„Partizipative Forschung mit Menschen mit Lernbehinderungen1” Dr. Tina Cook, Northumbria University, Newcastle, Großbritannien Workshop der AG Partizipative Gesundheitsforschung am 02. Dezember 2010 im Wissenschaftszentrum Berlin für Sozialforschung Leitung: Dr. Tina Cook Moderation: Prof. Dr. Michael T. Wright TeilnehmerInnen: An dem Workshop nahmen 19 Teilnehmer/innnen aus verschiedenen Bereichen der Gesundheitsforschung und mit unterschiedlichem disziplinärem Hintergrund teil. Ablauf: Dr. Tina Cook referiert zu ihren Erfahrungen in der partizipativen Forschung mit Men-schen mit Lernbehinderungen am Beispiel eines Projekts („Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability“, gefördert durch das National Health Service). Es han-delt sich um Männer mit diagnostizierten Lernbehinderungen, die auf Grund eines Schwerverbrechens in einer für Sie konzipierten Justizvollzugsanstalt leben. Im Rahmen des Workshops werden Methoden vorgestellt, die Menschen mit Lernbe-hinderungen dabei unterstützen, ihre Lebenserfahrungen aktiv in Forschungsprozes-se einzubringen. Dabei werden folgende Themen bearbeitet: 1. Der Zielgruppe soll eine „Stimme“ verliehen werden

Begründungen bisheriger Exklusion sind vielfach vorhanden: • Methodologisch • Durch Vorurteile (Stichworte: unterschätzte Zielgruppe; Komplexität des For-

schungsprozess) • Aufrechterhaltung der Hierarchie-/Kontroll-Ansprüche seitens der Wissen-

schaftlerInnen • Sorge um informiertes Einverständnis (informed consent) – ist die Zielgruppe

mündig (genug)? 2. Zusammenarbeit mit Menschen mit Lernbehinderungen

• Hierzu werden zunächst in Kleingruppen (je drei TN) Ideen zusammengetra-gen, mithilfe welcher konkreter Methoden mit der Zielgruppe partizipativ zu-sammengearbeitet werden kann; dabei wird als Herausforderung / Kernpunkt der Beziehungsaufbau / direkte Kontakt identifiziert; Grenzen der Partizipation Lernbehinderter werden kritisch hinterfragt – Wie weiß ich, das ich verstanden werde? (siehe methodologischer Teil)

• Dr. Tina Cook stellt Aussagen der Literatur zum Thema „Ansprache Lernbe-hinderter“ vor

• Die Rolle der partizipativ Forschenden in Abgrenzung zur Therapeutin / zum Therapeuten wird diskutiert – partizipative ForscherInnen sind hier „nur“ Mode-ratoren / Vermittler (facilitator) eines gemeinsamen Forschungsprozesses und erheben keinen therapeutischen Anspruch

3. Authentische Partizipation (Methode und Methodologie der Partizipation) 1 Researching with people with learning difficulties: approaches for informed collaborations.

• Als Veranschaulichung fertigen die Teilnehmenden (aufgeteilt in Gruppen) ei-ne mind map zum Thema „olympic games“ an – ähnliche Methoden finden Anwendung in der partizipativen Zusammenarbeit mit der Zielgruppe

• Dr. Tina Cook betont, dass derart offene Methoden ertragreicher sind als Kon-sultationsmethoden; eine gleichberechtigte Beteiligung der TeilnehmerInnen wird durch Vielfalt von Methoden (Blogs, Fotografie, mapping-Methoden etc.) auf persönlicher Ebene sichergestellt

• Erkenntnisse können verdichtet werden, indem analog zur Delphi-Methode in dialogischer Befragung und Abstimmung mit der Zielgruppe Verständnisfehler minimiert werden

4. Glaubwürdigkeit (Validität) der Forschungsergebnisse

• Vermeintliches Wissen (z.B. über die Zielgruppe) wird in Frage gestellt • Validität kann mithilfe der catalytic validity beschrieben werden: ist eine Ver-

