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Person-centred research practice: the user involvement in research of older adults with first-hand experience of reablement

Published online by Cambridge University Press:  01 July 2020

Kari Jokstad Open the ORCID record for Kari Jokstad [Opens in a new window] ,
Bjørg Th. Landmark  and
Kirsti Skovdahl
Kari Jokstad*
Affiliation:
Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen Kongsberg, Norway Department of Health and Social Welfare, University of South-Eastern Norway, Drammen, Norway
Bjørg Th. Landmark
Affiliation:
Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen Kongsberg, Norway
Kirsti Skovdahl
Affiliation:
Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen Kongsberg, Norway
*
*Corresponding author. Email: Kari.Jokstad@usn.no
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Abstract

User involvement is increasingly common in health-care research, and the ideal is user participation and influence during all research stages. Here we describe and reflect on the processes and outcomes associated with advisory group–researcher collaboration from a person-centred perspective. When planning a study in which older adults’ experiences of reablement were investigated, older adults with previous first-hand experience of reablement participated in an advisory group. We found that the fostering of healthful relationships, in which experiential and research knowledge are considered complimentary and equitable, and all members have the power to exercise their unique roles, seems to be a prerequisite for the co-creation of knowledge. Also, practical arrangements and social relationships constitute important details that are crucial to ensuring contribution from older adults with health-related conditions. While such individuals may be unable to participate during all stages of a research project, their involvement on an advisory level during the initial stages can increase study quality and relevance. Input from the advisory group members contributed to the improvement of the language in the study information sheet, improvement of the study design, development and validation of the interview guide, and insight into how the interviews should be conducted. The personal knowledge and expertise of the advisory group members, which emanated from their immediate sensitivity, contributed to the person-centredness in the study.

