Engagement and Quality of Life in Under–represented Older Adults: A Community–Based Participatory Research Project

Brown, Ellen R.; Lu, Yuqian; Beaven, Joyce; Hendrie, Hugh C.; Hanson, Karen; Carvell, Carly A.; Austrom, Mary Guerriero

doi:10.1353/nib.2017.0025

Cited by 8 publications

(6 citation statements)

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“…Consequently, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia (ADRD) and resources to support these caregivers and their care recipients. Caregivers of people living with dementia often experience physical, emotional, physiological, and financial challenges [ 2 - 4 ]. Caregivers who experience excessive burden are at an increased risk of mood disorders, cognitive decline, cardiovascular diseases, and other ailments that decrease their health [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study

et al. 2022

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Background Estimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. Objective The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. Methods A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. Results Quantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. Conclusions CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.

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Section: Introductionmentioning

confidence: 99%

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study

et al. 2022

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“…The first category concerned developing a deeper understanding of the experiences of older adults and the issues to be considered in research by including older people in designing and developing the study ( e.g. Doyle and Timonen, 2010; Tanner, 2012; Brown et al ., 2017; Mey and van Hoven, 2019). Research conducted ‘from the perspective of those immediately concerned by the issues being investigated, rather than through the lens of researchers’ preconceptions and priorities’ (Doyle and Timonen, 2010: 245) was linked to enhanced data quality for three reasons.…”

Section: Resultsmentioning

confidence: 99%

“…Very few studies reported how older co-researchers were involved in this stage: those that did emphasised the role of partnerships and trust building between agencies, academics and older people early in the project (e.g. Fenge et al, 2010;Yankeelov et al, 2015;Brown et al, 2017). In Yankeelov et al (2015), a funded coalition consisting of service providers, charities and older residents was set up to oversee the project and ensure its focus on tackling health disparities for rural people with diabetes.…”

Section: Developing the Studymentioning

confidence: 99%

Co-research with older people: a systematic literature review

James

Buffel

2022

Ageing and Society

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Interest in co-research with older adults has grown in the past 20 years, yet few published studies have addressed why and how older people have been involved as partners in research. This article presents a systematic review of the literature, examining the aims and challenges of co-research and the ways in which older adults can be involved in research. Systematic searches covering several databases were conducted, yielding a total of 3,293 articles, with 27 papers reviewed which involved older people as co-researchers across more than one stage of the research cycle. We find that co-research with older people offers improved understandings of the issues facing older people; more inclusive and responsive policy, practice and service design; and opportunities for co-researchers to develop new skills whilst giving voice to marginalised groups of older people. The analysis highlights the different ways in which older adults can be involved across phases of research, and identifies ethical, methodological and practical challenges encountered in the process. Involving older adults as co-researchers, while labour intensive and practically challenging, holds promise as an underdeveloped resource for social gerontology, as well as older people themselves. The paper identifies four pathways for improving and extending co-research: developing diversified structures of involvement, supporting co-researchers, embedding research rigour and ensuring co-ownership of change.

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“…Additionally, the project relied on the senior author's existing partnerships with community members to serve on the CAB and to identify other potential members. Developing long-standing community partnerships prior to a scientific project's initiation has been identified as an important part of successful community-based research (Brown et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Stakeholder Engagement to Enhance Interventions for Family Caregivers of People with Dementia: A Case Study of Care to Plan

McCarron

Finlay

Sims

et al. 2018

Journal of Gerontological Social Work

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Family members are prominent providers of necessary care to persons with dementia. The psychological, emotional, and social costs of care have led to the development of interventions to support these families. Although evidence supports the effectiveness of dementia caregiver interventions, few have been implemented into practice. Stakeholder involvement may increase the potential for interventions to be integrated into community contexts. Utilization of community advisory boards (CABs) have been identified as a successful strategy to engage stakeholders in research and intervention development. Yet, little is known about the use of CABs when developing and refining interventions in dementia care. This article presents a case study of a CAB intended to inform the development and translation of an online dementia caregiver resource: Care to Plan. Qualitative thematic analysis of transcripts from seven CAB meetings over a 3-year period identified two major categories. First, the CAB process: who participated, how meetings were conducted, and issues that arose. Second, Care to Plan improvement: how CAB members provided key stakeholder perspectives resulting in changes in language, functionality, substance, and dissemination. Findings demonstrate how CABs can inform gerontological social work when facilitating the development, translation, and implementation of meaningful, community-based resources for dementia caregivers.

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Engagement and Quality of Life in Under–represented Older Adults: A Community–Based Participatory Research Project

Cited by 8 publications

References 0 publications

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study

Co-research with older people: a systematic literature review

Stakeholder Engagement to Enhance Interventions for Family Caregivers of People with Dementia: A Case Study of Care to Plan

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