Asian immigrant parents' perceived parental role and role enactment while accessing and using health and education services for their child with developmental disabilities in the United States
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Asian immigrants are the fastest growing immigrant population in the United States. The literature documents that Asian immigrant parents of children with developmental disabilities (DD) face additional barriers when they access and utilize services in the United States, compared to U.S.-born parents. However, we have a limited understanding of how they respond to these barriers and what they want to achieve while supporting their child with DD, especially when their children transition from high school to adulthood. While there are some studies about Asian immigrant parents of children with DD, these studies singularly attribute barriers to cultural differences between Asian immigrant parents’ cultural backgrounds and the mainstream American culture. Furthermore, previous research has only documented parents’ experiences at one time point, thus limiting the understanding of the potential influence of acculturation when Asian immigrant parents support their child with DD in the United States over time. To achieve the goal of this dissertation, which is to understand how and why Asian immigrant parents are involved in the lives of their child in relation to their acculturation process, I conducted two qualitative studies grounded in role theory and acculturation theory. In study 1, I built on previous qualitative studies related to Asian immigrant parents’ experiences while accessing and utilizing services for their child with DD by conducting a meta-synthesis. I identified 11 qualitative studies for analysis, and examined these studies using a constant comparative approach and thematic analysis. Based on the analysis, I proposed a theoretical framework to describe parents’ role enactment as an evolving process influenced by acculturation that spirals them towards their ultimate parental goal of helping their child with DD thrive and live happily. The framework also describes how system factors are intertwined with parents’ individual factors to facilitate or impede their role enactment. In study 2, to address the lack of understanding of how Asian immigrant parents’ experiences while supporting their child with DD transition to adulthood, I conducted a narrative study with five Chinese-speaking immigrant parents whose children with DD were between 20 and 34 years old. Parents participated in a sequence of three, in-depth narrative interviews to share stories about how they perceived and enacted their parental role while supporting their child’s transition to adulthood. I used the listening guide to systematically analyze the data. Participants’ described their perceived parental role as helping their young adult child with DD live a happy and meaningful life. This role included two role facets: helping their child develop independent living skills and planning for their child’s adult life. Parents’ narratives revealed that their role enactment was not only influenced by their lifeworlds, but that parents could also actively shape their lifeworlds. Parents’ perceptions about their capacities to shape their lifewolds varied. Some parents were more empowered to change their lifeworlds, while other parents tended to adjust to their lifeworld. Parents’ cumulative interactions with American society gradually shaped how they framed their experiences of role enactment and the way they enacted their parental role. Parents felt it was “just harder” for them to enact their parental role as immigrants. Despite this, parents’ perceived the societal attitudes towards disability in American society positively influenced their role enactment and made them feel that the United States could be home for their family. Together, these two studies highlighted that parents’ role enactment is a dynamic temporal process, which is influenced by their cumulative interactions with components in their lifeworlds. Although Asian immigrant parents experience unique challenges related to their status as immigrants while enacting their parental role, they demonstrated resilience in the face of these challenges. The findings of this dissertation can inform researchers’ and practitioners’ understandings of how to develop parent interventions for Asian immigrant parents to help their child thrive and live happily and how to create a culturally safe environment to facilitate realization of their desired role.