ArticleBMJ paediatrics open2025
Development and evaluation of an autism information pack for culturally and linguistically diverse families: a quality improvement initiative.
Article in BMJ paediatrics open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundParents of children newly diagnosed with autism spectrum disorder (ASD) often feel overwhelmed by the volume and complexity of information provided at diagnosis. For the culturally and linguistically diverse (CALD) families in our district, these challenges are compounded by language barriers and limited health literacy. This quality improvement initiative aimed to develop and evaluate an Autism Information Pack to support families during the postdiagnostic period, assessing its feasibility, acceptability and appropriateness, with parent feedback incorporated into future resource development.
methodsA mixed methods convergent design was used. The pack was developed as part of the first cycle of a quality improvement project by a multidisciplinary clinician stakeholder team, incorporating high-quality existing resources and new content aligned with health literacy principles. Evaluation was conducted across Child Development Assessment Service clinics in South Western Sydney. 19 parents from culturally diverse backgrounds received the pack and completed a baseline questionnaire, followed by a phone interview 3 weeks later. Measures assessed ASD understanding, service navigation confidence, pack engagement and suggestions for improvement.
results14 parents completed follow-up. Of these, six read the full pack, four read part of it and four did not engage. Among readers, most reported that it improved their understanding of ASD and confidence in finding supports. All found the content clear, though six noted it was not in their preferred language. Qualitative feedback emphasised the pack's cultural relevance, value in clarifying ASD and role in supporting navigation. Parents recommended more practical strategies, emotional support and diverse delivery formats.
conclusionThis initiative addressed a key service gap for CALD families. The resource is now in routine use and will be translated into Arabic and Vietnamese. Parent feedback will directly inform the next codesigned iteration, which will improve content and multimodal delivery to meet the needs of diverse communities.
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