Contributors to Parenting Stress in Tuberous Sclerosis Complex at Preschool Age.

BACKGROUND

This study aimed to identify child and family characteristics contributing to parenting stress in parents of young children with tuberous sclerosis complex (TSC).

METHODS

Data on 98 children with TSC aged 3 to 6 years old were gathered as part of a study on the assessment and treatment of behavior problems in TSC. Families recruited throughout North America participated in telehealth assessments, in which child developmental, behavioral, and medical history data were gathered, along with family demographics and parenting stress. The relationship between parenting stress and child and family variables was investigated through univariate and multivariate analysis.

RESULTS

A substantial minority of parents reported elevated levels of parenting stress, with the greatest elevations in perceptions of their child as difficult. Higher child externalizing problems, internalizing problems, and social withdrawal contributed to greater parenting stress in multivariate analysis. Lower child adaptive skills were associated with more parenting stress. Financial problems related to medical care and child seizure severity also contributed to variation in parenting stress.

CONCLUSIONS

Results offer novel insights into specific behavioral, developmental, and medical domains that present challenges when parenting a young child with TSC. Challenging child behaviors are a primary driver of parenting stress in families of preschool-aged children with TSC, along with other common traits, including social withdrawal and developmental delay. Addressing contributors to parenting stress through behavioral interventions and psychoeducation about expected developmental trajectories may enable parents to better manage the many demands of caring for a young child with TSC.