Abstract
Context
Given workforce and funding constraints, pediatric hospice and palliative care clinicians
often find challenges providing services for seriously ill children and families,
particularly in low resource and rural/remote areas.
Objectives
To describe the services, training, and education needs of pediatric hospice and palliative
care programs across the Northwest United States as part of the formation of a new
regional coalition.
Methods
Electronic surveys were sent to pediatric hospice and palliative care clinicians through
state organizations as part of an email invitation to join the Northwest Pediatric
Palliative Care Coalition. Data were analyzed descriptively using univariate analysis.
Results
Sixty-four participants representing 37 unique programs responded from seven states,
including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40%
(n=21/53) reported only serving <5 pediatric patients per year. Specific services provided
included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained
staff (84%), financial support (59%), and access to home infusions (48%). From the
coalition, participants prioritized education on parent/caregiver psychosocial support
(40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47).
Conclusions
Pediatric hospice and palliative care clinicians face numerous barriers and may benefit
from a coalition that provides networking and tailored education.
Key Words
Abbreviations:
PPC (pediatric palliative care), US (United States), DME (durable medical equipment)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: February 19, 2022
Accepted:
February 14,
2022
Identification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
