Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder
Abstract
Research in the post-genomic era has provided substantial contributions toward identification of medical, genetic and environmental heritability factors associated with autism spectrum disorder (ASD). A specific etiology related to the diagnosis remains unclear, although prevalence statistics continue to rise with profound impact on families and their primary care providers (PCPs). Support professionals encounter significant challenges delivering comprehensive management for this complex neurobehavioral and developmental disorder. Children with ASD experience significantly higher risk for unmet healthcare needs, and parents report less satisfaction with their care although current literature does not fully explain why this issue persists. This study sought parent insight for the missing answers needed to inform practice. Eleven parents of children with an ASD participated in the study. Parent perceptions of care were examined utilizing Interpretive Phenomenological Analysis (IPA) and the Measure of Process of Care (MPOC-20) to illuminate and describe their lived experiences raising children with ASD, and interactions with their PCPs. Most parents utilized their child's PCP for general health maintenance, and many felt their PCP was unable to manage issues specifically related to their child's ASD. Most did not have an expectation for support with behavioral management in the home and school setting or identification of community and mental health resources, although many stru…
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Parents in the Russell and McCloskey (2016) study articulated strategies which relate to their positive experiences with HCPs when they are really listened to, really looked at, focused on positives, and when limitations are not assumed but a different way of doing things is figured out.
“By contrast, parents in the Russell and McCloskey (2016, p. 25) study ar -ticulated strategies which relate to their positive experiences with HCPs when the following occurs: '… having them really listened to, really looked at, focussing, that people look at the positives, and that there aren't really limitations. It's just figuring out a different way of doing things for them'.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Russell and McCloskey, 2016
Parents wanted to share with the dentist the best way to deal with the child and welcome the intervention of dentists who listen and seek the advice of the parents before proceeding with the consultation.
“Parents wanted to share with the dentist the best way to deal with the child and welcome the intervention of dentists who listen and seek the advice of the parents before proceeding with the consultation (Brown & Brown, 2014) and seeking parent expertise (Russell & McCloskey, 2016).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Russell & McCloskey, 2016
Parents of children with ASD generally do not expect recommendations regarding ASD treatment from their PCP and consistently report that accessible, ASD-specific care is limited.
“Relatedly, parents of children with ASD generally do not expect recommendations regarding ASD treatment from their PCP and consistently report that accessible, ASD-specific care is limited [29, 30].”
From Pharmacological treatment in autism: a proposal for guidelines on common co-occurring psychiatric symptoms (2025) · cites this paper as [30]
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“Journal of Pediatric Nursing (2016) 31, 21–31 which can exert wide ranging neurological and systemic functions with rather similar behavioral and biological manifestations (Hu, 2013).”
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“Relatedly, parents of children with ASD generally do not expect recommendations regarding ASD treatment from their PCP and consistently report that accessible, ASD-specific care is limited [29, 30].”
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Primary Care Pediatricians’ Perspectives on Autism Care
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- Authors
- Russell, S., & McCloskey, C. R.
- Affiliations
- St. John Fisher University (US)
- Corresponding author
- Russell, Sarah
- Venue
- Journal of Pediatric Nursing
- Publisher
- Elsevier BV
- Published
- 2016-01
- Volume
- 31
- Issue
- 1
- Pages
- 21-31
- ISSN
- 0882-5963 (ISSN-L)
- OpenAlex
- W2214304560
- Cited by
- 93
- References
- 6
- Citations by year
- 2026: 3 · 2025: 12 · 2024: 13 · 2023: 7 · 2022: 12 · 2021: 9 · 2020: 9 · 2019: 11 · 2018: 10 · 2017: 4 · 2016: 1 · 2015: 1 · 2013: 1
- FWCI
- 3.21
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pediatric Nursing (publishedVersion)
- PubMed (publishedVersion)
- Fisher Digital Publications (St. John Fisher College) (submittedVersion)
- Funders
- Health Resources and Services Administration
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, parental attitudes, primary care providers, quality of care, unmet health needs, behavior management, mental health resources, community resources, family-centered care, lived experience of parents
- MeSH terms
- Autism Spectrum Disorder, Adult, Child, Developmental Disabilities, Child, Preschool, Female, Humans, Male, Middle Aged, Parent-Child Relations, Parents, Perception, Primary Health Care, Quality of Life, Surveys and Questionnaires, United States, Treatment Outcome, Risk Assessment, Patient-Centered Care, Needs Assessment
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