Hostname: page-component-586b7cd67f-2brh9 Total loading time: 0 Render date: 2024-11-27T18:44:55.377Z Has data issue: false hasContentIssue false
  • English
  • Français

Establishing long-term research relationships with older people: exploring care practices in longitudinal studies

Published online by Cambridge University Press:  05 December 2018

Katia Attuyer ,
Rose Gilroy  and
Karen Croucher
Katia Attuyer
Affiliation:
Department of Geography, University College London, London, UK
Rose Gilroy
Affiliation:
School of Architecture, Planning and Landscape, Newcastle University, Newcastle upon Tyne, UK
Karen Croucher*
Affiliation:
Centre for Housing Policy, University of York, York, UK
*
*Corresponding author. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Drawing on a recently completed longitudinal research project with 96 participants aged 55+, the paper provides insight into the challenges of carrying out ethical practices when engaged in longer-term research relationships with older people. It builds on a body of work that purposely records in detail the ethical dilemmas researchers face, the options available to them and the rationale guiding their reaction. The Co-Motion research, led by the University of York, examined the impact of major later-life transitions on mobility and wellbeing, and was therefore focused on times of change that were, for some participants, accompanied by suffering. Over three years, the project used a range of methods to explore with each individual the dynamic nature of lived experience: change, continuity, endurance, transition and causality. The paper addresses the negotiation of informed consent over the life of long-term research relationships; the ‘care work’ involved; contested understandings of vulnerability; and the need for ongoing ethical reflection. The paper concludes by calling for greater reflexivity and suggests a more participant-focused approach to ethics in the field, demanding both greater self-awareness from researchers and allowing the participants to have greater voice in the research processes.

Keywords

ethicslife transitionsqualitative longitudinal researchvulnerability
Type
Article
Information
Ageing & Society , Volume 40 , Issue 5 , May 2020 , pp. 1064 - 1083
Copyright
Copyright © Cambridge University Press 2018

