scholarly journals Engagement with a Diverse Stakeholder Advisory Council for Research in Dementia Care

2021 ◽  
Author(s):  
Sara Suzanne Masoud ◽  
Ashlie A. Glassner ◽  
Neela Patel ◽  
Mayra Mendoza ◽  
Deborah James ◽  
...  
Keyword(s):  
Stakeholder Engagement ◽  
Social Care ◽  
Family Care ◽  
Research Process ◽  
Dementia Care ◽  
Advisory Council ◽  
Structured Interviews ◽  
Care Research ◽  
Care Partners ◽  
Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N=11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n=2); family care partners (n=4), and health and social care professionals in dementia care (n=5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

scholarly journals Engagement with a diverse Stakeholder Advisory Council for research in dementia care

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sara S. Masoud ◽  
Ashlie A. Glassner ◽  
Neela Patel ◽  
Mayra Mendoza ◽  
Deborah James ◽  
...  
Keyword(s):  
Stakeholder Engagement ◽  
Social Care ◽  
Family Care ◽  
Research Process ◽  
Dementia Care ◽  
Advisory Council ◽  
Structured Interviews ◽  
Care Research ◽  
Care Partners ◽  
Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

scholarly journals Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Samantha Treacy ◽  
Steven Martin ◽  
Nelum Samarutilake ◽  
Tine Van Bortel
Keyword(s):  
Systematic Review ◽  
Scoping Review ◽  
Public Involvement ◽  
Social Care ◽  
Positive Impact ◽  
Research Process ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

scholarly journals Engaging multi-stakeholder perspectives to identify dementia care research priorities

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Neela K. Patel ◽  
Sara S. Masoud ◽  
Kylie Meyer ◽  
Angelica V. Davila ◽  
Sheran Rivette ◽  
...  
Keyword(s):  
Learning Community ◽  
Family Caregivers ◽  
Social Care ◽  
Research Priorities ◽  
Dementia Care ◽  
Advisory Council ◽  
Research Approach ◽  
Research Topics ◽  
Care Research ◽  
Multi Stakeholder

Abstract Objectives The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. Methods Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as “Not so important,” “Important,” or “Very important.” Priorities for dementia care were summarized by frequencies and proportions. Results A total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as “Very Important”. High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%). Conclusions This project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

scholarly journals Monitoring and improving the quality of person-centred care in health and social settings using Dementia Care Mapping (DCM): Staff experiences of implementation barriers and supports

2016 ◽  
Vol 4 (1) ◽  
pp. 17 ◽  
Author(s):  
Stephanie Jones ◽  
Janine Hamilton ◽  
Claire Surr
Keyword(s):  
Social Care ◽  
Care Quality ◽  
Dementia Care ◽  
Quality Monitoring ◽  
Management Support ◽  
Structured Interviews ◽  
Rater Reliability ◽  
Health And Social Care ◽  
Care Mapping ◽  
Dementia Care Mapping

Background: Dementia Care Mapping (DCM) is a person-centred care quality monitoring and improvement tool used for nearly 20 years in formal dementia care settings and there are thousands of people trained in its use internationally. However, little is known about if and how DCM is used in practice or regarding application of inter-rater reliability checks to ensure data quality. Aims and Objectives: This study aimed to explore the application of DCM in practice in the UK. Methods: A mixed methods design including an on-line survey and in-depth, semi-structured interviews was employed. Results: There were 98 survey respondents, representing 71 health and social care, University/research and training/consultancy organisations. Twenty-one people participated in the semi-structured interviews. Fifty-nine percent of survey respondents had used DCM since completing training. Those working in clinical roles and in health and social care provider organisations were least likely to have used DCM. A range of barriers and supports to use of DCM in practice after training were reported, including lack of management support and time. The majority of those who had used DCM also conducted inter-rater reliability checks at least once per year or more frequently. Of the 20% who did not the main barriers to this were absence of someone to conduct the checks with and lack of time and resources. Discussion and Conclusions: The study has shown that it is possible to apply an evidence-based quality monitoring and improvement tool such as DCM to support implementation of person-centred care in practice, despite widespread limitations on time and resources as well as to identify a range of setting conditions that can help or hinder implementation.

scholarly journals Adapting the SHARE Program for Use With Families Facing the Challenges of Chronic Illness

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 626-626
Author(s):  
Silvia Orsulic-Jeras ◽  
Carol Whitlatch
Keyword(s):  
Chronic Illness ◽  
Disease Progression ◽  
Chronic Conditions ◽  
Family Care ◽  
Diagnostic Procedures ◽  
Dementia Care ◽  
Evidence Based ◽  
Positive Outcomes ◽  
Community Settings ◽  
Care Partners

Abstract Advances in diagnostic procedures have helped to make diagnosing Alzheimer’s disease and other dementias more accurate and to occur earlier in the disease progression. For persons living with dementia and their family care partners, finding programs that meet their needs for support post diagnosis can be challenging. Likewise, for persons with chronic conditions, few programs exist which help care dyads to create a manageable plan of care that addresses each person’s concerns and fears. SHARE, (Support, Health, Activities, Resources, and Education), originally designed for dementia care partners, has shown positive outcomes for both members of the care partnership. This presentation describes the development of the six-session SHARE intervention, its implementation in community settings, and its current standing as an evidence-based program and product that has been commercialized. Discussion will also focus on adapting SHARE for use with chronic illness families, highlighting revisions to program procedures, materials, recruitment, and evaluation.

scholarly journals The importance of a room with a view for older people with limited mobility

2018 ◽  
Vol 19 (4) ◽  
pp. 273-285 ◽  
Author(s):  
Charles Musselwhite
Keyword(s):  
Older People ◽  
Design Methodology ◽  
Social Care ◽  
Structured Interviews ◽  
Content Type ◽  
Limited Mobility ◽  
Human Element ◽  
Health And Social Care ◽  
Vantage Points ◽  
Practical Implications

Purpose The purpose of this paper is to examine how older people who are almost entirely housebound use a view from their window to make sense of the world and stay connected to the outside space that they cannot physically inhabit. Design/methodology/approach Semi-structured interviews with 42 individuals were carried out who were living at home, were relatively immobile and had an interesting view outside they liked from one or more of their windows. Findings The findings suggest that immobile older people enjoy watching a motion-full, changing, world going on outside of their own mobility and interact and create meaning and sense, relating themselves to the outside world. Practical implications Findings suggest that those working in health and social care must realise the importance of older people observing the outdoors and create situations where that is enabled and maintained through improving vantage points and potentially using technology. Originality/value This study builds and updates work by Rowles (1981) showing that preference for views from the window involves the immediate surveillance zone but also further afield. The view can be rural or urban but should include a human element from which older people can interact through storytelling. The view often contains different flows, between mundane and mystery and intrigue, and between expected and random.

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