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Actively involving people with dementia in qualitative research

Author

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  • Jane McKeown
  • Amanda Clarke
  • Christine Ingleton
  • Julie Repper

Abstract

Aims and objectives. This paper aims to: • Consider the major challenges to involving people with dementia in qualitative research. • Critique a process consent framework. • Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia. • Consider the impact of the Mental Capacity Act 2005 on research with people with dementia. To achieve its aims, the authors will draw on current literature and use examples which explores the use of life story work with people with dementia by taking a qualitative approach. Background. There is acceptance that researchers should consider ways of actively involving people with dementia in research as participants where appropriate to answering specific research questions. Process consent methods have been advocated as an ethical way forward in recruiting and gaining consent for people with dementia, the Mental Capacity Act offers guidance to both practitioners and researchers. Design and method. This paper does not seek to be a comprehensive review of the current literature but is a discussion paper appraising a process consent framework against current literature and drawing on the lead author’s PhD study, exploring life story work with older people with dementia. Results and conclusions. The Mental Capacity Act and process consent frameworks compliment one another, and their use should be considered when researching issues affecting older people with dementia. Researchers and practitioners should work more closely to ensure that the principles of process consent are achieved. Process consent models can equally be applied to everyday nursing practice. Relevance to clinical practice. Process consent models can provide an ethical and practical framework to ensure that consent is continually assessed in people with dementia with all clinical interventions. The paper also draws on literature exploring practical ways of involving people with dementia in evaluating service delivery.

Suggested Citation

  • Jane McKeown & Amanda Clarke & Christine Ingleton & Julie Repper, 2010. "Actively involving people with dementia in qualitative research," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(13‐14), pages 1935-1943, July.
    • Handle: RePEc:wly:jocnur:v:19:y:2010:i:13-14:p:1935-1943
    DOI: 10.1111/j.1365-2702.2009.03136.x
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    References listed on IDEAS

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    1. Boote, Jonathan & Telford, Rosemary & Cooper, Cindy, 2002. "Consumer involvement in health research: a review and research agenda," Health Policy, Elsevier, vol. 61(2), pages 213-236, August.
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    1. Nina Hynninen & Reetta Saarnio & Arja Isola, 2015. "Treatment of older people with dementia in surgical wards from the viewpoints of the patients and close relatives," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(23-24), pages 3691-3699, December.
    2. Hanna‐Mari Pesonen & Anne M. Remes & Arja Isola, 2013. "Diagnosis of dementia as a turning point among Finnish families: A qualitative study," Nursing & Health Sciences, John Wiley & Sons, vol. 15(4), pages 489-496, December.
    3. Kay Shannon & Kasia Bail & Stephen Neville, 2019. "Dementia‐friendly community initiatives: An integrative review," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(11-12), pages 2035-2045, June.
    4. Robin Digby & Susan Lee & Allison Williams, 2016. "Interviewing people with dementia in hospital: recommendations for researchers," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(7-8), pages 1156-1165, April.
    5. Sturge, Jodi & Klaassens, Mirjam & Lager, Debbie & Weitkamp, Gerd & Vegter, Daan & Meijering, Louise, 2021. "Using the concept of activity space to understand the social health of older adults living with memory problems and dementia at home," Social Science & Medicine, Elsevier, vol. 288(C).
    6. Joanne Harmon & Peter Summons & Isabel Higgins, 2019. "Experiences of the older hospitalised person on nursing pain care: An ethnographic insight," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(23-24), pages 4447-4459, December.

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