JMIR Publications

ABSTRACT

Background:

Research and policy demonstrate the value and need for systematic inclusion of care partners in hospital care delivery of people living with Alzheimer's 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. In order to promote care partner’s 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:

To describe the study protocol for the development and refinement of the ADRD Systematic Hospital Inclusion Family Toolkit (A-SHIFT).

Methods:

The A-SHIFT study protocol will employ a three-aimed, convergent mixed method approach to iteratively develop and refine 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 healthcare system facilitators and barriers to the inclusion of 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 three aims to increase 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 hospitalization of people living with ADRD, and 3) a converged-upon, ready for feasibility testing of the toolkit to guide inclusion of care partners in hospital care of people living with ADRD.

Conclusions:

We anticipate that the resultant A-SHIFT will provide health systems 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. Clinical Trial: Not applicable.