Stress, Coping, Stigma and Acculturation in Arab American Caregivers of Children with Autism Spectrum Disorder

Background:  Few studies have examined stress and coping in caregivers from minority ethnic or cultural groups raising children with an Autism Spectrum Disorder (ASD), such as caregivers in the Arab American community. The Arab American community is one of the fastest growing, yet least studied ethnic communities in the U.S. (Al Khateeb, Al Hadidi, & Al Khatib, 2014). An estimated 23,000 Arab American children in the U.S. live with a disability, however no research has focused specifically on ASD in this population.

Objectives:  The current study aims to examine acculturation, stigma, stress and coping among Arab American caregivers caring for a child with ASD.

Methods:  Arab American caregivers of children with ASD participated in this study. Participants completed a set of online questionnaires about their experience caring for their child with ASD, including: Family Stress and Coping Interview (Nachshen, Woodford, & Minnes, 2003), Brief COPE (Carver, 1997), Sources of Social Support Scale (Carver, 2006), The Support Questionnaire (Tehee, Honan, & Hevey, 2009), Adapted Perceived Stigma Scale (Mickelson, Wroble, & Helgeson, 1999; Rosenblum-Fishman, 2013), and The Male Arab American Acculturation Scale (Barry, 2005). Some participants participated in a follow-up phone interview to elaborate upon the stressors and support systems that they indicated on their survey responses.

Results:  Data collection is currently underway, and by May 2017, we expect to have approximately 30 participants. Preliminary descriptive data is presented based on the eight participants who have completed the study to date. All respondents were mothers and seven were first generation immigrants (years in home country M=17.14, SD=9.18). Six children were male, and their mean age was 8.25 years (SD=4.08). Autism Society/Disability Organizations were the highest rated formal support systems. Caregivers reported a moderate level of support from their spouses (M=32.67, SD=12.13, Range = 10-50) and moderate to low levels of perceived stigma (M=21.88, SD =2.64, Range = 8-40). In regard to acculturation, caregivers endorsed greater levels of Assimilation over Separation (M=12.38, SD=3.93, Range = 7-28) and greater levels of Integration over Marginalization (M=21.88, SD=5.22, Range = 7-28). With the complete dataset, correlation analyses will be utilized to examine the relationships among perceived stigma, support, stress and coping variables in the sample. We expect to find a negative relationship between stress and positive coping, between perceived stigma and positive coping, and between acculturation and perceived stigma, along with a positive relationship between perceived stigma and stress. Qualitative data from the interviews will be analyzed using a grounded theory approach (Strauss & Corbin, 2008). General themes emerging from the qualitative interviews, to date, are insurance related obstacles and issues navigating school-based services.

Conclusions:  Findings from this study will be discussed in the context of their implications for practice and future research. As such, results of this study have the potential to increase clinicians’ awareness and cultural responsiveness in order to support Arab American families of children with ASD. Furthermore, results from this study will contribute to the development of culturally-sensitive interventions and advocacy programs designed to directly target the specific needs of this community.