änderung a) in unserem Denken, b) in Form von Ausdrucksmöglichkeiten der Zielgruppe

5. Übergreifend diskutierte Inhalte

• Rolle der partizipativ Forschenden als Störung bestehender Machtansprüche (z.B. durch Personen oder Institutionen ausgeübt) – dieses „Risiko“ muss man eingehen

• Wichtigkeit nicht nur verbalisiertes Wissen, sondern auch nicht-verbalisiertes „Körperwissen“, besonders in der Zusammenarbeit mit Lernbehinderten, ein-zubeziehen

• Grenzen: o Begrenzte Forschungsrahmen (zeitlich, finanziell) erschweren eine

nachhaltige partizipative Forschung (leaving the field) o Begrenzter Einfluss auf gesellschaftliche / politische Rahmenbedin-

gungen, sowohl der Zielgruppe, als auch der BerufsforscherInnen 6. Feedback Die Präsentation von Dr. Tina Cook, die auf Englisch erfolgte, wurde mit großem In-teresse aufgenommen. Sie verdeutlichte anhand der Zielgruppe Lernbehinderter be-sonders deutlich ganz allgemeine Anforderungen in partizipativen Forschungspro-zessen. Mehrere TeilnehmerInnen sehen Anknüpfungspunkte in der partizipativen Forschung mit Demenzerkrankten, auch wenn methodische Grenzen / Möglichkeiten in der Arbeit mit stark geistig Behinderten nicht diskutiert werden konnte. Anlage:

• Folien der Referentin • Prinzipien für partizipative Forschung mit Menschen mit Lernbehinderungen

(Ergebnis des o.g. Forschungsprojekts, erarbeitet zusammen von den Men-schen mit Lernbehinderungen und den Wissenschafter/innen)

• Zwei Literaturlisten

Dr Tina CookNorthumbria University, Newcastle upon Tyne, UK

Historically disabled people have been either included in research without their consent (Freedman 2001) or excluded from research that effects their treatment and care. (Hunt 1966, 1981; Minkes et al 1995; Barnes and Mercer, 1997) 

...for many years research was done by people who had lots of power to say what life experiences they were researching about….And their researchers were called “experts” and they made their careers by researching people who were called “subjects” (Keith –researcher with learning difficulties : diary)

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a methodological struggle to overcome predilections for detachment as a key element of validity attitudinal issues which affect notions of value assigned to contributions made by people with learning difficulties the general perception that the sometimes abstract and often complex notions of research are likely to be beyond the comprehension of people with learning difficulties gate keeping, power and hierarchical issues  concerns about the ability to give informed consent 

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Before people participate in research we have to be sure that they have understood a number of issuesthe notion of research the implications of participating in that research  ‐ie  what might be the effect on themselves of such participationhow the information they offer will be used 

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Identify ways in which you could, or describe ways in which you have, shared information with people in a way that supports them to understand the implications of participation in research PracticalProcessWhat makes your way of doing this effective?

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Practical

Process

What makes your way of doing this effective?

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PracticalInformation sheets with simplified language; Concrete visual aids; pictures, objects, role play scenarios and case vignettes 

ProcessesMultiple modalities;RepetitionQuestioning

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There is much discussion about informed consent to participate in research and who can consent for themselves

Suggestions for supporting informed consent in the literature   (Arscott et al; 1998,Freedman; 2001, DoH; 2001, Fisher; 2003, Wiles et al; 2004). 

UK: Mental Capacity Act 2005 

.......BUT

We actually know very little about what people with learning difficulties understand about research and how to help them improve their understanding.

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‘Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability’ (Cook, T.  and Inglis, P. 2007)

Funded through UK NHS National R&D Programme on Forensic Mental Health Research Funding Scheme.

