Perceptions of social support and childhood disability among families of children with disabilities Public Deposited

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  • March 21, 2019
  • Ellison, Tywanda
    • Affiliation: School of Education
  • The present study was an ethnographic study of forty-two families who had children with known or suspected genetic disorders. These families were part of a larger study that investigated culture and family interpretations of genetic disorders. The purpose of the current study was to focus on the social support networks utilized by these families, the families' perceptions of their child with a disability, and whether these constructs vary by ethnicity and income levels. A qualitative approach was employed to investigate these major research questions with interview data analyzed through the use of thematic analysis. The results indicated that social support from both informal and formal networks was significant in the lives of families of children with disabilities. Parents generally viewed their formal and informal networks as supportive and vital to the daily care of their child with disabilities. Ethnicity was not found to be a marked source of variation in families' perceptions of social support. An interpretation of this finding is that families who have a child with a disability come to share common experiences with other parents of children with disabilities. With regard to family perceptions of the child with a disability, the results indicated that medical views of disability, religious beliefs, views of normalcy, labeling, stigma and discrimination were factors influencing how families viewed their child with a disability. These factors influenced parental beliefs regarding the diagnosis, treatment, and prognosis of their child's condition. By using qualitative methodology the results extend what is currently known and contribute to a better understanding of the context and meanings associated with family perceptions of social support and their child with a disability. This information may facilitate better relationships between families and healthcare providers, and contribute to the development of programs and interventions to better serve them and their children with disabilities.
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  • In Copyright
  • Simeonsson, Rune
  • Skinner, Debra
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  • University of North Carolina at Chapel Hill
  • Open access

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