The burden of care, parenting stress, and navigating welfare services: parents’ everyday experiences of young children with autism spectrum disorder - Summary - MDSpire
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Challenges of Caregiving, Parental Stress, and Engaging with Support Services: Insights into the Daily Lives of Parents with Young Children Diagnosed with Autism Spectrum Disorder
To explore how parents of preschool children with autism spectrum disorder (ASD) experience everyday parenting and how these experiences shape parenting stress and family life in a Scandinavian context.
Approach:
Study Design: Thirteen individual semi-structured interviews were conducted with mothers and fathers of children with ASD aged three to five, analyzed using Systematic Text Condensation.
Key Findings:
Parents continuously adapt to their child's needs while managing concerns for siblings and the child's safety.
Experiences of participation and isolation coexist among parents.
Preschool services and support are important for parents.
Parents encounter bureaucratic complexity when interacting with welfare services.
Interpretation:
Parenting a young child with ASD involves ongoing tasks and adaptation, influenced by the child's needs and the coherence of support systems.
Limitations:
The study's findings may not be generalizable beyond the Scandinavian context.
Sample size was limited to thirteen interviews.
Conclusion:
When services are fragmented or uncoordinated, parental burden and stress increase.
In a nationwide US cohort, parental subfecundity was associated with higher odds of autism spectrum disorder and modest increases in behavioral symptoms, while in vitro fertilization showed no statistically significant associations with neurodevelopmental outcomes.
