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Older people as co-researchers: a collaborative journey

Published online by Cambridge University Press:  01 February 2013

JILL BINDELS ,
VIVIANNE BAUR ,
KAREN COX ,
SERVÉ HEIJING  and
TINEKE ABMA
JILL BINDELS*
Affiliation:
Department of Health Services Research, School for Public Health and Primary Care (CAPHRI), Maastricht University, The Netherlands.
VIVIANNE BAUR
Affiliation:
Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands.
KAREN COX
Affiliation:
Department of Health Services Research, School for Public Health and Primary Care (CAPHRI), Maastricht University, The Netherlands. Fontys University of Applied Sciences, School of Nursing, Eindhoven, The Netherlands.
SERVÉ HEIJING
Affiliation:
Co-researcher, House of the Care, The Netherlands.
TINEKE ABMA
Affiliation:
Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands.
*
Address for correspondence: Jill Bindels, Department of Health Services Research, P.O Box 616, 6200 MD Maastricht, The Netherlands E-mail: j.bindels@maastrichtuniversity.nl
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Abstract

In recent years there has been a distinguishable trend towards user involvement in ageing research. Researchers and policy makers both are increasingly convinced that user involvement is necessary to adapt research questions and methods to meet the needs of older people. Little is known, however, about the quality of collaborations between older people and researchers. This study systematically evaluates a collaboration undertaken between two academic researchers and three older people acting as co-researchers in an effort to identify the conditions required for equal collaboration. To evaluate the collaboration the co-researchers and academic researchers took part in individual in-depth interviews (after six months) and two reflection meetings (after six and 12 months). Throughout the collaboration, field notes were taken by both academic researchers and co-researchers. A detailed description of the collaboration is provided here, using the metaphor of a journey to illustrate the dynamics and the learning process of the participants. Interim reflection meetings – at which mutual expectations were expressed along with a frank discussion of prejudices, tasks and role divisions, and the sharing of personal and project-related needs and information – were found to be fruitful in achieving a positive working relationship and fostering an effective collaboration. We conclude that a learning perspective on participation can be a resource for learning and adaptive change.

Keywords

co-researcherspatient participationconsumer participationuser involvementcollaborationreflection
Type
Articles
Information
Ageing & Society , Volume 34 , Issue 6 , July 2014 , pp. 951 - 973
Copyright
Copyright © Cambridge University Press 2013 

