"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)

"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)

Porter A; Kiefer A; Gattas M; Baker J; Kaye E

Journal of Pain and Symptom Management

2020

qualitative study; training; support needs; hospice nurses

Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing pediatric care. * Characterize the pediatric-specific training and support needs of hospice nurses who provide care to children and families in the community. * Describe the innovative ideas proposed by study participants for development of pediatric-specific resources and training opportunities for community hospice nurses. Importance: Approximately 500,000 children suffer from serious illness annually, with 50,000 children dying each year. Many of these children and families are eligible for provision of community-based hospice care, yet few organizations offer formal pediatric services. Recent population level data demonstrate that hospice nurses lack training, experience, and comfort in provision of care to children in the community; however, the specific educational preferences and supportive needs of hospice nurses is not well understood. Objective(s): To investigate and describe the pediatric-specific training and support needs of hospice nurses providing care to children and families in the community. Method(s): From a population-level cohort of 551 hospice nurses who completed a comprehensive quantitative survey, an exploratory cohort of 40 hospice nurses were selected using purposive sampling to stratify participants into sub-cohorts based on prior self-reported levels of comfort with pediatric hospice provision. Semi-structured interviews were conducted, with subsequent inductive codebook development. Constant comparative analysis was performed across transcripts using MAXQDA software. Result(s): The majority of hospice nurses described insufficient training to care for children with serious illness. Nurses imagine an ideal training experience to involve in-person learning with prioritization of specific topics, including symptom management, medications/dosing, pediatric-specific equipment, concurrent care, anticipatory guidance on disease trajectories and end of life, supporting families, and staff resilience. Barriers to realizing training experiences include lack of awareness of available resources, training opportunities, and mentorship/networking across the pediatric palliative care landscape, as well as stigma against pediatric hospice and palliative care. Conclusion(s): Community hospice nurses express an urgent need for improvements in pediatric-specific resources and training opportunities. Importantly, they offer robust visions for improving training paradigms and available resources. Impact: These data offer opportunities for collaborative development and investigation of educational programs and policies to improve the provision of community-based pediatric hospice for children, families, and nurses. Copyright © 2020

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