Parental Satisfaction with Diagnostic Evaluations: The Effects of Diagnosis, Race, and Education

Background: Parents receiving a diagnosis of developmental disability for their child have noted a substantial amount of dissatisfaction or negative appraisals with the diagnostic evaluation process (Goin-Kechel et al., 2006; Stuart & McGrew, 2009). Criticisms relate to timeliness, professionalism, clarity of results, and thoroughness of recommendations (Keenan et al., 2010). Moreover, health-related disparities for minorities and low-income families have been identified across a range of childhood disorders, including autism, regarding early identification, access to intervention, and prognosis (Fountain et al., 2012; Kuo et al., 2012; Tregnago & Cheak-Zamora, 2012). However, research on sociodemographic disparities regarding parents’ perception of screening and evaluation is limited.

Objectives: The goal of this study is to identify factors that affect parental satisfaction with the autism screening and evaluation process, to pinpoint strengths and areas of improvement in clinical practice. Given disparities in healthcare utilization and access, this study specifically explores sociodemographic factors.  

Methods: Toddlers demonstrating risk on autism screening during routine pediatric visits were referred for diagnostic evaluation. Families received comprehensive assessment and oral and written feedback, which included test results, diagnosis, and specific recommendations. Parents completed and mailed back Post Evaluation Satisfaction Questionnaires after receiving the written report. Using MANOVA and independent samples t-tests, the effects of parental race, education, income, and diagnostic outcome were measured on satisfaction outcomes.

Results: The sample of parents (n=68) was 32.4% racial/ethnic minorities, 41.7% with bachelor’s degree, and 92.6% mothers; mean age of toddlers was 25.9 months, with 55.9% diagnosed with ASD. Racial/ethnic minorities identified screening and evaluation services as more helpful than Whites, t(52)=-2.230, p=.030. Parents who earned less than a bachelor’s degree demonstrated greater agreement with evaluation results compared to bachelor’s degree holders, F(2, 56)=3.227, p=.047. Additionally, parents of children diagnosed with ASD reported lower clarity of information and quality of staff interactions compared to those who had a non-ASD delay (ps <.05). However, when accounting for parental race, income, and education this effect of diagnosis was no longer apparent.  

Conclusions: Results suggest that minority status and lower education were associated with higher agreement with findings and ratings of helpfulness. One might hypothesize that minorities and/or parents with lower education experienced power differentials in the evaluation process, which contributed to social desirability bias, or that increased helpfulness may have been due to reduced baseline knowledge regarding child development. Also, receiving a diagnosis of ASD is related to lower perceived clarity of information and quality of interaction compared to other developmental delays. This may be due to the complex nature of autism symptomatology. However, sociodemographic variables also seem to differentiate parent satisfaction outcomes. Because parental education, race, and income are interrelated, further examination of these factors may be of value in understanding gaps in service provision. One study limitation was the use of a convenience sample, which may yield sampling bias. Researchers and practitioners are encouraged to seek parental feedback to help inform the shift in healthcare for individuals with developmental disabilities to a more comprehensive, family-centered care model.