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have a learning disabilitywere resident in a Medium Secure Unit  

93% of population in MSU have a criminal record  were detained under Mental Health Act (1983)

have a range of diagnoses additional to their learning disability eg schizophrenia/paranoid

have been long stay residents at the hospital

the mean length of stay in the hospital 3.5 years but men in MSU tend to stay longer  than this

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What people with learning difficulties might already know about research

What they needed to know more about to be able to give informed consent

What enables them to know/understand more about it

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Collaborative Action Research

“the study of a social situation carried out by those involved in order to improve both their practice and the quality of their understanding”(Winter and Munn‐Giddings 2001:35)

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i) puts  common understandings to the test by revealing multiple perspectives/different stories about the same issue.  This  supports the unearthing and synthesis of complex and varied meanings and the identification of new/unexpected outcomes ii) acknowledges all participants as experts in their own field. it values all voices and contributions (which is not the same as being taken as fixed or absolute).

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It may well be supported by external facilitators.Facilitators role is not to provide a fixed framework or pathway to be followed, nor to be a spectator, but to take an active part in developing the research through supporting critical insight and making space for collaborative meaning making.

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It is a mistake to think that slavishly following the action research spiral constitutes ‘doing action research’.  The most crass of these misinterpretations is the view that a master’s thesis might involve ‘only one cycle’ but a PhD several.  Action reach is not a ‘method’or a procedure for research but a series o commitments to observe and problematise through practice a series of principles for conducting social enquiry. (McTaggert: 1998)

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17

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the interface between the known and the nearly known, between knowledge‐in‐use and tacit knowledge as yet to be useful 

where long‐held views shaped by professional knowledge, practical judgement, experience and intuition are seen through other lenses 

where reframing takes place and new knowing, that has both theoretical and practical significance, arises

facilitates new constructions of knowing that lead to transformation in practice

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Co‐labouring is an activity that involves “...toil, distress, trouble: exertions of the faculties of the body or mind” (Sumara and Luce‐Kapler 1993:393)

goes beyond consultation where participants act as referees, reviewers, panel members,sit on committees, are invited to comment on drafted proposals  or other activities that can be appended to the research process. 

Co‐labouring involves participants in forging new understandings, frameworks, approaches and outcomes for the research.  

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Blumer warned that trying to catch the interpretative process by remaining aloof as a so‐called ‘objective’ observer and refusing to take the role of the acting unit is ‘to risk the worst kind of subjectivism – the objective observer is likely to fill in the process of interpretation with his own surmises in place of catching the process as it occurs in the experience of the acting unit which uses it’ (Blumer, 1969:86)

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Dialogic enquiry (Habermas 1970)

Dialectic –(Winter) ‐but not setting up binarySymbolic interactionismCritical social discourse (Carr and Kemmis 1986)

Tacit knowledge – (Polyani  ‐ Eraut)

Issue: Towards complicity or developing new ways of thinking?

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Semi structured interviewsMore open interviews

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What was thought about the notion of the Olympic Games per se? What was thought about them being held in London?Any other comments?

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What was thought about the notion of the Olympic Games per se? What was thought about them being held in London?Any other comments?

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Co‐labouring disturbs ‐ leads to loss of certainty but provides space for new seeingMultiple viewpoints – Hockney’s collagesCubism: the destruction of a fixed way of looking –fixed positions imply we are standing still – if we are staring we are not really looking

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Research is like finding pieces of the jigsaw…It’s looking over and over again.  Because sometimes if you look at something once you don’t get to see the full picture but when you come back and look at it again you’ll see something different. And the more times you go backward and forward to it, the more you see.  So that’s good. (Alf: researcher and man with learning difficulties )

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Good to find out for yourself but even better to work with others because you:

Find out what others know but you didn’t

Find out what you knew that you had not even realised you knew (tacit knowledge)

Find out how good we are at helping each other understand

once you think you know something you can always find out more about it▪ (Men in research project: 2007)

