The burden and needs of primary caregivers in home-based palliative care: a qualitative study based on social-ecological systems theory

Abstract

Background: Primary family caregivers bear heavy caregiving responsibilities in home-based palliative care, and face multiple caregiving burdens and unmet support requirements. Although previous studies have made progress, they have overlooked the coexisting influences between individuals, families, and society. Methods: A descriptive qualitative study was conducted. Using purposive sampling, 13 community-based palliative care caregivers in Kunming, China, were selected to participate in the study. Semi-structured interviews were conducted with the participants between June and August 2023, and the data were analysed using directed content analysis. Results: Based on social ecosystem theory, three main themes and 12 subthemes were identified: (1) Microsystem, wherein caregiver distress and growth coexist (subthemes: physical burden and health management needs, emotional burden and psychological support needs, difficulties in caregiving practices, insights into life and personal growth); (2) Mesosystem, where there is insufficient community and family support (subthemes: lack of effective family support, heavy economic burden, gap in doctor–patient communication, lack of information access channels, shortage of professional community service resources); (3) Macrosystem, where there is lack of policy and cultural safeguards (subthemes: implementation of security policies, improve policy coverage, social taboos surrounding the topic of death). Conclusions: Caregivers in home palliative care exhibit multiple burdens and needs. Healthcare professionals should focus on caregivers’ mental health and alleviate caregiving stress by providing home palliative care training, promoting family support, and improving social services.