The Burden and Needs of Primary Caregivers in Home-Based Palliative Care: A Qualitative Study Based on Social-Ecological Systems Theory

Background Primary family caregivers bear heavy caregiving responsibilities in home-based palliative care and face multiple caregiving burdens and unmet support needs. Although previous studies made progress, they overlooked the interactions between individuals, families, and society. Methods Thirteen caregivers providing home-based palliative care in Kunming, China, answered semi-structured interviews. Data were analyzed using Colaizzi's seven-step method. NVivo software (version 11.0) was used for coding. Results Based on the social ecosystem theory, three major themes and 10 subthemes were identified: (1) microsystem—caregiver distress and growth coexist (subthemes: neglect of self-health, caregiving distress, emotional needs, gaining personal growth, and insights into life); (2) mesosystem—lack of family and community support (subthemes: lack of effective family support, heavy economic burden, gap in doctor-patient communication); and (3) macrosystem—social and cultural environment (subthemes: lack of information support channels, insufficient social support, and constraints of traditional views on death). Conclusions Caregivers in home palliative care exhibit multi-level and interactive burdens and needs. Healthcare professionals must pay attention to caregivers' mental health and alleviate caregiving stress by providing home palliative care training, promoting family support, and improving social services.