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Contributors to Parenting Stress in Tuberous Sclerosis Complex at Preschool Age
Corinna Klein1, Camila A Ferrario2, Rajsekar R Rajaraman3
1UCLA Semel Institute of Neuroscience and Human Behavior, David Geffen School of Medicine, University of California, Los Angeles, California; Department of Psychology & Child Development, California Polytechnic State University, San Luis Obispo, California.
Insights
Parenting stress in children with tuberous sclerosis complex (TSC) is significantly influenced by challenging child behaviors like externalizing and internalizing problems. Addressing these behaviors and providing support can help manage parental stress.
Area of Science:
- Pediatric Psychology
- Neurodevelopmental Disorders
- Family Studies
Background:
- Tuberous sclerosis complex (TSC) presents unique challenges for families.
- Parenting stress is a significant concern for parents of young children with TSC.
- Identifying contributing factors to parenting stress is crucial for effective support.
Purpose of the Study:
- To identify child and family characteristics associated with parenting stress in parents of young children with TSC.
- To understand the specific behavioral, developmental, and medical factors impacting parenting stress.
- To inform interventions aimed at reducing parenting stress in this population.
Main Methods:
- Data collected from 98 children with TSC (ages 3-6) and their families across North America.
- Telehealth assessments gathered child developmental, behavioral, and medical history, alongside family demographics and parenting stress.
- Univariate and multivariate analyses examined relationships between parenting stress and child/family variables.
Main Results:
- Elevated parenting stress reported by a substantial minority of parents, particularly those perceiving their child as difficult.
- Higher child externalizing and internalizing problems, social withdrawal, and lower adaptive skills correlated with increased parenting stress.
- Financial difficulties related to medical care and seizure severity also contributed to parenting stress.
Conclusions:
- Challenging child behaviors are primary drivers of parenting stress in young children with TSC.
- Social withdrawal and developmental delays are common traits associated with increased parenting stress.
- Behavioral interventions and psychoeducation can help parents manage the demands of caring for a child with TSC.
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.
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