Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction

To investigate the level of parent satisfaction with the first communication of a diagnosis of developmental disability in their child ('disclosure') and the determinants of this satisfaction.

Interviews with parents of children with developmental disabilities regarding their experiences at the time of disclosure and their level of satisfaction with the process were carried out.

Parent satisfaction with disclosure overall was found to be high (82.6%). Parents were more likely to be satisfied if they received a large amount of information. Parent satisfaction was found to be higher when the disclosing professional communicates well with the parents, has an understanding of parental concerns, and is direct in manner. Having both parents, the child or support people present were not found to have any significant relationship to parent satisfaction.

The high level of satisfaction with disclosure in this study supports the claim made by earlier researchers that parental dissatisfaction with the disclosure process is not inevitable. The major determinants of parental satisfaction with disclosure are directness, understanding of parental concerns and good communication on the part of the disclosing professional, and receiving a large amount of information.