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BOOKLET

TRANS E VISION Booklet MUSIC THERAPY AS A TREATMENT Dear Reader, Three partners from Germany, Italy and Spain have cooperated in the last two years within the learning partnership “TRANS-E-VISION – Music feels the end of life”, funded by the European Commission. Within this partnership we worked together intensively to bring together different stakeholders in the field of companionship of elderly and dying people with music as support and complement to the professional caring staff by volunteers to allow dignified ageing and dying. Music offers the great possibility to serve as special level of encounter if language hits the walls. The booklet you are holding in your hand is the product of this great two-year European cooperation and exchange. By the work of the three national teams and the exchange on European level during different transnational meetings we identified ways to make changes in care and companionship of Europeans in the last period of their life, we identified good and promising strategies (good practice) using music to care for people in the last part of their life, we fostered the networking of stakeholders in the field (e.g. caring staff, music therapists, theologians, volunteers) on regional, national and European level and we thus gained lots of information about the actual voluntary engagement and its potentials in the field of end-of-life-care. Within this booklet you can find European and national data on the TRANS-E-VISION issues, good practice examples and suggestions for workshops in the field in form of descriptions of the workshops that took place within the TRANS-E-VISION partnership. You can learn more about possibilities for volunteers and fields of cooperation with professional caring staff as well as a bibliography with further reading. During our research we had the chance to know interesting organizations that make use of palliative cares and in particular of music therapy

to cure and rehabilitate

seriously ill people. This is why we believe their inclusion in this booklet is important to widen and improve the information given. We hope you will find our booklet interesting and helpful to inform all stakeholders that are involved in the caring of the elderly and the dying (as families, friends, music therapists, theologians, psychologists, or voluntary organisations) on how companionship can be improved by music. We will be very happy to receive your feedback on our work (e.g. via our website: www.trans-e-vision.eu) 1


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The TRANS-E-VISION Partners

Elternverein Baden-Württemberg e.V. – Germany http://www.eltern.bonfig-team.de/

Il filo d’Arianna - Italy www.filodarianna.net Research  by      Paola Taglioli (paola.taglioli@filodarianna.net) Greta Scaglioni (greta.scaglioni@gmail.com)

Progestia - Spain www.progestia.com Research  by Asya Atanasova Rafaelova-Eneva

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Index 1 - European data 2 – Germany 2.1 Music in end of life care 2.2. Best practices 2.3. Trans E Vision Workshops 2.4 Volunteers in Hospice 3 - Italy 3.1 Best practices 3.2 Trans –E- Vision Workshops 3.3 Palliative care and volunteering 3.4 Bibliography 4 - Spain 4.1 Music Therapy in Spain 4.2 Best practices 4.3 Links to video material

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EUROPEAN DATA

1.1. European facts and figures As 90% of deaths across the EU occur among people over 65, it is mandatory to improve palliative care access to them. Their needs, especially in the last stages of life, are numerous, but they often remain unmet because their discomfort is widely underestimated. Palliativetreatments have historically been offered to cancer patients, but actually people aged 85+ are more likely to die from other illnesses, such as cardiovascular disease, diabetes and dementia, or simply of terminal ageing. As the population ages the urgency of a dialogue between palliative medicine and geriatrics increases dramatically. The two disciplines have much in common: they seek to optimise care for older adults with advanced illness, and see the patient and his loved ones as a unit requiring thoughtful, integrated care, rather than seeing the patient simply as a cluster of organs and conditions. What is lacking today is a common European strategy. The EU leaves policymaking in this area up to member states which, in many cases, have failed to adopt the necessary measures to improve palliative care services. In 2003, the Council of Europe 3


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approved a recommendation on palliative care that was given to national governments so they should consider this - but only a few did. Almost all European countries have laws regulating euthanasia, however the right to palliative care is less widespread. The UK leads the world in quality of dying, but many developed nations like Italy, Spain and Denmark lag a long way behind. The European scenario is characterised by inequalities, as different cultures deal with this issue in different ways. There are disparities within countries as well; rural/urban divisions (i.e. Italy), regional socioeconomic status (i.e. Spain) and decentralised governance seem to be the most important factors. In 2009, the group of people aged 65 years and older represented almost 15% of the population of most European Union (EU) countries (Fig. 1.1). By 2050, estimates indicate that more than one quarter of the population of the European Region will be aged 65 years and older. In Spain and Italy, this is likely to rise to more than one third of the population. The greatest percentage increase will be among people aged 85 years and older. Although disability is declining among populations of older people in high-income countries, the increase in absolute numbers means that increasing numbers of older people in almost every society will face the risk of indifferent or poor health care, dependence and multiple illnesses and disabilities. This will also inevitably lead to higher demand for palliative care for this group. A core value for palliative care enables people to make choices about their end of-life care and place of death. Most people in the European Region do not die at home, although this is the preferred place of care and of death for the majority. Even though some people may change their minds away from home, most still prefer home, even in older age groups. Analysis of evidence involving 1.5 million people from 13 countries has found 17 main factors related to dying at home among people with cancer. The most important ones are people’s low functional status, their preferences, the use and intensity of home care, living with relatives and having extended family support. The interplay between these factors can add further complexity. The association between age and place of death varies both within and between countries. For example, in Spain, older age is associated with a higher probability of dying in a hospital or in a nursing home and a lower chance of dying at home.

Future Trends At the beginning of this century there is still a great deal of work to do in Spain in order to obtain a professional development and academic recognition of Music Therapy. To obtain this purpose is necessary to plan a united action between Music Therapy Associations, Universities and Private Institutes in order to promote professional interchange and to create unified criteria that allow: 4


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! To create a solid background to include Music Therapy in different professional and academic contexts. ! To establish unified criteria and standards for Music Therapy training that leads to an official Master in Music Therapy according the rules of EHEA. ! To increase the quality of the professional practice in different working areas by professional trained Music Therapists. ! To elaborate an ethic code of the professional practice according to the EMTC and the WFMT guidelines. ! To increase the quality and quantity of research in Music Therapy.

Reaching these objectives will allow Spanish Music Therapy to develop its own professional identity and a concept of the therapeutic use of music according Spanish cultural background increasing the quality in the professional practice in different working areas. Spain lives actually a good moment for professional and academic consolidation of Music Therapy. The future is in the Spanish Music Therapists’ hands. GERMANY 2.1 MUSIC IN THE END OF LIFE CARE By  Alexander  Sommer  –  translated  by  Juliane  Keßler

Music is not affecting everybody in the same way. Delighting some - unsettling others. Music can also be a support to (re-)activate deep feelings and thus start a process or support on going processes. Especially in the last phase of life, people review and look at the different phases of life in a different light. As outsider you can sometimes only get an impression of what is going on in a person. Not seldom the person is “dealing with it on his/her own”. In short moments we can get an impression by punctual reactions. These reactions you can gather and reflect or respectively include in a process. Here e.g. musical elements could be a good solution: Songs that are connected e.g. to childhood, youth or special experiences and feelings. These could be deep emotions which can have a beneficial effect to the process of dying. Nevertheless it is important to look at the individual biography e.g. traumata, losses and connected music. Are there any predilections or aversions? If it is not possible to ask the person directly anymore, you have to ask the environment, going slowly stepby-step, humming quiet melodies and waiting for the reactions. Even if there is no reaction it is possible, for example in coma-situations, that persons experience the 5


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music (it is possible that the sense of hearing is working until the very end). Thus it is always important to trust in the own “gut feeling” if music is reasonable and if yes, which kind of music. However, music can also be harmful, especially in the process of dying, e.g. if the dying person does not like music at all or special kinds of music or if any acoustic stimulation is too much in the advanced process of dying. Nevertheless, it can mean a big share of quality of life and enrich the palette of feelings of the dying person as well as the accompanying person and also underline the particular situation. In particular moments melancholic or aggressive feelings provoked by music can have a healing effect, too. We experience consistently that communicative and emotional levels are opened by music and – if it is used individually and cautiously –resonate effectively also at the end of life.

2.2 BEST PRATICES

Susanne Rehberg, Leitung Ambulanter Hospizdienst Einbecker  Str.  85,  10315  Berlin,  Tel.:  29335728

Ambulante hospizliche Unterstützung Patienten mit unheilbaren Erkrankungen und deren Angehörige benötigen oftmals eine spezielle Unterstützung die durch Ambulante Hospize erbracht wird. Im Gegensatz zum stationären Hospiz suchen wir den Patienten dort auf wo er lebt, in der Häuslichkeit oder in anderen Wohnformen. Ziel ist es, dass die Menschen so lange zu Hause bleiben können wie möglich. Die hospizliche Unterstützung ist ein ergänzendes und kostenfreies Angebot zu anderen bestehenden Versorgungsstrukturen (Pflegedienste, SAPV Ärzte, Hausnotruf, fahrbarer Mittagtisch, Physiotherapie usw.). Unterstützung erfolgt zum einen durch Beratung durch qualifizierte hauptamtliche Mitarbeiter, zum anderen durch den Einsatz ehrenamtlicher Hospizmitarbeiter die für kontinuierliche Begleitungen zur Verfügung stehen. Im Mittelpunkt unserer Aufmerksamkeit stehen die Bedürfnisse der betroffenen Menschen. Bedürfnisse der Patienten z.B. -

Körperliche Bedürfnisse /Vermittlung und Organisation von pflegerischer und medizinischer häuslicher Versorgung…

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Bedürfnis nach Sicherheit /Vorsorge treffen, Aufklärung über Patientenrechte, Beratung zu Vollmachten und Verfügungen, Regeln der letzten Dinge, Ordnung schaffen…

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Soziale Bedürfnisse /Kontakt und Kommunikation sowie Unterstützung von Familie und Freunden, Aktivitäten, familienentlastende Unterstützung…

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Bedürfnis nach Wertschätzung /Achtung durch andere und Erhalt der Selbstachtung, Ehrlichkeit und Wahrhaftigkeit erfahren

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Bedürfnis nach Selbstverwirklichung /spirituelle Bedürfnisse, Sinnfragen klären

Bedürfnisse der Angehörigen / Familienzentrierter Ansatz ! Veränderung der Familienstruktur durch die Krankheit ! Familie ist eine dynamische Einheit und als Ganzes betroffen ! Krise für das gesamte System, Destabilisierung der Balance ! Ganzheitlicher Ansatz – Familie stärken, Sicherheit geben, Unterstützung für

das Familiensystem durch: ! Leitfaden mit Tipps ! Sicherung der Alltagsaufgaben in der Familie ! Für Auszeiten und Entlastung sorgen z.B. durch ehrenamtliche Unterstützung ! In Pflege und Betreuungssystem einbinden ! Beraten zu Hilfsdiensten, Anleiten zum Umgang mit Gefühlsschwankungen !

Informieren über Krankheitsverlauf und Symptome

Die hospizliche Unterstützung greift dort ein, wo Hilfe nachgefragt wird. Die Themen der aktiven Unterstützung oder der Gespräche bestimmen der Patient oder seine Angehörigen. Der Hospizdienst begleitet die Familie nicht nur in den letzten Wochen und Tagen. Beistand erfolgt jedoch bis zum Tod. In der letzten Lebensphase leisten wir Sitzwachen, auch in der Nacht, um Angehörige zu unterstützen.

Ambulante Hospizdienste leisten Lebensbegleitung in einer existentiell bedrohlichen Zeit. Diese Lebensbegleitung ist gleichsam auch eine Trauerbegleitung für Patienten und Familie. enrichment that their specific languages offer to stimulation. The

sessions are carried out individually in a dedicated environment.

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Sozialdienste der Volkssolidarität Berlin gGmbH

Die Arbeit des Ambulantes Hospizdienst der Volkssolidarität Berlin 1. Allgemeine Angaben

Bezeichnung der Einrichtung:

Ambulanter Hospizdienst

Träger:

Sozialdienste der Volkssolidarität Berlin gGmbH

Projektsitz:

Einbecker Str. 85 10315 Berlin

Kontakt:

Tel: 030- 29335728 e-mail: hospiz@volkssolidaritaet.de Internet: www.volkssolidaritaetberlin.de/ambulanter_Hospizdienst

Einzugsbereich und Wirkungsbereich: Land Berlin Mitarbeiterstruktur:

Susanne Rehberg, Leitung 34 h Dipl. Sozialpädagogin mit Zusatzqualifikationen in Sozialmanagement, Sterbebegleitung und Trauerbegleitung, Führungskompetenz, Koordination und Palliativ Care Beratung Leitung

Alexander Sommer, Koordinator 30 h Dipl. Sozialpädagoge mit Zusatzqualifikationen in 8


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Führungskompetenz, Koordination und Palliativ Care Beratung

Nadine Groves, Koordinatorin 20 h exam. Krankenschwester mit Zusatzqualifikationen in Sterbebegleitung, Führungskompetenz, Koordination und Palliativ Care Beratung

2. Ausgangssituation Die ausreichende psychosoziale Versorgung sterbender Menschen ist sowohl im Bereich der ambulanten Pflege als auch in vollstationären Einrichtungen der Altenpflege durch hauptamtliche Pflegekräfte allein nicht zu leisten. Vor allem Sterbende ohne Angehörige leiden oftmals unter Einsamkeit und mangelnder Unterstützung bei der Bewältigung ihrer Trauer und Ängste im Angesicht des Todes. Ambulante Hospizarbeit sucht den Sterbenden und seine Familie dort auf, wo der Sterbende lebt. Dies kann in der Häuslichkeit oder in anderen Wohnformen sein. Der Ambulante Hospizdienst ist in die Strukturen der 1999 gegründeten Sozialdienste der Volkssolidarität Berlin gGmbH eingebettet. Trägerintern bestehen Kooperationen mit sieben Sozialstationen und drei Seniorenheimen, mit drei Wohngemeinschaften für Menschen mit Demenz sowie anderen internen Leistungserbringern. Darüber hinaus bestehen weiter Kooperationen mit verschiedenen Einrichtungen in anderer Trägerschaft.

3. Zielgruppe und Zielsetzungen

! Hauptzielgruppe

sind in erster Linie sterbende Menschen, die an einer Erkrankung leiden, die progredient verläuft und bereits ein weit fortgeschrittenes Stadium erreicht hat und bei der eine Heilung nach dem Stand wissenschaftlicher Erkenntnisse nicht zu erwarten ist. Die Angebote richten sich an Betroffene und deren Angehörige, die eine qualifizierte 9


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ehrenamtliche Sterbebegleitung wünschen. ( aus der Rahmenvereinbahrung zu § 39a SGB V)

! Zielgruppe

sind weiterhin ehrenamtliche Helfer, Menschen, die sich für Sterbende engagieren und Zeit schenken. Ohne ehrenamtliche Unterstützung ist Hospizarbeit nicht möglich.

! Zielgruppe

sind aber auch Fachkollegen medizinischer, pflegerischer oder pädagogischer Bereiche, welche zu allen relevanten Themen um Sterben Tod und Trauer sensibilisiert, geschult und weitergebildet werden. Dies umfasst sowohl die Ausbildung als auch Weiterbildung und Aufklärungsarbeit.

