Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey

Abstract

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.

Community Hospice Nurses’ Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness

“…Methods for the 2018 population-level survey study of hospice nurse experiences and comfort with pediatric hospice provision have been previously described. 16 , 17 , 18 Briefly, we identified all accredited hospice organizations that offer services to pediatric patients in the tristate region of Tennessee, Mississippi, and Arkansas, comprising an institutional catchment area with notably poor access to hospice organizations, with approximately one-quarter to one-third of individuals lacking services within a 30-minute drive. 19 …”

“…In fact, many nurses requested training on any or all topics. 18 Qualitative analysis of short-answer survey items identified several key gaps in knowledge self-reported by hospice nurses, including pediatric medication use and dosing, physical symptom assessment and management, psychosocial assessment and management, and communication. 18 Nonetheless, hospice nurses’ educational needs and preferences regarding pediatric-specific training, resources, and support systems are not well understood.…”

Impact of personal experiences on career path, clinical practice, and professional endurance among hospice nurses caring for dying children

“…Methods for the preceding population-level survey study of hospice nurse experiences and comfort with pediatric hospice care provision have been described. [20][21][22] Briefly, we identified all accredited hospice organizations in a tristate region of Tennessee, Mississippi, and Arkansas that accepted referrals for pediatric patients. These three states comprise a wide catchment area for the authors' institution and have notably poor access to hospice services, [23] and the survey study was an initial step towards improving pediatric palliative and hospice care in this underresourced region.…”

Charting a path to high‐quality end‐of‐life care for children with cancer

“…Moreover, many community hospice agencies and clinicians lack pediatric training. [57][58][59] Concern about access to high quality pediatric hospice was one reason why panelists did not call for death at home as a quality measure, nor did they call for hospice enrollment for all patients; instead calling for palliative care OR hospice involvement and when hospice is involved, sufficient hospice enrollment time for meaningful relationships and support. 25,26 Although the Centers for Medicare and Medicaid Services have codified quality measures for adult hospice care, 60 their applicability to children has not been evaluated.…”