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“Today he [Keith] said that although he appreciated my contribution he thought the way they all learnt best was when they discussed it amongst themselves.  The reason he gave for this, that he said quite proudly, was that they had learning disabilities and I hadn’t.” (Academic Researcher: diary/fieldnotes)

“If you don’t mind me saying, I’m not being rude, but we can explain it better than you.  You’re good at telling us something but we are better at talking about it.  We know how to talk to each other you know.  We are better at getting it simple – well not simple you know – right for ourselves” (Keith: researcher and man with learning difficulties – taped workshop discussion)

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If your friend wants you to go for a drink and they’ve asked you to go to the pub and… they ask you and you say ‘No, I don’t want to go’, they can think you’ve upset them… [but they have] just misunderstood… but really you just wanted to stay in… [it] makes people feel sad, angry. Answers are important, how we say it.  Let someone know you have thought about it.  Give them an explanation. (Peter: researcher and mane with learning difficulties)

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“Today David said how when tried to explain something to the other men it helped him understand what he was thinking himself and sometimes he realised that there were other things he had not thought of and so telling others helped him.  He was very excited by this revelation”.  (Academic Researcher: diary/fieldnotes)

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“…an active partnership between consumers and researchers in research…We do not mean the use of consumers as the ‘subjects’ of research” (INVOLVE, 2004: 2).

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“ownership, that is responsible agency in the production of knowledge and improvement in practice.... Mere involvement implies none of this and creates the risk of cooption and exploitation in the realisation of the plans of others” (McTaggert 1997:28) 

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“…knowledge constructed without the active participation of practitioners can only be partial knowledge.” (Somekh, 2002:90) 

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One type of information event is unlikely to be enoughInformation needs to be presented in a number of different waysDon’t forget, or under‐estimate, the value of peer supportPay attention to people’s prior understandings of the notion of research Don’t use jargonEngage ‘significant others’ in understanding the research process and supporting the person with learning disability Enabling understanding is a joint enterprise but ultimately the responsibility of researchers.Leave plenty of time and allocate sufficient resources for the process of ensuring informed participationDon’t rely on the prospective participant asking questions as a means of identifying understanding or lack of it.Pay particular attention to being able to “say no” to research Don’t worry if it seems like it might be hard work – that’s the way it is, but that can be fun tooMake sure it is fun.

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Four of the men have gone on to get accreditation at A level standard (10 credits) for their work, have become facilitators of a programme for other men in the hospital who wish to learn about research and have been advisers for the methodological development of a number of other research projects 

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Principles for informed participation

One type of information event is unlikely to be enough

People are likely to need more than one engagement with the information before they can understand sufficiently to make a decision about participation

Information needs to be presented in a number of different ways

This does not mean merely changing words and adding pictures. It is not about making things simple, but making them different and appropriate.

Don’t forget, or under-estimate, the value of peer support

Discussion with others, especially peers, is likely to reveal illusory understandings and can offer ways to developing appropriate ways to aid that understanding.

Pay attention to people’s prior understandings of the notion of research

If the concept is alien simplifying language is insufficient to support understanding.

Engage ‘significant others’ in understanding the research process and supporting the person with learning disability

Building relationships with people who know that person well can be important in supporting informed decision making:

Don’t use jargon. But if you do, explain it using the approaches above

Enabling understanding is a joint enterprise but ultimately the responsibility of researchers.

Lack of understanding can be a sign that the researcher needed to give the presentation of information more thought.

Leave plenty of time and allocate sufficient resources for the process of ensuring informed participation

Informed participation has a range of complexities that are unlikely to be addressed by one encounter.

Don’t rely on the prospective participant asking questions as a means of identifying understanding or lack of it.

Prospective participants cannot ask useful questions until they have understood what is being outlined.

Pay particular attention to being able to “say no” to research

The importance of explaining why you might want to say no to participating in research, and the consequences such a decision, is not generally well understood

Don’t worry if it seems like it might be hard work If planned carefully intellectual challenges can be exciting and fun - especially for people with learning difficulties.