Keywords

person-centred researcholder adultsfirst-hand experienceuser involvementpatient and public involvementreablementadvisory group–researcher collaboration
Type
Article
Information
Ageing & Society , Volume 42 , Issue 1 , January 2022 , pp. 143 - 156
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Armstrong, D (2014) Actors, patients and agency: a recent history. Sociology of Health and Illness 36, 163–174.CrossRefGoogle ScholarPubMed
Arnstein, S (1969) A ladder of citizen participation. Journal of the American Institute of Planners 35, 216–224.CrossRefGoogle Scholar
Aspinal, F, Glasby, J, Rostgaard, T, Tuntland, H and Westendorp, RG (2016) New horizons: reablement – supporting older people towards independence. Age and Ageing 45, 574–578.CrossRefGoogle ScholarPubMed
Baldwin, JN, Napier, S, Neville, S and Wright-St Clair, VA (2018) Impacts of older people's patient and public involvement in health and social care research: a systematic review. Age and Ageing 47, 801–809.CrossRefGoogle ScholarPubMed
Beresford, P (2013) From ‘other’ to involved: user involvement in research: an emerging paradigm. Nordic Social Work Research 3, 139–148.CrossRefGoogle Scholar
Brinkmann, S and Kvale, S (2015) InterViews: Learning the Craft of Qualitative Research Interviewing, 3rd Edn. Thousand Oaks, CA: Sage.Google Scholar
Cochrane, A, Furlong, M, McGilloway, S, Molloy, DW, Stevenson, M and Donnelly, M (2016) Time-limited home-care reablement for maintaining and improving the functional independence of older adults. Cochrane Database of Systematic Reviews 10, CD010825.Google ScholarPubMed
Dewar, BJ (2005) Beyond tokenistic involvement of older people in research – a framework for future development and understanding. Journal of Clinical Nursing 14, 48–53.CrossRefGoogle ScholarPubMed
Dewing, J, Eide, T and McCormack, B (2017) Philosophical perspectives on person-centredness for healthcare research. In McCormack, B, van Dulmen, S, Eide, H, Skovdahl, K and Eide, T (eds), Person-centred Healthcare Research. Chichester, UK: Wiley Blackwell, pp. 19–29.CrossRefGoogle Scholar
de Wit, MPT, Berlo, SE, Aanerud, GJ, Aletaha, D, Bijlsma, JW, Croucher, L, DaSilva, JAP, Glüsing, B, Gossec, L, Hewlett, S, Jongkees, M, Magnusson, D, Scholte-Voshaar, M, Richards, P, Ziegler, C and Abma, TA (2011) European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases 70, 722–726.CrossRefGoogle ScholarPubMed
Fudge, N, Wolfe, CD and McKevitt, C (2007) Involving older people in health research. Age and Ageing 36, 492–500.CrossRefGoogle ScholarPubMed
Greenhalgh, T, Jackson, C, Shaw, S and Janamian, T (2016) Achieving research impact through co-creation in community-based health services: literature review and case study. Milbank Quarterly 94, 392–429.CrossRefGoogle ScholarPubMed
Hamilton, CB, Hoens, AM, Backman, CL, McKinnon, AM, McQuitty, S, English, K and Li, LC (2018) An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations, 21, 396–406. doi:10.1111/hex.12635CrossRefGoogle ScholarPubMed
INVOLVE (2012) Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research. Available at www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf.Google Scholar
Ives, J, Damery, S and Redwod, S (2013) PPI, paradoxes and Plato: who's sailing the ship? Journal of Medical Ethics 39, 181–185.CrossRefGoogle Scholar
Jacobs, G, Van Lieshout, F, Borg, M and Ness, O (2017) Being a person-centred researcher, principles and methods for doing research in a person-centred way. In McCormack, B, van Dulmen, S, Eide, H, Skovdahl, K and Eide, T (eds), Person-centred Healthcare Research. Chichester, UK: Wiley Blackwell, pp. 51–60.CrossRefGoogle Scholar
Littlechild, R, Tanner, D and Hall, K (2015) Co-research with older people: perspectives on impact. Qualitative Social Work 14, 18–35.CrossRefGoogle Scholar
Malterud, K and Elvbakken, KT (2019) Patients participating as co-researchers in health research: a systematic review of outcomes and experiences. Scandinavian Journal of Public Health. doi:10.1177/1403494819863514.CrossRefGoogle Scholar
Martin, GP (2008) ‘Ordinary people only’: knowledge, representativeness, and the publics of public participation in healthcare. Sociology of Health & Illness 30, 35–54.CrossRefGoogle ScholarPubMed
McCormack, B and McCance, T (2017 a) Underpinning principles of person-centred practice. In McCormack, B and McCance, T (eds), Person-centred Practice in Nursing and Health Care: Theory and Practice, 2nd Edn. Chichester, UK: Wiley Blackwell, pp. 13–35.CrossRefGoogle Scholar
McCormack, B and McCance, T (2017 b) Creating flourishing workplaces. In McCormack, B and McCance, T (eds), Person-centred Practice in Nursing and Health Care: Theory and Practice, 2nd Edn. Chichester, UK: Wiley Blackwell, pp. 150–161.CrossRefGoogle Scholar
McCormack, B and Titchen, A (2014) No beginning, no end: an ecology of human flourishing. International Practice Development Journal 4, 1–21.Google Scholar
Ministry of Health and Care Services (2014) HelseOmsorg21. Et kunnskapssystem for bedre folkehelse. Nasjonal forsknings-og innovasjonsstrategi for helse og omsorg [HealthCare21. A Knowledge for Better Public Health. National Research and Innovation Strategy]. Available at https://www.regjeringen.no/contentassets/8ab2fd5c4c7746dfb51e3f64cd4d71aa/helseomsorg21_strategi_web.pdf?id=2266705.Google Scholar
National Health and Medical Research Council (2016) Statement on Consumer and Community Involvement in Health and Medical Research. Available at www.nhmrc.gov.au/guidelines/publications/s01.Google Scholar
National Institute for Health Research (2019) Patients and the Public. Available at https://www.nihr.ac.uk/patients-and-public/.Google Scholar
Oldenhof, L and Wehrens, R (2018) Who is ‘in’ and who is ‘out’? Participation of older persons in health research and the interplay between capital, habitus and field. Critical Public Health 28, 281–293.CrossRefGoogle Scholar
Popay, J and Collins, M with the PiiAF Study Group (2014) The Public Involvement Impact Assessment Framework Guidance. Available at http://www.piiaf.org.uk/documents/piiaf-guidance-jan14.pdf.Google Scholar
Schilling, I and Gerhardus, A (2017) Methods for involving older people in health research – a review of the literature. International Journal of Environmental Research and Public Health 14, 1476. Available at https://doi.org/10.3390/ijerph14121476CrossRefGoogle ScholarPubMed
Skovdahl, K and Dewing, J (2017) Co-creating flourishing research practices through person-centred research: a focus on persons living with dementia. In McCormack, B, van Dulmen, S, Eide, H, Skovdahl, K and Eide, T (eds), Person-centred Healthcare Research. Chichester, UK: Wiley Blackwell, pp. 85–93.CrossRefGoogle Scholar
Skovdahl, K, Kihlgren, AL and Kihlgren, M (2003) Dementia and aggressiveness: video recorded morning care from different care units. Journal of Clinical Nursing 12, 888–898.CrossRefGoogle ScholarPubMed
Staley, K (2013) There is no paradox with PPI in research. Journal of Medical Ethics 39, 186–187.CrossRefGoogle ScholarPubMed
Staley, K (2015) ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement, 1, 6.CrossRefGoogle Scholar
The Research Council of Norway (2016) Brukermedvirkning i helseforskningsprogrammene [User Involvement in the Health Research Programs]. Available at https://www.forskningsradet.no/prognett-helsevel/Brukermedvirkning_i_helseforskningsprogrammene/1254019678958.Google Scholar
Tritter, JQ and McCallum, A (2006) The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy 76, 156–168.CrossRefGoogle ScholarPubMed
van Dulmen, S, McCormack, B, Eide, T, Skovdahl, K and Eide, H (2017) Future directions for person-centred healthcare research. In McCormack, B, van Dulmen, S, Eide, H, Skovdahl, K and Eide, T (eds), Person-centred Healthcare Research. Chichester, UK: Wiley Blackwell, pp. 209–218.CrossRefGoogle Scholar
Ward, L and Gahagan, B (2012) Involving older people in research; empowering engagement? In Barnes, M and Cotterell, P (eds), Critical Perspectives on User Involvement. Bristol, UK: University Press, pp. 181–188.Google Scholar
World Health Organization (2016) Framework on Integrated, People-centred Health Services. Available at http://apps.who.int/gb/ebwha/pdf_files/WHA69/A69_39-en.pdf?ua=1&ua=1.Google Scholar