A community engaged approach to examining quality of life and service navigation in Korean families of autistic children in BC, Canada

Few studies to date have explored the experiences of racialized and ethno-cultural families raising autistic children in multicultural contexts such as Canada. Research conducted in the US and Canada have identified strengths and difficulties related to family functioning and coping strategies used by immigrant parents. Additionally, this research has also identified barriers and facilitators to accessing diagnostic and other autism services across the lifespan. However, the majority of these studies have broadly categorized immigrant populations, potentially masking important differences within pan-ethnic populations. In Canada, and British Columbia (BC) specifically, one of the largest and fastest growing visible minority groups are Koreans (Statistics Canada, 2017). Yet despite this, no studies to date have examined the experiences and perceptions of Korean immigrant parents of autistic children living in BC. This gap in the research has become increasingly urgent given the growing prevalence rates of autism and the highly complex service system in Canada, which varies considerably across provinces. This research utilized a community engaged approach and qualitative methodology to explore quality of life, service navigation, and coping strategies among 25 Korean parents of autistic children (5-33 years) living in BC. This study addressed three aims. First, parents' conceptualizations and descriptions of family quality of life (FQOL) were explored. Analyses revealed three themes that were central to their definitions of FQOL: family cohesiveness, value orientation, and acceptance from society. Second, parents' perceptions of barriers and facilitators to accessing autism services were examined. Barriers at the system (e.g., ineffective school policies), provider (e.g., negative attitudes, lack of service navigation support), and family level (e.g., stigma) were identified. Facilitators included family-centered care (system level), culturally competent and bilingual professionals (provider level), and connections to cultural community organizations (family level). Third, a subset of caregivers (n=12) representing both high and low levels of FQOL shared their coping strategies on how they came to terms with their child's diagnosis and manage stress. The results are discussed linking previous research to current findings and considered in terms of practice and policy implications with future areas of research identified.