Miss Jane Goodwin is a PhD candidate who did her Bachelor of Psychology Honours project at the University of Newcastle in Australia with Dr Linda Campbell from the School of Psychology and in collaboration with colleagues from the Duke University, University of North Carolina and Tel Aviv University. Her Honours research was published and made available online through the Journal of Intellectual Disability Research.
Research suggests children with genetic disorders have better coping skills when they aware of their condition and its heritability. However, there is little research surrounding how parents make the decision to tell their child about their syndrome. We aimed to examine whether there was a relationship between the diagnosis experience (i.e. when parents were told their child had a genetic developmental disability) and the disclosure experience (i.e., when parents told their child about the child’s genetic developmental disability). 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).
Five hundred and fifty-nine parents and caregivers of children with genetic developmental disorders completed an online survey about their own diagnosis and disclosure experiences. They also answered questions about their coping styles.
Parents reported that the diagnosis experience was negative and often accompanied by a lack of support and appropriate information. Most parents who had a child with 22q11DS or a similar condition had disclosed the diagnosis to their child, whereas only a third of parents who had a child with Down syndrome had. Interestingly, 86% of parents who had a child with Down syndrome felt they had sufficient information to talk to their child compared with less than half of the parents who had a child with 22q11DS or similar conditions. Parents reported disclosing the diagnosis to their child because they did not want to create secrets. They considered the child’s age when disclosing. For parents who had a child with 22q11DS of a similar condition, those who had a negative diagnosis experience were more likely to have a negative disclosure experience.
This study highlights how difficult most parents find the diagnosis experience. Their personal experiences of the diagnosis 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 to prepare for telling their child about the diagnosis. Further research is needed to explore what type of information would be useful for parents to receive.
Citation: 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. Journal of Intellectual Disability Research, 59(5), 474-486.