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Pulse Check: Status Update on Pediatric Palliative and Hospice Community-Based Coverage.

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Community-based organizations are increasing pediatric palliative and hospice care, but children remain underrepresented, especially in nonmetro areas. Barriers include staffing shortages and funding issues, hindering expanded care reach.

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Area of Science:

  • Palliative Care
  • Hospice Care
  • Pediatric Healthcare Access

Background:

  • Pediatric literature highlights community-based palliative and hospice organizations' role in extending care for children.
  • An updated understanding of these services post-pandemic is crucial.

Purpose of the Study:

  • To offer a current snapshot of pediatric palliative and hospice services and staffing in US community-based organizations.
  • To identify trends and challenges in pediatric end-of-life care provision.

Main Methods:

  • An online survey was distributed to organizational members of the National Alliance for Care at Home in the US.
  • Data were collected from 295 palliative and hospice organizations across all 50 states and Washington, DC.

Main Results:

  • Nearly half of organizations increased pediatric patient acceptance; 6% newly accepted pediatric patients post-2020.
  • Trauma is an increasing reason for pediatric enrollment, while nonmetro areas offer fewer services.
  • Medicaid is the primary reimbursement (47%), with staffing shortages, low referrals, and funding as key barriers.

Conclusions:

  • Children are underrepresented in community-based hospice care, with disparities widening in nonmetro regions.
  • Further research on training, staffing, and funding models is recommended to improve pediatric palliative and hospice care access.