Box 1.

Recommendations from parents for desired support

Hands on and practical: Health professionals should discuss the specifics of what this conversation might look like and how to go about having it. Parents expressed interest in: an educational video showing a real engagement between a parent and child; a list of examples of communication dilemmas or miscommunications between a parent and child; and including the child with 22q11DS in conversations with health professionals “I mean it’s one thing for mom and dad to say it but I think it’s more empowering if she goes and has her own conversation and has her own questions and gets her own answers. I think it gives her more control over what she wants to do and her perception of things.” – Parent 6, father of 7-year-old child

Consistent and ongoing: Parents received great support when their child was first diagnosed with 22q11DS but ongoing support as their child grew older was not readily available. Parents felt that ongoing support would allow them to be proactive in communicating with their child rather than reactive and would remove the burden of initiating contact when in need of support. “I think that there’s a real lack of support for parents to have these conversations…Because you know, you go through like counseling and support early on… but then you know you have an appointment once a year, every two years, but then it comes up to a point where, well, this is something that would be nice to be able to sort of talk through.” – Parent 3, father of 11-year-old child

Personalized: Support is most helpful when it is personalized to the parent’s context, child, and family. Many parents recalled the personalized psychiatric genetic counseling they had previously received, and wanted that same level of personalization when receiving support around communicating with their child about mental illness I think we probably like sat there forever asking like all these questions that we had. [Chuckles] And [the genetic counselors] were really great about it. They sat and answered all the questions and took time with us and that was really helpful. And you don’t find that often with doctors. Like, you know especially with specialists. You’re in and out so quickly and they have patients to see and they’re on tight schedules and, yeah. But we were able to take our time with the genetic counselor and that was really, really helpful. –Parent 10, mother of a 7-year-old child

Someone with expertise: To provide effective support around communicating with their child, health professionals must 1) be knowledgeable about 22q11DS and 2) develop and maintain a trusting relationship with the parent(s). Nearly every parent had previously interacted with a health professional that “had no clue about 22q,” which eroded parents’ trust in the health professional and their ability to provide tailored, relevant support to their child. “I know that I’m taking my daughter to somebody who understands the complexities and the multifaceted, not approach but the various things that 22q affects as opposed to just the psychological aspect.” – Parent 6, father of 7-year-old child