Date of Award

Spring 2022

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Crystal Hill-Chapman

Abstract

The objective of this study was to assess the perceived utility of an educational resource booklet addressing the psychiatric manifestations and mental health considerations within 22q11.2 deletion syndrome (22q11.2DS).

Seventy-three parents of children with 22q11.2DS completed online surveys before and after reading the booklet. The surveys assessed personality factors and feelings of empowerment, worry, self-stigma, and ability to tolerate uncertainty.

Participants reported that the booklet was easy to understand, provided better understanding of 22q11.2DS and mental illness, answered questions about mental illness associated with the condition, improved knowledge of strategies for protecting the mental health of children with the condition, raised confidence levels in recognizing early warning signs of mental illness, and would be helpful for other families with children affected by the condition. Participants’ feelings of empowerment increased by the end of the process while feelings of worry decreased. It was reported that the information contained in the booklet would be beneficial to receive at the time of the diagnosis.

The participants had overall high satisfaction with the booklet. Their knowledge and understanding of mental health within 22q11.2DS reportedly increased after viewing the booklet. The study results suggest a potential benefit in distributing this educational resource to other parents of children with 22q11.2DS.

Rights

© 2022, Kayla Blankenship

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