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Research partnerships – embracing user involvement: practical considerations and reflections
- Author:
- O'SULLIVAN Roger
- Journal article citation:
- Quality in Ageing and Older Adults, 19(4), 2018, pp.220-231.
- Publisher:
- Emerald
Purpose: Academic researchers are increasingly required, and rightly so, to demonstrate the impact of their work beyond the gates of the university. This has led to an increasing focus, especially in response to funded calls, on developing research partnerships that cross disciplines, sectors and borders to help address our grand societal challenges. The purpose of this paper is to set out learning from the work of the organisation the Centre for Ageing Research and Development in Ireland (CARDI) and reflections on how to bring forward effective research partnerships involving users. Design/methodology/approach: This paper is based on reflections and learning from the organisation CARDI which delivered a highly successful programme of interdisciplinary, cross-sectoral and cross-country research partnerships in both rural and urban areas between 2007 and 2015, across the island of Ireland. Findings: Research partnerships that wish to involve users require time, commitment, support, understanding and a willingness to change and be challenged. This paper highlights that there are methodological, philosophical, moral, economic and of course, practical aspects to be considered. Research limitations/implications: This reflective paper is based on a case study from the island of Ireland during the period 2007–2015 working in the area of ageing and older people. Practical implications: The author emphasises that for research partnerships involving users to be successful, they need to not only consider the most effective research methods but also focus on the overarching purpose of the work and adopt an ethos and practice that maximises each partner’s knowledge and expertise to their full potential. Social implications: This reflective paper focused on the characteristics associated with partnership success, i.e. communication style, values, philosophy and practice and argues that establishing effective and inclusive partnerships requires time, the appropriate framework and reviewing the process on an ongoing basis. Originality/value: The issue of user involvement in research partnerships requires much more consideration. Researchers, government, funders, businesses and service providers are increasingly recognising the benefits of “user” involvement to help design programmes and services that are most effective. (Edited publisher abstract)
Older people as co-researchers: a collaborative journey
- Authors:
- BINDELS Jill, et al
- Journal article citation:
- Ageing and Society, 34(6), 2014, pp.951-973.
- Publisher:
- Cambridge University Press
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. (Publisher abstract)
Older people as researchers – why not? An overview of a partnership project to train older people to be researchers
- Authors:
- MUNN-GIDDINGS Carol, et al
- Journal article citation:
- Working with Older People, 13(4), December 2009, pp.16-19.
- Publisher:
- Emerald
This article describes a unique project that has equipped older people with the necessary research skills to find information for themselves, giving them the confidence to directly shape local services. Funded by Skills for Care East in February 2007 for delivery of training from June to August of that year, the project trained a group of 15 older people, nine women and six men aged 60 to 80, to become researchers in health and social care issues, stepping beyond their tradition consultation role. This group attended one or two days training per week, for a total of fifteen days, at the end of which a formal evaluation was carried out. All of the 12 participants that completed the course reported they had learnt a lot on research matters and on health and social care issues in general, as applicable to older people. Although confident that they could contribute to research projects in future, they felt ongoing support would be required to develop and consolidate their skills. Most expressed a wish for a follow-up course, one that explored a particular approach in more depth. The project concluded that the potential for group members to continue their learning, and apply it in a practical way, became very apparent.
Brief encounter: collaborative research between academic researchers and older researchers
- Authors:
- MILLER Emma, MORRISON Jill, COOK Ailsa
- Journal article citation:
- Generations Review, 16(3/4), September 2006, pp.39-41.
- Publisher:
- British Society of Gerontology
This article briefly describes a two year research collaboration between university researchers and older researchers, combining their reflections about how involving older researchers added value to research with older service users, and considering what methods might be most effective in harnessing the unique perspective of user researchers.
Older people as research colleagues
- Author:
- BRIGHT Les, GREEN Bert
- Journal article citation:
- Working with Older People, 7(4), December 2003, pp.14-16.
- Publisher:
- Emerald
Describes how, in a three-year research project, Housing Decisions in Old Age, between the charity Counsel and Care and Lancaster's University's Department of Applied Social Science, the researchers established from the outset the principle of involving older people. Their view being that the findings would be enriched by being more reflective of, and responsive to,the concerns of older people.
A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia
- Authors:
- DI LORITO Claudio, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(1), 2017, pp.58-67.
