As part of the establishment of a new regional coalition, researchers sought to define the services, training, and education needs of pediatric hospice and palliative care programs throughout the Northwest United States.
As part of an email invitation to join the Northwest Pediatric Palliative Care Coalition, state organizations distributed electronic questionnaires to pediatric hospice and palliative care physicians. Data were descriptively evaluated using univariate analysis.
About 64 people representing 37 unique programs from seven states replied, 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). The programs offered pediatric hospice care (42%, n=33/78) and palliative care (30%, n=26/86). Despite the fact that 26% (n=15/58) had been providing pediatric hospice and palliative care for more than 20 years, 40% (n=21/53) reported only treating less than 5 children patients per year. Pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231) were among the specific services given. Lack of skilled personnel (84%), financial assistance (59%), and access to home infusions were all barriers that constantly occurred, frequently, or occasionally (48%). Participants in the coalition prioritised education on parent/caregiver psychosocial support (40%, n=19/48), objectives of care communication (44%, n=21/48), and symptom management (45%, n=21/47).
Pediatric hospice and palliative care doctors confront several challenges and might benefit from a coalition that offers networking and customized education.