Parenting Stress in Tuberous Sclerosis Complex

Abstract

Background: Tuberous sclerosis complex (TSC) is a multisystemic genetic disorder with clinical variability. As the needs of children with TSC may differ, parenting demands may similarly differ. Characterizing parenting stress, or emotional maladaptation from parenting duties, can enable health care providers to assist parents of children with TSC.

Methods: Multiple methods were used to survey 269 parents of children (aged zero to 12 years) with TSC. The Parenting Stress Index (PSI) measured parenting stress, and children's TSC clinical, seizure, and neuropsychiatric features were obtained. A qualitative free response item asked parents to describe significant parenting stressors for a child with TSC.

Results: Half of the participants achieved a clinically relevant PSI composite score with a high representation of the PSI subdomain, Parent-Child Dysfunction. Parents reported higher stress for children with certain skin and ocular TSC features, intractable epilepsy with or without status epilepticus, developmental delay or intellectual disability, TSC-associated neuropsychiatric disorders, and parent race and income. These variables accounted for 46% of PSI variability. Thematic analyses identified stressors consistent with survey findings and other novel constructs like uncertainty and a lack of personal or health care support.

Conclusions: These results could be used to improve parenting stress by counseling on the dermatologic and ophthalmologic TSC findings, anticipatory guidance on seizure symptoms, maximizing early childhood intervention or related therapies, and providing psychosocial assessment to all parents with a low threshold for referral to a mental health specialist. These considerations may ameliorate parenting stress and ultimately improve quality of life for families and patients with TSC.

Keywords: Caretaker burden; Parenting stress; Psychosocial; TSC-associated neuropsychiatric disorders; Tuberous sclerosis complex.