Caring for the Informal Caregivers: Systematic Review of Unmet Needs in Palliative Care

This review aims to describe the literature on the unmet needs of family/informal caregivers of patients in palliative care and the tools used to assess them.

What are the unmet needs of informal caregivers of palliative care patients? Which are the tools used to assess them?

Systematic review reported according to the PRISMA guidelines.

A comprehensive literature search was performed in Cochrane Library, PubMed, Embase, CINAHL, Scopus and Web of Science databases. Additional searches included reference lists of relevant articles and Google Scholar. Study methodological quality was evaluated using the Joanna Briggs Institute tools, and the certainty of evidence was assessed according to the Oxford Centre for Evidence-Based Medicine. Article selection, quality assessment, and risk of bias evaluation were conducted independently by two reviewers.

The review included 17 studies conducted in different palliative care settings-hospice, home care, hospital wards-mostly cross-sectional (58.9%) and with high methodological quality (96%, range 80%-100%). The unmet needs of caregivers persisted across settings and mainly concerned information, practical support and emotional well-being. Additionally, the limited number of validated assessment tools specific for palliative care caregivers was highlighted.

Crucial unmet needs of caregivers of patients in palliative care were identified, which warrant targeted interventions to improve the well-being of caregivers and patients in palliative care. The impact of innovative digital health tools and remote systems to support caregivers should be explored.