Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review.

Parents of children with autism spectrum disorder (ASD) are often at greater risk of experiencing stress and lower quality of life, in comparison to parents of typically developing (TD) children and other developmental disabilities. Despite vast literature on parental experiences in Western countries, little is known about this topic in Eastern Europe. Thus, we aimed to map studies that addressed parental experiences of children with ASD in Eastern Europe using the Double ABCX theoretical framework. The Double ABCX Model of family adaptation describes how families responds to stressors over time, based on the intercorrelation of available resources, coping mechanisms and appraisal of stressors. Following a scoping review methodological framework, we conducted a comprehensive search of three databases. We ultimately included 15 peer-reviewed studies in the review. Within each study, we examined Double ABCX Model factors. The studies were conducted in nine Eastern European countries and included parents of children and adults with ASD. Consistent with studies conducted in Western countries, parents of children with ASD expressed more personal and family challenges and greater maladaptation compared to parents of TD children. Moreover, families reported lower satisfaction with quality of life and more health problems. The small number of included papers from nine countries suggests that parental experiences of children with ASD in Eastern Europe are overlooked in the literature. Future research should explore findings from this review that differed from the Western literature, including contributing factors to parental adaption in families in Eastern Europe.

Brief Report: Participation of Black and African-American Families in Autism Research.

Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.