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Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder
Meredith Close1, Gabriella Aberbach, Eugenia Chan
1Division of Developmental Medicine, Boston Children's Hospital, Boston, MA.
Journal of Developmental and Behavioral Pediatrics : JDBP
|October 11, 2023
Summary
Parental priorities for children with autism spectrum disorder (ASD) include social, communication, emotional, and behavioral outcomes. Healthcare providers should inquire about these key areas to better support families.
Area of Science:
- Child Psychology
- Developmental Pediatrics
- Autism Spectrum Disorder Research
Background:
- Autism spectrum disorder (ASD) outcomes typically focus on cognitive, language, behavioral, and adaptive functioning.
- It remains unclear if these standard measures align with the priorities of children with ASD and their caregivers.
Purpose of the Study:
- To identify parental perceptions of crucial outcomes for children with ASD.
- To determine if healthcare providers are addressing these parental concerns in clinical practice.
Main Methods:
- 60 parents of school-aged children with ASD participated.
- Parents answered open-ended questions about most important child functioning aspects and what healthcare providers should ask.
- Thematic analysis was used to code and analyze responses.
Main Results:
- Key parental concerns for child functioning included "Social," "Communication," "Emotional," and "Behavior."
- Parents ranked "Communicating with and understanding others," "Social skills," and "Behavior" as most important.
- The primary area parents wanted healthcare providers to inquire about was "Social" functioning.
Conclusions:
- Parental priorities for ASD outcomes largely align with established categories, with a notable emphasis on "Emotional" well-being.
- The findings suggest a need for healthcare providers to incorporate a broader range of outcome measures, including emotional aspects, into their assessments for children with ASD.
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