December 8, 2021
Continue reading
Resource Type
Challenges conducting pragmatic trials of interventions for care partners of people living with dementia
November 2021 – In Grand Rounds 21, Drs. Penfold, Hanson, and Fortinsky, describe challenges from three pragmatic trials to share lessons learned and ideas for how to overcome these challenges in future research.
Robert Penfold, PhD
Senior Investigator, Kaiser Permanente
Washington Health Research Institute
Leah Hanson, PhD
Senior Research Investigator,
Health Partners Institute
Richard H. Fortinsky, PhD
Professor and Health Net, Inc. Endowed Chair in Geriatrics and Gerontology
UConn Center on Aging
Learning Objectives
- Be familiar with some legal, ethical and logistical barriers to recruiting caregivers and measuring caregiver outcomes
- To gain knowledge about the potential for mindfulness to reduce stress and depressive symptoms in care partners
- Explain how issues involving consent and HIPAA authorization could be addressed and resolved during the IRB approval process in pragmatic trials compared to more conventional clinical trials.
Creating Effective Value Propositions: Engaging key stakeholders in embedded pragmatic clinical trials (ePCTs) to evaluate evidence based programs in dementia care
The NIA IMPACT Collaboratory Cores and Teams are creating a series of guidance documents to share important considerations and approaches to planning and conducting embedded pragmatic clinical trials (ePCTs) with people living with dementia (PLWD) and their care partners.
The first of these documents is, “Creating Effective Value Propositions” developed by the Implementation Core. The guide provides a definition and rationale for using value propositions to communicate value and address potential concerns of key stakeholders related to conducting ePCTs of programs/interventions in dementia care. Six steps for developing value propositions are described, and examples are shared.
Citation: Creating Effective Value Propositions: Engaging key stakeholders in embedded pragmatic clinical trials (ePCTs) to evaluate evidence based programs in dementia care. NIA IMPACT Collaboratory; 2021. doi: doi.org/10.58234/80661959
Click to view Value Proposition
Dyadic designs, their foundation on theory and analytic methods
October 2021 – In Grand Rounds 20, Dr. Lyons explains a dyadic approach to illness and care, as well as the role of theory and concepts, design and methodological considerations, and family and culture in dyadic research.
Speakers
Karen S. Lyons, PhD, FGSA (she/hers)
Professor
Boston College
William F. Connell School of Nursing
@KSLCareDyads
Learning Objectives
- Understand what is meant by “dyad as unit of analysis or focus.”
- Understand the importance of theory and concepts as foundations to dyadic research.
- Understand some of the design and methodological considerations in designing and conducting dyadic research.
Stakeholder Perspectives: Engaging and Working Effectively with Individuals Living with Dementia as Stakeholder Advisors and Research Partners
September 28, 2021
Members of the Executive Committee for the IMPACT Engaging Partners Team have collaborated to create a guide for researchers seeking stakeholder advisors living with dementia.
Brenda Nicholson, MD , and Louise Phillips, MD, MBA, are retired physicians who are living with dementia. Both have participated as stakeholder advisors and research partners for important research-related initiatives on dementia care and services. They collaborated with Katie Maslow, MSW, to create the perspective piece entitled, Engaging and Working Effectively with Individuals Living with Dementia as Stakeholder Advisors and Research Partners.
Dr. Nicholson and Dr. Phillips provided three reasons why they participate as stakeholder advisors and research partners in dementia care research:
- They hope to encourage more research on topics that are important and relevant for the well-being of people living with dementia and their families
- They hope their participation will help convince researchers that it is valuable to include people living with dementia as research partners in their dementia care studies; so, in a sense, to “break through the glass ceiling” in this research area
- They hope their involvement as research partners will be a clear and present reminder to research team members of the real human needs of people living with dementia, which are sometimes lost in the strong focus on research procedures and challenges.
Dr. Nicholson and Dr. Phillips drew on their own experiences to offer tips to researchers, but also emphasized that each person living with dementia has their own unique needs and circumstances to consider. Their tips suggest the importance of considering the needs of stakeholder advisors throughout the engagement process; from planning the meeting format and time commitment, through post-meeting follow-up. They stress the importance of providing multiple opportunities for advisors to share their ideas and have their voices heard. The full perspective piece can be found at this link.
Citation: Stakeholder Perspectives: Engaging and Working Effectively with Individuals Living with Dementia as Stakeholder Advisors and Research Partners. NIA IMPACT Collaboratory; 2021. doi: doi.org/10.58234/32478403
Click to view Stakeholder Perspectives