Make sure it is fun. This makes information more accessible and increases people’s inclination to tackle complex issues in relation to agreeing to participate. It makes it better for everyone.

Principles for informed participation in research

Authors: Tina Cook, Pamela Inglis, Men and Staff of the MSU

Some references that might be of interest

Atkinson, T & Claxton, G. (2000) The Intuitive practitioner: on the value of not always knowing what one is doing. Open University Press. Buckingham.

Altricher, H., Posch, P. & Somekh, B. (1993) Teachers Investigate their Work: An Introduction to the Methods of Action Research, London, Routledge.

Arscott, K. Dagnan, D. Kroese, B.S (1998) Consent to psychological research by people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities 11 pp77–83. Barnes and Mercer. (Eds) (1997) Doing Disability Research (Leeds, Disability Press). Blumer, H. (1969) Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: Prentice Hall. Carr, W., and S. Kemmis. 1986. Becoming critical. Education, knowledge and action research. Lewes: Falmer.

Cohen, L ; Manion, L & Morrison, K (2000) Research Methods in Education (5th edition), London, RoutledgeFalmer

Cook, T (2009) The Purpose of Mess in Action Research: building rigour through a messy turn. Educational Action Research 17( 2) 277-292. Cook, T and Inglis, P (2009) Making our own decisions: researching the process of ‘being informed’ with people with learning difficulties Research Ethics Review. 5 (2) pp49-55 Cook T and Hess, E. (2007) What the camera sees and from whose perspective? Fun: methodologies for engaging children in enlightening adults. Childhood 14(1) pp29-46 Cook, T. (2004) Starting where we can: using action research to develop inclusive practice. International Journal of Early Years Education 12 (1) pp 3-16 Cook, T (2004) Reflecting and learning together: action research as a vital element of developing understanding and practice, Educational Action Research 12 (1) 77-97. Cook, T. (1998) The Importance of Mess in Action Research. Educational Action Research, 6 (1) pp93 108 DoH (2001) Valuing people: a new strategy for learning disability for the 21st century. London: The Stationery Office, 2001. Available at http://www.archive.official-documents.co.uk/document/cm50/5086/5086.htm

Elliott, J. (1982) Action-Research: A framework for self-evaluation in schools. Working Paper No.1 in R. Winter (1989) Learning from Experience: Principles and Practice in Action-Research. Sussex: The Falmer Press. Elliott, J. (1991) Action Research for Educational Change: developing teachers and teaching. Buckingham: OUP. Eraut, M (2000) The Intuitive Practitioner: a critical overview in T. Atkinson and G. Claxton (eds). The intuitive practitioner: On the value of not always knowing what one is doing. Bristol: Open University Press. pp 255-268. Fisher, CB (2003) Goodness-of-fit ethic for informed consent to research involving adults with mental retardation and developmental disabilities. Mental retardation and developmental disabilities research review 9 (1) pp27−31.

Foucault, M. (1980) Power/Knowledge. Brighton, Harvester.

Freedman, R. I (2001) Ethical challenges in the conduct of research involving persons with mental retardation. Mental Retardation 39(2) pp 130−41. Guba, E.G. (1990) The alternative paradigm dialogue in E.G. Guba ed. The Paradigm Dialogue. Thousand Oaks, CA.: Sage pp17-27. Habermas J. (1970) Toward a theory of communicative competence. In Dreitzel H (ed.), Recent Sociology, No. 2, pp.115-48. London:Collier- Macmillan. Harrison, A. & Brandling, J. (2010) Using action research to address the mental health needs of older people: a reflection and discussion of real-world problems. Educational Action Research 18 (2) 255-272. Hart, E. & Bond, M. (1995) Action-Research for Health and Social Care. Open University Press, Buckingham. Hockney, D (1998). A retrospective. New York: Metropolitan Museum of Art. Hunt, P (ed) (1966) Stigma: the experience of disability. London: Geoffrey Chapman,

Jennings, L. & Graham, A. (1996) Postmodern perspectives and action research: reflecting on the possibilities. Educational Action Research, 4 (2): 267-278.

