception of yourself Changes the perception of yourself

Extends the perception of yourself Confirmation

Non Non

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 participants’ state of perceived self-efficacy based on perceived abilities in relation to the perceived challenge ahead.

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: Complexity Exhaustion Risk

Level of challenge

Level of ability Perceived 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

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.

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.

References

Allen-Collinson, J. (2018). Breathing in life: phenomenological perspectives on sport and exercise. In: B. Smith and A. C. Sparkes, eds., Routledge International Handbook of Qualitative Research in Sport and Exercise. New York: Routledge, pp. 11-24.

Andersen, M.M. (2016). Camp-håndbog: Praksis-teoretisk håndbog for fagpersoner - En aktivitetsintervention for målgrupper med udfordringer. Elsass Fonden

Andersen, M.M. & Winther, H. (submitted). Moved by Movement - A phenomenological study of how young and adults with cerebral palsy experience participating in challenging movement activities at a sports camp.

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological review, 84(2), 191-215.

Bandura, A. (1982). Self-Efficacy Machanism in Human Agency. American Psyhologist. 37 (2): 122-147.

Bandura, A. (1995). Self-efficacy in changing societies. Cambridge University Press.

Bandura, A. (1997). Self-efficacy: The exercise of control, New York: Freeman.

Bax, M. et al. (2005). Proposed definition and classification of cerebral palsy. In: Developmental Medicine & Child Neurology, 47: 571–6.

Brunton, L. & Bartlett, D. (2013). The bodily experience of cerebral palsy: a journey to selfawareness. Disability & Rehabilitation. 35: 1981–1990.

Csikszentmihalyi, M. (1975). Beyond boredom and anxiety. San Francisco, CA: Jersey-Boss

Csikszentmihalyi, M. (1997). Finding Flow. The Psychology of Engagement with Everyday Life. New York, NY: Basic Books

Giorgi, A. & Giorgi, B. (2003). The descriptive phenomenological psychological method. I: Camic, P., Rhodes, J. & Yardley, L. (red.) Qualitative research in psychology – Expanding perspectives in methodology and design. p. 275-297. Washington, Dc: American Psychological Association Press.

Kristensen, S. & Krogstrup, H.K. (1999). Deltagende observation. Introduktion til en forskningsmetodik. Hans Reitzels Forlag

Kvale, S. & Brinkmann, S. (2009). InterView. Introduktion til et håndværk. 2. udgave. Hans Reitzels Forlag

Luthar, S.S. (2003). Resilience and Vulnerability: Adaptation in the Context of Childhood Adversities. New York: Cambridge University Press.

Martiny, K.M. (2015). Embodying Investigations of Cerebral Palsy- A Case of Open Cognitive Science. Ph.d.-afhandling. Københavns Universitet.

Martiny, K.M. (2016). Kapitel 6: Den forudsigende hjerne og cerebral parese. I: Christensen, M.S. (red.). Den forudsigende hjerne. HjerneForum.

McLaughlin, J. & Coleman-Fountain, E. (2014). The unfinished body: the medical and social reshaping of disabled young bodies. Social Science & Medicine, 120, 76–84.

Nagbøl, S. (2013). Bevægelser og oplevelsesrumsskole. I: Eichberg, H., Engel, L. & Winther, H. (red.). Tæt på kroppen. Idrottsforum org. Malmö.

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.

Ritterband-Rosenbaum, A. Christensen, M.S., Kliim-Due, M. Petersen, L.Z. Rasmussen, B. & Nielsen, J.B. (2011). Altered sense of Agency in children with spastic cerebral palsy. BMC Neurology.

Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., Dan, B & Jacobsson B. (2007). A report: the definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology, 109(suppl 109): 8-14.

Rutter, M. (2012). Resilience as a dynamic concept. Development and Psychopathology, 24 (2)

Sandström, K. (2007). The lived body – experiences from adults with cerebral palsy. Clinical Rehabilitation, 21: 432–441.

Senninger, T. (2000). Abenteuer leiten–in abenteuern lernen. Münster, Germany: Ökotopia

Sikolia, D., Mason, M., Biros, D. & Weiser, M. (2013). Trustworthiness of Grounded Theory Methodology Research in Information Systems. MWAIS 2013 Proceedings. 16.

Smith, B. & Sparkes, A. (2009). Narrative analysis and sport and exercise psychology: Understanding lives in diverse ways in Psychology of Sport and Exercise 10, 2009, pp. 279-288

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

Sparkes, A. C. (2018). Researching the senses in sport and exercise. In: B. Smith and A.C. Sparkes, eds., Routledge Handbook of Qualitative Research in Sport and Exercise. London and New York: Routledge, pp. 343-355.

Spradley, J. P. (1980). Participant Observation. Wadsworth

Stelter, R. (2012). Tredje generations coaching – en guide til narrativ-samskabende teori og praksis. Dansk Psykologisk Forlag

Strauss, A. & Corbin, J. (1998/2008). Basics of qualitative research: Techniques and procedures for developing grounded theory. Sage Publications

Todres, L. (2007). Embodied Enquiry: Phenomenological Touchstones for Research, Psychotherapy and Spirituality. Basingstoke, UK: Palgrave Macmillan & Human Kinetics.

Ungar, M. & Liebenberg, L. (2013). Contextual factors related to school engagement and resilience: A study of Canadian youth with complex needs. In: Journal of Child and Youth Development, 1 (1).

Van Manen, M. (1997). Researching Lived Experiences: Human Science for Action Sensitive Pedagogy. ON: The Althouse Press. London.

van Manen, M. (2016). Phenomenology of Practise. Meaning- Giving Methods in Phenomenological Research and Writing. London and New York. Routledge.

Vygotsky, L. (1978). Mind in Society: The Development of higher Psychological Processes. Harvard University Press.

Winther, H. (2015). Praktikerforskning. In: Thing, L.F. & Ottesen, L.S. Metoder I idræts- og fysioterapiforskning. s. 172-189. 2. udgave. Munksgaard.

K Ø B E N H A V N S U N I V E R S I T E T D E T S U N D H E D S V I D E N S K A B E L I G E F A K U L T E T

Ph.d.-afhandling 2020

Mie Maar Andersen

BETYDNINGSFULDE OPLEVELSER