Experiences of Minority Caregivers of Youth With Autism Spectrum Disorder

PURPOSE: The purpose of this study was to investigate the experiences of minority caregivers of children with autism spectrum disorder (ASD) by analyzing the relationship between affiliate stigma, informal support, caregiver burden, and quality of life. There is a paucity of research on minority caregivers of children with ASD—particularly in the United States—who experience a multitude of barriers to service and psychosocial health (Blanche et al., 2015; Cole et al., 2017; Khanna et al., 2011; Lovell & Wetherell, 2019). This study aimed to bridge this gap to better inform occupational therapy services provided to this caregiver population.

DESIGN: A correlational survey study was conducted to explore the relationships between the four variables as they relate to the target caregiver population. Participants were recruited via convenience sampling, including professional and social networks, and online support forums. Participants were required to be caregivers to children or adolescents with ASD and identify as non-white.

METHOD: The survey consisted of demographic questions and the four measures: The WHOQOL-BREF, The Affiliate Stigma Scale (ASS), The Multidimensional Scale of Perceived Social Support (MSPSS), and The Burden Scale for Family Caregivers (BSFC). Using SPSS-27, descriptive statistics and frequency analysis were acquired to summarize participants’ demographic information, while Spearman’s rho correlation coefficient examined the correlations between the four variables.

RESULTS: Although recruitment is still ongoing, twenty-four participants have completed the survey. Spearman’s rho correlation coefficient identified moderate to strong correlations between the study variables. There was a statistically significant positive correlation between caregiver burden and the affiliate stigma affect subscale (r = .80, p<.05), behavioral subscale (r = .65, p<.05), cognition subscale (r = .73, p<.05), and total score, (r = .80, p<.05). The affiliate stigma total score was also significantly and negatively correlated with the participants’ relationship status (r = -.50, p<.05), and the WHOQOL-BREF environment domain (r = -.57, p<.05). The physical health WHOQOL-BREF domain and caregiver burden had a negative correlation that approached significance (r = -.45, p = .07). In contrast, caregiver burden had a significantly negative correlation with the WHOQOL-BREF psychological (r = -.48, p<.05), social relationships, (r = -.59, p<.05), and environment domains (r = -.54, p<.05). Although there was a trend towards a negative correlation, there were no statistically significant results between social support and affiliate stigma or caregiver burden.

CONCLUSION: The study informs occupational therapists about the experiences of minority caregivers of children with ASD in the U.S., which is lacking in the current literature. The results reveal the importance of the environment in the experiences and quality of life of this participant population. Future research with a larger sample size of minority caregivers across the United States or worldwide would provide further support on the relationships discovered in this study and whether cultural differences or factors exist. Occupational therapists can assist these minority caregivers with modifying both the social and physical environment, both of which may help mitigate the negative impact of burden and affiliate stigma. Advocacy efforts to address societal stigma, coping strategies, support groups, and resources may, therefore, benefit minority caregivers of children with ASD and improve their overall quality of life.

References

Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. American Journal of Occupational Therapy, 69(5), 6905185010. https://doi.org/10.5014/ajot.2015.017848

Cole, Laura, Kharwa, Yasmin, Khumalo, Nomfundo, Reinke, Jennifer S, & Karrim, Saira B. S. (2017). Caregivers of School-aged Children with Autism: Social Media as a Source of Support. Journal of Child and Family Studies, 26(12), 3464–3475. https://doi.org/10.1007/s10826-017-0855-9

Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1228. https://doi.org/10.1007/s10803-010-1140-6

Lovell, B., & Wetherell, M. A. (2019). Affiliate stigma, perceived social support and perceived stress in caregivers of children with autism spectrum disorder: A multiple mediation study. Archives of Psychiatric Nursing, 33, 31–35.