Adaptation and Preparation for Conducting a Parent-Implemented Autism Intervention Among Underserved Families in Taiwan

Background: Research consistently demonstrates that access to early intervention is associated with positive cognitive, adaptive, behavior, and language outcomes for children with autism spectrum disorder (ASD). Due to a lack of existing infrastructure and the absence of resources to deliver clinic- or school-based interventions for ASD in some regions of Taiwan, there is a need to provide feasible, low-cost intervention to families who have a child with ASD. Parent-mediated intervention and behavioral management are particularly suitable for these families to implement at home. Pivotal Response Training (PRT) is an evidence-based, naturalistic, behavioral intervention with a clear structure that can be used to target a variety of goals. These characteristics make PRT a good fit for the target population in Taiwan. Because local culture treats adults (i.e., parents or grandparents) as authoritative figures, more relationship-focused interventions may not be as accepted. However, cultural adaptation is likely needed to ensure PRT is appropriate for this group and acceptable to families.

Objectives:  To describe 1) cultural and social characteristics of socioeconomically disadvantaged families in Taiwan affected with ASD, and 2) challenges and barriers in adaptation, preparation and implementation of a parent-mediated ASD intervention for these families.

Methods: To prepare for full study implementation, a pilot study was conducted to test cultural sensitivity, appropriateness, and relevance of the instruments and questionnaires. Qualitative information was obtained through interviews with primary caregivers and local professionals who work with families affected by ASD. These interviews were conducted to gain knowledge about family needs and priorities for intervention in underserved families.

Results: Characteristics of study families include: very low SES, grandparents as primary caregivers, single-parent households, and dialects speaking households. Although national universal health care coverage is available in Taiwan, underserved families with a child with ASD report either never seeing a health care professional for developmental or behavioral issues or having significantly delayed diagnosis determination. Pilot results indicate that lack of autism awareness, barriers to accessing care (e.g., low literacy levels, limited knowledge about the health care system, no transportation), and lack of understanding the need to intervene in ASD are common reasons for not accessing intervention. In addition, results indicate cultural differences (e.g., limited use of praise, different behavioral goals, limited toy access) might require intervention adaptation. Instead of a typical PRT program, a culturally modified version with emphasis on behavioral management may address concerns that are most-pressing to caregivers and therefore improve the likelihood of parent-implementation.

Conclusions: Some barriers to accessing autism interventions are similar to what is observed in Western populations, while others are unique to this culture. The magnitude of such challenges is overwhelming for these families. It is our hope that, by training parents as therapists in culturally appropriate ways, barriers to access will be overcome. Upon completing the project, the adapted program will be available for implementation nationwide to communities or families with few resources in Taiwan. The full study is ongoing and completion is expected by February 2014. Preliminary findings and specific cultural adaptations will be discussed.