Family Perspectives and Support Needs for Pediatric Hospice and Palliative Care in South Korea

Background : Pediatric hospice and palliative care (PHPC) in South Korea remains in its early stages, influenced by cultural taboos surrounding death and its frequent association with geriatric care. While focusing on South Korean parents, this study also provides insights into cultural barriers common among Asian families with collectivist values. This qualitative study explored parental perceptions and cultural barriers to address the current evidence gap and to inform the development of culturally sensitive PHPC models in South Korea. Methods : Semi-structured interviews were conducted with 13 participants (12 parents and one patient) recruited from a tertiary hospital in South Korea. Participants were caregivers of children with serious chronic complex illnesses, including both malignant and non-malignant serious chronic or potentially life-limiting conditions. Data collection continued until pragmatic thematic saturation was achieved, and transcripts were analyzed using Krippendorff’s content analysis with an inductive coding approach. Results : Four overarching themes emerged: (1) cognitive and emotional barriers related to stigma and misconceptions; (2) perceived multidimensional benefits beyond clinical care; (3) family-centered support needs; and (4) strategies to optimize PHPC delivery. Many parents described experiences consistent with transgenerational guilt, reflecting feelings of guilt about passing an illness or vulnerability to their child, which emerged as a potential psychological barrier to PHPC engagement. Conclusion : A substantial gap exists between recognition of PHPC and parental willingness to utilize services. Reframing PHPC as an early, concurrent support system led by healthcare professionals and supported by culturally sensitive communication may reduce parental guilt and improve access to family-centered palliative care services.