Considerations of equity in the development of tools that identify and respond to end-of-life carer support needs: a scoping review protocol

Abstract

Introduction: Informal caregivers are essential in supporting end-of-life patients at home but are often ill-prepared for the carer role. There is growing interest in the development of tools to assess caregiver support needs and a recognised need for a greater focus on addressing inequities in end-of-life care. We plan to undertake a scoping review of available literature to (1) identify and describe tools developed to assess the support needs of informal caregivers in end-of-life care; (2) report on any inequities and under-represented groups in tool development and use.

Methods and analysis: The review will conform to best practice methodological guidance (Joanna Briggs Institute) for scoping reviews. The search strategy will target published and unpublished studies using any methodology, which reports on developing or using tools or measures to assess informal carer support needs in end-of-life/palliative care settings. The following databases will be searched: MEDLINE, CINAHL, PsycINFO, Web of Science, ASSIA and Proquest. Both title/abstract screening and full-text assessment will be undertaken to ensure eligibility. Searches will be conducted between May and December 2024. We will extract data relating to (1) tools/measures identified, and outcome measures used to assess these; (2) participant characteristics. Extracted data will be tabulated with accompanying narrative description to address the review objectives. Data will be extracted and write-up will be completed between January and May 2025.

Ethics and dissemination: This scoping review will provide an overview of the tools developed to identify and assess informal caregiver support needs in palliative and end-of-life care. The identification of any inequities will increase awareness of potentially underserved groups and contexts within the current literature, highlighting how future research and resource can be more equitably focused and implemented in a way that does not further embed disparity. Findings will be made publicly available through the Open Science Framework and disseminated through a peer-reviewed publication. As a scoping review of available literature, this work does not require ethical approval.

Keywords: Adult palliative care; Caregiver Burden; Caregivers; Review.