Kemmis, S. and McTaggert, R. (Eds.) (1988) The action research planner. Victoria. Australia, Deakin University Press. Kemmis, S (2001) Exploring the Relevance of Critical Theory for Action Research: Emancipatory Action Research in the Footsteps of Jurgen Habermas, in P. Reason &

H. Bradbury (eds) Handbook of Action Research: Participative Inquiry & Practice. London Sage pp 91-102. Lather, P (1986) Issues of validity in openly ideological research: Between a rock and a soft place. Interchange 17(4) pp 63-84. McMahon, T. (1999) Is Reflective Practice Synonymous with Action Research. Educational Action Research, 7 (1) 163-168.

McNiff, J. (1988) Action Research: Principles and Practice, Basingstoke, Macmillan.

McTaggart, R. (ed) (1997) Participatory Action Research. New York: Albany. Noffke, S and Somekh, B (eds) (2009) The Sage Handbook of Educational Action Research. London. Sage. McTaggart, R. (1996). Issues for Participatory Action Researchers. In O. Zuber-Skerritt (Ed.), New directions in action research (pp. 243-255). London: Falmer. McTaggart, R. (ed) (1997) Participatory Action Research. New York: Albany. Mental Capacity Act (2005) London: The Stationery Office, Minkes, J., Townsley, R.,Weston, C. & Williams, C. (1995) Having a voice: involving people with learning difficulties in research, British Journal of Learning Disabilities, 23, pp. 94–97. Noffke, S and Somekh, B (eds) 2009) The Sage Handbook of Educational Action Research. London. Sage Polynai, M (1958) Personal Knowledge London: Routledge and Kegan Paul. Reason, P. & Bradbury, H. (2001) Handbook of Action Research: Participative Inquiry and Practice. Sage, London. Somekh, B. (2002) Inhabiting Each Other’s Castles: towards knowledge and mutual growth through collaboration, in: C. Day, J. Elliott, B. Somekh & R. Winter, Theory and Practice In Action Research: some international perspectives. UK: Symposium Books pp79-104.

Stenhouse, L. (1975) An Introduction to Curriculum Research and Development. London, Heinemann.

Sumara, D.J., and R. Luce-Kapler. 1993. Action research as a writerly text: Locating colabouring in collaboration. Education Action Research 1, no. 3: 387–96.

Wiles, R., Heath, S., Crow, G and Charles, V (2005) Informed Consent in Social Research: A Literature Review ESRC National Centre for Research Methods NCRM Methods Review Papers NCRM/001

Whitehead, J. (1989) Creating a living educational theory from questions of the kind, 'How do I improve my practice?' Cambridge Journal of Education. 19 (1): 41-52. Winter, R. (1989) Learning From Experience. Principles and practice in action research, Lewes: Falmer Press. Winter, R. & Munn-Giddings, C. (2001) A Handbook for Action Research in Health and Social Care, Routledge Winter, R. (1989) Learning from Experience: Principles and Practice in Action-Research. London: The Falmer Press. Winter, R. (2000) ‘Truth or Fiction’: Problems of Validity and Authenticity in Narratives of Action Research. Paper given at the Philosophy of Education Seminar European Education Research Association Conference, Edinburgh. September.

Zuber-Skerritt, O. (Ed) (1996) New Directions in Action Research, London; Falmer Press.

