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Related Experiment Videos

The process of parenting a child with a disability: normalization through accommodations.

J A Deatrick1, K A Knafl, M Walsh

  • 1College of Nursing, University of Illinois, Chicago.

Journal of Advanced Nursing
|January 1, 1988
PubMed
Summary

Parents of children with osteogenesis imperfecta actively accommodate changing needs to normalize family life. This ongoing process involves practical strategies and adapting to challenges, ensuring a more typical existence for the child and family.

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Area of Science:

  • Pediatric Health
  • Family Studies
  • Disability Management

Background:

  • Common advice suggests raising disabled children similarly to non-disabled peers.
  • Osteogenesis imperfecta presents unique challenges for affected children and their families.
  • Understanding parental management styles is crucial for supporting families with disabled children.

Purpose of the Study:

  • To describe the management styles employed by parents of children and adolescents with osteogenesis imperfecta.
  • To identify behavioral strategies parents use to normalize the lives of their child and family.
  • To explore sources of threats, validation, and support influencing the normalization process.

Main Methods:

  • Qualitative interviews were conducted with parents of 15 children and adolescents diagnosed with osteogenesis imperfecta.

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  • A semi-structured interview guide was used to gather data on parental management styles and normalization strategies.
  • Data analysis utilized a previously established framework for understanding normalization.

    • Main Results:

    • Parental normalization is an active, continuous process of accommodation to the child's evolving physical and emotional needs.
    • Normalization strategies begin at birth, addressing daily living activities, child interaction, and family participation.
    • Specific events were identified as 'threats' that prompted parents to adjust their normalization strategies.

    Conclusions:

    • Parents of children with osteogenesis imperfecta engage in a dynamic process to integrate their child into family life.
    • Clinical practice should support parents by acknowledging and facilitating their normalization efforts.
    • Further research can explore the long-term impact of these strategies and identify effective support systems.