Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder

Area of Science:

• Neurodevelopmental Disorders
• Genetics and Genomics
• Public Health

Background:

• Autism spectrum disorder (ASD) prevalence is rising, impacting families and primary care providers (PCPs).
• Children with ASD face higher risks of unmet healthcare needs and lower care satisfaction.
• Existing literature lacks full explanation for persistent care gaps in ASD management.

Purpose of the Study:

• To explore parent insights into the lived experiences of raising children with ASD.
• To identify perceived deficiencies in primary care for children with ASD.
• To inform the development of more comprehensive, family-centered care models.

Main Methods:

• Qualitative study involving 11 parents of children with ASD.
• Interpretive Phenomenological Analysis (IPA) to examine lived experiences.
• Measure of Process of Care (MPOC-20) to assess parent perceptions of care.

Main Results:

• Parents utilize PCPs for general health but often find them ill-equipped for ASD-specific concerns.
• Many parents lack expected support for behavioral management and resource identification.
• Significant unaddressed needs exist in home/school behavioral support and community/mental health resources.

Conclusions:

• Parent perceptions reveal critical practice deficiencies in primary care for ASD.
• A family-centered approach is needed to address the complex needs of children with ASD.
• Integrating parent insights can build more effective and supportive care models for ASD.