Development and evaluation of an autism information pack for culturally and linguistically diverse families: a quality improvement initiative.

Researchers created an information pack to help culturally diverse families understand autism after their child's diagnosis. They tested it with 19 families and found that parents who read it felt more confident about autism and finding support services. However, many parents wanted it in their own language and asked for more practical tips and emotional support. The pack is now being translated into Arabic and Vietnamese.

This quality improvement study developed and evaluated an autism information pack specifically for culturally and linguistically diverse (CALD) families in South Western Sydney. Nineteen parents from diverse backgrounds received the pack and completed baseline questionnaires, with 14 completing follow-up assessments. Among those who engaged with the material, most reported improved understanding of autism and increased confidence in finding supports. However, engagement varied significantly - only six parents read the full pack.

Key barriers included language preferences, with six parents noting the content wasn't in their preferred language. Parents provided valuable feedback emphasizing the pack's cultural relevance and utility for understanding autism, while recommending additions such as practical strategies, emotional support resources, and diverse delivery formats.

CALD families require tailored, culturally appropriate autism information resources. Language barriers significantly impact engagement and should be addressed through translation. Multi-modal delivery formats and inclusion of practical strategies and emotional support may improve uptake. Co-design approaches with families are valuable for developing culturally responsive resources.

Small sample size with only 19 participants and 26% dropout rate. No control group for comparison. Single geographic region limits generalizability. Engagement measurement may not capture partial reading or comprehension. Follow-up period was brief at only 3 weeks.

Parents 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. A 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. 14 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.

This 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.