African-American Caregivers’ Perceptions of Care Needs Affecting Access to Services for Their Children With Autism

PURPOSE: A large body of literature suggests that differences exist in service access, including therapy services, for people with autism spectrum disorder (ASD) in racial and ethnic minority groups (Mandell et al., 2009) and that these differences are not accounted for by differences in need for services. Additional studies have identified that parent beliefs, knowledge, and expectations may influence service help seeking and that actions differ among African-American caregivers (Murry et al., 2011). No known published studies have been undertaken to understand the reasons for differences in care from the perspective of African-American caregivers. The purpose of this study was to qualitatively identify caregiver beliefs, knowledge, and expectations that affect help seeking and the specific help-seeking steps caregivers use to obtain care for their children with ASD.

METHOD: Grounded theory methodology (Charmaz, 2006) defined the qualitative methods used to design the study. Purposive and snowball sampling was used to obtain a sample of 10 primary caregivers (>50% time spent in the caregiving role) of a child with ASD until saturation. All caregivers self-identified as African-American. Semistructured interviews were conducted to ascertain how and why caregivers sought and obtained services from the time before diagnosis to the present. Beliefs and knowledge were probed, as were both formal and informal help seeking. Thus, any help seeking (e.g., obtaining information from lay networks or Internet) was ascertained.

Interviews were audio recorded and transcribed verbatim. A note taker at each interview documented caregivers’ nonverbal interactions, the setting, and the interaction between the research team and the caregiver. Additional sources of data included field notes and a follow-up focus group to engage caregivers in member checking. Qualitative analysis occurred during the course of data collection and involved hand coding for beliefs, knowledge, and expectations. Coding involved three occupational therapists, a social worker, and a public health professional, all with experience and knowledge in working with people with autism or qualitative methods

RESULTS: Analysis of the interviews is ongoing. Preliminary themes from the iterative analysis include the importance of mothers talking to mothers about services and supports, feeling alone in the process of seeking help, the limited role that providers (e.g., occupational therapists) played in connecting parents to services, and conflicting reliance on “mother’s intuition” about their child that resulted in both positive and negative influences on service receipt. Knowledge acquisition was primarily through lay and Internet networks, and poorly resourced families discussed fewer help-seeking steps than more resourced families.

CONCLUSION: Therapists aim to provide culturally relevant, evidence-based interventions. Our results suggest that provider-driven approaches of educating parents about services or supports may not necessarily align with African-American caregiver’s preferred methods of receiving service supports.

IMPACT STATEMENT: Although findings are not widely generalizable due the qualitative nature of this study conducted in GA, important lessons for therapists include: helping parents connect with other parents is essential, providing resources regarding decision-making needs to be balanced by parent’s reliance on ‘intuition’ about providers and services, and future work to improve help-seeking and reducing disparities should involve caregivers in all aspects of planning and implementation. .

References

1. Mandell, D. S., Wiggins, L. D., Carpenter, L. A., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493–498. https://doi.org/10.2105/AJPH.2007.131243

Murry, V. M., Heflinger, C.A., Suiter, S. V, Brody, G. H. (2011). Examining perceptions about mental health care and help-seeking among rural African American families of adolescents. Journal of Youth and Adolescence, 40, 1118–1131https://doi.org/10.1007/s10964-010-9627-1

Charmaz, K. (2006).Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.https://doi.org/10.2105/AJPH.2007.131243