Family members' experience of well‐being as racial/ethnic minorities raising a child with a neurodevelopmental disorder: A qualitative meta‐synthesis

Abstract

Raising a child with a neurodevelopmental disorder has often been associated with poorer quality of life and family functioning. Yet, many family members describe themselves as resilient and capable of achieving well-being. Whether and how this occurs in racial/ethnic minority families remains largely unexplored. The aim of this study was to systematically synthesize qualitative studies exploring how families from a racial/ethnic minority background in the United States (1) experienced wellbeing and (2) responded to challenges they faced while caring for a child diagnosed with three selected neurodevelopmental disorders: autism spectrum disorder, attention deficit hyperactivity disorder, and intellectual disability. A systematic literature search was conducted in November and December of 2019 and updated in October 2021. Three themes were developed based on included studies: "moving toward well-being as a caregiver," "family and culture: impact on well-being," and "community and culture: impact on well-being." The findings in this review indicate that to develop well-being, racial/ethnic minority families faced additional barriers, including racial/ethnic discrimination and stigma within their family and cultural community. The knowledge generated has the potential to identify areas of intervention to promote resilience and well-being in racial/ethnic minority families raising a child with a neurodevelopmental disorder.

Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race

“…Previous research, though, has examined racial barriers for other populations with intellectual or developmental disabilities. One study examined families from different racial/ethnic minority backgrounds who had a loved one with autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), or intellectual disability (Emmanuel et al, 2022). While white and racial/ ethnic minority families raising a child with ASD or ADHD showed some similarities in experiencing wellbeing as caregivers, racial/ethnic minority families faced additional barriers including racial discrimination, smaller support network, and more severe stigma within the family and community (Emmanuel et al, 2022).…”

“…One study examined families from different racial/ethnic minority backgrounds who had a loved one with autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), or intellectual disability (Emmanuel et al, 2022). While white and racial/ ethnic minority families raising a child with ASD or ADHD showed some similarities in experiencing wellbeing as caregivers, racial/ethnic minority families faced additional barriers including racial discrimination, smaller support network, and more severe stigma within the family and community (Emmanuel et al, 2022). Another study identified a sense of distrust among Black adults with intellectual or developmental disabilities toward their healthcare providers (Li et al, 2021).…”