Autism spectrum disorder (ASD) is associated with a variety of physical, mental, and behavioral healthcare needs. However, parents of autistic children consistently report difficulty accessing necessary services, and no instrument has been validated to assess and quantify these barriers for autistic children. The current study aims to adapt and validate the Barriers to Care Questionnaire (BCQ), a pre-existing measure of barriers to healthcare for children with specific healthcare needs, for families of autistic children. The BCQ and theoretically related measures were collected from 242 parents (117 parents of autistic children, 125 parents of non-autistic children). Cronbach’s alpha statistics (ranging from 0.87 to 0.96 for BCQ subscales) provide evidence of reliability for the BCQ. The BCQ subscales were correlated with unmet treatment need, treatment experiences, and theoretically related variables at the child, parent, and family level, providing evidence of convergent validity. Correlations were of low magnitude with theoretically unrelated variables (parent personality and socially desirable responding), suggesting preliminary evidence of discriminant validity. Additionally, the BCQ subscales predicted a significant amount of variance in unmet need and treatment experiences over and above other predictors for autistic youth, indicating incremental validity. Parents of autistic children reported significantly more barriers to care across all subscales of the BCQ than parents of non-autistic children, and the highest average item score was on the “skills” subscale, which measures difficulties with navigating the healthcare system. Results support that the BCQ can be used among autistic youth, and suggest the critical need for family-centered supports and provider education in order to ameliorate barriers to healthcare for autistic children. / M.S. / Autism spectrum disorder (ASD) is related to many physical, mental, and behavioral healthcare needs. However, parents of autistic children state that it is often hard to receive healthcare when their child needs it. No questionnaire exists to measure barriers that make getting healthcare harder for autistic children. Our study adapted the Barriers to Care Questionnaire (BCQ) for families of autistic children. The BCQ and related questionnaires were filled out by 242 parents (117 parents of autistic children, 125 parents of non-autistic children). The BCQ reliably and consistently measured barriers to care in these groups. The BCQ subscales were associated with unmet treatment need, treatment experiences, and other related variables at the child, parent, and family level. The questionnaire was less strongly related to variables that we would not expect to be associated with barriers to care, like personality and social desirability. Also, the BCQ subscales predicted healthcare experiences even when accounting for other factors that might impact access to care. Parents of autistic children reported more barriers to care on all subscales of the BCQ than parents of non-autistic children, and the highest average item score was on the “skills” subscale, which measures difficulties with navigating the healthcare system. Results show that the BCQ can be used among autistic youth, and suggest the need for family-centered supports and provider education in order to improve barriers to healthcare for autistic children.
| Identifer | oai:union.ndltd.org:VTETD/oai:vtechworks.lib.vt.edu:10919/103242 |
| Date | January 2021 |
| Creators | DeLucia, Elizabeth |
| Contributors | Psychology, McDonnell, Christina G., Scarpa, Angela, Stanton, Kasey |
| Publisher | Virginia Tech |
| Source Sets | Virginia Tech Theses and Dissertation |
| Language | en_US |
| Detected Language | English |
| Type | Thesis |
| Format | ETD, application/pdf, application/pdf |
| Rights | Attribution-NonCommercial-NoDerivatives 4.0 International, http://creativecommons.org/licenses/by-nc-nd/4.0/ |
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