Ph.d. studie

Hvordan kan borgere med demens involveres i forskningsarbejdet? - udvikling af en participatorisk

forskningsmodel

Joint degree PhD, (University College Nordjylland, Aalborg Universitet, University

of Northampton United Kingdom)

Diana Schack Thoft, Lektor, Cand. Cur., sygeplejerske

Formålet med ph.d. projektet

… er at udvikle en participatorisk forskningsmodel

baseret på kvalitativ participatorisk forskning om de livsverdensperspektiver borgere med en tidlige fase af

demens finder vigtige. Ligeledes er formålet at anskueliggøre den refleksion og vejledning, som er

essentiel i udførelsen af participatorisk forskning med borgere med en tidlig fase af demens

VUK

VUK (Voksenskolen for

Undervisning og Kommunikation)

Kompensatorisk special undervisning for unge og voksne

Livslang læring

Mennesker med tidlig fase af demens

Træning og stimulation

VUK, Aalborg Kommune

Metoder

Data indsamlingsmetoder Deltagende observation (felt noter)

Interview (bånd- og video optagelse)

Fokus gruppe (bånd- og video

optagelse)

Analyse metoder Livsverden analyse (Van Manen, 1997; Dahlberg,

Dahlberg, Nyström, 2008)

Tematisk analyse (Braun, Clarke, 2006)

Illustration af projektets faser

Fase 2

Planlægning af træningen

Interviews

Fase 3

Træning og participatorisk

forskningsprojekt

Fase 4

Evaluering af processen

Fase 5

Formidling af resultater

Fase 1

Rekruttering og etablering af tillid

Deltagende observation

Litteratur review (Informerer hele ph.d.

projektet)

Udvikling af en participatorisk

forskningsmodel (foregår løbende gennem ph.d.

projektet)

Det participatoriske forskningsprojekt

(informerer udviklingen af den participatoriske model)

Den participatoriske forskningsmodel

Fase 2

Planlægning af træning og projekt

Fase 3

Træning og projektarbejde

Fase 4

Evaluering

Fase 5

Formidling af resultater

Fase 1

Rekruttering og etablering af tillid

Kernen Samarbejdet og interaktionen

Én proces Minimer fejl risiko Simplificer Prioriter Struktur Repetition Artefakter Spørgsmål Forslag Sprog Støtte

Fokus gruppe Procesevaluering

Overordnet evaluering

Tilpas rekruttering Vurdering af kapacitet

Tilpas samtykke

Baggrundsviden Tilpas projekt og proces

Overskuelig projektgruppe Motivation og ambition

Samarbejdsaftale

Form Layout

Struktur Støtte

Fejring

Tillid Fælles støtte og læring

Uformel Humor

Ledende, undervisende og lærende rolle Magt

Det participatoriske projekt

Definer forskningsprojektet

Formulere forskningsspørgsmål

Rekrutter hensigtsmæssigt

Simplificer forskningsetik

Vælg indsamlingsmetode

Øve valgt metode

Indsaml data

Participatorisk analyse

Klargør data materialet

Overstreg essentielle sætninger

Data clustering

Gentagelse

For krævende?

Formidling af resultaterne

Vælg form og layout

Strukturer formidlingen

Øv formidlingsformen

Støt når der er behov

For krævende?

Fejring af projektets afslutning

Formidling af det participatoriske forskningsprojekt

11

Tak for jeres opmærksomhed

”Det er min oplevelse personligt af det her ikke også. Det er en gave at få nogen der vil arbejde med det her, som kan give os nogle input, som vi siger yes til, og så

har vi også noget at se frem til på den måde. Ja”

Emma, projektdeltager

Dette studie er støttet af Teknologier i borgernær sundhed ved University College Nordjylland

Recruited student

participants

Gender Occupation Type of dementia Marriage status

Student participant 1

(also PhD group)

Male Electrician Alzheimer Divorced

Student participant 2

(also PhD group)

