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A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.

Publication ,  Journal Article
Goodwin, J; Schoch, K; Shashi, V; Hooper, SR; Morad, O; Zalevsky, M; Gothelf, D; Campbell, LE
Published in: J Intellect Disabil Res
May 2015

BACKGROUND: Research suggests children with genetic disorders exhibit greater coping skills when they are aware of their condition and its heritability. While the experiences parents have at diagnosis may influence their decision to disclose the diagnosis to their children, there is little research into this communication. The aim of the current study was to examine the relationship between the diagnosis experience and the disclosure experience for parents of children with developmental disorders of a known genetic aetiology: parents of children with 22q11.2 deletion syndrome (22q11DS) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile X syndrome) and a group where diagnosis generally occurs early (i.e. Down syndrome). METHOD: The sample comprised 559 parents and caregivers of children with genetic developmental disorders, and an online survey was utilised. Items from the questionnaire were combined to create variables for diagnosis experience, parental disclosure experience, child's disclosure experience, and parental coping and self-efficacy. RESULTS: Across all groups parents reported that the diagnosis experience was negative and often accompanied by a lack of support and appropriate information. Sixty-eight per cent of those in the 22q11DS and 58.3% in the Similar Conditions groups had disclosed the diagnosis to their child, whereas only 32.7% of the Down syndrome group had. Eighty-six per cent of the Down syndrome group felt they had sufficient information to talk to their child compared with 44.1% of the Similar Conditions group and 32.6% of the 22q11DS group. Parents reported disclosing the diagnosis to their child because they did not want to create secrets; and that they considered the child's age when disclosing. In the 22q11DS and Similar Conditions groups, a poor diagnosis experience was significantly associated with negative parental disclosure experiences. In the Similar Conditions group, a poor diagnosis experience was also significantly associated with a more negative child disclosure experience. CONCLUSIONS: As expected this study highlights how difficult most parents find the diagnosis experience. Importantly, the data indicate that the personal experiences the parents have can have a long-term impact on how well they cope with telling their child about the diagnosis. It is important for clinicians to consider the long-term ramifications of the diagnosis experience and give the parents opportunities; through, for instance, psychoeducation to prepare for telling their child about the diagnosis. Further research is warranted to explore what type of information would be useful for parents to receive.

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Published In

J Intellect Disabil Res

DOI

EISSN

1365-2788

Publication Date

May 2015

Volume

59

Issue

5

Start / End Page

474 / 486

Location

England

Related Subject Headings

  • Tuberous Sclerosis
  • Truth Disclosure
  • Rehabilitation
  • Prader-Willi Syndrome
  • Parents
  • Middle Aged
  • Male
  • Infant, Newborn
  • Infant
  • Humans
 

Citation

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Goodwin, J., Schoch, K., Shashi, V., Hooper, S. R., Morad, O., Zalevsky, M., … Campbell, L. E. (2015). A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res, 59(5), 474–486. https://doi.org/10.1111/jir.12151
Goodwin, J., K. Schoch, V. Shashi, S. R. Hooper, O. Morad, M. Zalevsky, D. Gothelf, and L. E. Campbell. “A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.J Intellect Disabil Res 59, no. 5 (May 2015): 474–86. https://doi.org/10.1111/jir.12151.
Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res. 2015 May;59(5):474–86.
Goodwin, J., et al. “A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.J Intellect Disabil Res, vol. 59, no. 5, May 2015, pp. 474–86. Pubmed, doi:10.1111/jir.12151.
Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, Gothelf D, Campbell LE. A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res. 2015 May;59(5):474–486.
Journal cover image

Published In

J Intellect Disabil Res

DOI

EISSN

1365-2788

Publication Date

May 2015

Volume

59

Issue

5

Start / End Page

474 / 486

Location

England

Related Subject Headings

  • Tuberous Sclerosis
  • Truth Disclosure
  • Rehabilitation
  • Prader-Willi Syndrome
  • Parents
  • Middle Aged
  • Male
  • Infant, Newborn
  • Infant
  • Humans