A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families

Abstract

This study adopted a community-engaged approach to explore Korean parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Understanding the experiences of culturally and linguistically diverse families and their children may help facilitate the development of more inclusive, appropriate, and culturally sensitive services. Semi-structured interviews with 20 Korean parents of autistic children were analyzed using a thematic approach. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. Lay abstract Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.

Barriers to access and utilization of healthcare services for minority-language speakers with neurodevelopmental disorders: A scoping review

“…This domain refers to policies, procedures, or practices that tend to have a negative impact on access or utilization of healthcare services ( 36 ). Within this domain, five main themes emerged: (1) disconnect between the needs of users and services offered, (2) treatment quality, (3) lack or training for healthcare professionals, (4) challenges with interpretive services, and (5) lack of quality information in the minority language.…”

“…In addition to the lack of interpreters, caregivers who are minority-language speakers also report a lack of available information in minority languages (six articles). Parents often have difficulty accessing printed information in their minority language about their child's disorder ( 60 ) and guidance or information regarding the various services and resources available to their family ( 36 ). And, even when materials are available, their quality is often poor ( 60 ).…”

“…Moreover, because materials offered in the majority language often include medical jargon, they are difficult for minority-language caregivers to understand [particularly for those caregivers who have limited levels of proficiency in the majority language; ( 60 )]. Consequently, caregivers who have limited proficiency in the majority language are less likely to seek out the information about their child's disorder and have more challenges understanding the information obtained ( 36 ) which leads them to have lower levels of knowledge about NDDs ( 32 , 48 , 57 , 58 , 60 ) than majority-language caregivers. This lack of information regarding child development and NDDs may lead to further delays in children with NDDs being identified ( 60 ).…”

“…The challenge of offering family-centered services is another barrier in the Provider domain (found in three studies). Indeed, despite recognition of its importance for minority-language speakers with NDDs ( 36 , 54 ) practitioners can face difficulties adapting to the cultural expectations of each of their clients, being sensitive to diverging attitudes toward disabilities, and in reconciling their own beliefs with those of families [see ( 54 ) for an entire list of these challenges]. While these challenges may not be specific to minority-language services, they are likely common when working with minority-language families ( 36 , 54 ).…”

“…Indeed, despite recognition of its importance for minority-language speakers with NDDs ( 36 , 54 ) practitioners can face difficulties adapting to the cultural expectations of each of their clients, being sensitive to diverging attitudes toward disabilities, and in reconciling their own beliefs with those of families [see ( 54 ) for an entire list of these challenges]. While these challenges may not be specific to minority-language services, they are likely common when working with minority-language families ( 36 , 54 ). Practitioners' recommendation against bilingualism ( 39 ), despite families wanting to maintain their minority language ( 39 ) is also a challenge to family-centered practice, in addition to contravening best-practices.…”