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117 Quality improvement: improving autism spectrum information access for ethnic minority caregivers with limited English proficiency, starting with the Bengali community
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117 Quality improvement: improving autism spectrum information access for ethnic minority caregivers with limited English proficiency, starting with the Bengali community
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Journal Article
117 Quality improvement: improving autism spectrum information access for ethnic minority caregivers with limited English proficiency, starting with the Bengali community
2023
Overview
Background and ObjectivesThe Neurodevelopmental Assessment Clinic (NAC) at Great Ormond Street Hospital (GOSH) recommends websites regarding Autism Spectrum Disorder (ASD) to caregivers of autistic children and young people. Since most information is only available in English, it is inaccessible to ethnic minority caregivers with limited English proficiency (LEP). This barrier makes it difficult for these families to make well-informed decisions about ASD management, contributing to health inequalities. This novel quality improvement project conducted with the NAC aims to reduce inequities in ASD information access. Bengali caregivers with LEP were targeted first.MethodsThe NAC’s recommended websites were audited to assess their accessibility for LEP individuals. A Plan-Do-Study-Act (PDSA) cycle was then conducted. A provisional written Bengali resource about ASD was developed by translating pre-existing information from GOSH and hyperlinking external sources. To evaluate the resource, a quasi-experimental study design was used where Bengali-proficient individuals without LEP completed a questionnaire.ResultsNAC’s recommendations consistently underperformed the standard for LEP users. The GOSH website had the worst performance (score=0). The provisional resource was evaluated by 30 participants. Non-parametric analysis confirmed that post-test scores, which reflected ASD understanding after reading the resource, were significantly higher than pre-test scores (p<0.001). These were not significantly affected by an individual’s existing ASD understanding, Bengali reading ability or Bengali education level. 17 participants provided qualitative feedback. Thematic analysis revealed limitations in language (35.3%) and positive feedback (29.4% ) were most commonly reported.ConclusionInitially NAC’s recommendations were inaccessible for LEP users. While this Bengali resource is useful, it remains inaccessible for some Bengali caregivers with LEP. Therefore, where possible, NAC must determine whether the informational needs of users can be met before recommending this resource. Further PDSA cycles should be used to improve the resource. Further research regarding resources for LEP users with end-user involvement is recommended.
Publisher
BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health,BMJ Publishing Group LTD
