PM2012: A Call to Action: Involving Community Stakeholders in Design of an Intervention Responding to the Needs of Hospice Nurses Caring for Dying Children

Background: Approximately 50,000 children die annually in the United States. Home-based hospice care can improve end-of-life outcomes for children by decreasing symptom burden, improving quality of life, and mitigating parental psychosocial distress. Although the American Academy of Pediatrics strongly advocates for home-based care, pediatric-specific hospice care is not widely available in the community. Hospice services only reach about 10% of dying children in the United States, most of whom receive care through adult hospice agencies. Caring for children and families at end of life is uniquely challenging and requires pediatric-specific training. Unfortunately, few hospice nurses receive this vital education. Our previous population-level survey of hospice nurses across Tennessee, Arkansas, and Mississippi revealed that 90% of nurses lacked training in pediatric palliative or hospice care. In follow-up interviews, hospice nurses expressed an urgent need for improvements in pediatric-specific training and shared clear preferences for how education should be delivered. To address this critical need, we partnered with key regional stakeholders to develop an innovative model for providing hospice nurses with pediatric-specific training and support.

Methods: Utilizing a Community-Based Participatory Research approach, we engaged hospice stakeholders to form a Community Advisory Board (CAB) consisting of 17 members including hospice nurses, administrators, and bereaved parents. The CAB worked alongside a multi-site Strategic Planning Council (SPC) of interdisciplinary palliative care clinicians and researchers. Each group met regularly across 12 months to create mission and vision statements and inductively conceptualize and develop a model to provide hospice nurses in our region with access to pediatric-specific training, resources, and support to empower them in delivering high quality, compassionate care to children with serious illness and their families in the community.

Results: Through collaborative partnership, the CAB and SPC developed a “hub and spoke” model (Figure 1) to connect pediatric palliative care and hospice experts with community hospice providers, creating a network of shared knowledge and solidarity. Through this model, monthly tele-education sessions will be provided to nurses; each session will cover a core topic derived from hospice nurse recommendations, comprising a brief expert-led didactic followed by an interactive case-based discussion to build problem solving skills. Sessions will conclude with a mindfulness activity to foster resilience. A user-friendly website and listserv will provide additional resources and community building. We have designed evaluation tools to study the impact of this intervention on hospice nurse knowledge and comfort with providing pediatric care, as well as specific implementation outcomes.

Conclusion: In partnership with key hospice stakeholders in our region, we have developed an innovative intervention to address a critical need in the hospice community. Moving forward, we will refine our educational platform and create an implementation plan to deliver resource-efficient, comprehensive support to hospice nurses throughout the region and beyond.