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Updated: Nov 11, 2025

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A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois

Patrick Murday1, Kimberly Downing2, Erin Gaab3

  • 112244Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.

The American Journal of Hospice & Palliative Care
|March 25, 2021
PubMed

Insights

Pediatric palliative care (PPC) in non-metropolitan areas faces unique challenges. Improving care requires better resource utilization, coordination, and addressing pediatric-specific needs for families in rural communities.

Area of Science:

  • Palliative Care Research
  • Rural Health Services
  • Pediatric Healthcare Delivery

Background:

  • Limited data exists on pediatric palliative care (PPC) provision in non-metropolitan settings.
  • Understanding rural PPC challenges is crucial for equitable access.

Purpose of the Study:

  • To describe the strengths and challenges of delivering PPC in non-metropolitan communities.
  • To identify opportunities for improving PPC access and quality in rural areas.

Main Methods:

  • Qualitative study utilizing focus groups (FGs) with key stakeholders.
  • Involved healthcare providers (HPs), bereaved parents, and parents of seriously ill children (SIC) from four rural Illinois areas.
  • Data analyzed using phenomenology and directed content analysis.

Main Results:

  • Identified themes included perceptions of PPC, resource availability, and challenges in travel, care coordination, and finances.
  • Participants highlighted pediatric-specific needs like sibling support, peer activities, school guidance, and financing.
  • Recommendations focused on enhancing coordination, leveraging resources, improving education, and network development.

Conclusions:

  • Non-metropolitan areas face distinct challenges in delivering pediatric palliative care.
  • Enhancing local resource utilization and quality is vital for improving rural PPC.
  • Future research should focus on addressing pediatric-specific issues in rural PPC.
Abstract

Keywords:
end-of-life carehospicenon-metropolitan communitiespalliative carepediatricsrural communities

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