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

ConclusionsAs 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.

Source: Journal of Intellectual Disability Research - July 25, 2014 Category: Disability Authors: J. Goodwin, K. Schoch, V. Shashi, S. R. Hooper, O. Morad, M. Zalevsky, D. Gothelf, L. E. Campbell Tags: Original Article Source Type: research