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References

Abma, T. A. 2003. Learning by telling: storytelling workshops as an organizational learning intervention. Management Learning, 34, 2, 221–40.Google Scholar
Abma, T. A. and Broerse, J. E. 2010. Patient participation as dialogue: setting research agendas. Health Expectations, 13, 2, 160–73.Google Scholar
Abma, T. A., Nierse, C. J. and Widdershoven, G. A. 2009. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qualitative Health Research, 19, 3, 401–15.Google Scholar
Abma, T. A. and Stake, R. E. 2001. Responsive evaluation: roots and evaluation. In Greene, C. and Abma, T. A. (eds), Responsive Evaluation: New Directions for Evaluation. Number 92, Jossey-Bass, San Francisco, 7–22.Google Scholar
Arnstein, S. H. 1969. A ladder of citizen participation. The Journal of the American Institute of Planners, 35, 4, 216–24.Google Scholar
Barbour, R. S. 2001. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? British Medical Journal, 322, 7294, 1115–7.CrossRefGoogle ScholarPubMed
Barnes, M. and Bennett, G. 1998. Frail bodies, courageous voices: older people influencing community care. Health & Social Care in the Community, 6, 2, 102–11.Google Scholar
Barnes, M., Harrison, E. and Murray, L. 2011. Ageing activists: who gets involved in older people's forums? Ageing & Society, 32, 2, 261–80.Google Scholar
Baur, V. and Abma, T. A. 2011. ‘The Taste Buddies’: participation and empowerment in a residential home for older people. Ageing & Society, 32, 6, 1055–78.Google Scholar
Beresford, P. and Branfield, F. 2006. Developing inclusive partnerships: user-defined outcomes, networking and knowledge – a case study. Health and Social Care in the Community, 14, 5, 436–44.Google Scholar
Calasanti, T. 2010. Gender relations and applied research on aging. The Gerontologist, 50, 6, 720–34.Google Scholar
Caron-Flinterman, J. F., Broerse, J. E. W. and Bunders, J. F. 2005. The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicine, 60, 11, 2575–84.Google Scholar
Caron-Flinterman, J. F., Broerse, J. E. W. and Bunders, J. F. G. 2007. Patient partnership in decision-making on biomedical research. Science, Technology & Human Values, 32, 3, 339–68.Google Scholar
Carter, T. and Beresford, P. 2000. Age and Change: Models of Involvement for Older People. Joseph Rowntree Foundation, York, UK.Google Scholar
Cornes, M., Peardon, J. and Manthorpe, J. 2008. Wise owls and professors: the role of older researchers in the review of the National Service Framework for Older People. Health Expectations, 11, 4, 409–17.CrossRefGoogle ScholarPubMed
Davies, S. and Nolan, M. 2003. Editorial: Nurturing research partnerships with older people and their carers: learning from experience. Quality in Ageing and Older Adults, 4, 4, 2–5.Google Scholar
Elberse, J. E., Caron-Flinterman, J. F. and Broerse, J. E. 2010. Patient–expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expectations, 14, 3, 225–39.Google Scholar
Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J. and Lamont, T. 1998. Lay perspectives: advantages for health research. British Medical Journal, 316, 7129, 463–6.Google Scholar
Etman, A., Burdorf, A., Van der Cammen, T. J. M., Mackenbach, J. P. and Van Lenthe, F. J. 2012. Socio-demographic determinants of worsening in frailty among community-dwelling older people in 11 European countries. Journal of Epidemiology & Community Health. doi:10.1136/jech-2011-200027.Google Scholar
Fudge, N., Wolfe, C. D. and McKevitt, C. 2007. Involving older people in health research. Age and Ageing, 36, 5, 492–500.CrossRefGoogle ScholarPubMed
Garre-Olmo, J., Calvó-Perxas, L., López-Pousa, S., de Gracia Blanco, M. and Vilalta-Franch, J. 2012. Prevalence of frailty phenotypes and risk of mortality in a community-dwelling elderly cohort. Age and Ageing. doi:10.1093/ageing/afs047.Google Scholar
Habicht, D. W., Witham, M. D. and McMurdo, M. E. 2008. The under-representation of older people in clinical trials: barriers and potential solutions. Journal of Nutrition, Health and Ageing, 12, 3, 194–6.Google Scholar
Hewlett, S., de Wit, M., Richards, P., Quest, E., Hughes, R., Heiberg, T. and Kirwan, J. 2006. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis & Rheumatism, 55, 4, 676–80.Google Scholar
Janssen, B. M., Van Regenmortel, T. and Abma, T. A. 2011. Identifying sources of strength: resilience from the perspective of older people receiving long-term community care. European Journal of Ageing, 8, 3, 145–56.Google Scholar
Kirwan, J. R., Ahlmen, M., de Wit, M., Heiberg, T., Hehir, M., Hewlett, S., Katz, P. P., Minnock, P., Quest, E. M. and Richards, P. 2005. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. The Journal of Rheumatology, 32, 11, 2246–9.Google Scholar
Lincoln, Y. S. and Guba, E. G. 1985. Naturalistic Inquiry. Sage, Newbury Park, California.Google Scholar
Mandersons, L., Bennett, E. and Andajani-Sutjahjo, S. 2006. The social dynamics of the interview: age, class and gender. Qualitative Health Research, 16, 10, 1317–34.Google Scholar
McMurdo, M. E., Witham, M. D. and Gillespie, N. D. 2005. Including older people in clinical research. British Medical Journal, 331, 7524, 1036–7.Google Scholar
Mehrotra, C. M. and Wagner, L. S. 2009. Aging and Diversity: An Active Learning Experience. Second edition, Routledge, New York.Google Scholar
Mertens, D. M. 2009. Transformative Research and Evaluation. Guilford Press, New York.Google Scholar
Nierse, C. J. and Abma, T. A. 2011. Developing voice and empowerment: the first step towards a broad consultation in research agenda setting. Journal of Intellectual Disability Research, 55, 4, 411–21.Google Scholar
Nierse, C. J., Schipper, K., van Zadelhoff, E., van de Griendt, J. and Abma, T. A. 2012. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expectations, 15, 3, 242–54.Google Scholar
Patton, M. Q. 1999. Enhancing the quality and credibility of qualitative analysis. Health Services Research, 34, 5, 1189–208.Google ScholarPubMed
Polit, D. F. and Beck, C. T. 2008. Nursing Research: Generating and Assessing Evidence for Nursing Practice. Lippincott Williams & Wilkins, Philadelphia.Google Scholar
Reed, J., Pearson, P., Douglas, B., Swinburne, S. and Wilding, H. 2002. Going home from hospital – an appreciative inquiry study. Health and Social Care in the Community, 10, 1, 36–45.Google Scholar
Reed, J., Stanley, D. and Clarke, C. 2004. Health, Well-being and Older People. The Policy Press, Bristol, UK.Google Scholar
Reed, J., Weiner, R. and Cook, G. 2004. Partnership research with older people – moving towards making the rhetoric a reality. Journal of Clinical Nursing, 13, 3a, 3–10.Google Scholar
Schipper, K., Abma, T. A., van Zadelhoff, E., van de Griendt, J., Nierse, C. and Widdershoven, G. A. M. 2010. What does it mean to be a patient research partner? An ethnodrama. Qualitative Inquiry, 16, 6, 501–10.Google Scholar
Tee, S. R. and Lathlean, J. A. 2004. The ethics of conducting a co-operative inquiry with vulnerable people. Journal of Advanced Nursing, 47, 5, 536–43.Google Scholar
Thompson, N. and Thompson, S. 2001. Empowering older people: beyond the care model. Journal of Social Work, 1, 1, 61–76.Google Scholar
VanderPlaat, M. 1999. Locating the feminist scholar: relational empowerment and social activism. Qualitative Health Research, 9, 6, 773–85.CrossRefGoogle ScholarPubMed
Walker, A. 2007. Why involve older people in research? Age and Ageing, 36, 5, 481–3.Google Scholar
Warburton, J. and Petriwskyj, A. 2007. Who speaks for Australia's seniors? Policy partnerships and older Australians. Just Policy, 45, 38–43.Google Scholar
Ward, L. and Gahagen, B. 2010. Crossing the divide between theory and practice: research and an ethic of care. Ethics and Social Welfare, 4, 2, 210–6.Google Scholar