“What Didn’t I Do for this Child?”: Parents’ Retrospective Construction of their Child’s CP Diagnostic Process

Hila Avieli, Tova Band-Winterstein

Research output: Contribution to journalArticlepeer-review

Abstract

Increased life expectancy exposes ageing parents to a lifetime of living with a child with Cerebral Palsy (CP). The current study aims to highlight the ways in which ageing parents retrospectively construct child’s CP diagnostic process. A phenomenological–narrative perspective was performed, in-depth, semi-structured interviews with 15 ageing parents of children with CP, followed by a content analysis. Three major phases in coping with child’s CP emerged: (1) “What’s wrong with my child? Give me a name”: Searching for extrinsic recognition of the pathology, (2) “When you first hear the words you are “thrown” into a new world”: Perceiving the bad news as a turning point, and (3) “You won’t get any special treatment”: A lifetime of maneuvering between disability and able-bodied society. Constructing positive narrative helps parents achieve a sense of closure at this stage of their lives and it can serve as a therapeutic toll.

Original languageEnglish
Pages (from-to)385-405
Number of pages21
JournalJournal of Developmental and Physical Disabilities
Volume29
Issue number3
DOIs
StatePublished - 1 Jun 2017

Keywords

  • Adults with disability
  • Ageing parents
  • Life course perspective
  • Life story work

All Science Journal Classification (ASJC) codes

  • Developmental and Educational Psychology
  • Physical Therapy, Sports Therapy and Rehabilitation

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