“A Child’s Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214)

Abstract

Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-methods survey- and interview-based exploration of perspectives and needs of community-based hospice nurses who provide care to children with serious illness and their families at the end of the life 3. Characterize and explain how to implement a spoke-and-hub model for providing hospice nurses with pediatric-specific training, support, and solidarity Approximately 500,000 children in the United States suffer from serious illness, of whom 10% die annually. Optimal provision of hospice services can lessen symptom burden and improve quality of life, reduce parental psychosocial stress, decrease costs, and limit clinician distress. Nonetheless, only 1 in 10 dying children receive hospice care, usually through adult organizations, and few community hospice nurses receive pediatric-specific training, resources, and support. In this concurrent session, interdisciplinary pediatric palliative care physicians and advance practice providers will partner with community-based hospice nurses to propose a resource-efficient, comprehensive intervention to address this challenge. First, they will review existing research findings, including a mixed-methods survey study of >550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi, and an interview-based, qualitative study of 41 of hospice nurses representing various levels of self-reported comfort with caring for children at the end of life (eg, very comfortable, somewhat comfortable, somewhat uncomfortable, very uncomfortable). The survey study found that nearly 90% of nurses had no pediatric palliative care training, 50% had no pediatric hospice experience, those with exposure described limited training (eg, online module, 2-day course), and few had opportunities to build skills. Both the survey and interviews revealed that nurses reported overwhelming discomfort with pediatric-specific care, clearly articulated gaps in training and support, and expressed a strong desire for further pediatric-specific education, resources, and support. Next, presenters will propose a spoke-and-hub model driven by community hospice nurses’ insights and recommendations, in which pediatric academic centers partner with community hospices to bring clinicians together regularly to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time.