Attitudes and Experiences of Community Palliative Care Nurses Regarding Pediatric Home-Based End-of-Life Care: A Statewide Survey.

Abstract

Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at home. Methods: A total of 52 CPC nurses across New South Wales (NSW), Australia, participated in an online survey about their training, attitudes, and experiences regarding the provision of home-based pediatric EOL care. Participants were asked to reflect back over a "negative" experience of caring for a child at EOL, where things did not go as well as hoped, and a "positive" EOL care experience, where nurses perceived that care of the child and family went well, and respond to questions about these experiences. Results: Confidence of CPC nurses when providing EOL care to pediatric patients was significantly lower than when caring for adults (p's < .05). Most respondents expressed the desire for more training in pediatric EOL care. Cases identified as negative by CPC nurses did not significantly differ from positive cases in terms of the timing of the referral to CPC, clinical symptoms at EOL, or how well informed the nurses felt. Siblings were present at EOL in 74% of the negative experiences and 86% of the positive experiences, reportedly receiving significantly poorer support in the negative experiences (p = .002). Conclusion: This research contributes to an improved understanding of the challenges associated with home-based pediatric EOL care and highlights potential areas for improvement in CPC service delivery and training.