Older people A selection of publications

Adams T. & Clarke C.L. (eds.) (1999) Dementia Care: Developing Partnerships in Practice Balliere Tindall, London. [this book was also published in Japanese 2006]

Cantley, C. and Bowes, A. (2004) Dementia: An inclusive future?, in A. Innes, C. Archibald and C. Murphy (eds) Marginalised groups and marginalised areas of dementia research, care and practice, London, Jessica Kingsley. Cantley, C. and Steven, K. (2004) ‘Feeling the way’: Understanding how advocates work with people with dementia Dementia. The International Journal Of Social Research And Practice, 3(2): pp. 127-143. Cantley, C. and Steven, K. (2004) Editorial. A stronger voice for people with dementia: The role of advocacy. Dementia. The International Journal Of Social Research And Practice, 3(2): pp.115-116. Cantley, C. and Wilson, R. (2002) ‘Put Yourself in My Place: the Design and Management of Care Homes for People with Dementia’. Bristol: Policy Press. Clarke C., Luce A., Gibb C., Williams L., Keady J., Cook A. & Wilkinson H. (2004) Contemporary risk management in dementia: An organisational survey of practices and inclusion of people with dementia. Signpost 9:1;27-31. Clarke C.L. & Gardner A. (2002) Therapeutic and ethical practice: A participatory action research project in old age mental health. Practice Development in Healthcare 1:1;39-53. Clarke C.L. & Keady J. (2001) Getting down to brass tacks: a discussion of data collection with people with dementia. In: Wilkinson H. (ed) The Perspectives of People with Dementia. Jessica Kingsley, London. Clarke C.L. (1999) Taking Partnership in Dementia Care Forward in: Adams T. & Clarke C.L. (eds.) Dementia Care: Developing Partnerships in Practice Balliere Tindall, London. Cook G (2010) Independent days: Why your approach must not disable residents, Nursing & Residential Care, 12 (9) 451-453 Cook G, Stanley D (2009) Quality of life in care homes: messages from the voices of older people. Journal of Care Services Management, 3 (4) 391-407

Cook G, Richardson E., (2007) Older people researchers views of Appreciative Inquiry, AI Practitioner, The International Journal of AI Best Practice, 44-46

Cook G, Klein B., (2005) Involvement of older people in care, service and policy planning: a literature scan, International Journal of Older People Nursing, 14, (3a), 43-47

Keady, J. and Nolan, M. (2003). The dynamics of dementia: working together, working separately, or working alone? In: M. Nolan, U. Lundh, G. Grant and J. Keady (Eds). Partnerships in Family Care: understanding the caregiving career. Maidenhead: Open University Press. Pp.15-32 Keady, J. Clarke, C.L. and Page, S. (Eds). (2007) Partnerships in Community Mental Health Nursing and Dementia Care: Practice Perspectives. Open University Press/McGraw-Hill. Keady, J. Gilliard J, Evers C, Milton S. (1999). The Dial-log study 1: profiling the experiences of people with dementia. British Journal of Nursing, 8 (6): 387-393. Nolan, M., Davies, S., Brown, J., Keady, J. and Nolan, J. (2004). Beyond 'person-centred' care: a new vision for gerontological nursing. International Journal of Older People Nursing, 13(3a): 45-53 Reed J. & Clarke C.L. (1999) Maintaining a Dialogue with Older People with Mental Health Problems in: Clinton M. & Nelson S. (eds.) Advanced Clinical Practice in Mental Health Nursing Blackwell Science, Oxford.

Reed J, Cook G., (2007) Meaningful and effective involvement of older people: a guide for care, health and housing agencies. Counsel and Care publishers,

Reed J, Cook G, Bolter V, Douglas B., (2008) Older people involved in policy and planning: factors which support engagement, Journal of Ageing Studies, 22, (3), 273-281

Reed J, Cook G, Bolter V, Douglas D., (2006) Getting things done: older people making a difference. Joseph Rowntree Foundation

Regnard C, Matthews D, Gibson L, Clarke C, & Watson B. (2003). Difficulties in identifying distress and its causes in people with severe communication problems. International Journal of Palliative Nursing, 9;4: 173-176. Wilson-Brown C, Cook G, Forte D., (2008) The use of narrative in developing relationships in care homes. In Froggatt K, Meyer J & Davies S. Understanding Care Homes: A Research and Development Perspective. Jessica Kingsley Publishers,