Parents' perspectives, experiences, and need for support when communicating with their children about the psychiatric manifestations of 22q11.2 deletion syndrome (22q11DS)

Objective To develop a theoretical model to explain how parents think about the process of communicating with their affected child about the psychiatric manifestations of 22q11DS. Methods Semi-structured interviews were conducted with parents of children with 22q11DS, who had all received psychiatric genetic counseling. Interviews were recorded, transcribed verbatim, and analyzed concurrently with data collection, using interpretive description. Identified themes were used to inductively develop a model of how parents think about communicating with their child about psychiatric risk in 22q11DS. Results From interviews with 10 parents, we developed a model representing the communication of psychiatric risk in 22q11DS as a process where various dynamic contextual factors (e.g., perception of risk, desire to normalize) act as either motivators or barriers to communication. Parents described challenges with the content, process, and outcome of these conversations. Parents wanted hands on, practical, personalized, and ongoing support from health professionals around communication about these issues. Conclusion This model may help equip genetics professionals to support parents to communicate effectively with their children in order to improve health outcomes and family adaptation to 22q11DS. Practice implications Our findings may apply not only to 22q11DS, but also to other genetic conditions where psychiatric manifestations occur.