Understanding Barriers to Healthcare for Children with Autism Spectrum Disorder: A Preliminary Measure Validation Study

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.

Name thesis:degree_name

M.S.

Level thesis:degree_level

masters

Discipline thesis:degree_discipline

Clinical Science

Department dc:contributor.department

Psychology

Grantor dc:publisher

Virginia Tech

Year dc:date.issued

2021

Author dc:creator

• DeLucia, Elizabeth

Chair dc:contributor.committeechair

• McDonnell, Christina G.

Committee members dc:contributor.committeemember

• Scarpa, Angela
• Stanton, Kasey

• autism spectrum disorder
• barriers to healthcare
• access to care
• measurement

Statement dc:rights

• Attribution-NonCommercial-NoDerivatives 4.0 International

Licence dc:rights.uri

• http://creativecommons.org/licenses/by-nc-nd/4.0/

Language dc:language.iso

en_US

Handle dc:identifier.uri

http://hdl.handle.net/10919/103242

OAI identifier oai:identifier

oai:vtechworks.lib.vt.edu:10919/103242