<p>The prevalence of children and youth with special health care needs (CYSHCN) is higher in Florida than in the U.S. overall. Many Florida CYSHCN face increased risks for behavioral/mental health challenges, lack proper access to care, and encounter barriers due to fragmented systems and eligibility criteria. This study explored caregivers’ perspectives on community supports and resources for CYSHCN. We interviewed 31 Florida CYSHCN caregivers using a semi-structured interview guide. We explored caregivers’ perspectives on community supports and access and their perceptions of assets, resources, and needs. We transcribed discussions and analyzed text using a priori and emergent thematic coding. The most utilized resources included primary and specialty medical services, in-home nursing, therapies, early intervention, public and charter schools, support groups, and non-profit organizations. Caregivers faced challenges accessing information, inclusive childcare, resources, support for themselves and their children, and needed services, especially for children with multiple or complex conditions. Concerns included establishing continuity of care, finding trained providers, services coordination, and travel distances for appropriate care. Despite obstacles, caregivers value existing resources and aspire to improve access. Their insight can inform efforts to enhance integrated care in community programs, clinicians, mental health services, and education.</p>

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Caregivers’ Perspectives on Community Resources for Children with Special Health Care Needs in Florida

  • Rafaella Stein Elger,
  • Maria Pacheco Garrillo,
  • Saloni Mehra,
  • Rhosemalinda Louis,
  • Sara Stubben,
  • Richard Powis,
  • Russell S. Kirby,
  • Jean-Paul Tanner,
  • Jennifer Marshall

摘要

The prevalence of children and youth with special health care needs (CYSHCN) is higher in Florida than in the U.S. overall. Many Florida CYSHCN face increased risks for behavioral/mental health challenges, lack proper access to care, and encounter barriers due to fragmented systems and eligibility criteria. This study explored caregivers’ perspectives on community supports and resources for CYSHCN. We interviewed 31 Florida CYSHCN caregivers using a semi-structured interview guide. We explored caregivers’ perspectives on community supports and access and their perceptions of assets, resources, and needs. We transcribed discussions and analyzed text using a priori and emergent thematic coding. The most utilized resources included primary and specialty medical services, in-home nursing, therapies, early intervention, public and charter schools, support groups, and non-profit organizations. Caregivers faced challenges accessing information, inclusive childcare, resources, support for themselves and their children, and needed services, especially for children with multiple or complex conditions. Concerns included establishing continuity of care, finding trained providers, services coordination, and travel distances for appropriate care. Despite obstacles, caregivers value existing resources and aspire to improve access. Their insight can inform efforts to enhance integrated care in community programs, clinicians, mental health services, and education.