Background: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. Aim: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. Design: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. Setting/participants: Nurses from 71 community-based hospice organizations across 3 states completed the survey. Results: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course ( n = 36; 65.5%), on-the-job education ( n = 13, 23.6%), online training ( n = 5, 9.1%), nursing school ( n = 2, 3.6%) and paediatric advanced life support courses ( n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course ( n = 39; 54.2%) or provision of written materials ( n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half ( n = 93; 49.2%) requesting ‘any’ or ‘all’ types of education and the remainder requesting education around medication use ( n = 48; 25.4%), symptom assessment/management ( n = 32; 16.9%), pain assessment/management ( n = 28; 14.8), communication ( n = 29; 15.3%) and psychosocial assessment/management ( n = 28; 14.8). Conclusions: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.
IMPORTANCEMany of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. OBJECTIVE To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. DESIGN, SETTING, AND PARTICIPANTS For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixedmethods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. MAIN OUTCOMES AND MEASURES The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. RESULTSInterviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to Ն60 years) and median tenure of 5-9 years (range, <1 to Ն20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%).Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatricspecific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. CONCLUSIONS AND RELEVANCEIn this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid (continued)
Metabolic G-protein Coupled Receptors (GPCRs). (A) Intramembrane access to the binding pocket of GPR40 (also known as free fatty acid receptor 1; PDB code: 4PHU). The binding pocket of GPR40 (grey) is covered by extracellular loop 2 (ECL2; cyan) preventing entry from the extracellular space. Instead the allosteric regulator, TAK-875 (pink), accesses the binding pocket through the plasma membrane. (B) Structural determination of the lysophosphatidic acid receptor (LPA 1 ; PDB code: 4Z34). LPA 1 was crystallized with a stabilizing Cytochrome b 562 RIL subunit (circled in orange) inserted into the third intracellular loop and with membrane lipids bound to help orient LPA 1 in the plasma membrane. (C) Pharmacological regulation of metabotropic glutamate receptor 5 (mGlu5; PDB code: 4OO9). Slab view of the allosteric binding site (allosteric regulator mavoglurant (red)) within the 7-transmembrane helices of mGlu5 (green).
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