Understanding stress in parents of children with autism spectrum disorder: a focus on under-represented families

Abstract

Objectives: Parents of children with autism spectrum disorder (ASD) report high levels of stress that can interfere with important child and family treatments. Limited past research considers how the caregiving experience and social determinants of health may contribute to treatment engagement and outcomes, particularly in underrepresented families, who already experience service and health disparities. We aimed to assess the experiences of caring for an individual with ASD, with specific emphasis on perceptions of stress.

Methods: Three key informant interviews were conducted with parents (n = 1) and providers (n = 2) of children with ASD to refine interview guide questions. Once questions were refined, four focus groups (n = 17) and one key informant interview were conducted with parents of children with ASD who were (a) non-white, (b) Spanish speakers, (c) of limited financial resources, and/or (d) living in rural counties. All participants lived in Western New York, with the majority residing in Rochester. Content analysis by two independent coders was used to identify and refine themes.

Results: Themes included: (a) caregiving for an individual with ASD can cause interference with family functioning, (b) misperceptions of ASD contribute to caregiver stress, (c) culture contributes to stressors for parents, and (d) service navigation difficulties are a significant source of stress. Suggestions for interventions to address parents stress included: modular and integrative treatments for multiple content areas, addressing cultural barriers to treatment engagement, and education on ASD to the community.

Conclusions: Parent-focused interventions for caregivers of children with ASD should specifically explore and address service and health disparities for parents, especially those predicated on race, ethnicity, rurality, and language of origin. Interventions should also be individualized to parent characteristics and experiences. In future research on parent training, the unique contributions of caregiver stress and other characteristics (e.g. race-related stress, geographic location) should be included as potential modifiers of treatment.

Keywords:

• autism spectrum disorder
• parenting
• caregivers
• parental stress
• caregiver stress

Acknowledgments

We thank the families who participated in this project. We are also grateful to the Children’s Institute and Gladys Pedraza-Burgos and her team at the IBERO-American Action League, for their support. Finally, we thank Amina Alio and Caryn Stark for their comments on earlier drafts of this manuscript.