Challenges, Benefits, and Future Directions of Pediatric Home-Based End-of-Life Care: A Qualitative Study

ObjectivesPediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who are not specialist pediatric service providers. This study explores the challenges, benefits, and future directions of home-based EOL care as perceived by CPC nurses in New South Wales (NSW), Australia.MethodsEleven CPC nurses participated in a semi-structured interview to elicit information about their attitudes and experiences regarding their work in providing community-based EOL care to children. Reflexive thematic analysis was used to explore themes regarding the benefits, challenges and their thoughts on future directions regarding home-based EOL care.ResultsChallenges identified by CPC nurses included resource access, complexity of pediatric, models of care, and family psychological factors. Benefits included patient and family autonomy, home comforts and the nurses' sense of satisfaction. CPC nurses suggested the need for increased education, support and collaboration.ConclusionAreas of possible clinical and organizational improvements are discussed, including more pediatric training and experience for CPC nurses.