! Im

Rahmen der Öffentlichkeitsarbeit, Lobby- und Gremienarbeit sind alle Menschen Zielgruppe von Aufklärung und Bewusstmachung der hospizlichen Themen.

a) übergeordnete Leitziele

Die Leitidee der Hospizbewegung soll durch folgende Ziele verwirklicht werden

! Sterben soll als integraler Bestandteil des Lebens individuell und gesellschaftlich anerkannt werden. Adressaten der Betreuungsangebote sind der sterbende Mensch und seine Angehörigen. ! Eine optimale Schmerztherapie und Symptomkontrolle durch ein inter-disziplinäres Team von Fachleuten soll in der letzten Lebensphase unheilbar Kranken Schmerzfreiheit und weitgehende Beschwerdefreiheit gewährleisten. ! Der Betroffene soll seine letzte Lebensphase selbstbestimmt nach Möglichkeit im privaten Umfeld erleben. Zur Entlastung und Unterstützung des Sterbenden und der ihm nahe stehenden Personen wird eine ständige Erreichbarkeit von Ansprechpartnern sichergestellt. 10


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! Die Einbeziehung ehrenamtlicher Helferinnen und Helfer gilt als unverzichtbar.

b) den Leitzielen zugeordnete operative Handlungsziele

1. Öffentlichkeitsarbeit zur Akquise der ehrenamtlichen Mitarbeiter !

!

Organisation und Durchführung der Vorbereitungskurse für die ehrenamtlichen Mitarbeiter Kooperation mit Einrichtungen, Sozialstationen, Ärzten und anderen am Netzwerk Beteiligten

!

Einsatzplanung und Einsatz der ehrenamtlichen Mitarbeiter

!

Begleitung und Supervision für die ehrenamtlichen Mitarbeiter

!

Organisation von Gesprächsangeboten für Angehörige und Trauernde

!

!

!

Aufbau und Organisation von Sitzwachengruppen, Rufbereitschaft und Nachteinsätzen Organisation und Durchführung von Weiterbildungsangeboten, Informationsveranstaltungen und Workshops Öffentlichkeits-, Gremien -und Lobbyarbeit

4. Leistungsangebot

Das Leistungsangebot ergibt sich aus den Zielsetzungen. Unsere wichtigste Leistung ist die menschenwürdige Begleitung Sterbender und die Unterstützung der Angehörigen. Nach dem Grundsatz ambulant vor stationär werden die Betroffenen individuell unterstützt. Die Leistungen des Ambulanten Hospizes sind ein ergänzendes Angebot zu den bestehenden Versorgungsstrukturen wie Pflege und haus- bzw. fachärztliche Versorgung. Unsere Angebote sind für die Betroffenen kostenfrei. Um diese Leistung zu erbringen, sind folgende Einzelleistungen notwendig. 11


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Akquise und Schulung geeigneter Interessenten Für den ambulanten Einsatz suchen wir engagierte Helfer und wählen sie sorgfältig aus. In einem ausführlichen persönlichen Gespräch und mit Hilfe eines Fragebogens prüfen wir deren Eignung, Motivation und Fähigkeiten. In einem 90-stündigen Kurs werden die Interessierten gründlich und umfassend auf Ihre Tätigkeit vorbereitet. Für die verschiedenen Schulungsinhalte werden jeweils qualifizierte Fachkräfte als Dozenten eingeladen. Der gesamte Kurs wird von einem hauptamtlichen Mitarbeiter begleitet und betreut.

Adäquate Organisation der Einsätze Die Organisation der Einsätze erfolgt in Zusammenarbeit mit den zu unterstützenden Sozialstationen sowie anderen Hilfsstrukturen wie SAPV (Spezialisierte Ambulante Palliative Versorgung) -Ärzten, Schmerzambulanzen und Beratungsstellen, Hausärzten, Palliativ-Stationen und Krankenhäusern. Gespräche mit den Sterbenden und den Angehörigen, die Organisation von Sitzwachen, Rufbereitschaften und Nachtwachen und, wenn erforderlich, die Kooperation mit anderen ambulanten Hospizen sollen eine adäquate Begleitung ermöglichen. Die Begleitung der Familien oder Einzelpersonen ist für die Hilfesuchenden kostenfrei.

Supervision, Begleitung, Unterstützung und Weiterbildung der ehrenamtlichen Mitarbeiter Während ihrer Tätigkeit erhalten die Helfer jederzeit Unterstützung und Beratung durch die hauptamtlich tätigen Fachkräfte. Darüber hinaus bieten regelmäßige Treffen die Möglichkeit, sich auszutauschen und gegenseitig zu unterstützen. Regelmäßig finden Supervisionen und Fallbesprechungen sowie Weiterbildungsveranstaltungen statt. Insbesondere bei den ersten Begleitungen werden Neueinsteiger neben Supervision auch in Einzelgesprächen und auch in Einzelsupervision nach Bedarf besonders unterstützt.

Beratungsangebot Beratungsangebote richten sich an Betroffene, Angehörige, Fachkollegen und alle am Thema Interessierten. Beratung erfolgt zu allen Themen im Zusammenhang mit Sterben Tod und Trauer, Hospizarbeit, Patientenverfügung, 12


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Vorsorgevollmacht und Patientenrechte am Ende des Lebens. Zur Beratung gehört die Vermittlung bei der Lösung spezieller Probleme z.B. im Zusammenhang mit Pflege, Finanzierungen, Patientenverfügungen, Selbsthilfe - oder Angehörigengruppen. Die Beratungen erfolgen durch die qualifizierten hauptamtlichen Mitarbeiter und sind für die Hilfesuchenden kostenfrei.

Öffentlichkeitsarbeit und Gremienarbeit Die Öffentlichkeitsarbeit bezieht sich auf verschiedene Inhalte und Zielgruppen. Einerseits geht es um die Gewinnung von ehrenamtlichen Helfern und die Bekanntmachung unserer Angebote, andererseits um die Verbreitung der Hospizidee und Bewusstmachung der Themen Sterben, Tod und Trauer in Zusammenarbeit mit den anderen am Netzwerk beteiligten Fachdiensten. Öffentlichkeitsarbeit erfolgt unter Einbindung aller Medien. Als Mitglied im Hospiz -und Palliativ Verband Berlin sind wir auf und Landes und auf Bundesebene trägerübergreifend organisiert.

Schulungen, Workshops und Weiterbildungsangebote für alle am Thema Interessierten Neben den Vorbereitungskursen zum ehrenamtlichen Hospizhelfer bieten wir Sterbebegleitungsseminare, Vorträge und Informationsveranstaltungen zu verschiedenen Themen an.

Wertschätzung der ehrenamtlichen Helfer Zur Wertschätzung der ehrenamtlichen Helfer finden regelmäßig Treffen und Gespräche statt. Wir bemühen uns um verschiedene Formen von wertschätzenden Angeboten, wie Freikarten für Kulturveranstaltungen oder ähnliches.

5. Arbeitsmethoden

In unserer methodischen Arbeit orientieren wir uns an den vom Deutschen Hospiz und Palliativverband erarbeiteten Qualitätsstandards und Richtlinien. Wir verstehen uns als Dienstleister und richten unser Angebot nach den Bedürfnissen und Wünschen der Betroffenen. Wir führen die (im Bundesland 13


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einheitlich angewendete) Statistik über die ehrenamtliche Arbeit und die Einsätze in unserem Hospiz.

a) Regelmäßige Aus - und Bewertung der Arbeitsergebnisse

Regelmäßige Aus - und Bewertung der Arbeitsergebnisse findet in verschiedener Form statt. Das Ergebnis der Schulung der ehrenamtlichen Mitarbeiter wird in einem Fragebogen bewertet und sowohl hinsichtlich der Inhalte als auch der Dozenten überprüft. Weiterhin erfolgt im Abschlussgespräch eine Auswertung. Die Arbeit der ehrenamtlichen Mitarbeiter wird durch die hauptamtlichen Mitarbeiter überprüft, indem Gespräche mit den Sterbenden und deren Angehörigen erfolgen. b) Zugangs - bzw. Aufnahmeverfahren der Ehrenamtlichen Mit jedem an ehrenamtlicher Tätigkeit Interessierten findet ein ausführliches Erstgespräch statt. Mit Hilfe eines Fragebogens werden seine Motivation und Eignung nach besten Möglichkeiten geprüft. Die verbindliche Absichtserklärung (eine moralische Absichtserklärung ohne rechtliche Relevanz), das Ambulante Hospiz zu unterstützen, erfolgt vor Antritt der Schulung. Eine weitere Prüfung und Auswahl der Helfer erfolgt während der Schulung, die durch einen hauptamtlichen Mitarbeiter begleitet wird. Bevor der Betreffende beim Sterbenden zum Einsatz kommt, findet ein ebenso ausführliches Gespräch statt. Bei den Sterbenden wird ebenfalls nach Möglichkeit vor Einsatz des ehrenamtlichen Helfers ein Besuch und Gespräch mit einem hauptamtlich beschäftigten Mitarbeiter stattfinden. Dabei wird die Situation eingeschätzt und geklärt, so dass bei Beginn der Zusammenarbeit vom ehrenamtlichen Helfer und zu Betreuendem keine Unklarheiten über Auftrag, Sinn und Inhalt der Begleitung mehr bestehen. Es wird ein Anamnesebogen erstellt und Vereinbarungen werden schriftlich fixiert.

c) Verfahren zur Qualitätssicherung Für die interne Organisation entwickelten wir Leitfäden, Erhebungsbögen, Dokumentationsbögen und Stammblätter sowie Nachweise zum Datenschutz. Durch die Jahresberichte mit den Statistiken und Sachberichten zu Beratung, Begleitung und Ehrenamt wird die Arbeit außerdem dokumentiert und ausgewertet.

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2.3. TRANS E VISION WORKSHOP

Workshop Title: “Music in the hospice-working” (teacher: Martina Baumann, Heidelberg) Workshop Duration: 6 hours (implemented e.g. 20.April 2013 in Mössingen, at the Hospitzdienst) Necessary material/recourses: Block-flute, Xylophone, drums and other instruments Objectives: Communication with dying people by music, relaxing, relieving pain Activities: Singing, playing drums and instruments, having music by CD Expected Results: Better sense of the patients Feedback: Will be seen later – speaking about the experience of music at the end life – offering of improvements By Dr. Irmgard Hornef

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2.4 VOLUNTEERS IN HOSPICE

Quality Requirements for the Preparation of Volunteers in Hospice Work Guidelines  of  the  Hospice  and  Pallia3ve  Care  Associa3on  and  prac3cal  experiences  of  the   ambulant  hospice  of  the  Volkssolidarität  Berlin Text  by  Alexander  Sommer

The  following  are  guidelines  from  the  Hospice  and  PalliaPve  Care  AssociaPon  to  qualify   voluntary  workers  for  the  care  of  terminal  ill  and  dying  paPents:

 InformaPon:  providing  informaPon  with  the  goal  to  win  volunteers  ClarificaPon:  clarifying  mutual  expectaPons  and  aims  of  both  sides,  the  volunteer  and   the  hospice,    QualificaPon:  qualifying  the  volunteers  in  a  preparaPon  course

Information This  phase  is  concerned  with  the  public  outreach  for  awareness  of  hospice  work  and  its  offers.   This  is  achieved  through  lectures,  (advanced)  trainings  lessons  and  seminars  on  the  subject   with  the  aim  to  win  new  volunteers.   The  main  awareness  event  in  Berlin  is  the  Berlin  Hospice  Week,  which  is  organised  by  all  Berlin   Hospices  of  the  HPV. To  find  volunteers  for  our  hospice  we  adverPse  in  the  local  print  media  around  5  months   before  starPng  the  qualifying  training,  which  every  volunteer  has  to  complete.   People  interested  to  volunteer  for  us  will  be  invited  to  an  informal  interview  where  mutual   expectaPons  will  be  clarified.

Clarification We  generally  have  around  30-­‐  45  people  showing  interest  in  our  course  and  voluntary  work,   from  which  we  choose  12-­‐15.  In  our  personal  conversaPon  with  the  volunteers  we  try  to  find   out  their  moPvaPons,  personal  experience  with  ill  and  dying  people,  openness  to  the  subject,   16


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the  willingness/readiness  to  self  reflecPon  and  integraPon  in  the  group,  possible  hidden  grief   or  traumas,  tolerance  for  other  lifestyles  and  views.   How  much  Pme  can  they  invest  in  their  voluntary  work  and  how  flexible  are  they? A  quesPonnaire  can  be  helpful  as  a  guideline  for  the  interview  but  doesn’t  need  to  be  the  main   context  of  the  interview.  The  interview  that  usually  takes  around  an  hour  gives  a  good   impression  on  the  potenPal  volunteer  and  their  moPvaPon  but  is  no  guarantee  that  the  person   is  suitable  to  offer  company  and  care  for  terminal  ill  people.  This  usually  becomes  clear  during   our  4  weeks  training  (spread  over  5  months).

Qualification We  host  the  training  with  the  assistance  of  external  lecturers  including  psychologists   specialized  in  oncology,  home  care  doctors,  pastors,  coaches  for  communicaPon  and   supervisors.   The  course  is  not  meant  to  be  a  training  that  can  be  passed  with  an  exam  but  a  preparaPon  to   sensiPse  the  hospice  volunteers  for  the  problems  and  needs  of  dying  and  terminal  ill  people   including  their  family  and  friends.  Within  the  course,  different  exercises  for  self-­‐reflecPon  give   an  impression  to  us  and  the  volunteer  themselves  how  suitable  there  are  for  this  kind  of  work. A  cerPficate  that  shows  the  acendance  of  90  hours  preparaPon  training  is  necessary  to   volunteer  in  any  hospice  under  the  HPV.  The  HPV  requires  that  certain  key  themes  must  be   taught.  Hospices  are  free  to  choose  their  own  curriculum  or  to  follow  an  already  established   curriculum  like  the  ‘Celler  Modell’.   The  key  themes  are: ! Reflec3on  of  ones  own  biography

Personal  experiences  with  dying,  death,  grief;  reflecPng  and  dealing  with  own  feelings   and  emoPon  like  fear,  hope,  etc. ! Dealing  with  grief  and  bereavement

What  is  grief?  The  tasks  of  mourning.  What  is  helpful  and  what  isn’t  to  people  in   mourning?  AnPcipatory  grief. ! Communica3on

Verbal  and  non-­‐verbal  communicaPon.  How  to  be  an  acenPve.  ConversaPon   techniques,  empathy,  sensiPvity,  intuiPon. ! Hospice  concept

What  does  hospice  mean?  History  of  the  hospice  movement.  Chores  and  funcPons  of   palliaPve  care  and  hospice  networks.  Ethical  posiPon  regarding  e.g.  assisted  dying.

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! Dealing  with  dying  people,  their  family  and  friends

Stages  of  dying,  forms  of  communicaPon  of  dying  people,  family  structures  and  how  to   deal  with  them.  What  do  dying  people  need  and  what  help  can  be  offered  to  the   carers. ! The  Helper  personality

Ability  and  competence  in  giving  and  accepPng  help.  Observing  and  accepPng  limits.   Burnout,  sources  of  inner  strength,  supervision. ! Spirituality  und  Religion

Death  and  dying  from  the  perspecPves  of  different  religions.  Spirituality.  Religious  and   spiritual  tolerance. ! Complementary  Subjects

PalliaPve  care  and  treatments,  funerals  and  burials,  legal  macers  for  burials,  living  will   (advanced  decisions),  local  and  naPonal  networks  for  hospices,  nursing  homes,   palliaPve  care  wards  in  hospitals,  home  care  doctors,  etc. In  our  experience,  a  4  week  course  seems  more  effecPve  and  sensible  than  evenings-­‐  or   weekend  courses.  The  4  weeks  are  spread  over  5  months  and,  contrary  to  the  evening  course,   the  acendees  are  able  to  fully  concentrate  on  subject  macer  for  a  week.  Course  acendees  can   ojen  apply  for  a  vocaPonal  holiday,  some  even  use  their  annual  leave.  In  general,  the  course   should  comprise  between  7  and  15  parPcipants.