Male Bricklayer Vascular dementia Married

Student participant 3 Male Nursing assistant Alzheimer Married

Student participant 4 Female Nurse Alzheimer Widow

Student participant 5 Female Liberian Alzheimer widow

Student participant 6 Male Auditor Unspecific dementia Married

Student participant 7 Male Pedagogue Unspecific dementia Married

Student participant 8 Female Teacher Alzheimer Widow

Student participant 9 Male Director Unspecific dementia Married

Student participant 10 Male Engineer Vascular dementia Married

Student participant 11 Male Lifeguard and security Alzheimer Married

Student participant 12 Male Trade union Unspecific dementia Married

Student participants MMSE- score Reflection over the score in relation to the teacher advocates´ clinical judgement

Student participant 1 29 Score in line with clinical judgement

Student participant 2 30 Score in line with clinical judgement

Student participant 3 25 Score in line with clinical judgement

Student participant 4 24 This person performed surprising well. It was evaluated, the test suited earlier

working qualifications and experiences.

Student participant 5 % This person normally could explain date and year for her birthday which was not

possible in the test. She got emotional, and the test was not completed.

Student participant 6 14 Score in line with clinical judgement

Student participant 7 22 Score in line with clinical judgement

Student participant 8 29 This person performed surprising well. It was evaluated, the test suited earlier

working qualifications and experiences.

Student participant 9 % This person normally could explain date and year for his birthday, which was not

possible in the test, making him stressed and angry with himself. The test was not

completed.

Student participant 10 % This person had vascular dementia, resulting in problems with verbal formulation.

He got emotional, and the test was not completed.

Student participant 11 26 Score in line with clinical judgement

Student participant 12 30 Score in line with clinical judgement

References

ALZHEIMER EUROPE, 2013-last update, The ethical issues linked to the perceptions and portrayal of dementia and people with dementia - Ethical issues in practice - Ethics - Alzheimer Europe. Available: http://www.alzheimer-europe.org/Ethics/Ethical-issues-in-practice/The-ethical-issues-linked-to-the-perceptions-and-portrayal-of-dementia-and-people-with-dementia [3/22/2015, 2015]. BARTLETT, R., 2012. The emergent modes of dementia activism. Ageing & Society, , pp. 1-22. BERESFORD, P., 2005. User involvement, research and health inequalities: developing new directions. Health & Social Care in the Community, 15(4), pp. 306-312. BERGOLD, J. and THOMAS, S., 2011. Partizipative Forschungsmethodn: Ein methodischer Ansatz in Bewegung Participatory Research Methods: A Methodological Approach in Motion Métodos de investigación participativa: Una aproximación metodológica en movimiento. Qualitative Social Research, 13(1),. BOOTE, J., 2002. Consumer involvement in health research: a review and research agenda. Health policy, 61(2), pp. 213-236. BROWN, P. and ZAVESTOVSKI, S., 2004. Social movements in health: an introduction. Sociology of health & illness, 26(6), pp. 165-181.

References

CONDER, J., 2011. Reflections on a participatory project: the rewards and challenges for the lead researchers. Journal of intellectual developmental disability, 36(1), pp. 39-48 CORNWALL, A. and JEWKES, R., 1995. What is participatory research? Social science & medicine, 41(12), pp. 1667-1676.

DAHLBERG, K., DAHLBERG, H. and NYSTRÖM, M., 2008. Reflective lifeworld research. 2 edn. Lund: Studentlitteratur.

DARLING, E. and PARRA, M.A., 2013. Involving patients and public in research. Nurse researcher, 20(6), pp. 21-25.

DEMENTIA ALLIANCE INTERNATIONAL, 2014-last update, - Dementia Alliance International. Available: http://www.dementiaallianceinternational.org/ [3/22/2015, 2015].

DEWING, J., 2007. Participatory research: A method for process consent with persons who have dementia. Dementia, 6(1), pp. 11-25.

DUPUIS, S.L., GILLIES, J. and CARSON, J., 2012. Moving beyond patient and client approaches: Mobilizing authentic partnerships in dementia care, support and services. Dementia, 11(4), pp. 427-452.

