Booklet transevision 2013

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)

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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 ([email protected] )

Greta Scaglioni ([email protected] )

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

1 - 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

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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:

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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 CAREBy 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 step-by-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

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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 HospizdienstEinbecker 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…

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

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

- 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- 29335728e-mail: [email protected]: www.volkssolidaritaet-berlin.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

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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

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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.

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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.

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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,

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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

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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 d ie in te rne Organ isa t ion entwicke l ten wi r Le i t fäden , 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,

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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 biographyPersonal experiences with dying, death, grief; reflecPng and dealing with own feelings and emoPon like fear, hope, etc.

Dealing with grief and bereavementWhat is grief? The tasks of mourning. What is helpful and what isn’t to people in mourning? AnPcipatory grief.

Communica3onVerbal and non-‐verbal communicaPon. How to be an acenPve. ConversaPon techniques, empathy, sensiPvity, intuiPon.

Hospice conceptWhat 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 friendsStages 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 personalityAbility and competence in giving and accepPng help. Observing and accepPng limits. Burnout, sources of inner strength, supervision.

Spirituality und ReligionDeath and dying from the perspecPves of different religions. Spirituality. Religious and spiritual tolerance.

Complementary SubjectsPalliaPve 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 A u t h o r a n d M u s i c T h e r a p i s t : R o b e r t o B o l e l l i B o l o g n a I t a l y e.mail [email protected]>

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

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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 historyThe 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

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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

[email protected]

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 psycho-physical 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 psycho-physical 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.

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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

A u t h o r a n d M u s i c T h e r a p i s t : D a r i o B e n a t t i - M i l a n o – I t a l y e.mail [email protected]

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

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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.

ObjecPvesNaturally, 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 methodologyAs 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 recepPvityposiPve 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 techniquesThe 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

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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.

[email protected]

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 a n d e v e n t o d a y t h e m u s i c i s an essent ia l e lement 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,

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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.

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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.

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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

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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 l i fe together, accepting it in al l i ts 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 c o n t i n u e s w i t h a s t e a d y p r a c t i c e .The training we receive stars from playing in order to activate mind, body and

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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: [email protected]

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 d i g n i t y t o l i f e , " u n t i l t h e l a s t b r e a t h .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

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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 out3. 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

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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 [email protected]

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.

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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

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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.

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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

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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 1986BOLELLI 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

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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 1983GUSTORFF 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).

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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 non-musical 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.

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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.

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: [email protected] Centro de Investigación Musicoterapéutica:

Bilbao; http://www.itg-rpg.org- Instituto Catalán de Musicoterapia:

Barcelona; E-mail: [email protected]

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

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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 Musicoterapia- AEMT] 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

Asociación Española de Musicoterapia (AEMT) (1977)C/ Pedroñeras 2 Bajo. 28043 - Madrid. Tel: + 34 - 91- 3883058Fax: + 34 - 91 - 3201177 - Email: [email protected]

Asociacion de Profesionales de Musicoterapia (APM). (1997), Apartado de Correos 1549. 01080 - Vitoria - Gastéiz. 635 - 282370http://www.musicoterapia-apm.org - Email: [email protected]

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: [email protected]

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: [email protected]

Asociación Catalana de Musicoterapia (ACMT)(1984), C/ Vinya del Forn, 16 - 08635 - St. Esteve Sesrovires - Barcelona. +34 937714818. http://www.xarxabcn.net/acmt/. Email: [email protected]

Asociación Hispanoamericana Musicoterapia Aplicada (1987), c/ Europa 16, 1º-2º - 08028 - Barcelona. Tel / Fax: +34 934301708. Email: [email protected]

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.orgEmail: [email protected]

Asociación Canaria de Musicoterapia (1994), C/Luis Benitez Inglott 32 18º A - 35011 - Las Palmas de Gran Canaria. Tel /Fax: +34 928202447 - Email: [email protected]

Asociación Independiente Para la Divulgación de la Musicoterapia (AIDMT) (Madrid) (1998), C/ Blasón 1 C, 3º 2ª Madrid. Tel: +34- 91 – 4654207

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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: [email protected]

Asociación Música - Arte y Proceso (MAP) (1995), A p a r t a d o d e C o r r e o s 5 8 5 . 0 1 0 8 0 V i t o r i a - G a s t é i z . http://www.agruparte.com - Email: [email protected]

Centro de Investigación Musicoterapéutica - Bilbao (MI-CIM) (1986), c/ Alameda Mazarredo 47-2º - 48009 Bilbao. http://www.itg-rpg.org - Email: [email protected]

Asociacion Valenciana de Musicoterapia (AVMT), C/ Dr. Waksman 19 - 28º- 46006 - Valenciahttp://www.metamedia.es/avmt/ - Email: [email protected]

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, MThttp://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.

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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:

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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.

Niño 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 Grünentahl Award, for the work against child pain, delivered during the celebration of the III International Conference on Infant Pain.

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The Hospital Niño 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 Niño 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

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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.

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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 Niño 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:

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

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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. Here and now3. Give and receive4. See beyond the appearance5. Accompany from love, life, happiness6. Motivation – meaning relation7. Personal experiences8. Not be afraid from our own death/life9. Personal skills10. Respect11. Active listening12.13. Silence14. Empathy15. Non verbal communication16. Expression of emotions; Do not leave ours for the end 17. Music as element facilitator, intermediate18. Connection with the heart19. Musical skills

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

MÚSIC THERAPY - Palliative care area data

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PERIODO 1-‐10-‐2009/31-‐12-‐2011 1-‐01-‐2012 / 31-‐10-‐2012 TOTAL 2009-‐2012Días de intervención: 219 111 330

Pacientes: 527 273 800 Hombres 264 145 409 Mujeres 263 128 391

Cuidadores (total): 1.285 640 1.925 Hombres 473 218 691 Mujeres 1.758 422 2.180

Total ParPcipantes:(Pacientes + cuidadores) 1.812 913 2.725

Nr. Intervenciones: 1.421 819 2.240 Musicoterapia: 1.357 (95,49%) 805 (98,3%) 2162 (96,51%) Individuales 302 (132 H; 170 M) 234 (102 H; 132 M) 536 (234 H; 302 M) Grupales 1.055 (497 H; 558 M) 571 (231 H; 353 M) 1.626

No musicoterapia: 64 7 (1,7%) 71 FAM no quiere 22 10 32 PC no quiere 17 3 20 Situaciones coyunturales 9 0 9 No registrado 16 1 17

media cuidadores / sesión: 0,9 0,8 0,85media interv./dia*: 6,9 7,4 7,15media sesiones / paciente: 2,7 2,9 2,8individuales representan: 22,20% 28,75% 25,50%

Horas dedicación: 1 nov'09 -‐ feb'11 6 horas / semana 12 horas / semana 12 horas / semana desde 1 marzo'11 12 horas / semana

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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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Transcript of Booklet transevision 2013