A survey of experiences of parents of children with autism spectrum disorder (ASD) attending CUH: how can we become more ‘Autism-Friendly’

McCarthy, Nicole

A survey of experiences of parents of children with autism spectrum disorder (ASD) attending CUH: how can we become more ‘Autism-Friendly’

Files

NicoleMcCarthyCARLReport2022.pdf(834.94 KB)

Published Version

Date

2022-02-14

Authors

McCarthy, Nicole

Publisher

Community-Academic Research Links, University College Cork

Abstract

Title: A survey of experiences of parents of children with Autism Spectrum Disorder (ASD) attending CUH: how can we become more “Autism Friendly”. Introduction ASD is a life-long developmental disability characterised by social and communication impairments. This makes the experience of accessing medical services very stressful for both children and their families. Despite higher than average hospitalization rates, the hospital environment is poorly suited to support this population's needs. Objectives: To assess the standard of facilities available to families of children with ASD and to identify areas for improvement concerning their care in CUH. By gaining information from children with ASD who attend CUH, the availability, and the quality of ASD services they avail of, areas for improvement can be identified and recommendations can be implemented to make CUH more ‘autism friendly’. Methods: This cross-sectional mixed-methods study was carried out in cooperation with the Rainbow Club Cork Centre for Autism. The study population consisted of parents whose children accessed services at the Rainbow Club, the survey link was available on their social media pages and website. The survey contains open comment boxes for recommendations and five-point Likert scales to rate services on accessibility and quality. Patient identifiers are not collected. Results: Responses indicate the need for improvements to services available for children with ASD. A lack of awareness of services that are currently available to children at present was also identified. Of the parents’ survey, 18% of parents surveyed were unaware of any facilities. Overall the main areas for improvement identified are the Emergency & Paediatric departments. Conclusion: These opinions and recommendations are be included in a monthly meeting of the Autism Friendly Hospital Working Group and taken into account when devising the strategy to make CUH an autism-friendly hospital.

Keywords

Autism spectrum disorder , ASD , Autism-friendly , Parents of children with autism , Survey

Citation

McCarthy, N. (2022) A survey of experiences of parents of children with autism spectrum disorder (ASD) attending CUH: how can we become more ‘Autism-Friendly’. Cork: Community-Academic Research Links, University College Cork.