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

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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.

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Authors and Affiliations

  1. Department of Criminology, Ariel University, Ariel, 44837, Israel

    Hila Avieli

  2. Department of Gerontology, University of Haifa, Mount Carmel, Haifa, 31905, Israel

    Tova Band-Winterstein

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  1. Hila Avieli
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  2. Tova Band-Winterstein
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Correspondence to Tova Band-Winterstein.

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All procedures performed in this study were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Avieli, H., Band-Winterstein, T. “What Didn’t I Do for this Child?”: Parents’ Retrospective Construction of their Child’s CP Diagnostic Process. J Dev Phys Disabil 29, 385–405 (2017). https://doi.org/10.1007/s10882-016-9531-z

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