Exploring the Importance of Guardianship for Individuals Coming of Age with 22q11.2 Deletion Syndrome
Capstone Project Committee: Nancy Callanan, MS, CGC, Vandana Shashi, MD, Kelly Schoch, MS, CGC
Background: 22q11.2 deletion syndrome (22q11DS) is the most commonly occurring microdeletion syndrome, and has wide phenotypic variability among affected individuals. In addition to clinical features, symptoms often encompass an array of behavioral, psychological, and learning difficulties. Individuals with 22q11DS tend to have a unique cognitive profile, with specific deficits in executive functioning that may impact reasoning and decision-making, and make them more vulnerable in social contexts. Many studies have demonstrated a significantly increased risk for major psychiatric illness in individuals with 22q11DS. Guardianship is a legal process designed to protect the best interests of uniquely vulnerable individuals in adulthood. Accordingly, pursuing guardianship may be a worthwhile consideration for some parents of adolescents with 22q11DS. Nonetheless, there is an absence of such information routinely accessible to parents in the context of this specific clinical population. Methods: The goal of this project was to address this need by conducting a primary literature review on both 22q11DS and legal guardianship. Subsequently, an informational resource targeted for parents of adolescents with 22q11DS was developed in the form of a tri-fold brochure. The brochure was modified for readability and feedback was sought informally from several parents of individuals with 22q11DS, family and disability attorneys, and a social worker. This feedback was incorporated into a final revision of the brochure. Discussion: Ultimately, tailored guardianships may be an appropriate source of protection for some families of adolescents with 22q11DS to consider. While the brochure produced is targeted for our specific clinic population, our hope is that this resource can be modified to suit similar clinic populations in the future. This study responded to the stated needs of a specific population and used relevant information to develop an informational resource that is accessible to families and adaptable to broader contexts.
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