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  11. "they Fell Through The Cracks:" Caregiver Perspectives On The Difficulties Of Covid-19 Implementation Transitions For Children And Youth With Special Healthcare Needs (cyshcn).
  1. Home
  3. Research Domains
  5. Health Sciences
  7. Health Services And Systems
  9. Family Care
  11. "they Fell Through The Cracks:" Caregiver Perspectives On The Difficulties Of Covid-19 Implementation Transitions For Children And Youth With Special Healthcare Needs (cyshcn).

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"They fell through the cracks:" caregiver perspectives on the difficulties of COVID-19 implementation transitions for children and youth with special healthcare needs (CYSHCN).

D Grace Smith1, Mary Kathryn Cancilliere2,3, Tara M Hayes4

  • 1Division of Biology and Medicine, Brown University, Providence, RI, United States.

Frontiers in Pediatrics
|June 18, 2025

View abstract on PubMed

Summary
This summary is machine-generated.
Keywords:
COVID-19CYSHCNchildren with special healthcare needsimplementation barriers.

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Pandemic transitions negatively impacted children and youth with special healthcare needs (CYSHCN) due to poor planning and communication. Future crisis planning must prioritize inclusive strategies for CYSHCN to ensure their well-being.

Area of Science:

  • Public Health
  • Health Services Research
  • Implementation Science

Background:

  • COVID-19 pandemic protocols significantly impacted children and youth with special healthcare needs (CYSHCN).
  • Previous research focused on the initial pandemic year, examining social distancing, remote services, and masking effects.
  • Understanding transitions during vaccine rollout and mandate changes is crucial for future crisis preparedness.

Purpose of the Study:

  • To analyze caregiver experiences of pandemic transition moments for CYSHCN.
  • To identify how protocol and intervention changes during transitions affected CYSHCN.
  • To inform more inclusive and equitable decision-making in future public health crises.

Main Methods:

  • Conducted 14 focus groups with 77 caregivers of CYSHCN between March-December 2022.
pandemic
vaccination
  • Co-developed facilitation protocols with community leaders.
  • Analyzed transcriptions using directed content analysis and thematic analysis, guided by implementation science.

    • Main Results:

    • Caregivers reported negative impacts from poorly timed and inflexible pandemic interventions.
    • Key themes included lack of transition support, inadequate communication for CYSHCN, and timing that neglected their needs.
    • These transitions led to loss of services and structures, impacting CYSHCN's well-being.

    Conclusions:

    • CYSHCN needs were overlooked during pandemic transition moments, affecting their overall well-being.
    • Urgent need for inclusive research and policy models involving the CYSHCN community.
    • Future strategies require adaptable interventions, clear communication, and community-centered planning for health crises.