The needs of family caregivers of patients at the end-of-life stage: A scoping review.

BACKGROUND Although previous literature has centered on the needs of family caregivers for terminally ill patients, most review articles published in the last twenty years have focused on such caregivers in specific conditions or settings, lacking an updated, holistic overview of relevant research.

PURPOSE To summarize the literature on the expressed needs of family caregivers of patients at the end-of-life stage over the last two decades and to lay a scientific foundation for formulating future policies, regulations, and action strategies.

METHODS A systematic search of relevant literature published between January 2004 and September 2024 in China National Knowledge Infrastructure, Wanfang Data Knowledge Service, VIP Data Knowledge Service, Web of Science, Scopus, PubMed, CINAHL, Ovid, and ProQuest databases. The literature was screened and included using the scoping review method. The contents of the included literature were extracted and summarized.

DISCUSSION A total of 57 articles were included. Of these, 30 were qualitative studies, 23 were quantitative studies, and four were mixed-method studies. The needs of family caregivers of the terminally ill extend to multiple domains. The needs of family caregivers are predominantly characterized by the enabling needs that caregivers must fulfill in order to care for the patient. These include information and communication needs, as well as healthcare and other services. Of the direct needs related to the caregivers themselves, psychological and social needs are the most common. The following factors have been identified as being associated with the needs of caregivers: caregiver, the patient, and the caregiving situation. However, the findings of the study were not consistently replicable.

CONCLUSION The needs of family caregivers of the terminally ill are multidimensional, dynamic, and individualized. The national government should implement dedicated strategies and enact legislation to clarify their rights and protections, while integrating key support services into the medical insurance payment system. At the institutional level, healthcare providers must establish standardized needs assessment and referral mechanisms, and set up in-hospital support centers to provide caregivers with ongoing information, skills training, and resource navigation.