Ajer  the  course  has  finished,  professional  hospice  workers  accompany  the  volunteers  during   their  first  visits  and  remain  available  as  a  contact  from  then  on.  The  volunteers  also  have   access  to  addiPonal  supervision  as  well  as  further  addiPonal  training.  We  also  have  started  to   set  up  a  library  with  specialist  literature.

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ITALY 3.1 BEST PRACTICES During our research for the Trans & Vision project, we found out a significant use of Music Therapy applied to post coma cases, and because of this we decided to add the following Best Practices The House of Awakening “Luca De Nigris” was funded in 1998, following an

agreement

between a voluntary

non-profit association “Gi amici di Luca”

(Luca’s friends) and the Public Health Service Administration of Bologna (AUSL). Luca was a 15-year-old boy whose brain was seriously injured and went into a coma. His parents and friends fought for a new rehabilitation centre for comatose patients and thanks to their efforts Bologna has now a state-of-the-art facility. Here below we report the experience of Therapeutical Laboratories using sounds and music in the treatment of patients in coma.

Music in Therapeutical Labs (MST) at “Casa dei Risvegli Luca De Nigris” (CdRLDN) in Bologna www.casadeirisvegli.it Author and Music Therapist : Roberto Bolelli

Bologna Italy

e.mail se12141@iperbole.bologna.it>

The sound and musical element is intimately embodied in each individual. The pursuit of well-being through music is a very ancient practice, and today the significant potentials of the sound make it a powerful tool in situations of distress, suffering and disability, going beyond the generic pursuit of relaxation and well-being. The path of the laboratory MST CdRLDN is essentially based on the performing model of the “Armonization of Disability” (Postacchini and Various Authors, 2001), which aims to promote the harmonious development of sensory, movement, cognitive and affective analyzers.

The “expressive labs” (besides music also an acting lab will be implemented) give an important contribution to the so-called facility path through the emotional 19


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enrichment that their specific languages offer to stimulation. The sessions are carried out individually in a dedicated environment.

THE STEPS IN A MST PATHWAY The patient’s history The music intervention we propose for the person who is awakening begins with the collection of data of the patient’s sound-musical history. This includes gathering information on the patient’s music experience and knowledge, his preferences and listening mode, his sound environment in the various stages of life, and any other relevant information to delineate the “sound identity” of the patient. All this information is added to the history of the clinical situation, which should indicate not only the patient’s deficits but his residual powers and potentials and outline possible targets. This is carried out in cooperation with a team. The data collection is carried out through one or more sessions with the patient’s relatives and friends and the information is processed only by the music therapist in order to personalize the patient’s path according to his tastes.

The observation and the first 4 sessions Observation is a scientific process implemented according to a specific protocol. Every session is video recorded and then specific forms are filled in. Beside the music therapist, also mentors, physiotherapists, speech therapists and clinical staff can participate to the session to improve the cooperation. In order not to make the lab overcrowded, a CCTV shows the session to the patient’s relatives or training staff in a different room. During the first 4 sessions the patient is stimulated with various sounds based on rhythm, melody and tone. The name of the patient is often repeated with different rhythms and melodies. Also silence plays an important role, as pauses alternate with sounds.

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The second phase of the protocol the objective observation meets the sound/music history of the patient. Whenever possible, we tried to use a session pattern and stick to it as much as possible. As a matter of fact, repetition is essential at least for two reasons: first because the repetition of a stimulus makes possible to assess the different feedbacks; second because, should there be a change in the patient, it generally occurs in terms of slight differences in a long term pattern. In the MST activities we perform only live with our voices and music instruments, either improvising or performing music and songs that apply to the music identity of the patients as it turned out in his history. Only in one case we used a CD player. Each session lasts approximately 25 minutes.

The assessment Key indicators in the assessment of the patient’s feedback are movements (facial expressions, eye and head

fixation and orientation, movements of the limbs) and

possible verbal behaviors. We have been using WHIM (Wessex Head Injury Matrix), an approach that includes 62 items arranged in a hierarchical behavior. Another important indicator is the muscle tone: tense or relaxed. It is crucial in

the processing of emotions, and allows us to assess the general relaxation in a short-term, but also the integration of space, time and social life of the patient in a longer term. Muscle tone, together with other electrophysiological measurements (heart rate and breathing, blood pressure, EEG) may have in some cases fundamental importance in the assessment of the responses to stimulation, and these indicators are certainly used in experimental research. The assessment, both qualitative and quantitative, has confirmed the

effectiveness of sound stimulation in the rehabilitation process. In particular, we have pursued (and in many cases achieved) targets to improve movement, speech and memory skills.

SYNERGIES One of the main features of the CdRLDN, is certainly the particular nature of human contact we can established with every patient, staff member, visitor ... This allows genuine forms of cooperation between these people 21


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The special nature of human relationships is given by the presence of family members in the centre, and the Protocol entrust them a key role in the therapeutic process. Apart from their help in the patients’ history, the families are involved in our Information Project which consists of meetings held by the centre staff. In recent years we have hosted trainees from various organizations (people with degrees in DAMS and Educational Studies, with Diplomas in Music Therapy, hospital trainees, etc..) They all gave a significant contribution, an additional point of view to improve our activity. “Gli amici di Luca” (Luca’s friends) is a volunteers organization whose support has been fundamental in these years. Some volunteers have been involved in the MST labs. http://www.youtube.com/watch? v=NTAcsbGkRAQ&list=UU9ooyfTv5GoW13bg0JFWgWg&index=38 http://www.youtube.com/watch?v=aq88W6k17Ks&list=UU9ooyfTv5GoW13bg0JFWgWg

PSYCHO-TACTILE COMMUNICATION AND MUSICOTERAPY

“LA MUSICA PRIMA” centre in Milan www.lamusicaprima.it scuolamusicaprima@alice.it Psycho-tactile communication is a therapeutic approach which makes use of the potentialities of communication in a relationship based on non-verbal features and body language awareness. Namely, it consists of mutually related skills based on the use of voice and touch contacts in the treatment of a patient through communication and relation with him. This approach has developed from recent studies, methodologies and skills about evolution of human resources in the field of communication and relationships. It allows the individual to become self-conscious of his aptitudes for communication and body musicality. Moreover, it helps the individual understand how these aptitudes, when properly developed and consciously used, turn out to be an amazing means to improve the relationships with the others.

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This is especially true when “the others” are people with troubles and the dramatic features of their life come afloat and call for archaic needs such as nurture, protection, love. The possibilities of a practical application of psycho-tactile communication are:

 During pregnancy and antenatal lessons

 When the individual is in need of nurture and protection (e.g. premature baby)

 During childrens’ distress at school (difficult relationship with schoolmates, isolation, etc..)

 In difficult situations related to long rehabilitations (post-coma) or psychophysical uneasiness (patient with one or more disabilities)

 In elderly age as a support in the treatment of pathologies involving relationship, affectivity and communication; as a support in neuro-psychological pathologies causing orientation and self consciousness problems and in the pursuit of an improvement in life quality.

Psycho-tactile communication provides also an emphatic relation with the patient, based on a deep feeling in order to tune into his/her breathing pace and psychophysical state. The deep contact is based mainly on the individual’s openness to feel; it is not merely feeling but opening to share feelings in a dynamic unity affected and modified by mutual influences, paying close attention to whatever “the other” shows, feels and express of his inner being at any level. It’s not a passive feeling, on the contrary, is being fully present and aware with all our being, with our own authentic tune. Concerning the end-of-.life issue and its connections with the neuro-psychological features, enhanced by the emotional and assertive potentialities and motivating beauty of music, psychotactil communication is widely used in nursing homes, centres and institutions dealing with the elderly. 23


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Many are the applications in this field:

-

encourage the re-building of self-consciousness if this has been compromised by any kind of ailment;

-

encourage the re-building of attachment reaction in order to recover emotional stability and confidence in the environment and improve communication and relationships (for instance in case of depression);

-

encourage the re-building of space and time orientation so that the patient can give meaning again to what is happening inside and outside himself, in time and space;

-

experience different tonic states of the body, as relaxation or activity, even when the patient cannot move. NEUROPSYCHOLOGY  AND  MUSIC-­‐THERAPY  

IN THE TREATMENT OF POST-COMATOSE PATIENTS IN THE ACUTE REHABILITATIVE PHASE1 Author and Music Therapist: Dario Benatti - Milano – Italy e.mail dario.benap@alice.it

This  work  is  based  on  the  years  of  experience  of  a  team  dealing  with  the  rehabilitaPon  of  post-­‐ comatose  paPents  headed  by  Prof.  Cecilia  Morosini,  one  of  the  most  experienced  expert  in  the   rehabilitaPon   of   comatose   paPents   in   Europe.   The   objecPve   of   this   équipe,   made   up   of   physiatrical   personnel,   intensive   care   personnel,   physical   therapists,   neuropsychologists,   music-­‐therapists,   speech   therapists,   psychologists,   is   to   establish   an   intensive   and   global   treatment  for  post-­‐comatose  paPents,  usually  outside  the  hospital  environment. In  order  to  have  a  becer  global  comprehension  of  this  job,  it  is  necessary  to  know  the  general   situaPon  of  the  post-­‐comatose,  the  paPent  who  has  overcome  the  acute  intensive  care  phase   and  has  entered  what  we  can  define  as  the  acute  rehabilitaPve  phase  (which  can  also  last  for   long  or  very  long  periods  of  Pme).    This  phase  is  also  called  the  first  phase  of  awakening.

! DescripPon  of  a  paPent  in  the  acute  rehabilitaPve  phase

The   vital  signs  have  stabilized:  the  paPent  breathes  autonomously  and  the  cardio  circulatory   funcPons  are  stable.    The  paPent's  eyes  are  usually  open,  which  usually  means  that  he/she  is   coming   out   of   the   coma:   it's   a   sign   of   the   return   of   crude   consciousness   but   there   is   sPll   no   1

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access   to   the   contents   of   the   paPent's   conscious,   which   depends   on   the   integraPon   of   the   corPcal-­‐sub  corPcal  connecPons. This first phase is represented by global ontogenetic regression: the patient's motor activities have neonatal characteristics; a primitive reflex activity prevails, straightening and balance reactions are missing. The  neurological  picture  is  ojen  that  of  quadriplegia,  in  which  asymmetry  in  tone,  in  posture   and  in  small  movements  is  a  posiPve  prognosPc  sign. During   the   transiPon   phase   massive   neurovegetaPve   reacPons   may   also   be   presenta   for   example,  in  significant  moments  (when  a  familiar  person  is  near). From  an  intellecPve  point  of  view,  during  the  first  phase  eccessive  mispercepPon  seems  to  be   the   most   evident   phenomenon.     The   external   and   internal   sPmuli   invade   the   brain   and   the   mind   by   chance,   without   filtering,   without   control.     The   acenPon   span   is   limited,   mispercepPon   confuses   the   processes   which   are   sPll   unfocused,   leading   up   to   a   transitory   psychogenePc  reacPon. The  paPent's  memory  is  not  only  dissolved,  but  also  chaoPc:  the  paPent  has  lost  part  of  his/her   past  and,  therefore,  also  his/her  place  in  his/her  personal  and  collecPve  history. The  paPent  cannot  learn  about  the  future,  he/she  lives  in  a  present,  which  is  not  his/hers,  in  a   mind,  and  body,  which  do  not  belong  to  him/her.  It  is  probable  that  the  paPent's  memory  will   return  to  being  like  that  of  a  child  (to  be  eidePc):  a  non-­‐temporal  memory  for  images,  odours,   sounds,   confused   overlapping   of   events,   a   dream-­‐like   memory.   His/her   past   is   like   a   broken   puzzle  with  the  remaining  pieces  wheeling  in  the  air  around  without  any  connecPon. As  far  as   affecPon  is  concerned,  the  lack  of  self-­‐consciousness  causes  the  paPent  to  regress  to   only  primiPve  emoPonal  expressions.  The  paPent's  anguish  is  shared  by  the  surrounding  family   and  sanitary  environment,  caused  above  all,  by  the  impossibility  to  communicate  according  to   the  usual  channels  and  using  the  usual  means,  it  seems  that  his  symptoms,  in  a  diluted  way,   are  expanded  in  the  ones  who  are  around  him/her.

! General  programme   In  this  study,  we  deal  with  the  first  phase  of  awakening  in  which  the  paPent  usually  receives   sensorial,   visual,   tacPle,   acousPc,   etc.,   sPmulaPon,   allowing   for   a   gradual   and   increasingly   becer  contact  with  the  environment.

In   this   period,   however,   serious   errors   can   be   made   which   can   result   in   the   opposite   effect,   arousing   primiPve   insPncts   in   the   paPent,   such   as   defence   and   shupng   himself/herself   off   from  the  rest  of  the  world.  So  any  sPmulaPons  must  be  constantly  monitored  and  reguled  as   much  as  possible  on  the  basis  of  the  paPent’s  feedbacks  and,  of  course,  on  the  consciousness   that   in   this   phase   the   large   percepPon   disability   and   the   instability   of   the   nervous   system   25


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impose  that  these  sPmulaPons  must  be  short  and  well  controlled,  and  must  be  followed  by  a   rest  period. Therefore  we  take  the  search  for  a  good  level  of  contact  with  the  environment  at  a   qualita've   level  into  great  consideraPon,  we  feel  that  this  qualitaPve  contact  is  a  transversal  objecPve,  its   achievement   represents,   in   our   point   of   view,   a   fundamental   aid   in   achieving   all   the   other   objecPves  which  are  part  of  our  rehabilitaPve    program.

! ObjecPves Naturally,  the  objecPves  of  a  rehabilitaPon  program,  are  numerous  and  different,  on  one  side,   they   regard   the   medical   aspects   as   the   eliminaPon   of   the   symptoms,   the   diminishing   of   the   pain   and   of   the   secondary   and   terPary   damages,   on   the   other   side   the   psychological   and   neuro-­‐psychological  aspects  that  have  the  aim  of  leading  the  paPent  toward  to  the  developing   of   his/her   residual   potenPals   and   to   the   re-­‐equilibraPon   of   his/her   relaPonship   with   the   external  world  with  more  and  more  autonomy.

All   this   objecPves   have   a   common   aspect:   the   search   for   a   becer   quality   of   life,   or,   in   other   words,  the  search  of  the  maximum  bio-­‐psycho-­‐social  well-­‐being. During   the   paPent's   recovery   phase,   we   think   that   for   him/her   improving   the   quality   of   life   mainly  means  being  welcomed  as  much  as  possible  in  this   foreign  place  in  which  he/she  has   suddenly  found  him/herself. In  this  parPcularly  difficult  situaPon,  the  best  way  to  come  into  contact  with  the  person  is  to   listen.   Of  course,  not  simply  listening,  but  using  all  your  senses  open  and  directed  towards  the   other.    True  listening  means  paying  deep  acenPon  to  all  levels  of  manifestaPons  in  the  paPent,   emoPons,  expressions,  etc.

! General methodology As   a   premise   and   support   to   the   associated   acPviPes   connected   to   framing   or   scaffolding   (Bruner,   Vygotsky)   tutorial   funcPons,   our   iniPal   program   foresees   the   search   for   opPmal   "matching"   as   an   important   transversal   objecPve:   uncondiPonal   meePng-­‐   welcome-­‐   and   acceptance  of  the  paPent  in  the  totality  of  his/her  being  at  that  moment.

