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June 13, 2026BMC Health Services ResearchOpen Access

Issues navigating the healthcare delivery system among caregivers of children and youth with special healthcare needs: a qualitative study

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Authors

CMCaitlin M. MeyerRCRebecca K. CampbellMKMaura R. Kelleher

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Overview

Qualitative study reveals caregiver challenges in healthcare navigation, suggesting necessary system improvements.

Key Points

  • This study aims to explore the experiences of caregivers of children and youth with special healthcare needs in navigating the healthcare delivery system and identify resources to alleviate their burden.
  • Conducted a qualitative study as part of a statewide needs assessment in Illinois.
  • Three focus group discussions with 22 caregivers of CYSHCN were held to gather insights.
  • Transcriptions were analyzed using content analysis to identify themes regarding caregiver burden and solutions.
  • Caregivers reported significant emotional, logistical, and financial burdens due to fragmented healthcare and insurance systems.
  • Key challenges included poor communication between providers, inconsistent electronic health record integration, and insurance-related barriers such as prior authorization requirements.
  • Participants identified strategies like multidisciplinary care models and emphasized the need for improved care coordination and increased mental health support.

Cite This Study

Meyer et al. (2026) studied this question.

synapsesocial.com/papers/6a2cf665faef96ed7f0582a5https://doi.org/10.1186/s12913-026-14931-2
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