Engaging older adults as partners in transitional care research

Ganann, Rebecca; McAiney, Carrie; Johnson, W. R.

doi:10.1503/cmaj.180396

Cited by 10 publications

(15 citation statements)

References 7 publications

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“…Further details on patient engagement within ACHRU 22 and 1 of the 17 projects has been published elsewhere. 22 , 35 , 36 …”

Section: Resultsmentioning

confidence: 99%

“… 24 We learned the importance of working with our patient partners to create clear expectations for patient roles and responsibilities and were careful not to make assumptions about what roles patient partners can fulfill. 35 We continuously explored new opportunities for patient engagement within specific research projects and the research program.…”

Section: Lessons Learnedmentioning

confidence: 99%

“…A key learning from this experience was that engagement opportunities needed to be flexible with respect to the location, timing, and role in the research to accommodate individual needs and preferences. 35 We learned the importance of gaining an understanding of the characteristics, demographics, preferences, and needs of our patient partners and identify any potential barriers to participation in the research.…”

Section: Lessons Learnedmentioning

confidence: 99%

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Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Markle‐Reid

Ganann

Ploeg

et al. 2021

Journal of Multimorbidity and Comorbidity

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Background: Patient “engagement” in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners. Objectives: This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners. Methods: We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners. Results: ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement. Conclusion: The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.

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“…Further details on patient engagement within ACHRU 22 and 1 of the 17 projects has been published elsewhere. 22 , 35 , 36 …”

Section: Resultsmentioning

confidence: 99%

Section: Lessons Learnedmentioning

confidence: 99%

Section: Lessons Learnedmentioning

confidence: 99%

See 1 more Smart Citation

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Markle‐Reid

Ganann

Ploeg

et al. 2021

Journal of Multimorbidity and Comorbidity

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“…This project will have meaningful results for patients as the outcomes will address not only their unmet needs but reflect issues important to them. Further, the study results will support the continued development of our patient- and community-centred research agenda [ 72 , 82 ]. The use of a pragmatic effectiveness-implementation trial will enhance the relevance of the results for practitioners and policy makers, thereby reducing the research-practice gap and enhance the sustainability and scalability of the intervention.…”

Section: Discussionmentioning

confidence: 79%

“…Third, engaging patients, caregivers and members of the public in all aspects of the research is a strength that is a core component of patient-oriented research [81]. The importance of engaging patients (including caregivers and other member of the public) in patient-oriented research has been increasingly recognized in the research community [82]. In our study, patients, caregivers and members of the public will be engaged in a number of ways including serving as co-investigators identifying patient-and caregiver-relevant outcomes, advising on the implementation of CAST in the study settings, and developing recommendations for engaging older adults and caregivers in future transitional care activities.…”

Section: Discussionmentioning

confidence: 99%

Study protocol for a hospital-to-home transitional care intervention for older adults with multiple chronic conditions and depressive symptoms: a pragmatic effectiveness-implementation trial

et al. 2020

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Background: Older adults (> 65 years) with multiple chronic conditions (MCC) and depressive symptoms experience frequent transitions between hospital and home. Care transitions for this population are often poorly coordinated and fragmented, resulting in increased readmission rates, adverse medical events, decreased patient satisfaction and safety, and increased caregiver burden. There is a dearth of evidence on best practices in the provision of transitional care for older adults with MCC and depressive symptoms transitioning from hospital-tohome. This paper presents a protocol for a two-armed, multi-site pragmatic effectiveness-implementation trial of Community Assets Supporting Transitions (CAST), an evidence-informed nurse-led six-month intervention that supports older adults with MCC and depressive symptoms transitioning from hospital-to-home. The Collaborative Intervention Planning Framework is being used to engage patients and other key stakeholders in the implementation and evaluation of the intervention and planning for intervention scale-up to other communities. Methods: Participants will be considered eligible if they are > 65 years, planned for discharged from hospital to the community in three Ontario locations, self-report at least two chronic conditions, and screen positive for depressive symptoms. A total of 216 eligible and consenting participants will be randomly assigned to the control (usual care) or intervention (CAST) arm. The intervention consists of tailored care delivery comprising in-home visits, telephone follow-up and system navigation support. The primary measure of effectiveness is mental health functioning of the older adult participant. Secondary outcomes include changes in physical functioning, depressive symptoms, anxiety,

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Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

Vellani,

Yous,

Rivas

et al. 2023

Health Expectations

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BackgroundPatient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.Research Design and ObjectiveAn interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.FindingsThirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.Discussion and ImplicationsInternational projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.Patient or Public ContributionPPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

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Engaging older adults as partners in transitional care research

Cited by 10 publications

References 7 publications

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Study protocol for a hospital-to-home transitional care intervention for older adults with multiple chronic conditions and depressive symptoms: a pragmatic effectiveness-implementation trial

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

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