Among   the   various   possible   behavioural   characterisPcs,   parPcular   acenPon   is   given   to   the   following: ! respect,  esteem,  uncondiPonal  posiPve  trust  in  the  person  and  in  the  person's  potenPal;   ! listening,  acenPon,  empathic  recepPvity ! posiPve  consideraPon  of  Pme  and  waiPng  periods   ! congruity,  transparency     ! creaPvity

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On  the  other  hand,  we  try  to  avoid  any  type  of  negaPve  behaviour;  shupng  himself/herself  off   from  the  rest  of  the  world,  rigidity,  impaPence,  hurry,  acachment  to  a  certain  role,  emoPonal   distance,  inconsistency,  scarce  authenPcity.

At   a   technical-­‐instrumental   level,   as   we’ll   see   in   details,   among   the   various   rehabilitaPve   techniques  of  our  centre  there  is  one  parPcular  treatment  that  sees  the  associaPon  of  music   therapy,  neuropsychology  and  psycho-­‐tacPle  contact. The  neuropsychology  potenPals  are  here  integrated  with  the  psycho-­‐tacPle  methods  that  are   rich   of   well-­‐being   as   based   on   the   best   affecPve   and   confirming   contact   levels,   and   with   the   great  potenPals  of  music  as  beauty  and  moPvaPon. The  fusion  of  these  treatments  is  not  casual  or  forced:  the  musictherapist,  on  one  side,  during   his  work  looks  for  a  good  contact  with  his  paPent  in  order  to  create  an  empathePc,  creaPve   and  agreeable  atmosphere,  on  the  other  side  he  bases  his  work  on  method  and  programme   foundaPons  which  are  similar  to  those  of  the  neuropsychologist.  

! Programming  music-­‐therapy  and  neuropsychology  courses  in  the  acute  rehabilitaPve  

phase  of  post-­‐coma

Specific  ObjecPves

A. Favour  the  restructure  of  self-­‐awareness  (from  the  percepPon  of  ones-­‐self  to  the   reconstrucPon  of  self-­‐image  and  body  percepPon); B. Re-­‐educate   the   acenPon   span   and   methods   to   favour   the   restructure   of   space-­‐ Pme   orientaPon   in   a   way   that   the   paPent   finds   meaning   to   that   which   happens   within  and  around  him  in  relaPon  to  Pme  and  space;   C. Favour  the  restructure  of  an  acachment  reacPon  to  obtain  good  emoPonal  well-­‐ being  in  relaPon  to  the  surrounding  environment  (family,  events,  environment  in   general)  in  a  way  that  improves  communicaPon  and  relaPonships  (  this  last  point   will  be  here  not  thorough)

A.

Favour  restructuring  of  self-­‐awareness;

In  this  first  post-­‐coma  phase,  we  have  seen  that  the  paPent  no  longer  has  his  normal  capacity   to  perceive  and  develop  an  accurate  percepPon  of  his  body.    He  has  lost  his  boundaries  and  is  

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not   aware   of   the   separaPng   lines   or   factors   between   his   body   and   the   environment   and   between  his  body  and  the  bodies  of  others.  

Sub-­‐objecPves ! Diminish  the  intensity  of  the  distorted  bodily  percepPon  through  the  close  modulaPon  of   sensory   sPmulaPon   (we   prefer   to   call   this   sensory   “input”)   and   through   parPcular   acenPon  to  the  changing  method  of  percepPon. ! Favour  bodily  percepPon,  the  development  of  self-­‐image  and  physical  image.

Methods We   know   that   the   body   image   is   the   result   of   a   conPnual   process   of   un-­‐structuring-­‐ restructuring,  which  is  made  up  of  many  forces:  percepPon  and  integraPon  of  percepPon,  the   emoPonal-­‐relaPonship   realm,   and   cogniPve   maturity.   We   also   know   that   posiPve   emoPonal   processes,   as   well   as   being   guiding   factors,   are   the   forces   and   the   source   of   energy   of   the   construcPve   process.   The   experience   strategies   recommended   are,   therefore,   always   permeated  by  gradually  modulated  and  ecological,  posiPve  emoPons  (for  the  paPent-­‐system,   as   well   as   for   the   paPent-­‐operator-­‐sepng   system)   in   order   to   contribute   to   a   healthy   restructure  of  the  boundaries  and  the  perceived  body  form.

Instruments and techniques The  operaPons  are  primarily  based  on  direct  personal  experience  and  on  “the  outside  world”   which   gradually   bring   about   global   reconstrucPon   of   the   self-­‐image   through   the   various   representaPve   methods,   KinePc,   Tactual,   Labyrinth,   Hearing,   Visual   (we   will   not   elaborate   at   this  point,  however,  smell  and  taste  methods  are  used  as  well).

We   don’t   believe   that   it   is   superfluous   to   keep   in   mind   that   the   paPent,   most   of   the   Pme,   relates  with  his  body  as  a  source  of  pain  and  a   door  open  to  intrusions;   therefore,  whenever   necessary,   it   is   important   to   choose,   from   a   neuropsychological   point   of   view,   pleasant   and   healthy  experiences  with  an  abundance  of  acceptance  and  empathy.    In  this  way,  between  the   individuals  involved,  a  posiPve  climate  is  created  as  well  as  a  healthy  base  for  the  development   of   energy   and   moPvaPon,   and   the   paPent   is   inclined   to   accept   a   renewed   image   of   himself   with  a  posiPve  aptude,  by  perceiving  the  process  as  a  source  of  well-­‐being.   Any  contact  with  the  paPent  geared  toward  the  acquisiPon  of  a  self-­‐image  and  body  image  is   made   through   the   psycho-­‐tac2le   methods.     A   method   that   simultaneously   considers   the   psychological   and   neurological   aspects   of   solid-­‐tacPle   percepPon.     During   contact,   in   fact,   consideraPon  is  made  to  how  much  the  skin  plays  the  role  of  psychic  containment  (in  addiPon   to  physical  containment  as  a  anP-­‐sPmulaPon  barrier)  and  self-­‐cohesion.

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Sound   and   music   are   associated   with   psycho-­‐tacPle   communicaPon   so   that   a   process   of   sensorial  experience  integraPon,  which  is  harmonious  and  synergePc  in  an  extremely  pleasant   and  constant  analogy,  co-­‐exists  with  the  paPent.

B.

Re-­‐educate  acenPon  spans  and  methods  in  order  to  favour  the  restructure  of  space-­‐ Pme   orientaPon   in   a   way   that   the   paPent,   through   the   diminishing   distorPon   of   percepPon,  discovers  a  sense  in  that  which  occurs  within  and  around  him  in  Pme  and   space;  

Just  as  our  paPent  has  un-­‐structured  the  image  of  the  body  and  bodily  funcPons,  at  the  same   Pme,   the   confines   of   space   and   Pme   outside   of   him   loose   their   order;   that   structure   so   reassuring   and   important   to   enable   awareness,   in   every   moment,   of   where   we   are   and   the   moment  of  life  that  we  are  living.  

Methods Provide  acracPve,  beneficial,  pleasant,  interesPng,  family-­‐oriented  experiences,  while  placing   considerable  acenPon  on  structuring  them  within  space  and  Pme  in  a  way  that  is  saPsfactory   to   the   needs   and   the   capabiliPes   of   the   paPent.   (See   the   studies   of   Berlyne   on   reacPons   of   acceptance  and  refusal  and  on  the  integraPon  of  visual,  sound  sPmulus,  etc.  in  Imberty  1986).   It   is   difficult   to   make   exaggerated   mistakes   if   we   present   simple   experiences   that   are   well   ordered  in  their  organizaPon  simply  due  to  the  orientaPon  and  “stabilizing”  properPes  of  such   methods.  For  example:  with  the  use  of  a  musical  Pme  frame  around  the  event-­‐encounter  (for   example:  classic  songs  at  the  beginning  and  end  of  the  meePng),  in  our  case,  it  is  extremely   important  that  the  music,  eventual  lyrics,  sound  characterisPcs  (tone,  pitch,  etc.)  be  presented   in   an   idenPcal   manner   as   much   as   possible   at   each   successive   meePng   and   for   as   long   as   possible  (it  will  be  the  paPent  who  manifests,  in  his  own  way,  the  desire  to  introduce,  novelty   to   the   rhythm,   and   when   this   occurs   it   should   be,   without   a   doubt,   interpreted   in   a   very   posiPve  way  from  an  evoluPonary  point  of  view  of  the  new  growth  process). In  addiPon,  each  gesture,  occurrence,  and  situaPon  must  be  presented  with  verbalized  space-­‐ Pme  references.    Likewise,  the  sepng  must  be  accurately  chosen,  organized  and  made  familiar   in  a  way  that  provides  an  addiPonal  possibility  of  orientaPon. In   our   experience,   analogy,   congruence   and   the   synergy   of   the   various   sPmuli   are   very   important  in  aiding  the  acenPon  span  and  focus. The   symbolic   significance   (and   producPon   of   associaPons)   of   music   finds   its   origins   and   meaning   in   the   interiorised   sensory-­‐motor   acPvity;   above   all   in   posture,   gestures   and   body   movements  and  exploraPon.    Therefore,  each  sound-­‐music  event  insPgates  our  listening  to  the   representaPon  of  rigid  and  non-­‐rigid  posture  and  the  kinePcs  produced  by  the  general  aspects   29


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of  the  sound.    The  kinePc  and  kinesics  informaPon  are,  in  fact,  the  most  evident  among  the   sources  of  musical  significance. For   this   reason,   mulP-­‐sensorial   work   that   associates   music,   psycho-­‐tacPle   contact,   and   movement   is   extremely   efficient,   because   this   naturally   elicits   analogies   and   harmony   that,   due   to   their   characterisPcs,   are   pleasant   and   moPvaPonal   for   us   all;   the   result   will   be   an   increase  in  the  acenPon  span  an  its  intensity. … This   paper   has   been   shortened   for   ediPng   reason.   Please   contact   me   in   order   to   have   the   complete  script. dario.benap@alice.it

Author and Music Therapist: Dario Benatti - Milano - Italy

MUSIC THERAPY FOR PATIENTS WITH SERIOUS SPINE INJURIES, PATIENTS WITH CHRONIC PAIN, PATIENTS IN A COMA AND TERMINAL PATIENTS

Music Therapy Research Centre “Arpamagica” - Milano www.arpamagica.it

Author and Music Therapist: Emanuela Ritrovato - Milano - Italy Music therapy, a discipline fairly recent compared to its theoretical models and clinical applications, is actually a form of healing that has very ancients roots, since the time of Hippocrates: the good doctor believed in the use of music as an effective support to the treatment. Its use is also found in several myths as well as in traditional cultures and even today

the music is

an essential element

of

care.

Its power to calm down the passions of the soul, or to excite them, has always

been recognized in the history of mankind. Only in the ‘50s the music was conceived as a therapy with specific rules and aimed at specific diseases, especially in the field of psychiatry, and the first healing attempts in this field start with Pinel and Esquirol. If psychiatry has always been a privileged field for the use of music therapy because of its power to affect the mood and the suffering of the patients, 30


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gradually this form of therapy has been applied to a larger number of contexts, such as pedagogy, rehabilitation and also to treat degenerative diseases (Alzheimer) in patients with severe spinal cord injury, with chronic pain, and terminally ill. Actually music therapy in such delicate contexts plays the important role to

create a listening space, where the patient through a different mode of communication (non-verbal) can communicate, express and share with the music therapist his difficulties, his suffering and possibly find a meaning in this. Music does not ask for anything and doesn’t give explanations, but gives the patient the opportunity to be with in a neutral space crossed only by sounds and music, his own music (music is a very individual experience as all patients are different individuals) and release tension, recall memories, even forget for a moment his tiring existential condition. Music therapy gives voice to feelings, fears, desires the patient can’t neither communicate nor share as they would be too painful and intimate to express with words: music itself shares and cares where feelings and emotions seems to be silent. Music Therapy and rehabilitation – Emanuela Ritrovato Project “Botteghe d’Arte” at ex-psychiatric hospital Paolo Pini, Milan Period: 2008-2009 Goal: using the Music Therapy inside the Spinal Unit, where patients were hospitalized there after the acute phase in order to start a rehabilitation program. Method: one session a week. “I worked mainly on the voice (in some cases the voice was just a breath), through a repertoire of songs chosen by the patient, so that we could have a link with their affective memory. This starting point was very important to establish a contact that might be the beginning of a relationship. The instruments were a piano, an amplified microphone (this was very useful in the case where the voice was compromised) and songbooks. My colleague was instead a receptive music therapy, that is his point of attention was listening. He worked both proposing a number of songs he felt useful and accepting the proposals of the patients. 31


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These two modes were very interesting because one reinforced the other: in the most active part, the patient was called to work on his remaining possibilities, making him understand that he can do something, that even in such difficult situations his own creativity can not be only recovered but also reinvented. In the most passive part, the patient was called to listen in a deeper way: listening to the tracks was the beginning to get in touch with his pain and sorrow. Of course there was also the element of recreation and relaxation, but the most important goal was to bring out that problematic content that would not emerge through just an interview. At the beginning of the project we worked with small groups, but going forward with the experience we realized that it would be more sensible and useful to do individual works. In fact for this kind of patient it is hard to consider the needs of the others and this is quite understandable, as the sense of anger and depression is such that everyone needs that their inner world has a specific listening space. The results were very interesting especially with a little girl who was able to express her fear through a fairy tail we invented together as well as the music we played to tell it. In this way the fear decreased and the little girl began to stay alone in her bedroom. In other cases, patients, after many sessions, could mention the incident and speak about all the emotional stress caused by it, not in order to describe a fact but to face their emotions, fears and desires. The aspect of our laboratory the patients liked most was the freedom to express themselves in a very creative way. Also ex-patients who had heard about the initiative joined the laboratory.�

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3.2 WORKSHOPS DEVELOPED BY EXPERTS AND MUSIC THERAPISTS DURING THE TRANS-E-VISION MEETING IN BAZZANO International Meeting

Bazzano (Italy)

20 – 22 April 2012

Workshops Music therapy Theatre Therapy + Psycho-Touch Therapy

Preliminary considerations People who are facing the last phase of their life (because of age or illness) experience enormous difficulties about communication, both objective (for zero or reduced functionality of the phonetic) both due to psychological and emotional blocks. The feeling of not being understood leads to a state of distrust towards others and distrust towards one’s own resources, until a sad devaluation of the existence. Therefore it is necessary to find ways of communication beyond the conventional language of words or gestures. The music in these cases is the ideal language, thanks to its ability to engage people in the physical and emotional barriers and opening rational processing sensory channels that connect people to a more sincere and profound level. Music can facilitate relaxation as well as stimulate the energy, can bring forth memories or activate new imaginary.

But above all, it allows people to come together in an area of emotional sharing, where mutual listening is also confirmation of existence of the other, of his/her value and warranty support. When we explore the sensory universe, our physical abilities have less importance than our emotional side: in this way people can approach each other without fear of judgment or failure.

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In the meeting we recognize ourselves as beings with feelings, memories and needs, all worthy of respect and care. And all of them bring a positivity that we can experience in everyday life, thanks to the dimension of well-being that is generated by the music (Musictherapy in the particular) and all those arts that can be used in a caring relationship. Among these arts there are Theatre Therapy and Psycho-Touching Therapy, disciplines that are united by a focused use of the musical component and a working methodology based on the consideration that the human being is a single entity of bodily sensations, emotional and cognitive skills. Music therapy Workshop Designed and hosted by Laura Francaviglia and Cristian Grassilli

        Targets: Experience a kind of non-verbal communication related to the use of sound to understand how it is possible to enter into a relationship with people who do not have the opportunity to express themselves through the use of the words. For this reason, in the proposed activities verbal instructions have never been used. Performance: The participants were divided into two groups arranged in a circle. While one group was observing, the other was following the task. Then the two groups exchanged roles.

