Addressing Disparities In Autism Spectrum Disorder Among Burmese Refugee Families: Psychoeducation & Support Intervention Research

Background & Purpose. This mixed methods study focuses on the experience of Burmese refugee caregivers with children diagnosed with Autism Spectrum Disorder (ASD), and a culturally adapted evidence-based caregiver intervention based on Parents Taking Action by Magaña et al. (2023). This intervention project developed and implemented a caregiver group curriculum tailored to and translated for the Burmese American refugee populations. Although existing research on ASD within Burmese communities is limited, studies suggest that immigrant families, including those from Asian backgrounds, often face delayed diagnoses and less awareness of ASD. These factors highlight the need for culturally sensitive and accessible interventions for Burmese American families.

Methods. Qualitative data were gathered from Burmese parents and siblings of children with ASD, Burmese community leaders working with children with ASD, and local health providers (N=17). Qualitative interviews with Burmese community members were conducted in Chin languages by research team members; data were analyzed through thematic analysis. Quantitative data were collected from primary caregivers of Burmese children diagnosed with ASD who participated in an 8-week intervention program (N=8). The intervention was delivered in Chin, the native language of the participants. The primary data collection consisted of pre- and post-surveys to evaluate changes and outcomes from the intervention. These surveys gathered information about participants' perceptions of ASD, the support they feel they have, and any changes in knowledge and attitudes toward ASD and caregiving. The evaluation also helped to assess the effectiveness of the intervention and ensure it is culturally appropriate and impactful.

Results. Parents demonstrated a modest increase in knowledge of autism spectrum disorder (ASD), with participants answering 36% of questions correctly at pre-intervention compared to 42% post-intervention. This improvement reflects a slight but meaningful gain in understanding. Additionally, the utilization of disability services, such as physical therapy and occupational therapy, increased from 2.88 to 3.63 on a standardized scale. Notably, the percentage of participants selecting "I don't know or understand what this service is" decreased significantly from 1.50 to 0.38, indicating greater awareness of available resources. Improvements were observed in parents' self-efficacy and emotional support, while burnout decreased. However, depressive symptoms increased. A slight escalation in children's ASD symptoms may reflect heightened parental awareness.

Conclusions & Implications. Findings highlight the importance of culturally tailored interventions for Burmese American refugee families affected by autism. The study highlights the impact of health literacy challenges, cultural stigma, systemic barriers, and health literacy of caregivers. The intervention showed positive outcomes in enhancing parental knowledge, self-efficacy, and emotional support, though it also revealed a need for further attention to mental health challenges such as increased depressive symptoms. These findings emphasize the growing need for more culturally sensitive, accessible interventions for Burmese American families, ensuring they have the resources and support to effectively navigate ASD.