Impacts of older people’s patient and public involvement in health and social care research: a systematic review

Baldwin, Jennifer; Napier, Sara; Neville, Stephen; Clair, Valerie Wright‐St

doi:10.1093/ageing/afy092

Cited by 71 publications

(88 citation statements)

References 21 publications

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“…According to Cook et al (2017), not all change is measurable; a positive or awkward interaction can have a strong impact on people individually or the entire group. In a recent systematic review, Baldwin et al (2018) report that evidence of the impact is mixed, but the benefits of involvement seem to outweigh the challenges. We support their suggestion to embed evaluation in the iterative process of participatory research, in order to capture the meaning it has for the persons who are involved.…”

Section: Introductionmentioning

confidence: 99%

Circles of impacts within and beyond participatory action research with older people

2020

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Participatory action research (PAR) advocates end-user involvement in various societal domains. This paper aims to identify and analyse impacts of PAR involving older persons as co-researchers, and how these impacts spread and are enhanced throughout the research process and after its completion. By impact we mean transformational change throughout and after a PAR study. We present a qualitative community-based research project involving older people who live in sparsely populated areas in the Netherlands, and explore three types of PAR impact: personal, interpersonal and community impacts. We demonstrate how these impacts unfold through expanding circles, from a personal to a community level, and how these circles enhance each other. The project was conducted by a PAR team consisting of one researcher and seven co-researchers. The data were collected from observations, interviews and minutes of meetings, which the team subsequently analysed. The results are presented as a narrative account, whereby four project stages are followed by reflection on the impact it made. The discussion addresses the circles of impact, and whether and how they can strengthen each other in community-based projects involving older people. The concluding remarks address the influence of group dynamics on PAR, whether frail older adults can be expected to take an active part in PAR projects and the extent to which the results from such community-based PAR projects can be generalised.

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Section: Introductionmentioning

confidence: 99%

Circles of impacts within and beyond participatory action research with older people

2020

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“…In a review on the impact of involving older adults in research that encompassed 30 studies, most studies did not give further participant details other than that the participants were aged 50+ (Fudge et al, 2007). In another review that encompassed nine studies, older adults as co-researchers were seen in some of the studies to have experience from the area being studied or had old-age-related conditions, but most studies did not give further participant details (Baldwin, Napier, Neville and Wright-St Clair, 2018). Baldwin et al found that older co-researchers experienced both benefits and challenges when participating in research: psychological and social benefits, new learning, activism and career opportunities but also demanding workloads, difficult relationships and dissatisfaction with the level of involvement.…”

Section: Introductionmentioning

confidence: 99%

“…Baldwin et al found that older co-researchers experienced both benefits and challenges when participating in research: psychological and social benefits, new learning, activism and career opportunities but also demanding workloads, difficult relationships and dissatisfaction with the level of involvement. Academic researchers who included older co-researchers in their research experienced new learning and shared workloads, but also demanding workloads and difficult relationships (Baldwin et al, 2018). In their review, Fudge et al found anecdotal evidence that the involvement of older adults as co-researchers resulted in changes on the individual level but found little evaluation of how such involvement changed research processes or outcomes (Fudge et al, 2007).…”

Section: Introductionmentioning

confidence: 99%

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

2020

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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.

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“…The review found only four studies which formally evaluated involving older people in the research studies using different evaluation methods ranging from questionnaire to an ethnographic approach. A recent systematic review evaluated the impacts of involving older adults in health and social care research on older co-researchers, academic researchers and research processes 28 . The review analysed nine articles using a qualitative methodology evaluating older adults' involvement in research.…”

Section: Introductionmentioning

confidence: 99%

A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research

et al. 2020

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Background: There has been a policy shift towards public and patient involvement (PPI) in population health and health services research in Ireland and internationally. Despite growing evidence that PPI can have positive impacts on the quality and appropriateness of health research, little is known about the involvement and impact of older adults as research partners. The aim of this study is to 1) describe the process of establishing a PPI panel of older adults, family carers and ageing research academics and 2) to evaluate the impact of this research partnership on all research partners. Methods: A partnership-focused framework will guide the recruitment and establishment of a PPI panel of older adults, family carers and academic researchers. Eight to ten older adults and four to six family carers with experience of using health services will be recruited through gatekeepers in a range of non-governmental, voluntary, and community organisations in the Mid-West region of Ireland. Academic researchers will be recruited through the Ageing Research Centre at the University of Limerick. To evaluating the impact of the research partnership on all members of the PPI panel we propose to record an activity log, maintain a record of all meeting, panel discussions and conduct individual interviews with all members of the research team at key time points. The final plan for evaluation will be negotiated and agreed with all members of the PPI panel. Data will be transcribed, managed in NVivo and analysed using an inductive approach to thematic analysis. Dissemination of research findings will be facilitated by the research partnership team of academics and older adults. Discussion: This study will identify learning about the process of establishing a PPI panel guided by a partnership-focused framework and will evaluate the impact of participation in a PPI panel for all members of the research team.

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Impacts of older people’s patient and public involvement in health and social care research: a systematic review

Cited by 71 publications

References 21 publications

Circles of impacts within and beyond participatory action research with older people

Circles of impacts within and beyond participatory action research with older people

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

A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research

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