Engaging multi-stakeholder perspectives to identify dementia care research priorities

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.

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

Research Involvement and Engagement ◽

10.1186/s40900-021-00297-8 ◽

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.

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

10.21203/rs.3.rs-300254/v1 ◽

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.

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Forest Research Priorities in Canada, 1991

The Forestry Chronicle ◽

10.5558/tfc68121-1 ◽

1992 ◽

Vol 68 (1) ◽

pp. 121-125 ◽

Cited By ~ 2

Keyword(s):

Forest Management ◽

Environmental Effects ◽

Research Priorities ◽

Classification Systems ◽

Advisory Council ◽

Small Scale ◽

Forest Research ◽

Research Topics ◽

Canadian Council ◽

Indian Lands

This third annual overview of forest research priorities across Canada has been prepared by the Forestry Research Advisory Council of Canada for the Canadian Council of Forest Ministers. It is based on input from the provincial and territorial forest research bodies, who were asked to give their top five priorities for forest research.The priorities so identified were assembled and assigned scores, ranging from five points for a jurisdiction's top priority down to one point for its lowest. The result is a list of 12 forest research topics presented here in descending order of priority.• Environmental effects of forest management.• Pest and weed management and alternatives to chemicals.• Decision support for management, silviculture and land use.• Ecological knowledge for intensive forest management.• Integrated resource management systems.• Site-productivity classification systems.• Growth and yield data for managed and unmanaged stands.• Silvicultural and harvesting methods and cost reduction.• Forest fire management and control.• Tree improvement and genetics.• Increasing forest productivity.• Wood processing and value-added products.The importance of modern information-handling systems, artificial intelligence, and biotechnology in conducting research was frequently mentioned by respondents, but because these are usually considered research tools rather than research topics, they have not been rated.Comparing this year's priorities with those of previous years might raise some concerns that priorities are changing faster than research programs can adjust. However, the current priorities are not new. Although wording and grouping may differ, they all were covered in the Research Priorities Overview for 1990, where most were identified as priorities by a majority of respondents. Identifying only the top five priorities in each jurisdiction has focused attention on the major problems and research needs and made it possible to simplify the categorization of the topics.Few of the 12 topics are considered adequately funded in any region and research on the environmental effects of forest management appears to be undersupported in all regions. All responses stress the importance of the federal-provincial forestry agreements in supporting research. Suggestions for improving support include placing more emphasis on cooperative programs such as interprovincial cooperation and joint approaches to funding agencies; the gathering of special pools of funds from industry and governments and their joint administration to support project proposals; and the reallocation of funds from work of lesser importance.Thirteen issues that may affect research priorities were identified as follows:• Public concern about forestry, the environment and sustainable development.• International opinion about Canadian forestry practices.• Globalization of trade and increased competition.• Economics of viable secondary forest-products industries.• Increasing requirements for information at all levels.• Shrinking forest land base for sustained timber harvest.• Forest modeling and sustainable harvests.• Information on the socioeconomic importance of the forests.• Monitoring the managed forest to ensure predicted yields.• Managing the boreal mixed-wood resource.• Forestry on Indian lands.• Small-scale forestry on farms and for shelterbelts.• Properties of wood from managed stands.A few of these topics have appeared in previous lists of research priorities in this series of overviews, for example, "Small-scale forestry on farms and for shelterbelts," "Forestry on Indian lands" and "Properties of wood from managed stands." They do not appear in the 1991 priority listing because they are not in the top five priorities in any jurisdiction. However, these and other concerns, many of which are local, must figure in the final mix of research projects undertaken by any agency.Forest research in Canada is considered pertinent to needs, but more effort to improve local applications of research results and increased funding for most regions are required.

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Dyads in Dementia Care: An International Perspective on Research Challenges and Opportunities

Innovation in Aging ◽

10.1093/geroni/igaa057.2731 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 757-757

Author(s):

Marie Boltz ◽

Karin Wolf-Ostermann ◽

Katie Maslow

Keyword(s):

Daily Practice ◽

Well Being ◽

International Perspective ◽

Dementia Care ◽

Research Approach ◽

Ethical Challenges ◽

Research Strategies ◽

Policy And Practice ◽

Challenges And Opportunities ◽

Informal Carers

Abstract Dementia poses a societal challenge that is life-changing not only for persons with dementia (PWD) but also for family members and friends (informal carers) directly involved in the care arrangement. Informal carers (IC) have typically poorer outcomes in terms of well-being, quality of life (QoL), health status, and use of health care resources. Dyads of PWD and IC living with dementia are characterized by strong reciprocal relationships and complex living contexts. Therefore, research should investigate home based dementia caregiving from a dyadic perspective to yield interventions that support the PWD, the IC, and the unit as a whole. However, it is an ongoing challenge to investigate dyadic needs and preferences in daily practice and develop effective interventions. Challenges are related to incomplete understanding of dyadic characteristics, attitudes and beliefs within the dyad, as well as how to adapt research approach to engage and retain the dyad in research. This international symposium will therefore address these issues. The first presentation will describe a typology of dementia care dyad characteristics and needs in Germany. The second presentation will examine the challenges and opportunities associated with recruiting and retaining dementia dyads. The third presentation will explore ethical challenges posed in communication with dyads and possible solutions for the researcher. The final presentation reports on the Meeting Centre Support Program as an example of an effective psychosocial intervention employing research strategies that transcend cultural barriers. Our discussant, Katie Maslow, will synthesize the presentations and lead a discussion of future directions for policy and practice.

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SHARED DECISION MAKING IN DEMENTIA CARE PLANNING: INVOLVING FAMILY CAREGIVERS

Innovation in Aging ◽

10.1093/geroni/igx004.2369 ◽

2017 ◽

Vol 1 (suppl_1) ◽

pp. 667-667

Author(s):

M. Vernooij-Dassen ◽

E. Mariani ◽

Y. Engels ◽

R. Chattat

Keyword(s):

Decision Making ◽

Family Caregivers ◽

Shared Decision Making ◽

Dementia Care ◽

Care Planning ◽

Shared Decision

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Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research

BMJ Open ◽

10.1136/bmjopen-2019-031187 ◽

2020 ◽

Vol 10 (2) ◽

pp. e031187 ◽

Cited By ~ 3

Author(s):

Maria-Jose Santana ◽

Sandra Zelinsky ◽

Sadia Ahmed ◽

Chelsea Doktorchik ◽

Matthew James ◽

...

Keyword(s):

Health Research ◽

Heart Diseases ◽

Research Priorities ◽

Research Programme ◽

Advisory Council ◽

Future Research ◽

Prediction And Prevention ◽

Participatory Health Research ◽

Working Together ◽

Oriented Research

ObjectivesThe overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta.DesignThis qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research.SettingLibin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada.ParticipantsA total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11).ResultsParticipants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases.ConclusionsIn this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.

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