Background: Research and policy demonstrate the value and need for the systematic inclusion of care partners in hospital care delivery of people living with Alzheimer disease and related dementias (ADRD). Support provided to care partners through information and training regarding caregiving responsibilities is important to facilitating their active inclusion and ultimately improving hospital outcomes of people living with ADRD. To promote care partners' active inclusion, a toolkit that guides health systems in the identification, assessment, and training of care partners is needed. User-centered approaches can address this gap in practice by creating toolkits that are practical and responsive to the needs of care partners and their hospitalized family members and friends living with ADRD.
Objective: This paper describes the study protocol for the development and refinement of the ADRD Systematic Hospital Inclusion Family Toolkit (A-SHIFT). A-SHIFT will provide health care systems with guidance on how to effectively identify, assess, and train care partners of hospitalized persons living with ADRD.
Methods: The A-SHIFT study protocol will use a 3-aimed, convergent mixed method approach to iteratively develop and refine the toolkit. In Aim 1, we will use a systems-engineering approach to characterize patterns of care partner inclusion in hospital care for people living with ADRD. In Aim 2, we will partner with stakeholders to identify and prioritize health care system facilitators and barriers to the inclusion for care partners of hospitalized people living with ADRD. In Aim 3, we will work with stakeholders to co-design an adaptable toolkit to be used by health systems to facilitate the identification, assessment, and training of care partners of hospitalized people living with ADRD. Our convergent mixed method approach will facilitate triangulation across all 3 aims to increase the credibility and transferability of results. We anticipate this study to take 24 months between September 1, 2022, and August 31, 2024.
Results: The A-SHIFT study protocol will yield (1) optimal points in the hospital workflow for care partner inclusion, (2) a prioritized list of potentially modifiable barriers and facilitators to including care partners in the hospitalization of people living with ADRD, and (3) a converged-upon, ready for feasibility testing of the toolkit to guide the inclusion of care partners of people living with ADRD in hospital care.
Conclusions: We anticipate that the resultant A-SHIFT will provide health systems with a readiness checklist, implementation plan, and resources for identifying, assessing, and training care partners on how to fulfill their caregiving roles for people living with ADRD after hospital discharge. A-SHIFT has the potential to not only improve care partner preparedness but also help reduce health and service use outcomes for people living with ADRD after hospital discharge.
International registered report identifier (irrid): DERR1-10.2196/45274.
Keywords: caregiving; co-design; dementia; health care; mixed methods; systems.
©Beth Fields, Catherine Still, Austin Medlin, Andrea Strayer, Alicia I Arbaje, Andrea Gilmore-Bykovskyi, Nicole Werner. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 16.05.2023.