Caregiver needs in end-of-life care are diverse, yet invisible: a narrative review.

Abstract

Background and objective: Informal caregivers are essential to home-based end-of-life (EOL) care. However, their needs are often not well-understood and described in relation to caregiving, rather than with a 'caregiver-centric' perspective. This review aimed to provide an overview of research on EOL caregiver needs, discussing the types of needs, factors that influence them, and gaps in supporting caregivers.

Methods: An unsystematic narrative review was performed to provide a broad overview of caregiver needs research. A targeted search was done on PubMed. Search terms included "caregiver needs", "concerns", "experiences", "palliative", "hospice", and "end-of-life". Qualitative and quantitative studies, reviews between January 2019 and November 2024. Selected papers were analysed to distil themes on the types of caregiver needs, as well as contextual factors and barriers that impact them. Assessment tools and processes were also included.

Key content and findings: A total of 63 papers were included. Major findings showed that caregivers often prioritize 'care-enabling needs'-such as information access and logistic support-over their personal 'direct support' needs-which encompasses the need for validation, recognition of their autonomy, and relational needs. While caregiver needs are increasingly appreciated, there remained substantial gaps in addressing them, the extent of which also varying due to contextual factors, such as patient's condition, availability of resources, and cultural norms. Barriers identified included ongoing prioritization of patient needs above self, suboptimal cultural sensitivity among providers, and general lack of needs assessment tools.

Conclusions: In EOL care, it is critical that providers acknowledge that caregivers are essential partners and a co-client to the patient. There is a need to recognize caregivers' direct support alongside care-enabling needs to ensure caregivers' well-being are also looked after. More attention can be given to increasing the visibility of caregiver needs by developing sensitivity to contextual factors and implementing assessment processes.