Author ORCID Identifier
Date of Graduation
Masters of Science (MS)
Tuberous Sclerosis Complex (TSC) is a multi-systemic genetic disorder with great clinical variability. As the needs of one child with TSC may vastly differ from another, parenting demands may similarly differ. Characterizing parental stress, or emotional maladaptation arising from parenting duties, can enable healthcare providers to assist parents of children most efficiently with TSC-related symptoms and improve both parent and child health outcomes. This study surveyed 269 parents of children (aged 0-12 years) with TSC and received the following information: children’s TSC clinical features, parent demographics, and a Parent Stress Index (PSI) score. Parents reported higher stress levels for children with certain skin and ocular TSC features, intractable epilepsy with or without status epilepticus, low adaptive functioning, neuropsychiatric diagnoses (TSC-Associated Neuropsychiatric Disorders; TAND), and parent race and income. These variables accounted for 69% of variability in parent’s PSI scores. Overall, 50% of parents achieved a clinically relevant PSI. Thematic analyses identified stressors consistent with survey findings and noted that parents face uncertainty and a lack of personal or healthcare support as additional stressors. Utilizing this data to improve parent’s healthcare experience can be achieved in multiple methods: improving coordination between counseling and school services with a focus on parent-child interactions, assessing barriers to healthcare or accessing early childhood intervention, and providing psychosocial assessment to all parents with a low threshold for referral to a mental health specialist. These suggestions may efficiently ameliorate parental stress and ultimately improve quality of life for families and patients with TSC.
Tuberous Sclerosis Complex, TSC, TAND, Parental stress, Stressors, Genetic Counseling
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