“the Doctor Said ‘Google It’ …”: Exploring African-American Caregiver’s Help-Seeking for Their Child with Autism

Background: A large body of literature suggests that differences exist in service access for racial and ethnic minorities with autism spectrum disorder (ASD)¹ which are not accounted for by actual differences in need for services. Additional studies identify that parental beliefs, knowledge, and expectations may influence help-seeking among African-American (AA) caregivers. Understanding the reasons for differences in care from the perspective of AA caregivers is necessary prior to developing effective solutions to address differences in service access.

Objectives: The purpose of this study was to qualitatively identify AA caregiver beliefs, knowledge, and expectations that impact help-seeking, and the specific help-seeking steps caregivers used to obtain care for their children with ASD.

Methods: We used grounded theory methodology² with semi-structured interviews to ascertain how and why AA caregivers sought and obtained services from the time prior to diagnosis to the present. Beliefs and knowledge were probed, as were both formal and informal help-seeking. Purposive and snowball sampling was used to obtain a sample of caregivers of children with ASD. Inclusion criteria required caregivers to be self-identified AA adults with a primary caregiver role (>50% time spent caring for child) of a child with autism. A child’s autism classification was identified by the investigator in either a medical or educational report provided by the caregiver. Additional sources of data included field notes and a follow up focus group to engage caregivers in member-checking discussion. Qualitative analysis occurred during the course of data collection and involved hand coding for beliefs, knowledge, and expectations reported during help-seeking actions. MaxQDA software was used to organize coding schemes.

Results: Demographic caregiver characteristics are presented (Table 1). Preliminary themes from the analysis include: “Just don’t know/just didn’t know…” (importance of knowledge in taking action); “[the doctor] told me to Google it” (impact of ‘trusting’ in providers on help seeking); the reliance on ‘mother intuition’ about their child which influenced help seeking; and the importance of others during the process (“they actually know what you go through”). Caregiver’s knowledge acquisition was obtained primarily through lay and internet “network of others”; in contrast, caregivers reported asking for information from medical and education providers and not receiving the desired guidance.

Conclusions: Despite extensive literature discussing racial and ethnic disparities in access to services, little progress has been made to address culturally-relevant approaches to meet AA caregiver’s needs for service and supports. Although findings are not widely generalizable due the qualitative nature of this study conducted in single southern U.S. state, important lessons for future research and provision of services include: helping parents connect with other parents is essential; the provision of 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 to identify preferred methods for receiving information. System interventions indicated include: provider training to facilitate care pathways, easily searchable and readable community level resources, & increasing parent advocacy skills.