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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
"It's So Tough!": Barriers to Respite Care for Families of Children With Disabilities
Erik W Carter1, Melody V Escobar1, Carlee Hollinger1
1Erik W. Carter, Melody V. Escobar, Carlee Hollinger, Shannon R. Eshman, and Sarah S. Mire, Baylor Center for Disability and Flourishing, Baylor University.
Abstract:
Although respite care can have a profound impact on the well-being of families, most parents of children with disabilities struggle to access these scarce services. The purpose of this qualitative study was to map the breadth of barriers families encounter in their pursuit of respite care. We interviewed 31 parents of children and youth with intellectual and developmental disabilities (IDD) about their experiences and the challenges they navigated. Fifteen key barriers emerged in our analyses, highlighting the complexities of this pursuit and the multifaceted issues that can arise for families. We offer recommendations for research and practice aimed at expanding access to this much-needed-but often elusive-family support.
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