References

ELSTAD, T.A. and EIDE, A.H., 2009. User participation in community mental health services: exploring the experiences of users and professionals. Scandinavian Journal of Caring Sciences, 23, pp. 674-681. GRAHAM, N., LINDESAY, J., KATONA, C. and ET AL, 2003. Old Age Psychiatry section, World Psychiatric Association: World Health Organization. Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. International Journal of Geriatric Psychiatry, 18(8), pp. 670-678. HELLSTROM, I., 2007. Ethical and Methodological Issues in Interviewing Persons With Dementia. Nursing ethics, 14(5), pp. 608-619. HUBBARD, G., DOWNS, M. and TESTER, S., 2003. Including the perspectives of older people in institutional care during the consent process. In: WILKINSON H., ed, The perspectives of People with Dementia: Research Methods and Motivations. London: Jessica Kingsley Publishers, pp. 63-82. HURD, M.D., MARTORELL, P., DELAVANDE, A., MULLEN, K.J. and LANGA, K.M., 2013. Monetary Costs of Dementia in the United States. N Engl J Med, 368(14), pp. 1326-1334. INVOLVE, 2004. Involving the public in NHS, public health and social care research briefing notes for researchers. Eastleigh. Hampshire: INVOLVE.

References

KEADY, J., WILLIAMS, S. and HUGHES-ROBETS, J., 2005. Emancipatory practice development through life-story work: changing care in a memory clinic in North Wales. Practice Development in Health Care, 4(4), pp. 203-212. KRISHNASWAMY, A., 2004. Participatory Research: Strategies and Tools. http://nature.berkeley.edu/community_forestry/Workshops/powerpoints/tools%20and%20strategies%20of%20PR.pdf: Practitioner: Newsletter of the National Network of Forest Practitioners. MARTIN, S., AUGOSTO, J.C., MCCULLAGH, P., CARSWELL, W., ZHENG, H., WANG, H., WALLACE, J. and MULULLVENNA, M., 2013-last update, Participatory Research to Design a Novel Telehealth System to Support the Night-Time Needs of People with Dementia: NOCTURNAL - ProQuest. Available: http://search.proquest.com.ez-scv.statsbiblioteket.dk:2048/docview/1494553085?accountid=35465 [3/22/2015, 2015]. MCKILLOP, J., 2004. Make it Easy on Yourself!: Advice to Researchers from Someone with Dementia on Being Interviewed. Dementia, 3(2), pp. 117-125. NOMURA, M., 2009. Empowering older people with early dementia and family caregivers: A participatory action research study. International journal of nursing studies, 46(4), pp. 431-441.

References

PARKES, J.H., PYER, M., WRAY, P. and TAYLOR, J., 2014. Partners in projects: Preparing for public involvement in health and social care research. Health Policy, 117(3), pp. 399-408.

PIPON YOUNG, F., 2012. I'm not all gone, I can still speak: The experiences of younger people with dementia. An action research study. Dementia, 11(5), pp. 597-616.

SADOCK, B.J. and SADOCK, V.A., 2008. Kaplan and Sadock's Concise textbook of clinical psychiatry. 3 edn. Philadelphia, Pa.: Wolters Kluwer; Lippincott Williams & Wilkins.

SALMON, A., 2007. Walking the talk: How participatory interview methods can democratize research. Qualitative health research, 17(7), pp. 982-993.

STACCIARINI, J., SHATTELL, M., COADY, M. and WIENS, B., 2011. Review: Community-Based Participatory Research Approach to Address Mental Health in Minority Populations. Community mental health journal, 47(5), pp. 489-497

References STANISZEWSKA, S., 2009. Patient and public involvement in health services and health research: A brief overview of evidence, policy and activity. Journal of research in nursing, 14(4), pp. 295-298. SWANE, C., 2014. Stigmatisering and demenssygdom. Livet med demens, 1, pp. 18-19. VAN MANEN, M., 1997. Researching lived experience: human science for an action sensitive pedagogy. 2. ed. edn. Ontario: The Althouse Press. WEAKS, D., WILKINSON, H., HOUSTON, A. and MCKILLOP, J., 2012. Perspectives on Ageing with Dementia. York: Joseph Rowntree Foundation. WHITEHOUSE, P.J., 2000. Ethical issues in dementia. Dialouges in clinical neuroscience, 2(2), pp. 162-167. WILKINSON, H., 2002. Including people with dementia in research: Methods and motivation. In: WILKINSON H., ed, The perspectives of people with dementia: Resarch methods and motivations. London: Jessica Kingsley, pp. 9-24. XIE, J., BRAYNE, C. and MATTHEWS, F.E., 2008. Survial times in people with dementia; analysis from population based cohort study with 14 year follow up. 336(7638), pp. 258-262.