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Baars, J (1991) The challenge of critical gerontology: the problem of social constitution. Journal of Aging Studies 5, 219–243.CrossRefGoogle Scholar
Baars, J and Phillipson, C (2014) Connecting meaning with social structure: theoretical foundations. In Baars, J, Dohmen, J, Grenier, A and Phillipson, C (eds), Ageing, Meaning and Social Structure: Connecting Critical and Humanistic Gerontology. Bristol, UK: Policy Press, pp. 11–30.Google Scholar
Barnes, M (2012) Care in Everyday Life: An Ethic of Care in Practice. Bristol, UK: The Policy Press.Google Scholar
Beebeejaun, Y, Durose, C, Rees, J, Richardson, J and Richardson, L (2015) Public harm or public value? Towards coproduction in research with communities. Environment and Planning C: Government and Policy 33, 552–565.CrossRefGoogle Scholar
Bowtell, E, Sawyer, S, Aroni, R, Green, J and Duncan, R (2013) ‘Should I send a condolence card?’ Promoting emotional safety in qualitative health research through reflexivity and ethical mindfulness. Qualitative Inquiry 19, 652–663.CrossRefGoogle Scholar
Buckle, JL, Dwyer, SC and Jackson, M (2010) Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards. International Journal of Social Research Methodology 13, 111–125.CrossRefGoogle Scholar
Buffel, T (2018) Older co-researchers exploring age-friendly communities: an ‘insider’ perspective on the benefits and challenges of peer-research. The Gerontologist. Available online doi:10.1093/geront/gnx216.Google Scholar
Corbin Dwyer, S and Buckle, J (2009) The space between: on being an insider–outsider in qualitative research. International Journal of Qualitative Methods 8, 54–63.CrossRefGoogle Scholar
Corden, A, Sainsbury, R, Sloper, T and Ward, B (2005) Using a model of group psychotherapy to support social research on sensitive topics. International Journal of Social Research Methodology 8, 151–160.CrossRefGoogle Scholar
Dewing, J (2002) From ritual to relationship: a person-centred approach to consent in qualitative research with older people who have a dementia. Dementia 1, 157–171.CrossRefGoogle Scholar
Dewing, J (2007) Participatory research: a method for process consent with persons who have dementia. Dementia 6, 11–25.CrossRefGoogle Scholar
Dickson-Swift, V, James, E, Kippen, S and Liamputtong, P (2009) Researching sensitive topics: qualitative research as emotion work. Qualitative Research 9, 61–79.CrossRefGoogle Scholar
Duncombe, J and Jessop, J (2002) ‘Doing Rapport’ and the Ethics of Faking Friendship. London: Sage.CrossRefGoogle Scholar
Ellis, C (2007) Telling secrets, revealing lives: relational ethics in research with intimate others. Qualitative Inquiry 13, 3–29.CrossRefGoogle Scholar
Elwood, SA (2000) Lesbian living spaces: multiple meanings of home. Journal of Lesbian Studies 4, 11–27.CrossRefGoogle Scholar
Gabriel, Z and Bowling, A (2004) Quality of life from the perspectives of older people. Ageing & Society 24, 675–691.CrossRefGoogle Scholar
Grenier, A (2012) Transitions and the Lifecourse: Challenging the Constructions of ‘Growing Old’. Bristol, UK: Policy Press.CrossRefGoogle Scholar
Guillemin, M and Gillam, L (2004) Ethics, reflexivity, and ‘ethically important moments’ in research. Qualitative Inquiry 10, 261–280.CrossRefGoogle Scholar
Hay, I (1998) Making moral imaginations. Research ethics, pedagogy, and professional human geography. Philosophy and Geography 1, 55–75.Google Scholar
Hendricks, J (1998) Coming of age. Journal of Aging Studies 22, 109–114.CrossRefGoogle Scholar
Holland, J (2009) Emotions and research: some general and personal thoughts. In Weller, S and Caballero, C (eds), Up Close and Personal: Relationships and Emotions Within and Through Research (Working Paper No. 25). London: Families and Social Capital Research Group, London South Bank University, pp. 11–22.Google Scholar
Holstein, M (2010) Ethics and old age; the second generation. In Dannefer, D and Phillipson, C (eds), The Sage Handbook of Social Gerontology. London: Sage, pp. 630–640.CrossRefGoogle Scholar
Houghton, C (2015) Young people's perspectives on participatory ethics: agency, power and impact in domestic abuse research and policy-making. Child Abuse Review 24, 235–248.CrossRefGoogle Scholar
Hubbard, G, Backett-Milburn, K and Kemmer, D (2001) Working with emotion: issues for the researcher in fieldwork and teamwork. International Journal of Social Research Methodology 4, 119–137.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
Lloyd, L, Calnan, M, Cameron, A, Seymour, J, Smith, R and White, K (2017) Older people's perspectives on dignity: the benefits and challenges of a qualitative longitudinal approach to researching experiences of later life. International Journal of Social Research Methodology 20, 647–658.CrossRefGoogle Scholar
Miller, T (2015) Going back: stalking, talking and researcher responsibilities in qualitative longitudinal research. International Journal of Social Research Methodology 18, 293–205.CrossRefGoogle Scholar
Minkler, M and Holstein, M (2008) From civic rights to … civic engagement? Concerns of two older critical gerontologists about a ‘new social movement’ and what it portends. Journal of Aging Studies 22, 196–204.CrossRefGoogle Scholar
Neale, B (2012) Qualitative Longitudinal Research: An Introduction. Timescapes Methods Guide Series. Available at http://www.timescapes.leeds.ac.uk.Google Scholar
Neale, B (2018) What is Qualitative Longitudinal Research? London: Bloomsbury Academic.Google Scholar
Neale, B and Hanna, E (2012) The Ethics of Researching Lives Qualitatively Through Time. Timescapes Methods Guide Series. Available at http://www.timescapes.leeds.ac.uk.Google Scholar
Parkes, CM (1995) Guidelines for conducting ethical bereavement research. Death Studies 19, 171–181.CrossRefGoogle ScholarPubMed
Peter, E and Friedland, J (2017) Recognising risk and vulnerability in research ethics: imagining the ‘what-ifs’. Journal of Empirical Research on Human Research Ethics 12, 107–116.CrossRefGoogle Scholar
Rooney, V (2015) Consent in longitudinal intimacy research: adjusting formal procedure as a means of enhancing reflexivity in ethically important decisions. Qualitative Research 15, 71–84.CrossRefGoogle Scholar
Seymour, C, Bushnell, J and Donson, S (2018) Good Grief: Older People's Experiences of Partner Loss. London: Independent Age.Google Scholar
Sherry, E (2013) The vulnerable researcher: facing the challenges of sensitive research. Qualitative Research Journal 13, 278–288.CrossRefGoogle Scholar
Tanner, D (2012) Co-research with older people with dementia: experience and reflections. Journal of Mental Health 29, 296–306.CrossRefGoogle Scholar
Taylor, R (2015) Beyond anonymity: temporality and the production of knowledge in a qualitative longitudinal study. International Journal of Social Research Methodology 18, 281–292.CrossRefGoogle Scholar
Thompson, R (2007) The qualitative longitudinal case history: practical, methodological, and ethical reflections. Social Policy and Society 6, 571–582.CrossRefGoogle Scholar
Truman, C (2003) Ethics and the ruling relations of research production. Sociological Research Online 8. Available at http://www.socresonline.org.uk/8/1/truman.html.CrossRefGoogle Scholar
Van Wijngaarden, E, Leget, C and Goossensen, A (2017) Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die. International Journal of Social Research Methodology 21, 317–331.CrossRefGoogle Scholar
Warin, J (2011) Ethical mindfulness and reflexivity: managing a research relationship with children and young people in a fourteen year qualitative longitudinal research (QLR) study. Qualitative Inquiry 17, 805–814.CrossRefGoogle Scholar
World Health Organization (2011) Global Health and Aging. Geneva: World Health Organization. Available at http://www.who.int/ageing/publications/global_health.pdf.Google Scholar
Ziegler, F and Scharf, T (2014) Community-based participatory action research: opportunities and challenges for critical gerontology. In Baars, J, Dohmen, J, Grenier, A and Philipson, C (eds), Ageing, Meaning and Social Structure. Connecting Critical and Humanistic Gerontology. Bristol, UK: Policy Press, pp. 157–179.Google Scholar
Zubair, M and Victor, C (2015) Exploring gender, age, time and space in research with older Pakistani Muslims in the United Kingdom: formalised research ‘ethics’ and performances of the public/private divide in ‘the field’. Ageing & Society 35, 961–985.CrossRefGoogle ScholarPubMed