Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood.
To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community.
A cross-sectional survey was developed, pilot tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted subanalyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables.
A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (P < 0.001), receipt of formal pediatric PPHC training (P < 0.001), and higher hospice-level (P = 0.01) and individual-level frequency of PPHC provision (P < 0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life.
Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.
To read this article in full you will need to make a payment
Purchase one-time access:Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
One-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:Subscribe to Journal of Pain and Symptom Management
Already a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
- Pediatric palliative care.N Engl J Med. 2004; 350: 1752-1762
- Pediatric palliative care and hospice care commitments, guidelines, and recommendations. AAP section on Hospice and Palliative Medicine and Committee on hospital care.Pediatrics. 2013; 132: 966-972
- American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children.Pediatrics. 2000; 106: 351-357
- Dying in America: Improving quality and honoring individual preferences near the end of life.National Academies Press, Washington, DC2014
- Place and provision of palliative care for children with progressive cancer: a study by the paediatric oncology nurses' forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group.J Clin Oncol. 2007; 25: 4472-4476
- Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?.Pediatr Blood Cancer. 2014; 61: 859-864
- Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer.Klin Padiatr. 2008; 220: 166-174
- Symptoms and suffering at the end of life in children with cancer: an Australian perspective.Med J Aust. 2010; 192: 71-75
- ChiPPS white paper: A call for change: Recommendations to improve the care of children living with life-threatening conditions.2001 (Available from: https://www.nhpco.org/wp-content/uploads/2019/04/Pediatric_Facts-Figures-1.pdf. Accessed July 19, 2020)
- NHPCO facts and figures: Pediatric palliative & hospice care in America.National Hospice and Palliative Care Organization, Alexandria, VA2014
- Geographic access to hospice in the United States.J Palliat Med. 2010; 13: 1331-1338
- Provision of palliative and hospice care to children in the community: a population study of hospice nurses.J Pain Symptom Manage. 2019; 57: 241-250
- 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.Palliat Med. 2020; 34: 403-412
- “You've only got one chance to get it right”: children's cancer nurses' experiences of providing palliative care in the acute hospital setting.Issues Compr Pediatr Nurs. 2013; 36: 188-211
- How much compassion have I left? An exploration of occupational stress among children's palliative care nurses.Int J Palliat Nurs. 2010; 16: 233-240
- Grief and the experiences of nurses providing palliative care to children and young people at home.Nurs Child Young People. 2013; 25: 31-36
- “It is like heart failure. It is chronic … and it will kill you”: a qualitative analysis of burnout among hospice and palliative care clinicians.J Pain Symptom Manage. 2017; 53: 901-910.e1
- Barriers to palliative care for children: perceptions of pediatric health care providers.Pediatrics. 2008; 121: 282-288
- Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives.BMC Palliat Care. 2010; 9: 11
- Perceived barriers and enablers to referrals to community-based hospice palliative care volunteer programs in Canada.Am J Hosp Palliat Care. 2013; 31: 836-844
- Barriers to hospice for children as perceived by hospice organizations in North Carolina.Am J Hosp Palliat Med. 2012; 29: 171-176
- Barriers and enablers to hospice referrals: an expert overview.J Palliat Med. 2002; 5: 73-84
- Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care.Pediatr Blood Cancer. 2013; 60: 1875-1881
- Barriers to dying at home: the impact of poor co-ordination of community service provision for patients with cancer.Health Soc Care Community. 2010; 18: 337-345
- Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts.BMC Palliat Care. 2010; 9: 10
- Shared care: the barriers encountered by community-based palliative care teams in Ontario, Canada.Health Soc Care Community. 2012; 20: 420-429
- Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California.Palliat Med. 2012; 26: 268-274
- Pediatric palliative care in the community.CA Cancer J Clin. 2015; 65: 315-333
- Sowing across a state: development and delivery of a grassroots pediatric palliative care nursing curriculum.J Palliat Care. 2019; (825859719889700)
- HPNA 2019-2022 research agenda: development and rationale.J Hosp Palliat Nurs. 2019; 21: E17-E23
- The end of life nursing education nursing consortium project.Ann Palliat Med. 2015; 4: 61-69
- Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services.Am J Hosp Palliat Care. 2007; 24: 191-195
- A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States.Palliat Support Care. 2019; 17: 269-275
- Burnout syndrome in the practice of oncology: results of a random survey of 1,000 oncologists.J Clin Oncol. 1991; 9: 1916-1920
- Burnout syndrome in nurses working in palliative care units: an analysis of associated factors.J Nurs Manag. 2018; 26: 19-25
- Caring for dying children: assessing the needs of the pediatric palliative care nurse.Pediatr Nurs. 2018; 35: 86-90
- Integration of pediatric palliative care into cardiac intensive care: a champion-based model.Pediatrics. 2019; 144: e20190160
Published online: July 02, 2020
Accepted: June 24, 2020
© 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.