Community reintegration: Children with special healthcare needs in rural areas

Abstract

PurposeThe purpose of this study was to gather descriptions from caregivers and providers of children with special healthcare needs (CSHCN) about their experiences with community reintegration. This study focused on three community support areas: the healthcare structure, community of support, and school systems. The research question was, “How do caregivers and providers of CSHCN describe reintegration into community-based systems?” MethodThis descriptive qualitative study used focus group design to interview caregivers and providers about their experiences. Data were analyzed using conventional content analysis with open coding, clustering into categories, and abstracting into themes. ResultsEight themes were found within three categories. 1. Planning life and caregiving while fighting for everything needed, 2. Deciding to seek help while living with stigma, shame, and fear, 3. Coping with caregiving while feeling isolated, stressed, and overwhelmed, 4. Arranging transportation while living far away, 5. Underwhelming support in community and school systems, 6. Managing finances and covering expenses, 7. Improving communication of complex needs, and 8. Building a community, increasing confidence, and providing hope. ConclusionCommunity reintegration was described by caregivers and providers as balancing responsibilities, securing resources, and facilitating collaboration, which offer guidance for future care. ImplicationsEngaging in open dialogue structured by the themes can help nurses understand the unique needs of caregivers of CSHCN. Social policy reform focused on access to care, financial resources, and school support may reduce inequities, and additional research focused on community-based systems, coping, and caregiving may identify needs based on sociodemographics and existing resources.