!

Presentation as song. Each participant has invented a short melody with which he/she sang his own name. The rest of the group, having heard, repeated with the same intensity and pitch the name of each participant as they were pronounced.

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!

Using voice. Everyone has introduced him/her self with a sound of his/her voice.

After that the group created a sound producing simultaneously free sounds.

! Exploration of a musical instrument. Everyone introduces his/her self to the

group with a sound of a musical instrument. ! Instrumental improvisation. Reusing the sounds emerged during the

presentations and the exploration of the instruments and voices, the group interacted freely with the sounds of the voice and instruments, seeking out opportunities to meet melodic and rhythmic music to build a free form of group expression.

Theatre Therapy + Psycho-Touch Therapy Workshop - afternoon Designed and hosted by Silvia Melis, Greta Scaglioni and Cecilia Fumanelli

Targets: To create a climate of trust in order to experience the contact with each other as communication beyond words and as an opportunity to listen to and support the real needs of the other. Performance: ! Pre-expressive warming exercises (designed and conducted by Silvia Melis and Greta Scaglioni) Listening to different kinds of music with free movement in space. The songs were selected considering a scale of rhythm and atmosphere (from the most to the slower rhythm) which allow the people of the group to move closer to each other gradually and in a playful way with others. 35


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The physical contact reached listening to the last track was therefore seen as a natural spontaneous goal of the participants. ! Psycho-tactile experience (designed and conducted by Cecilia Fumanelli) The central part of the workshop was divided into two parts. In the first participants were divided into pairs and have settled sitting back to back. This type of physical contact was facilitated by the accompaniment of a musical track that has stimulated and encouraged the listening to each other through the breath, the perception of tensions and softness of their partner. Further, the music stimulated a contact with their emotions aroused by such an unusual experience. The contact has been twofold: with others and with one's inner self. The next step took place again in pairs (not the same) and in this case the participants have been asked to use the back of the other as if it were a palette, above which they could paint (using the fingers) images inspired by the sounds. In particular, were offered two kinds of music: one for relaxing and one activating. For “relaxing” we mean a song with pulse below 60 beats per minute, which correspond to those of the heart; on the other hand “activating” is a song that exceeds 60 beats per minute. The decision to propose two very different music meant to emphasize that there is no music that fits everyone: just listening to the needs of the other you can find the most suitable music (or let the patient choose it when it’s possible) to accompany him to other types of perception of his/her body tone. Also in this case the experience was "listening while listening": the one who painted could be inspired by the music but at the same time had to remain in contact with the reactions and needs of his/her partner. Physical contact, mediated and facilitated by a shared music source, is the ideal way to communicate to those who are in difficulty that they do exist, that the presence of the other is a guarantee of sincere listening and respectful help. "I hear you and touch you because you exist and I want to support you." Conclusion: Even the final part of the workshop had two phases. The first was a verbal report in which the members-divided into small groups- shared impressions and feelings. The final one was coral and led by the music therapists: having chosen a song known by all (“Brother Martin”), the group sang it in different languages of the participants 36


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(English, German and Italian) until we reached a choir in which everyone sang the same song but using our own language.

“Music is communication beyond words”

3.3 PALLIATIVE CARE AND VOLUNTEERING VIP- LIVE POSITIVELY – THE CLOWN THERAPY

VIP-ITALY- Onlus is the federation that connects and coordinates 52 VIP associations spread throughout the Italian territory, with its 4,000 volunteers in more than 150 Italian hospitals. Why VIP? Facing life together, accepting it in all its aspects. Viviamo In Positivo (Let’s Live positively) means to learn, develop us and bring to others what can help them to live better off. Rediscover your inner child, develop imagination, creativity, the ability to see the positive things, joy, harmony, openness, acceptance, and other positive emotions. These are the qualities that allow us to become "bearers of joy", that enable us to transform the atmosphere of the places where there is discomfort and stimulate other people with the same feelings that animate us. Inside the hospitals we propose in a very simple way a simulation of circus arts and humorous improvisation that creates a sort of fantasy world, which the little patient is invited to join to get carefree moments, and this can make his/her hospitalization easier. Creating a world of fantasy the clown transforms the environment, awakening

the

creativity and hope they need to cope with pain, degradation, disease, loneliness. Playing the role of the clown is a moment of joy for us: our mission is to bring joy where you live in difficulty. With our clown character we really become children, we play, have fun, laugh, cry, sing and make magic, we interact and establish friendly relations immediately.

The training Being a Vip volunteer clown means receiving a standard training to acquire the same expertise and supply the same service in any part of Italy. Our training continues

with

a

steady

practice.

The training we receive stars from playing in order to activate mind, body and 37


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spirit. We develop technical and artistic skills to convey positive emotions and qualities such as acceptance, welcoming, sharing, listening, armony. The Association VIP- Live positively! Is a non-profit organization located in Modena, and as all the other Vip organizations in Italy its activities are free. We receive donations by donations of bodies and individuals and implement fundraising activities on the streets. Precisely for this reason, once a year, all the VIP associations meet the people on the streets to spread positive thinking as a philosophy of life with the "National Red Nose Day" this is only fundraising event that Italy Vip organizes to support its projects and the training of its volunteers. National website : www.vipitalia.org Modena branch website : www.vipmo.it mail VIP Modena: info@vipmo.it

A  MIRACLE  in  EMILIA  ROMAGNA:    THE  ANT  FOUNDATION  OF  BOLOGNA www.ant.it

The ANT Foundation started in 1978 in Bologna as the National Association for the Study and Treatment of solid tumors. The main reason that prompted the founder, prof. Pannuti, to found ANT was the need to ensure that cancer patients discharged from the hospital had the opportunity to be followed in a specialized way even at home, with a continuum of care provided by experienced people, in collaboration with the general practitioners, and completely free of charge. For Professor Pannuti the Eubiosia, that is living with dignity, is a fundamental right of every human being from the moment of conception until death. The term of Greek origin, meaning "good life" indicates "the set of qualities that give dignity to life," until the last breath. The ANT mission is to guarantee the cancer patient quality and dignity of life in the most difficult time of the disease. The acronym ANT, Associazione Nazionale Tumori (National Cancer Association), in English means also the insect ant: a real coincidence if you think that the strength of ANT are volunteers who, like hundreds of ants, work quietly and generously in the name of solidarity, supporting the Foundation with 38


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activities of fundraising, logistical support or helping medical staff in the care of the patients at home. At the time of its foundation, ANT edited in just ten short statements the "philosophy" of the new association, a code of ethics that is the base of its activities. 1. You will consider Life as a sacred and inviolable value. 2. You will consider Eubiosia (the good-life, life-in-dignity) a priority to achieve day in day out 3. You will welcome natural death as a natural conclusion of Eubiosia. 4. You will consider each disease event as reversible. 5. You will fight your pain (physical, moral and social) and the others’ with the same commitment. 6. You will consider all your fellows as brothers and sisters. 7. The suffering person requires your understanding and your solidarity, not your pity. 8. Always avoid excesses. 9. Give your help even to the family of the patient and do not forget them even "after". 10. Our major achievements would be nothing without the support of so many people. One year after its foundation, ANT opens the Laboratory for Research on the Pharmacokinetics and Metabolism of anticancer drugs (ANT-Lab).

GLI  AMICI  DI  LUCA  AT  “CASA  DEI  RISVEGLI  LUCA  DE  NIGRIS”  IN  BOLOGNA www.amicidiluca.it

The association Amici di Luca ("Luca’s friends") trains and provides volunteers for The House of Awakening Luca De Nigris, a center for treatment and rehabilitation for people with severe brain injuries (see item 2.1) According to his/her background or skills, every volunteer operates in different areas: in the laboratory of expression (music therapy, theater in the therapeutic situation) as assistant to the patient to facilitate communication: reading books or newspapers, watching videos/photos, listening to recorded or live music, walking outdoor, and so on. Volunteers work side by side to professionals (trainer, music therapist, theater operator) who carry out their activities within their theme projects designed for 39


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the needs of each patient. These professionals cooperate with trained volunteers to perform the projects (as operators or bystanders), and together with them form the working group that plan the activities, manage and activate systems to monitor and assess the activities. The activity of the volunteers is coordinated and planned by a professional trainer. The association takes care to provide volunteers with ongoing training through meetings and seminars on specific aspects of rehabilitation and supportive relationship. L'  APPROCCIO  AL  MONDO  DEL  POST-­‐COMATOSO  IN  STATO   "DI  MINIMA  RISPOSTA"2 Author and Music Therapist: Dario Benatti - Milano – Italy

dario.benap@alice.it

Questo   scrico   è   dedicato   in   parPcolare   a   tup   coloro   che   conoscono   o   vivono   in   streco   contaco   con   una   persona   in   stato   di   coma   o   post-­‐coma   che   perdura   da   lungo   tempo   come   sindrome  da  incoscienza  prolungata  e  desiderano  aumentare  le  proprie  possibilità  di  entrare  in   contaco  più  profondo  col  proprio  caro  o  il  proprio  amico,  in  modo  da  potergli  essere  più  vicini,   come  sostegno  ed  aiuto  nel  dolore  e  nella  paura,  così  come    nella  speranza  e  nel  desiderio  di   guarigione.  

Per   chiarezza   e     perché   il   lecore   ne   possa   avere   una   maggior   comprensione   dividerò   la   tracazione   in   due   parP:   una   prima   parte   riguardante   la   situazione   del   tuco   parPcolare   e   propria  nella  quale  si  viene  a  trovare  il  post-­‐comatoso  ai  vari  livelli  neurologico,  intellepvo  e   relazionale   nella   fase   acuta   riabilitaPva,   una   seconda   parte   che   offrirà   indicazioni   di   comportamento  e    spunP  circa  le  modalità  per  un  ideale  approccio  

Il  mondo  del  post-­‐comatoso  nella  fase  acuta  riabilitaPva

Il    post-­‐comatoso  di  cui  parlerò  è  una  persona  che,  superata  la   fase  acuta  rianima3va  del  coma,   ovvero  il  coma  profondo,  è  entrata  in  quella  che  si  può  definire  la   fase  acuta  riabilita3va  deca   anche   prima  fase  del  risveglio,  che  può,  per  inciso,  essere  anche  lunga  o  lunghissima  (è  il  caso   dei  pazienP  che  rimangono  per  anni  in  uno  stato  vegetaPvo  o  di  "minima  risposta"),  ed  è  stata   dimessa  dal  reparto  di  rianimazione  o  anche  dall'ospedale.  

2

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Premesse Il   lecore   tenga   sempre   presente   che   quanto   scriverò   nelle   parP   che   riguardano   l'   in&mo   del   post-­‐comatoso,  la  sua  situazione  psichica  e  la  sua  percezione  del  mondo  interno  ed  esterno  è   basato  su  una  lunga  esperienza  e  su  studi  approfondiP  da  parte  di  molP  esperP,  tucavia  i  daP   non  sono  generalizzabili  in  toto:  ognuno  di  noi  è  unico    e  diverso  nella  salute  e    ancor  di  più   nella  malapa.   Darò     un   nome   (per   me   ha   anche   un   volto)   alla   persona   descrica,     invece   di   dire     "le   caracerisPche   del   post-­‐comatoso"   dirò:   le   caracerisPche   di   Andrea   in   stato   di   post-­‐coma.   In   questo  modo  saremo  tup  facilitaP  nel  vedere  e  senPre  il  malato  come  una  persona  e  non  solo   come  un  caso  clinico.   A  voi  cambiare  il  nome  con  quello  del  vostro  conoscente  e  l'aggiunta  alla  descrizione  di  quei   trap,   quelle   caracerisPche   uniche   ed   imprescindibili   che   lo   contraddisPnguono   al   momento   acuale   (ricordando   le   difficoltà   di   interpretazione   del   comportamento   dece   più   sopra),   ma   anche  quelle  che  gli  erano  proprie  prima  del  coma.

Andrea

Andrea   è   in   stato   di   post-­‐coma,   da   tempo   ha   superato   la   fase   acuta   rianimaPva   e   lo   hanno   dimesso   dal   reparto   rianimazione   prima,   dall'ospedale   poi,   perché   i   suoi   parametri   vitali   si   sono   stabilizzaP:   respira   autonomamente,   le   sue   funzioni   cardio-­‐circolatorie   sono   stabili,   ha   aperto  gli  occhi  (segnale  che    indica  l'uscita  dal  coma  con  la  ripresa  della  vigilanza  e  del  tono  di   base  dell’apvità  cerebrale),  non  è  però  ancora  accessibile  il  contenuto  della    coscienza  perché   il  ragazzo  non  riesce  a  comunicare  in  modo  adeguato. E'   steso   sul   leco,   per   la   maggior   parte   del   tempo   è   fermo   ma   appare   contraco   e   in   una   posizione   asimmetrica.   Quando   riesce   a   farlo,   Andrea   sa   muoversi   solo   come   un   neonato,   prevalgono  in  lui  i  riflessi  primiPvi,  gli  mancano  le  reazioni  di  raddrizzamento  e  di  equilibrio.   Sul   piano   intellepvo   in   questa   fase   il   fenomeno   più   eclatante   in   lui   sembra   essere   la   dispercezione  (percepisce  il  mondo  circostante  in  modo  alterato)  eccessiva.  Dalle  sue  reazioni   si   legge   che   a   volte   gli   sPmoli   esterni   ed   interni   invadono   il   cervello   e   la   mente     senza   selezione,   senza   filtro,   senza   controllo.   Ad   esempio,   se   un   giorno   trasale   al   minimo   rumore   come  dopo  un  boato,  altre  volte  pare  non  senPre  neanche  i  rumori  più  forP  né  far  caso  alla   luce   o   ai   colori,   anche   se   intensi.   Apparentemente   egli   appare   “congelato”,   immerso   nella   incongruenza   degli   impulsi   visivi,   tapli,   udiPvi,   in   un   caos   senza   tempo   né   spazio,   dove   probabilmente  non  riconosce  né  sé  stesso  né  gli  altri.  A  fronte  di  questo,  naturalmente,  le  sue   capacità   di   acenzione   e   focalizzazione   risultano   minime,   la   dissoluzione   del   pensiero   è   influenzata   da   questa   acenzione   labile,   e   al   contempo   anche   l’acenzione   è   influenzata   dalla   dissoluzione  del  pensiero.   41


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La   memoria   è   parziale   e   caoPca:     Andrea   ha   perso   parte   del   suo   passato   e   quindi   la   collocazione  di  sé  nella  storia  personale  e  collepva,  vive  in  un  presente  che  non  è  suo,  in  una   mente  e  in  un  corpo  che  non  riconosce  come  suoi  e  non  è  più  in  grado  di  comprendere  l'idea  di   futuro.   Un'altra  grande  difficoltà  di  Andrea  sta  nel   comunicare.  Da  una  parte  lo  scarso  controllo  che   ancora  ha  del  proprio  corpo,  dall'altra  parte  la  mancanza  di  autocoscienza  fanno  regredire  le   sue  capacità  di  comunicazione-­‐relazione  a  livello  primiPvo.  E'  bloccato,  confuso  e  contraco  ed   è  difficile  capire  cosa  vuole,  se  sta  bene  o  male,  se  ha  un  dolore  o  semplicemente  vuole  essere   lasciato  in  pace  perché  le  sue  manifestazioni-­‐reazioni  sembrano  sempre  le  stesse.   Solo   con   grande,   grandissima   acenzione   e   tanto   tempo   a   disposizione   si   riescono   a   cogliere   quei   decagli   del   movimento,   del   tono   o   dei   suoni   emessi   che   differenziano   le   emozioni   espresse.   Di   solito   è   la   mamma   di   Andrea,   quando   consapevole   e   non   in   preda   di   emozioni   troppo   forP,   che   per   prima   riesce   a   comprendere   qualche   suo   messaggio   nel   mezzo   del   movimento  caoPco  e  distonico  o  nella  quasi  immobilità  dei  micro-­‐movimenP  di  suo    figlio;  la   guidano  il  suo  isPnto  materno  e  la  conoscenza  profonda  dell'essenza  del  suo  comportamento   fin  dalla  gravidanza.     Lavorare    con  Andrea:  obiepvi  e  metodi

Premesse E'  uPle  premecere  che  ogni  metodologia  e  tecnica  che  segue  deve  sempre    fare  i  conP  con  un   conceco  fondamentale  riguardante  l'uomo  e  la  malapa  secondo  il  quale  le  cause,  il  progredire   di   questa   e     la   guarigione   (o   almeno   l'accecazione   di   ciò   che   la   malapa   ha   comportato)   dipendono,  non  solo  dalle  caracerisPche  oggepve  della  malapa  stessa,  ma  anche  dal    modo   in  cui  la  si  affronta.  Sarà  indispensabile  allora,  sopracuco  nel  nostro  caso,    tenere  in  grande   considerazione   la   personalità   del   nostro   amico,   il   suo   sPle   di   vita,   il   suo   caracere,   la   sua   capacità  di  relazionarsi  con  gli  altri  di  adesso,  ma  anche,  e  qui  avremo  indicazioni  preziose,  di   prima  del  coma.  

