Parental satisfaction with diagnosis disclosure: A study on parents of children or adults with genetic syndromes

Abstract

Objectives

The study aimed to examine parental satisfaction with the communication of the diagnosis in parents of children or adults diagnosed with a genetic syndrome. Several factors were considered, such as the time of ascertainment (prenatal, at birth or in childhood) and knowledge of the syndrome. Potential predictors of parental satisfaction were analysed by considering cognitive, affective and environmental factors.

Methods

Participants in the study were 390 parents of individuals (aged between two months and 45 years) diagnosed with a genetic syndrome. Parents completed a specially developed online questionnaire to assess the perceived severity of their child's condition, their experience with the diagnosis communication process, and their satisfaction with that process.

Results

Parents who received the communication at birth appeared less satisfied with the communication process. No significant differences emerged in the satisfaction of parents who received communication about a known genetic syndrome (i.e. if the parents knew broadly or exhaustively what it was) and those who received communication about an unknown syndrome (i.e. if the parents had never heard of it or only knew about the existence of the genetic condition). Cognitive factors (e.g. the amount of information provided), affective factors (e.g. empathy), and environmental factors (e.g. delivery of written documents) contribute to explaining individual variability in parental satisfaction.

Conclusions

Many factors contribute to explaining parents’ satisfaction with the disclosure of the diagnosis of a genetic syndrome in their children. The contribution of individual parental factors, such as personality traits or well-being, remains to be investigated.

Practice Implications

Great care needs to be taken when communicating the diagnosis of genetic syndromes, especially if it is made in the perinatal period. Some practical measures, such as the provision of written information, can improve the experience for parents.