- Publisher:
- Wiley
Background: This study aims to identify the benefits, the risks and the practical challenges and to develop a model of good practice in peer research with people with dementia. Methods: The review conducted searches on PsycInfo, PubMed and Google Scholar for empirical investigations or discussion papers on peer research. Given the limited literature in the field of dementia, studies with groups who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities) were included. No restrictions on language and publication date were applied. Analysis: Three themes were identified: the potential benefits, the potential risks and the practical challenges of peer research. The authors the developed a model of good practice. The European Working Group of People with Dementia reviewed the authors' paper and added to the findings. Results: Seven papers were included in the evidence synthesis. Potential benefits of peer research included enriched data and empowering people with dementia. Potential risks included power differentials between researchers and issues of representativeness. The practical issues for good practice included the training of peer researchers, defining involvement and roles, working with cognitive impairment and considering resource implications. The European Working Group of People with Dementia emphasised the importance of equality issues. Conclusion: Involving people with dementia in peer research can generate several benefits, including empowerment and opportunities for inclusion for the peer researchers and the research participants living with dementia, challenging academics' traditional views on research processes and gathering enhanced research data. There remains a need for further research on the impact of peer research in dementia studies. (Edited publisher abstract)
Co-research with older people: perspectives on impact
- Authors:
- LITTLECHILD Rosemary, TANNER Denise, HALL Kelly
- Journal article citation:
- Qualitative Social Work, 14(1), 2015, pp.18-35.
- Publisher:
- Sage
Although research in partnership with older people has been slower to develop than that with some other service user 'groups', there are a growing number of health and social care studies that have involved older people as co-researchers. The authors build on this existing evidence by addressing two key areas. First, despite the growth of participatory research with older people generally, some groups tend to be excluded. The focus is particularly on a project in which older people with dementia and older people from a black and minority ethnic community were involved as co-researchers. They worked with academic researchers in all stages of the research process, exploring other older people's experiences of transitions between care services. Second, recent literature suggests a lack of critical evaluation of involvement, arguing that researchers tend to emphasise the positives on the basis of retrospective narrative accounts of the process, rather than critically appraising the impact of involvement. This article offers a critical account of the impact of a participatory approach at different stages of a research project, evaluating this from the perspective of different stakeholders. In so doing, the authors engage with incisive critiques which claim that, far from empowering service users, much service user involvement activity contributes to their oppression. It is concluded that participatory research with marginalised older people has the potential to achieve meaningful change at both individual and social levels. However, in view of its dangers and limitations, the authors argue the need for the impact of participatory research to be carefully evaluated from the perspectives of all parties in the process. (Edited publisher abstract)
Measuring the outcomes of care homes: final report
- Authors:
- NETTEN Ann, et al
- Publisher:
- Personal Social Services Research Unit
- Publication year:
- 2010
- Pagination:
- 117p., bibliog.
- Place of publication:
- Canterbury
The authors report on a project which developed and tested an approach to measuring and monitoring outcomes of the care and support provided to residents of care homes for older people and people with learning disabilities. The research was part of the ‘Measuring Outcomes for Public Service Users’ (MOPSU) project, which was funded by the Treasury under the Invest to Save budget and led by the Office for National Statistics (ONS). The domains that comprise social care related quality of life (SCRQOL) formed the basis of the measures used in the study.
Accessing and interviewing the oldest old in care homes
- Authors:
- FISK Malcolm, WIGLEY Veronica
- Journal article citation:
- Quality in Ageing, 1(1), September 2000, pp.27-33.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Accessing and interviewing older people in residential and nursing homes (care homes) presents a number of methodological challenges. Such challenges were encountered and, in many respects, overcome in a recent survey of more than 900 residents undertaken for the Office of Fair Trading (OFT). This survey helped underpin a broader review of care homes that reflected the OFT's concerns about the 'potential for detriment' in the position of residents as consumers of services. Notable ate the ways in which an attempt was made to maximise the inclusion of people with cognitive impairments through the devising of what was regarded as an appropriate screening test that reflected the demand of the planned interviews. A discussion of the potential for using proxies (for those failing the screening test) points to their inability to fairly represent the views of cognitively impaired residents. Also explored is the way in which access was obtained to residents and issues concerning the gate-keeping role of home owners and managers. Questions relating to the associated rights of residents and third party interests are touched upon.
Critical issues in social research: power and prejudice
- Editors:
- HOOD Suzanne, MAYALL Berry, OLIVER Sandy
- Publisher:
- Open University Press
- Publication year:
- 1999
- Pagination:
- 186p.,tables,bibliogs.
- Place of publication:
- Buckingham
Addresses questions such as: whose interests are served by research; for whom is it undertaken; what research methods are appropriate; and how can those researched find a voice in the research process. To illustrate these questions, contains papers on: children and childhood; children in developing countries; learning difficulties and research; disturbed young people; women's private past; black and minority ethnic health; frail elderly people; gay men; the targets of health promotion; and users of health services.