Nella   tracamento   del   post-­‐coma   è   opma   regola   generale   ed   uso   comune     che   il   paziente   riceva   sPmolazioni   sensoriali,   visive,   tapli,   acusPche   ecc.   per   permecergli   un   graduale   e   sempre  migliore  contaco  con  l’ambiente.   Acenzione   però,   tuco   questo   è   bene   purché   sia   faco   cum   grano   salis,   tenendo   conto   di   quanto   deco   sopra   riguardo   le   modalità   percepve   alterate   del   nostro   malato   e   di   semplici   regole   fondamentali   di   comportamento,   altrimenP   potremmo   incorrere   in   gravi   errori   di   misura   e   qualità   degli  sPmoli   che   possono   provocare   l’effeco   contrario,   elicitando   in   Andrea   42


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primordiali   isPnP   di   difesa   e   chiusura.     Al   grido   “tup   i   canali   sensoriali   devono   essere   sollecitaP”  potrebbero  venire  infap,  più  o  meno  inconsciamente,    messe  in  aco  vere  e  proprie   torture,   (tremende     anche   per   un   soggeco   sano...)   come:     essere   interpellaP   ad   alta   voce   a   dieci  cenPmetri  dalle  orecchie,  dover  ascoltare  musica  per  ore,  ricevere  la  visita  giornaliera  di   decine  di  persone,  essere  piazzaP  davanP  al  televisore  per  tuco  il  pomeriggio,    ecc..

Cosa  fare?

Ricercare  la  qualità In   ogni   apvità   cerchiamo   quindi,   in   primo   luogo,   di   tenere   in   grande   considerazione   che   il   contaco   con   l'ambiente   deve   essere   curato   nei   decagli   per   essere   di   qualità   prima   che   di   quanPtà!  E'  questo  uno  degli  aspep  più  importanP  per  un  opmale  contaco  con  Andrea,  uno   dei   principali   obie8vi   trasversali,   un   obiepvo   cioè     che   tup   coloro   che   entrano   in   comunicazione   con   lui   dovrebbero   perseguire,   anche   perché   questo   comporta   un   fondamentale   aiuto   per   il   raggiungimento   di     tup   gli   altri   scopi   della     programmazione   riabilitaPva.  

Accogliere  Gli  obiepvi  di  chi  vive  vicino  ad  Andrea  e  naturalmente  quelli  del    programma  di  riabilitazione   stabilito  sono  innumerevoli;  in  grandi  linee,  da  una  parte  riguardano  il  limitare  l'insorgenza  di   danni    secondari  o  terziari  (conseguenP  al  danno  primario  che  ha  provocato  il  coma),  dall'altra   parte   si   prefiggono   lo   scopo   di   condurre   il   ragazzo   verso   una   sempre   maggiore   autonomia   e   autosufficienza,    in  tup  però  si  dovrebbe  ritrovare  un  aspeco  comune:  la  ricerca  di  una  buona   qualità  della  vita.   Per  il  nostro  Andrea,  sopracuco  nella  fase  della  malapa  che    sta  percorrendo,  pensiamo  che   migliorare   la   qualità   della   vita   significhi   principalmente   essere   accolto   il   meglio   possibile   nel   paese  straniero  nel  quale  di  colpo  si  è  ritrovato.  E'  compito  di  tup  e  qui  la  famiglia  e  gli  amici   hanno   un   ruolo   molto   importante   perché,   se   ben   preparaP   e   consapevoli,   possono   essere   molto  efficaci.

Come  fare? Avvicinarsi  con  rispeco In   primo   luogo,   cerchiamo   di   fare   in   modo   che   tup   coloro   che   si   avvicinano   ad   Andrea   assumano   aceggiamenP   e   comportamenP   che,   pur   nelle   diverse   e   personali   modalità   di   approccio,  abbiano  come  denominatore  comune    estrema  delicatezza  e  rispeco. 43


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  In   qualsiasi   nostra   apvità,   ad   esempio,   dovremmo   cercare   di   agire     in   modo   facilitante   ed   acce:ante,  ad  esempio,  tra  i  possibili  aceggiamenP,  possiamo  citare: -­‐rispeco,  sPma,  fiducia  posiPva  incondizionata  nella  persona  e  nelle  sue  potenzialità; -­‐ascolto,  acenzione,  ricepvità  empaPca; -­‐considerazione  posiPva  del  tempo  e  dell’acesa; -­‐autenPcità,  trasparenza; -­‐accecazione  incondizionata  della  persona  nel  suo  stato  acuale; -­‐creaPvità; Tra   gli   aceggiamenP   negaPvi   cerchiamo,   viceversa,   di   evitare:   chiusura,   rigidità,   impazienza,   freca,  acaccamento  ad  un  ruolo,  distanza  emoPva,  incongruenza,  scarsa  autenPcità.

Ascoltare Avviciniamoci  al  nostro  caro,  quindi,  e  mepamoci  in  ascolto    con    "presenza  partecipe",  presto   senPremo  di  essere  in  comunicazione,  in  contaco  con  lui  acraverso  canali    sconosciuP  e  sopli;   sarà  un'esperienza  straordinaria  percepire  il  fluire  delle  emozioni  che    ci  uniscono.   In  questa  ideale  situazione  di  ascolto   empa&co  saremo  in  grado  di  passargli  i   messaggi  posi&vi   accecanP,    moPvanP  di  cui  in  questo  momento  ha  bisogno  come  ha  bisogno  del  nutrimento.   E'   una   modalità   di   approccio,   quella   basata   sull'ascolto   empaPco,   che   presenta   alcune   difficoltà,   una   delle   più   importanP   è   legata   al   dolore   e   alla   sofferenza,   senPmenP   che   inevitabilmente  entrano  in  scena  nella  rappresentazione  dei  senPmenP  di  Andrea:  fanno  molta   paura  e  tup  noi,  naturalmente,   tendiamo  a  evitarne  il    contaco.  Se  vogliamo  un  vero    contaco   empaPco   con     Andrea   dovremo   quindi   prepararci   adeguatamente   a   saper   vivere   come   momenP   di   grande   consapevolezza,   compassione   e   crescita   personale     le   esperienze   della   sofferenza  e  della  paura.

UlPmi  spunP Teniamo     infine   nel   dovuto   conto   che   il   cambiamento,   la   crescita,   lo   sviluppo,   la   guarigione   hanno  bisogno  di  grande  forza  da  parte  di  tup.  E'  indispensabile  che  ognuno  si  dia  da  fare  per   raccogliere  energia  dalle  esperienze  che  sa  più  ricche  per  sé  .   Ricordiamoci   che   molta   energia   ci   è   fornita       dall'acenzione   quoPdiana   verso   noi   stessi   (mi   rivolgo   sopracuco   ai   parenP   strep,   e   in   parPcolare   alle   madri   e   ai   padri),   ricordiamoci     di   avere   una   nostra   vita   con   le   sue   esigenze   (uscire,   prendersi   qualche   ora   di   svago,   mangiare   44


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bene   ecc.)   e   che   se   non   ci   badiamo   perderemo   energia   piucosto   che   trovarne,   a   scapito   di   tup,  sopracuco  del  nostro  caro.  Egli  spesso,  più  che  di  cure,    ha  estrema  necessità  di  avere   vicino  a  sé  delle  persone  che  gli  mostrino  fiducia,  desiderio  vitale,  creaPvità,  entusiasmo  per  i   progressi,   anche   se   minimi;   come   possiamo   dargli   tuco   questo   se   siamo   depressi,   deboli,   stanchi,  demoPvaP,  se ��abbiamo  spremuto  il  nostro  corpo  come  un'arancia  e  non  abbiamo  più   succo?

3.4 BIBLIOGRAPHY BARBAGALLO A.M. (2000), L’improvvisazione nell’armonizzazione dell’handicap:

un’esperienza in un Centro Diurno AIAS di Bologna, in Borghesi M. e VV., Assisi 2000: Musicoterapie a confronto, PCC Assisi, pp. 96-114 BENENZON R. (1984), Manuale di musicoterapia, Borla Roma BENENZON R. (1997), La nuova musicoterapia, Phoenix Roma

BENENZON R., a cura di – AA.VV. (2002), Musicoterapia e coma, Phoenix Roma BENENZON R. (2004), La musicoterapia come alternativa d’integrazione familiare e dell’equipe medica nei pazienti in coma; in Coma e stati vegetativi – Le frontiere della ricerca, Atti del convegno della IV Giornata dei Risvegli per la ricerca sul coma – Vale la pena, a cura de Gli Amici di Luca e L. Trevisani, Bologna ottobre 2002. Alberto Perdisa Ozzano E. (BO), pp. 87-93 BLACKING J. (1973), How musical is man?, University of Washington Press, Seattle-London; trad italiana di D. Cacciapaglia: Come è musicale l’uomo?, Ricordi-Unicopli Milano 1986 BOLELLI R. (2008), La stimolazione sonoro-musicale alla Casa dei Risvegli “Luca De

Nigris” di Bologna; in Musica et Terapia n. 17, Cosmopolis Torino, pp. 30-41 BORGHESI M. – RICCIOTTI A. (2001), Il setting in musicoterapia; in Gli Argonauti n. 89 BRUSCIA K.E. (1987), Improvisational Models of Music Therapy, Charles Thomas Springfield; trad. Italiana: Modelli di improvvisazione in musicoterapia, Ismez Roma CAVALLARI L. (2004), Musicoterapia e coma: primo bilancio di una ricerca; in Coma e

stati vegetativi – Le frontiere della ricerca, op. cit., pp. 111-117 45


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DAMASIO A. (1999), The feeling of what happens – Body and emotion in the making

of consciousness; trad. Italiana di S. Frediani: Emozione e coscienza, Adelphi, Milano 2000 DEMETRIO D. (1996), Raccontarsi.

L’autobiografia come cura di sé. Raffaello Cortina, Milano.

DISOTEO M. e PIATTI M. (2002), Specchi

Sonori. Identità e autobiografie musicali. FrancoAngeli, Milano

DOGANA F. (1983), Suono e senso, FrancoAngeli Milano D’ULISSE M.E. –PICCONI C. – POLCARO F. (2004), Il caso di L. : un intervento di

musicoterapia su un paziente in coma; in Coma e stati vegetativi – Le frontiere della ricerca, op. cit., pp. 104-111 D'ULISSE M. E. - CASIGLIO L. - ANIBALLI F. - ALVISI A. L. - ANGELUCCI E. CAPONNETTO M. G. - CALABRESE R. - PARYLA A. S., Applicazione della musicoterapia a pazienti in stato di coma: uno studio pilota, in Atti del VI Congresso Nazionale ConfIAM - I Convegno Internazionale confronto con i Paesi dell’Est Europa, Trieste / Udine, 22-24 settembre 2006

FRAISSE P. (1974), Psycologie du tythme, PUF Paris ; trad. Italiana: Psicologia del ritmo, Armando Roma 1983 GUSTORFF D. (2001), Beyond word: music therapy with comatose patients and those

with impaired consciousness in the intensive care; in Music Therapy in Europe, Vth price European Music Therapy Congress (Napoli, 2001), a cura di D. Aldrige, G. Di Franco, E. Ruud, T. Wigram, Ismez Roma, pp. 61-72 IMBERTY M. (1981), Les ècritures du temps, Dunod Paris; trad. Italiana : Le scritture

del tempo. Semantica psicologica della musica, Ricordi-Unicopli Milano 1990 IMBERTY M. (1986a), Suoni, Emozioni Significati – Per una semantica psicologica

della musica; a cura di L. Callegari e J. Tafuri, CLUEB Bologna IMBERTY M. (1986b), Il concetto di morte e temporalità nel Wozzeck di Alban Berg, in

Lo Spettacolo, 36/2, pp. 107-136. JONES R. – HUX K. – MORTON-ANDERSON K.A. – KNEPPER L. (1994), Auditory

Stimulation Effect on a Comatose Survivor of Traumatic Brain Injury; in American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation, vol. 75, pp. 164-171 JUSLIN P.N. & SLOBODA J. A. (2001), Music and Emotion: Theory and Research. Oxford: Oxford University Press.

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KOELSCH S. – KASPER E. – SAMMLER D. – SCHULZE K. – GUNTER T. – FRIEDERICI A.D. (2004), Music, language and meaning: brain signatures of semantic

processing; in Nature Neuroscience, vol. 7 n. 3, pp. 302-307, Nature Publishing Group LAURENTACI C. – MEGNA G. (2003), Validità del training musicoterapico in pazienti

in stato vegetativo persistente: studio su tre casi clinici ; in Musica et Terapia n. 7, Cosmopolis Torino, pp. 22-25 MANAROLO G. (2006), Manuale di musicoterapia – Teoria, Metodo e Applicazioni

della Musicoterapia, Cosmopolis Torino MESCHINI R. (2003), L’intervento musicoterapico nelle fasi di recupero dopo il coma; in Musica et Terapia n. 7, Cosmopolis Torino

MESCHINI R. (2006), Analisi della variazione dei parametri fisiologici nel trattamento musicoterapico di pazienti in stato vegetativo; in Atti del VI Congresso Nazionale ConfIAM - I Convegno Internazionale confronto con i Paesi dell’Est Europa, op. cit. POSTACCHINI P.L. (2000), L’osservazione nell’armonizzazione dell’handicap, in: AA.VV., Assisi 2000: musicoterapie a confronto, a cura di M. Borghesi, M.E. Garcia e M. Scardovelli, PCC Assisi, pp. 157-169 POSTACCHINI P.L. (2001), Musica, emozioni e teoria dell’attaccamento; in Musica et

Terapia n. 3, pp. 2-13, Cosmopolis Torino POSTACCHINI P.L. (2004), La musica come terapia con pazienti in coma; in Coma e

stati vegetativi – Le frontiere della ricerca, op. cit., pp. 78-87 POSTACCHINI P.L. (2006), In viaggio attraverso la Musicoterapia – Scitti di

musicoterapia, Cosmopolis Torino POSTACCHINI P.L. – RICCIOTTI A. – BORGHESI M. (2001), Musicoterapia, Carocci Roma SARCINELLA M. – POZZI L. – MUTALIPASSI S. – MORONI M. – MATTAZZI L. – CONSONNI M. – BOLELLI R. – BARBAGALLO A.M. (2003), La clessidra sonora.

