Background: Approximately half a million children in the United States suffer from serious illness each year, many of whom are eligible for hospice care. Nonetheless, few hospice agencies offer formal pediatric programs or formal pediatric training for their nurses. A recent population-based study that assessed the levels of experience and comfort of 551 hospice nurses revealed that children with serious illness enrolled in local hospice agencies often receive care from nurses who lack training, experience, and comfort in the provision of pediatric hospice and palliative care. Objective: To investigate and describe the pediatric-specific training and support needs of hospice nurses who provide care to children and families in the community. Methods: A cross-sectional study of 35 hospice nurses employed across a tristate region was conducted. Participants were selected from an original cohort of 551 hospice nurses who completed the prior survey study. Nurses who agreed to participate were stratified into sub-cohorts based on their prior self-reported levels of comfort with the provision of hospice and palliative care to children and families in the community. Semi-structured interviews were conducted with each participating nurse, and interviews were recorded and transcribed for qualitative thematic analyses. Using MAXQDA software, an inductive approach informed by grounded theory was used to iteratively review the data and develop codes to describe hospice nurses’ training and support needs. Codes subsequently informed the discovery of themes that express the self-described needs of hospice nurses to improve the quality of pediatric palliative care provision in the community. Results: A sample of 35 nurses were interviewed from hospice agencies across 3 states, representing 4 strata of self-described comfort levels. The majority of interviewed nurses report insufficient training to provide hospice and palliative care for children with serious illness. Nurses imagine an ideal training experience to include in-person learning focused on the following topics: symptom management, medications and dosing, pediatric specific equipment, concurrent care, anticipatory guidance regarding disease processes and end of life, supporting grandparents and siblings, and professional guidance for nurses, including self-care, establishing boundaries, and personal/professional balance. In addition to time away from clinical responsibilities, primary barriers to realizing the ideal training experience include lack of awareness of available resources, training opportunities, and mentorship/networking across the pediatric palliative care landscape, as well as stigma against the field of pediatric hospice. Nurses did not identify cost, geographic distance, or institutional support as significant barriers. Conclusions: Community hospice nurses express an urgent need for improvements in pediatric-specific training opportunities and resources and have robust visions for how to improve training paradigms. Pediatric palliative care providers should work with community-based hospice nurses to develop and investigate education, training, and policies to improve pediatric care delivery.
“We feel like we are in the dark”: A qualitative study of the training and support needs of hospice nurses caring for children in the community
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Amy S. Porter, Ashley Kiefer, Melanie Gattas, CRA-RN, Justin Baker, Erica Kaye; “We feel like we are in the dark”: A qualitative study of the training and support needs of hospice nurses caring for children in the community. Pediatrics July 2020; 146 (1_MeetingAbstract): 215. 10.1542/peds.146.1MA3.215a
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