ERIC Number: EJ1223859
Record Type: Journal
Publication Date: 2019-Sep
Abstractor: As Provided
What Do Parents Expect from a Genetic Diagnosis of Their Child with Intellectual Disability?
Dikow, Nicola; Moog, Ute; Karch, Stephanie; Sander, Anja; Kilian, Samuel; Blank, Rainer; Reuner, Gitta
Journal of Applied Research in Intellectual Disabilities, v32 n5 p1129-1137 Sep 2019
Background: Caring for a child with intellectual disability (ID) has been associated with increased social and psychological burdens. Diagnostic and prognostic uncertainty may enhance emotional stress in families. Method: The present authors assessed the motivations, expectations, mental health, physical health and the quality of life of 194 parents whose children with intellectual disability were undergoing a genetic diagnostic workup. Results: Most parents considered a diagnosis highly relevant for their own emotional relief, their child's therapies and education, or family planning. Parental mental health was significantly lower compared with the normative sample, but physical health was not different. The severity of the child's intellectual disability correlated negatively with their parents' mental and physical health, quality of life, and positively with parental anxiety. Conclusion: Healthcare providers should be aware of the disadvantages facing families with intellectually disabled children. Receiving practical, social and psychological support as well as genetic testing might be particularly relevant for families with severely disabled children.
Descriptors: Parent Attitudes, Expectation, Clinical Diagnosis, Genetics, Children, Intellectual Disability, Quality of Life, Severity (of Disability)
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
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