Metodologia di una ricerca di gruppo; in Quale scientificità per la musicoterapia: i contributi della ricerca, Atti del V Congresso Nazionale di Musicoterapia ConfIAM, PCC Assisi, pp. 33-40 SCARDOVELLI M. (1992), Il dialogo sonoro, Cappelli Bologna

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SCARSO G. – EZZU A. (2003), Terapia sonoro-musicale nei pazienti in coma:

esemplificazione tramite un caso clinico; in Musica et Terapia n. 8, pp. 34-39, Cosmopolis Torino SCARSO G. – ROSSI A. – MASCIA L. – URCIUOLI R. (2003), La musica nella terapia

del coma, Minerva Medica Torino SEIBER P.S. – FEE L. – BASOM J. – ZIMMERMAN C. (2000), Music and the brain:

the impact of music on an oboist’s fight for recovery ; in Brain Injury, vol. 14 n. 3, pp. 295-302, Taylor & Francis Ltd SPACCAZOCCHI M. (2001), Human Music; in Music Therapy in Europe, op cit., pp. 35-49 SPACCAZOCCHI M. (2004), La musica e la pelle, FrancoAngeli Milano STEFANI G. (1982), La competenza musicale, CLUEB Bologna STEFANI G. - MARCONI L. (a cura di)

(1987), Il senso in musica. Antologia di

Semiotica musicale, CLUEB Bologna STEFANI G. – MARCONI L. (1992), La melodia, Strumenti Bompiani Milano STEFANI G. – MARCONI L. – FERRARI F. (1990), Gli intervalli musicali, Strumenti Bompiani Milano

STERN D.N. (1985), The Interpersonal World of the Infant, Basic Books New York; trad. Italiana: Il mondo interpersonale del bambino, Boringhieri Torino 1987 STERN D.N. (1998), Le interazioni madre-bambino nello sviluppo e nella clinica, Cortina Milano

This project has been funded with support from the European Commission. This report reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained therein.

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SPAIN 3.1 MUSIC THERAPY IN SPAIN

Music Therapy in Spain (Sabbatella, Patricia L. (2004). Music Therapy in Spain. Voices: A World Forum for Music Therapy. Retrieved March 18, 2013, from http://testvoices.uib.no/?q=country/monthspain_march2004)

For many people, Spanish music is synonymous of flamenco. However, Spain's autonomous regions have many of their own distinctive folk traditions, and regional styles of folk music within its 17 Autonomous Communities. Some regional styles of folk music are strongly connected to group dances and community celebrations (El Rocio, Feria de Abril, Semana Santa; Los Tambores de Calanda, Sardanas, Romerias Gallegas, etc.). Nowadays pop, rock, jazz and hip hop are also popular. There is also a movement of folk-based singersongwriters with politically active lyrics. The richness of Spanish music and dances are incorporated into music therapy approaches that allow the music therapist to use a wide range of music, rhythms and moods.

Historical Perspective Historical perspective about the therapeutic use of music in Spain has been well documented in literature Sanz, 1991a, 1991b; Poch, 1971; 1993; 1999) and the first references about the therapeutic uses of music dates from the 18th Century. At the beginning of the 20th Century in Madrid, Dr. Candela Ardid organised music related therapeutic experiences at the Sanatorio de la Encarnación; in 1920 he published his experiences in book La Música como medio curativo de las enfermedades nerviosas [Music as a Therapeutic Medium for Nervous Diseases]. These first music-related therapeutic activities, -with psychiatric patients or in healing tarantism-, made important contributions to the historical and theoretical background of Music Therapy in Spain. However, Music Therapy as a Profession was introduced by Serafina Poch (PhD-RMT) in the sixties. She was the first author of a Master`s Dissertation (1964) and a PhD Thesis in Music Therapy (1973) in Spain. As a music therapy pioneer she did several researches in Centers of Education for Children with Special Needs. From 1975 she conducted a music therapy research project at the Consejo Superior de Investigaciones Científicas (CSIC) within the Instituto Español de Musicología (Spanish Institute of Musicology).

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During the seventies a group of educators, musicians, psychologists and physicians interested in the field of Music Therapy (Pilar Lago, Natividad García, Paloma Camacho, Daniel Terán, Francisco Blasco) learned about the discipline and started to empirically apply the principles of the therapeutic use of music in their daily work with patients and students with special needs education. In 1975, the first Introductory Course to Music Therapy was taught by Rolando Benenzon. At the same time, the Spanish section of the International Society for Music Education (ISME-Spain) established a group of study devoted to Music Therapy and promoted numerous courses. In 1977 was founded the Spanish Association of Music Therapy [Asociación Española de Musicoterapia] by Serafina Poch and collegues. The association supports the First National Symposium of Music Therapy (Madrid, March, 28-April, 2, 1977) and the Second National Symposium of Music Therapy (1979). In the eighties Serafina Poch established in Barcelona the Catalonia Association of Music Therapy (Asociación Catalana de Musicoterapia) (1983). At same year, in Vitoria-Gasteiz (Basque Country), Aitor Loroño and Patxi del Campo founded the Center for Music Therapy Research (Centro de Investigación en Musicoterapia). Both associations offered an important number of activities related to Music Therapy. In 1986 Patxi del Campo established the Escuela de Musicoterapia y Técnicas Grupales (School of Music Therapy and Group Techniques, today known as Asociación Música, Arte y Proceso) in Vitoria-Gasteiz, and Aitor Loroño founded in Bilbao the Centro de Investigación Musicoterapeútica (Music Therapy Research Center), in 1987. Both Music Therapy Centers started the first private training programmes in Music Therapy in Spain, establishing permanent relationship with national and international private and public organisation involved in music therapy.

During the 1990s, particularly after the VII World Congress of Music Therapy held in Vitoria (1993), there was an increasing interest in Music Therapy both as discipline and as profession. Professionals in related fields trained in music therapy started music therapy activities and/or music-related therapeutic activities, most of them, in private clinical practice in the field of special education and psychiatry. The interest in music therapy training growth and Music Therapy Seminars and Introductory Workshops have been held in Universities (Universidad de Cádiz, Universidad de Barcelona, UNED, Universidad de Valencia, Universidad Jaume I, Universidad Blanquerna), Private Institutes (Centro de Investigación Musicoterapéutica, Música Arte y Proceso) and organised by Music Therapy Associations. Simultaneously, different music therapy training programs were offered by Universities and Private Institutes (see Training Programmes). In the latest nineties' the interest of Spanish professionals in Music Therapy increased significantly among those who work in the field of special education, elderly people, patients with Alzheimer's disease, neurological rehabilitation and psychiatry. Different music therapy programmes started at Private and Public Institutions. As consequence of the interest in the field of music therapy and the need to establish a music therapy professional community, many Music Therapy Associations were founded in Spain in the latest nineties and in the beginning of the XXI Century (see Links and Contacts). 50


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Theoretical Foundations Over the past three decades most initiatives related to Music Therapy have been developed in an informal and non-official manner, in public or private institutions. Although, Music Therapy in Spain is still a professional activity in the preliminary stages of establishing itself as a recognised profession. Results of a research conducted by the author show that in Spain the origin of the different approaches and theoretical orientations to music therapy clinical practice is a consequence of multiple elements:  Cultural: Some Spanish music therapists come from different schools and different countries that hold degrees issued by foreign universities.  Academic: Theoretical orientation of clinical practice is related to music therapy training and orientation of teacher staff. In Spain there are a lot of courses in music therapy carried by foreign professors. On the other hand, literature available provides a way to understand music therapy as a discipline and the impact on clinical practice.  Professional: Spanish music therapists adapt theoretical bases for their work according to their area of work (education, psychotherapy, medicine).  Geographic: Sometimes the cities where Music Therapy projects are being developed are far among them.

This situation doesn't promote interchange and professional contact. In Spain theoretical orientation of Music Therapy clinical practice is eclectic, based on active methods and in the principles of Benenzon Music Therapy. The main media used are percussion instruments, voice, and body. More frequently techniques used are listening to music, instrumental improvisation and body movement with music. Assessments of clients present an informal approach and no standardised assessment tools are used. Areas of assessment and evaluation of clients include musical and nonmusical behaviours. Descriptive reports are used to present assessment results (Sabbatella, 2003).

Working Areas Music Therapy in Spain is still a professional activity in the preliminary stages of establishing itself as a discipline and an officially recognised profession. Right now there is a growing demand of music therapist for the fields of Special Education, Geriatric Music Therapy, Neurological rehabilitation, Psychiatric and Medical Music Therapy. Currently, most Spanish music therapists are working privately, but some of them lead projects in Public Institutions specially related to research. 51


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Following, there is a list of public and private institutions that offer activities related with music therapy at different levels of clinical practice. -

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Private Centres of Music Therapy Clinical Practice: Instituto Música, Arte y Proceso: Vitoria-Gasteiz; http://www.agruparte.com Centre Clinic de Musicoterapia: Barcelona; http://www.musicoterapia-ccmt.com Centre de Musicoterapia: Barcelona: http://home2.worldonline.es/cmtbcmtb Centro Musicoterapia Benenzon: Madrid E-mail: abaco@ya.com Centro de Investigación Musicoterapéutica: Bilbao; http://www.itg-rpg.org Instituto Catalán de Musicoterapia: Barcelona; E-mail: nuriescude@yahoo.es Private Institutions that offer Music Therapy: Asociación Down Huesca (Huesca - Down's Sydrome) Asociación Familiares de Alzheimer del Baix Llobregat (Barcelona - Alzheimer) Asociación de Familiares y Amigos de Enfermos de Alzheimer (Alicante – Alzheimer) Fundación Maria Wolf (Madrid - Alzheimer disease) Asociación de Padres de Niños y Adultos Autistas (Málaga - Autism) Asociación Nuevo Horizonte (Madrid- Autism) Asociación Parálisis Cerebral (Alicante - Cerebral Palsy) Asociación Parálisis Cerebral (Madrid - Cerebral Palsy) UPACE: Unión de Padres de Alumnos con Parálisis Cerebral (San Fernando, Cádiz - Cerebral Palsy) ESCLAT: Asociación para personas con parálisis cerebral (Barcelona - Cerebral Palsy) Fundación ONCE (Valencia - blind / vision impair persons) ARAPDIS: Asociación para la Rehabilitación, Ayuda Psicológica e Integración Socio-laboral del Discapacitado (Barcelona - adults psychiatric clients) Centro de Psicoterapia de Barcelona (Barcelona - adults psychiatric clients ) PYFANO: Asociación de Padres, Familiares y Amigos de Niños Oncológicos de Castilla y León 52


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(Salamanca - paediatric oncology) Public Institutions that offer Music Therapy: ! Escuela Municipal de Música "San Martín de la Vega" (Madrid-Special Needs Education) ! Hospital Infantil "La Paz" (Madrid - paediatric oncology, CUI) ! Centro Ocupacional "Ciudad Lineal" (Madrid- Adults with Handicaped) -

Associations The Spanish Association of Music Therapy [Asociación Española de MusicoterapiaAEMT] was established in 1977 by Serafina Poch and colleagues, and was the first one in Spain. During the eighties the AEMT have played a significant role in stimulating interest in music therapy and served as a connection between professionals. During the eighties and beginning of the nineties several Music Therapy Associations were founded in different regions of Spain (see Links and Contacts). In 1992, the need of coordinate forces let a professional group to create the Coordinadora Nacional de Musicoterapia (National Music Therapy Committee). Its existence was limited and it turns off quickly. From that moment the initiatives related with Music Therapy were developed with poor contact between the professionals and the associations.

In September 1998 the need for merge efforts and to establish a set of criteria and unified basement for the development of Music Therapy in Spain promote a meeting in Madrid of a group of professionals. In this meeting was considered to reactivate the "Coordinadora Nacional de Musicoterapia" (National Music Therapy Committee) and/or to create a stable organisation targeting to coordinate the activities developed around Music Therapy Associations in Spain. Assistants to the meeting agreed to organise a new meeting in Madrid on February 2nd, 2000, in order to create the "Federación Española de Musicoterapia" (Spanish Music Therapy Federation). On September 9th 2000 were approved the articles of the Federation. A new meeting was arranged for February 9th 2001 to sign the foundational documents (Terán, 2000). Finally the Federation was not constituted (lack of quorum and unified criteria) In opinion of the author, the failed attempt to construct a Spanish Music Therapy Federation and the absence of a political direction for the national development of Music Therapy promoted the proliferation of Music Therapy Associations in different regions of Spain with the objective to represent themselves in the field of Music Therapy. According to this, the characteristic of Music Therapy in Spain during the nineties, and until the present moment, was the lack of communication and contact among professionals (see Links and Contacts).

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Links and Contacts Music Therapy Associations !

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Asociación Española de Musicoterapia (AEMT) (1977) C/ Pedroñeras 2 Bajo. 28043 - Madrid. Tel: + 34 - 91- 3883058 Fax: + 34 - 91 - 3201177 - Email: teranfd@hotmail.com Asociacion de Profesionales de Musicoterapia (APM). (1997), Apartado de Correos 1549. 01080 - Vitoria - Gastéiz. 635 - 282370 http://www.musicoterapia-apm.org - Email: apmus@hotmail.com Asociación Cultural de Musicoterapia De Almería (1994), Avda. Mediterráneo. Edificio Parque Luz 248 - P 7 - 04006 - Almería. Asociación Gaditana de Musicoterapia (AGAMUT) (1999), Apartado de Correos 555 - Cádiz. http://www.agamut.org - Email: secretaria@agamut.org Asociación Aragonesa de Musicoterapia (1999), Apartado de Correos 10375. Zaragoza. Tel: 630-479203 Asociación de Musicoterapia, Docencia e Investigación del Principado de Asturias (1999), C/ Foncalada 5, 1º Pta 5 - 33002 - Oviedo. Email: marina@netcom.es Asociación Catalana de Musicoterapia (ACMT)(1984), C/ Vinya del Forn, 16 - 08635 - St. Esteve Sesrovires - Barcelona. +34 937714818. http://www.xarxabcn.net/acmt/. Email: spoch@ctv.es Asociación Hispanoamericana Musicoterapia Aplicada (1987), c/ Europa 16, 1º-2º - 08028 - Barcelona. Tel / Fax: +34 934301708. Email: Lamdors@mx2.redestb.es Asociación Castellano-Leonesa para el Estudio, Desarrollo e Investigación de la Musicoterapia y Arteterapia (ACLEDIMA) (2001), Apartado Postal N° 2026 (37005) Salamanca http://www.acledima.org Email: info@acledima.org Asociación Canaria de Musicoterapia (1994), C/Luis Benitez Inglott 32 18º A - 35011 - Las Palmas de Gran Canaria. Tel /Fax: +34 928202447 - Email: jose.acmt@wanadoo.es Asociación Independiente Para la Divulgación de la Musicoterapia (AIDMT) (Madrid) (1998), C/ Blasón 1 C, 3º 2ª Madrid. Tel: +34- 91 – 4654207 54


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Centro de Investigación en Musicoterapia y Comunicación No - Verbal del Mediterraneo(AMME) (2000), C/ Manresa 4, 2ºC - Murcia. Tel / Fax: +34- 968 - 223679. Email: musicoterapiacimm@ono.es Asociación Música - Arte y Proceso (MAP) (1995), Apartado de Correos 585. 01080 Vitoria - Gastéiz. http://www.agruparte.com - Email: espemap@correo.cop.es Centro de Investigación Musicoterapéutica - Bilbao (MI-CIM) (1986), c/ Alameda Mazarredo 47-2º - 48009 Bilbao. http://www.itg-rpg.org - Email: itg@netaldea.es Asociacion Valenciana de Musicoterapia (AVMT), C/ Dr. Waksman 19 - 28º- 46006 - Valencia http://www.metamedia.es/avmt/ - Email: Francisco.Blasco@uv.es

