Assessment of parent/caregivers' level of guilt, worry, and uncertainty related to their child's increased risk of psychiatric disorders associated with 22q11 deletion syndrome

Individuals with 22q11 deletion syndrome (DS) are at risk to develop any of multiple physical, cognitive, and psychiatric symptoms associated with this syndrome. Our goal was to access level of guilt/worry (GW) and long-term uncertainty (LTU) with respect to these three categories of symptom. Since psychiatric symptoms in individuals with 22q11 DS usually have later onset, we also wanted to examine how uncertainty about the potential for psychiatric symptoms impacted parents' level of worry, concern, and their ability to cope. Parents were recruited from internet support groups, Sick Children's Hospital of Toronto, and the MIND Institute at UC Davis. A total of153 parents or caregivers of children with 22q11 DS completed online survey. Of parents who completed online survey, we invited a subset of parents (N=14) whose children were not experiencing psychiatric symptoms to participate in a phone interview. Parents in this study experienced greater worry and uncertainty about learning issues than about physical or psychiatric symptoms. Higher levels of GW and LTU for mental well-being were correlated with increased symptom severity (p<.001) and a positive family history of mental illness (p<.01). Analysis of interviews demonstrated that parents are divided on level of concern about the risk for psychiatric illness, with 4/14 expressing no concern, 5/14 expressing high concern, and 5/14 falling somewhere in between. Parents reported various reasons for concern about psychiatric illness including their child's independence, quality of life, and options for treatment. Coping methods employed by parents included seeking information, taking one day at a time, and taking charge. The preferred timeline for information delivery about risk for psychiatric illness was gradual for 64.3% of parents, whereas 35.7% wanted all information up front. Deciding when and how to deliver information about the risk for psychiatric symptoms must be done on a case by case basis, although most of the parents in this study preferred a gradual delivery. Recognizing which concerns are salient for each family is the first step in providing care and guidance tailored to that family's needs.;Key words: velocardiofacial syndrome, 22q11 deletion syndrome, DiGeorge syndrome, psychiatric conditions, worry, uncertainty...