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BSG Guidelines on ethical research with human participants
- Author:
- PEACE Shelia
- Journal article citation:
- Generations Review, 18(2), April 2008, Online only
- Publisher:
- British Society of Gerontology
Researching later life engages us with people living in all situations including some who are involved in health, housing and social care. Regardless of whether they are receiving or providing services or have some other interest, inviting them to participate in research is a serious matter. Research participants should be approached only after giving careful consideration to what it is they will be asked to do. They may be seen as research participants or co-producers of research. This article presents guidelines relating to ethical research practice.
My work
- Author:
- MARTIN Dave
- Journal article citation:
- Working with Older People, 9(4), December 2005, pp.39-42.
- Publisher:
- Emerald
The author, an Associate Director with the Better Government for Older People (BGOP), explains the work of the BGOP and its work to connect politics and older people through active engagement.
Co-production and participation: older people with high support needs
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2012
- Pagination:
- 4p.
- Place of publication:
- London
This briefing summarises a review of literature and a small-scale survey of good practice on the participation and co-production of older people with high support needs. It looks at the benefits and barriers to participation; highlights two research programmes involving older people with high support needs. Recommendations for improved practice are also listed. It is noted that the evidence base for the review was limited as relevant material was either about participation as it relates generally to older people or was about older people with high support needs but contained very little reference to participation.
Growing older together: the development and promotion of resident-led models of housing with care for older people: a programme of work being undertaken by the Housing LIN (Learning and Improvement Network)
- Author:
- HOUSING LEARNING AND IMPROVEMENT NETWORK
- Publisher:
- Housing Learning and Improvement Network
- Publication year:
- 2015
- Pagination:
- 5
- Place of publication:
- London
This practice briefing outlines the work being undertaken to capture examples of practice of resident-led housing for older people, building on the 2013 report ‘Growing older together: the case for housing that is shaped and controlled by older people’. This key area of work recognises that there is a need to increase the supply of housing suitable for older people and ensure that the offer of new housing options and choices prove attractive to a new generation of older people with changing priorities and higher expectations. The work programme will comprise several elements, including: an overall report, covering a broad range of examples; liaison with community-led housing organisations, older people’s representative forums/networks and other interested parties; and a spring conference for 2016. (Edited publisher abstract)
Involving older service consumers in health research: action research as a strategy for promoting involvement
- Authors:
- CALDWELL Kay, COLEMAN Kate, HOLMSHAW Janet
- Journal article citation:
- Research Policy and Planning, 26(2), 2008, pp.113-112.
- Publisher:
- Social Services Research Group
This paper considers the extent of older service consumer involvement in health-related research and, through a critical consideration of the literature, explores the levels and ways in which older service consumers are involved. The experiences of research involvement from the perspectives of both older service consumers and professional researchers are explored, and the benefits of, and difficulties facing, such partnerships are considered. The importance of education and training for both older service consumers and professional researchers for such partnership working is highlighted, and strategies for enhancing effective involvement in planning, design and managing research are suggested. The benefits of utilising an action research approach to promote and support consumer involvement are considered and the process for developing this approach as a key strategy for promoting older service consumer involvement explored.
Public involvement and the ageing population: incompatible trends?
- Authors:
- WAIT Suzanne, NOLTE Ellen
- Journal article citation:
- Ageing Horizons, 2, 2005, Online only
- Publisher:
- Oxford Institute of Ageing
- Place of publication:
- Oxford
This paper begins by exploring the concept of public involvement within the current UK health policy context. It then discusses current levels of knowledge about older people’s preferences, perspectives and experience with the health care system. It concludes by bringing these two discussions together to explore the compatibility of the ageing of society with government’s declared aim of increasing public involvement in health.
Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel
- Authors:
- COMBES S, et al
- Journal article citation:
- BMC Health Services Research, 21(712), 2021, Online only
- Publisher:
- BioMed Central Ltd
Background: Advance care planning (ACP) conversations support people to think about, discuss and document their beliefs, values and preferences regarding future care. This process means that should the person loose capacity in the future, care can be provided, consistent with their personal values and beliefs. The ACP process is particularly relevant for older people living with frailty (frail elders) as they are vulnerable to sudden deterioration. However, ACP is rarely undertaken by frail elders. The aim of this study was to develop an intervention to increase multidisciplinary health and social care professionals’ (H&SCPs) engagement of cognitively able, domestic-dwelling frail elders with ACP. Methods: Intervention development was guided by the Medical Research Council framework for complex interventions and the Behaviour Change Wheel. Multiple methods were used to understand ACP barriers and enablers: a systematic integrative review, a survey (n = 73 H&SCPs), and semi-structured interviews (n = 10 frail elders, n = 8 family members). A conceptual model, developed from the integrative review, underpinned data collection for the survey and interviews. Synthesis of this data, including patient and public involvement, was then used to identify H&SCPs behaviours that needed to change for ACP to be implemented and decide content and implementation for the intervention. Results: Following the Behaviour Change Wheel system, and based on the findings of the review, survey and interviews, the prototype intervention, Conversations on Living and Dying (CLaD), was developed. The CLaD prototype consisted of one 3.5-hour educational skills session for H&SCPs supported by a toolkit. Content focussed on the relevance of ACP for frail elders, experience of ACP by frail elders, and strategies H&SCPs could adopt to encourage frail elders’ engagement with ACP. Strategies include recognising the importance of relationships and living well now, preparing frail elders for ACP conversations and starting ACP early. Participants who took part in initial prototype refinement reported that the intervention helped them think differently about ACP and encouraged them to engage with frail elders. Conclusions: The use of behavioural theory enabled the development of CLaD, an evidence-based, theory-driven, person-centred intervention to support ACP engagement with frail elders. While feasibility testing is required, initial prototype refinement demonstrated that H&SCPs found the intervention to be acceptable, engaging, and clinically valuable in their practice with frail elders and their families. (Edited publisher abstract)
User-centred design of an active computer gaming system for strength and balance exercises for older adults
- Authors:
- HOWES S., et al
- Journal article citation:
- Journal of Enabling Technologies, 13(2), 2019, pp.101-111.
- Publisher:
- Emerald
Purpose: Active computer gaming (ACG) is a way for older people to participate in strength and balance exercise. Involving older adults in the development of a bespoke ACG system may optimise its usability and acceptability. The purpose of this paper is to employ user-centred design to develop an ACG system to deliver strength and balance exercises, and to explore its safety, usability and acceptability in older adults. Design/methodology/approach: This paper describes user involvement from an early stage, and its influence on the development of the system to deliver strength and balance exercise suitable for display on a flat screen or using an Oculus Rift virtual reality (VR) headset. It describes user testing of this ACG system in older adults. Findings: Service users were involved at two points in the development process. Their feedback was used to modify the ACG system prior to user testing of a prototype of the ACG system by n=9 older adults. Results indicated the safety, usability and acceptability of the system, with a strong preference for the screen display. Research limitations/implications: The sample size for user testing was small; however, it is considered to have provided sufficient information to inform the further development of the system. Practical implications: Findings from user testing were used to modify the ACG system. This paper identified that future research could explore the influence of repeated use on the usability and acceptability of ACG in older adults. Originality/value: There is limited information on the usability and acceptability VR headsets in this population.
I am connected: new approaches to supporting people in later life online
- Author:
- RICHARDSON James
- Publisher:
- Good Things Foundation
- Publication year:
- 2018
- Pagination:
- 58
- Place of publication:
- Sheffield
Report of the research carried out by the Good Things Foundation for the Centre For Ageing Better, to try and understand the underlying reasons for older people’s digital behaviour. The methodology combined analysis of major datasets including the Online Centres learner survey and Ofcom’s Adults’ Media Use & Attitudes Report, as well as original qualitative research in the form of interviews, focus groups and observations. This included semi-structured interviews with twenty-seven people aged between 55 and 93. A literature review of grey and academic research concerning studies of digital exclusion but also research into cognitive decline in older age, and psychological phenomena which may affect digital behaviour was also part of the study. One of the clearest findings of the research is that older people with good social resources and little need for health and public services are able to live - and thrive - without access to the internet. The authors also present a typology of digital engagement and older people. (Edited publisher abstract)
An introduction to co-production for the Ambition for Ageing programme
- Author:
- GOULDING Anna
- Publisher:
- University of Manchester. Institute for Collaborative Research on Ageing
- Publication year:
- 2016
- Pagination:
- 37
- Place of publication:
- Manchester
This guide to co-producing research provides advice for anyone looking to involve end users more centrally in research, particularly older people. It draws on the experience of the Ambition for Ageing programme, a project to reduce social isolation of older people and create more age-friendly communities. In the context of the Ambition for Ageing programme, coproduction involves a partnership between older people, their families and communities, and statutory and non-statutory organisations. The booklet highlights the benefits of co-production and looks at the principles that inform co-production. It also helps researchers plan, implement, monitor, and evaluate the co-production throughout the project. Case studies of other projects provide examples of the kinds of challenges faced in implementing co-production in different settings, from care homes to primary care. The examples also how to use different participatory methods to capture different aspects of lived everyday experience – walking interviews, photographing the experience of chronic pain, or using art as a stimulus for debate. (Edited publisher abstract)