Music Therapy Training Programs Public Universities ! Universidad Autonoma de Madrid. Curso Superior de Formación en Musicoterapia. Coordinador: Cintia Rodríguez; Alicia Lorenzo, MT http://www.uam.es ! Universidad de Barcelona. Curso de Postgrado / Master en Musicoterapia. Coordinator: Nuria Escudé, MT http://www.ub.es ! Universidad de Cádiz. Curso de Experto Universitario en Musicoterapia. Coordinator: Patricia Sabbatella, PhD, MT http://www.fueca.org/wf/formacion/formacion.asp / http://www.uca.es ! Universidad Nacional de Educación a Distancia (UNED). Curso de Formación del Profesorado: Música y Salud - introducción a la Musicoterapia. Coordinator: Pilar Lago Castro, PhD http://www.uned.es Private Universities ! Universidad Católica San Antonio - Murcia. Coordinators: D. Demetrio Barcia Salorio, PhD; Mª Ruth Romero Carndona, MT http://www.ucam.edu ! Universidad Pontificia De Salamanca. 55


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Coordinators: Imanol Bageneta Messeguer, PhD; Luis Alberto Mateos Hernández, MT. http://www.eulv.es ! Universitat Ramon Llull. Postgraduate/Master Program in Music Therapy: Coordinador: Melissa Brotons, Ph.D., MT-BC. http://www.blanquerna.url.es

Private Institutes ! Centro De Investigación Musicoterapéutica (CIM-Bilbao). Coordinator: Aitor Loroño, MT http://www.itgrpg.org ! Música, Arte y Proceso. Coordinator: Patxi del Campo, MT http://www.agruparte.com ! Musitando. Coordinator: Isabel Luñanaky, MT http://www.musitando.org ! Fundación Mayeusis. Coordinator: Prof. Rolando Benenzon http://www.mayeusis.com

Future Trends At the beginning of this century there is still a great deal of work to do in Spain in order to obtain a professional development and academic recognition of Music Therapy. To obtain this purpose is necessary to plan a united action between Music Therapy Associations, Universities and Private Institutes in order to promote professional interchange and to create unified criteria that allow: ! To create a solid background to include Music Therapy in different professional

and academic contexts. ! To establish unified criteria and standards for Music Therapy training that leads

to an official Master in Music Therapy according the rules of EHEA. ! To increase the quality of the professional practice in different working areas by

professional trained Music Therapists. ! To elaborate an ethic code of the professional practice according to the EMTC

and the WFMT guidelines. ! To increase the quality and quantity of research in Music Therapy.

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Reaching these objectives will allow Spanish Music Therapy to develop its own professional identity and a concept of the therapeutic use of music according Spanish cultural background increasing the quality in the professional practice in different working areas.

Spain lives actually a good moment for professional and academic consolidation of Music Therapy. The future is in the Spanish Music Therapists’ hands.

4.2 BEST PRACTICES

PYFANO Association of Parents, Families and Friends of Children with Oncology disease from Castile and Leon

When a child is diagnosed with a Cancer disease there is a major impact on both the child and the parents and provokes a set of circumstances that make grow our distress as we do not know how to deal with them, but often this reaction is unnecessary because there might be solutions. In order to help the families find these solutions Pyfano is qualified and experienced enough to guide them and advice them. The recourses of the association cover different areas as social, psychological, educational, etc. As best practice for the needs of the project Trans-e-vision (Music Feels the End of Life) we’ll focus on the Psychology Area. Its aim is to provide care and psychological support to the sick children and their families. There is a special Psychosocial Support Programme developed (inside and outside the Hospital).

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Videos of the Pyfano work in music therapy could be seen at:  VÍDEO 1: http://www.youtube.com/watch?v=e7Zij8G322M

 VÍDEO 2: http://www.youtube.com/watch?v=j2NT8u_aE1I

IN THE HOSPITAL THERE ARE SERIES OF ACTIVITIES: ( 1 ) Family Café: This is a programme that is in collaboration with the ASCOL association in a small room located on the 4th floor of the University Hospital. The volunteers prepare a coffee for relatives attending oncology and hematology ill children and adolescents. This aims to promote communication between families, patients and volunteers. It also provides the information and guidance they may need at any time.

( 2 ) Relaxation: One day per week, the association ASCOL performs a relaxation programme. The families of children and adolescents are invited to participate in it. The programme is carried out through visualization exercises, breath control or modern techniques. After relaxing the participants are in optimal conditions to free their emotions or to express their fears, difficulties, etc… After relaxation, they form a support group where family members share not only their problems but also resources to solve them.

( 3 ) Music Therapy: It is a process established by a qualified music therapist, trying to promote communication, relationships, learning, movement, expression, organization and other therapeutic objectives. The use of music therapy for children with cancer helps build selfconfidence and personality, giving the opportunity to explore and express emotions and feelings, helps to improve the stress, reduce anxiety and depression, trying to improve the quality of life of the sick person. The Music Therapist goes weekly to the hospital and with the parents’ consent makes individual sessions with onco-hematology children.

( 4 ) Games and crafts: 58


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Volunteers come daily in the evenings to play or do crafts with the kids. This time is used by the parents as what is called "Family Respire", when they go for a walk, to buy something, or just to refresh their mind. They are invited at this time to participate in the games and crafts workshops that are held or either at the Family Cafe.

Ni単o Jesus Hospital Pediatric Palliative Care Unit

The goal of the Pediatric Palliative Care Unit is to attend all pediatric patients of the Community of Madrid in terminally or lethal disease prognosis, in the place where they live, and offering 24-hours care. The Unit aims to improve the care and quality of life of patients (infants, children or adolescents) in terminal or lethal prognosis disease and their families, in a comprehensive and personalized form, ensuring respect for their dignity and their right to autonomy. Operating since February 2008, the unit was established as a multidisciplinary team that provides the patients with lethal prognosis disease or terminal situation, and also, their families, the best care for living with the disease the most human and dignified way as possible until death occurs, helping them to accept, assume and integrate the fact of the death in their lives. In 2009 the Unit was awarded the Quality Award of the National Health and Social Policy System, in the category of Innovation in Global Quality Improvement, granted by Ministry of Health and Social Policy. In 2010 received the award Right Foot, granted by the radio Cadena 100, and the Award for Excellence in Palliative Care of the Community of Madrid, awarded by the Madrid Health Service. The last two awards were: The Best Ideas of 2011, in the management category, awarded by Medical Journal and ALGOS Gr端nentahl Award, for the work against child pain, delivered during the celebration of the III International Conference on Infant Pain. 59


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The Hospital Ni単o Jesus is, within the Spanish, European and world hospitals, pioneer in introducing into its services entertaining and educational activities oriented to complete the health care received by hospitalized children. Inside the Hospital there is a theatre that is open every day at six in the evening, to give way to a performance of magic, puppets, music, clowns, storytelling, etc...

Recreational and educational activities are intended to create a dynamic, creative and participatory atmosphere to encourage the hospitalized child, fostering relationships with other children. Thereby breaking the "isolation" which produces hospitalization, it blocks the occurrence of negative thoughts and helps to forget the pain. These activities ultimately try to make normal the hospitalization process and not traumatic the child. To allow recreational and educational activities, the Hospital Ni単o Jesus has gone progressively allocating human and financial resources, as well as creating specific spaces for their development (children's theatre, educational and leisure classrooms), normalizing and regulating actions that occur during the 365 days of the year. The company provides attendance also to parents and patients 24 hours a day in individual activities available in the room when the child can not move, or group, in the theatre and common spaces. The parents of the patients are happy for all recreational activities that are performed in the Hospital. Seeing how their children, despite of being sick, laugh and play with other children, makes them support better the disease. It helps the children become stronger to fight the disease and feel more cheerful. It is a 60


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closed circle. All together - sick child and family should feel better in order to suffer as little as possible. It is really impressive to see how the clowns or the magicians are able to make smiling the parents of children very serious ill. No doubt, it is a therapy for all. For a while they are able to forget the harshness of the illness of their children and make it a little more bearable.

The Niño Jesus Hospital has become thus a necessary and indispensable reference for other hospitals in Spain, which have been gradually incorporating these experiences to their activity.

Volunteering: Volunteerism has become more professional and specific programs supported by the hospital, continue acting as highly positive for children and families. There are many volunteers who have worked with the hospital staff and who have spent many years and many hours, keeping special memories on the kids. They are part of our history. Without the help of volunteers could not have been possible many entertainment activities giving illusion, hope and happiness to our children. Thanks to NGOs which began at the Hospital of the Niño Jesus, as the Red Cross hospital entertainment program, the Theodora Foundation “smile performing doctors” who visit rooms of hospitals in Spain, etc. All days come many people who belong to different associations, foundations and other non-profit entities, formed by people who devote their time and care to hospitalized infants, children and adolescents. This group of people undoubtedly makes this hospital special, which many patients and parents keep in their memory.

Art-Therapy: Maria Fernanda workshops All of us have experienced throughout our lives, times and circumstances in which we have been unable to express our problems or feelings through words, sometimes because they are not enough, sometimes because we are convinced that we will not understand or because we will be unable to convey our thoughts and especially our feeling, or just do not want to share in those moments and we look for a form of expression to free us from the tension or our internal contradictions and problems and then is when a pencil, a brush, a sheet of paper, let it fly our imagination and let your creativity free, unattached, without criticism, no rules, makes use all of our physical and mental energy, balancing our being in that conjunction of creative mind and body. In this sense that art is mixed with therapy, is what we call Art-therapy as a mean to achieve the best patient responses to their problems and physical limitations, enabling them through the combination of creativity and motor skills, improving progressive both their physical and motor impairments. 61


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While artistic expression in the therapeutic field has been used for the detection of problems through graphics tests, the incorporation of art as a vehicle for rehabilitation through creativity, and therapeutic use of artistic expression is only implemented in Europe in a few hospitals with very advanced sense of healing the whole patient.

The Art-Therapy has been used for 15 years in the Ni単o Jesus Hospital to treat diseases related to disorders food and body image (anorexia and bulimia), addictions (drug addiction, etc.), social maladjustment mental disabilities (Down syndrome) and has recently been extended to physical and motor deficiencies (rehabilitation). The patients are children who are old enough to play and play involves a situation spontaneous, not forced, a relaxing activity, not stressful and creative and through the language of art and their fantasy world in which they create a table or an enamel or ceramic, in short, in the framework of a "Craft", unique and unrepeatable, where what is created in addition to beauty is health.

Mireia Serra i Vila Music therapist working at the hospital

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The palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Music therapy is the professional use of music and its elements as an intervention in medical, educational, and everyday environments with individuals, groups, families, or communities who seek to optimize their quality of life and improve their physical, social, communicative, emotional, intellectual, and spiritual health and wellbeing. Research, practice, education, and clinical training in music therapy are based on professional standards according to cultural, social, and political contexts.

The Hospital Environment: There are 30 (thirty) beds - 20 single and 5 double rooms. In 2011 there were 530 patients with medium stay of 17 days.

Team:

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Doctors, Assistants, Physic therapists, pharmacist, Cleanser, Pastoral, Music Therapist, Social Worker, volunteers...

Methodology: !

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Derivation to therapy: from medical meeting + families meeting + patients’ request In the therapy are used live & personal music, appropriated instruments with approximate duration of the session 30 – 45 minutes The sessions could be individual or in group and could take place in the patient’s room or other hospital spaces

Most used techniques: ! ! ! ! !

Play and improvise Sing Composition / song analysis Music and Movement Listening

Types of music: ! ! ! !

Live music, principle of ISO Musical history of the person Clima-sound (surround, download) Letter or symbolic images

Musical aspects: ! ! ! ! ! ! !

Tonality (Major, minor) Compass (binary, ternary) Intensity (mezzo-forte piano) Harmony (I-IV-V) Instruments used (Mt / patient / family) Musical style Pieces chosen

Register of the therapy:     

No. of patients / carers Age, sex, pathology Techniques worked Musical aspects Comments 64


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Objectives worked: ! Relax the patient or the carer ! Facilitate emotional expression ! Improve mood, distract ! Support accompaniment, strengthen the link ! Saying Goodbye Our aim is the patient to relax and die relaxed, also the family to relax and say goodbye; while the family is waiting the death confirmation to distract them and create caring social environment. Important only is here and now. We intervene in a punctual moment of the person’s process of life. We have to think in: ! Provide meaning (in the present and through the time - changing) ! The personal history of each one, images, beliefs ... ! The accompaniment from the Music therapy One song could be interpreted in different sessions, with different members of the family and the same patient‌ and even at the funeral.

Some final considerations: 2. 3. 4. 5. 6. 7.

Here and now Give and receive See beyond the appearance Accompany from love, life, happiness Motivation – meaning relation Personal experiences

8. Not be afraid from our own death/life 9. Personal skills 10. Respect 11. Active listening 12. 13. Silence 14. Empathy 15. Non verbal communication 16. Expression of emotions; Do not leave ours for the end 17. Music as element facilitator, intermediate 18. Connection with the heart 19. Musical skills

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Often are being interpreted vocalizations, whispers, Lullaby, religious songs, symbolic songs, songs of life, love and joy.

MĂšSIC THERAPY - Palliative care area data

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PERIODO Días  de  intervención: Pacientes:          Hombres          Mujeres

1-­‐10-­‐2009/31-­‐12-­‐2011 1-­‐01-­‐2012  /  31-­‐10-­‐2012 219 111

TOTAL  2009-­‐2012 330

527 264 263

273 145 128

800 409 391

Cuidadores   (total):          Hombres          Mujeres

1.285 473 1.758

640 218 422

1.925 691 2.180

Total  ParPcipantes: (Pacientes  +  cuidadores)

1.812

913

2.725

1.421 1.357    (95,49%) 302    (132  H;  170  M)  1.055  (497  H;    558  M)

819 805  (98,3%) 234    (102  H;  132  M) 571  (231  H;    353  M)

2.240 2162  (96,51%) 536  (234  H;  302  M) 1.626

64 22 17 9 16

7  (1,7%) 10 3 0 1

71 32 20 9 17

0,9 6,9 2,7 22,20%

0,8 7,4 2,9 28,75%

0,85 7,15 2,8 25,50%

6  horas  /  semana 12  horas  /  semana

12  horas  /  semana

12  horas  /  semana

Nr.   Intervenciones:          Musicoterapia:                    Individuales                  Grupales          No  musicoterapia:                    FAM  no  quiere                    PC  no  quiere                    Situaciones  coyunturales                  No  registrado

media  cuidadores  /  sesión:   media   interv./dia*:   media  sesiones  /  paciente:   individuales   representan: Horas  dedicación:          1  nov'09  -­‐  feb'11          desde  1  marzo'11

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4.3 LINKS TO VIDEO MATERIAL VÍDEO 1:

http://www.youtube.com/watch?v=e7Zij8G322M

VÍDEO 2:

http://www.youtube.com/watch?v=j2NT8u_aE1I

VÍDEO 3:

http://www.youtube.com/watch?v=XHXCkj-GMr8

VÍDEO 4:

http://www.youtube.com/watch?v=1D--W-CWVSc

VÍDEO 5:

http://www.youtube.com/watch?v=V4uYOMxSGQI

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Booklet transevision 2013