Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses

Kaye, Erica C.; Gattas, Melanie; Kiefer, Ashley; Reynolds, Jason; Zalud, Kristina; Li, Chen; Lu, Zhaohua; Baker, Justin N.

doi:10.1016/j.jpainsymman.2018.10.509

Cited by 50 publications

(59 citation statements)

References 30 publications

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“…11,12 There is a wide-spread shortage of pediatric palliative and hospice care training among health-care professionals. 13 The lack of specialized pediatric training and experience in caring for children results in nurses being fearful and uncomfortable with providing end-of-life services to pediatric populations, despite a strong desire to have the proper training to adequately support children and their families at the end of life. 13 Hospice care for children in rural communities brings the additional challenge of remote geographies and economic vulnerability.…”

Section: Introductionmentioning

confidence: 99%

“…13 The lack of specialized pediatric training and experience in caring for children results in nurses being fearful and uncomfortable with providing end-of-life services to pediatric populations, despite a strong desire to have the proper training to adequately support children and their families at the end of life. 13 Hospice care for children in rural communities brings the additional challenge of remote geographies and economic vulnerability. 14 Hospice coverage in rural communities, especially those nonadjacent to urban centers, represents the least available per capita coverage for this demographic in need of hospice services.…”

Section: Introductionmentioning

confidence: 99%

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Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

et al. 2019

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Background: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. Objectives: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. Methods: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). Results: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. Conclusion: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

et al. 2019

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“…52 Although 88% of pediatric oncology AYAs had never heard of hospice services, hospice remains the model for high-quality home death in the United States. 18 Home death can be complicated by lack of access to pediatric hospice services, 45,[53][54][55] or family revocation of hospice services. [56][57][58] For many patients and families, being given the choice to plan is just as important as the location itself.…”

Section: Location Of End-of-life Carementioning

confidence: 99%

“…For many patients and families, being given the choice to plan is just as important as the location itself. AYA patients most often prioritize their relationships with others when making EOL decisions, in addition to directing their medical treatment, defining their care plans, the information their family and friends receive, and how they wish to be remembered 5–57,59–61 . Parents of critically ill children who planned the location of death achieved a home death 72% of the time compared to only 8% of those who did not plan 46 .…”

Section: Location Of End‐of‐life Carementioning

confidence: 99%

Palliative care considerations and practices for adolescents and young adults with cancer

Upshaw

Roche

Gleditsch

et al. 2020

Pediatric Blood & Cancer

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The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with lifethreatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. K E Y W O R D S adolescent and young adult, end-of-life care, palliative care, pediatric oncology, support care 1 INTRODUCTION While much medical advancements have occurred in pediatric oncology, challenges in functioning, quality of life, and living with a poor prognosis contribute to symptom burden and suffering within this population. 1 Interdisciplinary palliative care (PC) teams aim to provide specialized care to patients with serious illness, and help their families to improve symptom control, ease suffering, and attend to associated psychological challenges. 2-7 When caring for adolescents and young adults (AYAs) with cancer diagnoses, there are unique considerations given their stage of psychosocial development. In this study, AYA is defined as ages 12-24 years, 8 per the World Health Organization (WHO) definition. While the upper age range of AYAs can be defined as up to 39 years, 9 the intended audience of this study paper is pediatric

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“…Unsurprisingly, the vast majority of hospice nurses in this population study reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life. 13…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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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.

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Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses

Cited by 50 publications

References 30 publications

Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

Palliative care considerations and practices for adolescents and young adults with cancer

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

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