Corrigendum to Exploring the health of families with a child with autism

Smith, S. L., & McQuade, H. B. (2021). Exploring the health of families with a child with autism. Autism. DOI: 10.1177/1362361320986354

The following edits have been requested (bolded text) to provide more clarity about how the interview data for this article was collected. To ensure transparency the section in which each edit appears has been reproduced in this corrigendum notice. The online version and all subsequent versions of this article will include these edits. The authors clarify that the purpose of the study was to listen to the perspectives and voices of all family members about their family unit, including the voices of autistic children. The interview was not about the child with autism. Interview questions related to the family as a unit and their collective health experiences. Some family members talked about each other during the interview in a casual family dialogue style. However, the interviewers did not talk with parents about autistic children when the child was present. Quotes published in this study that reflect parent comments about children with autism were shared by parents who chose not to include their children in the interviews; their children were not present for the interview.

Abstract

Families provide a critical context for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can flourish. For families raising a child with autism, the chronic, intense nature of everyday life affects family health in part due to increased parental stress and potential centralization of the child with autism in family functioning. The present study sought to understand how families of children with autism perceived and experienced their own family health and to identify what factors and processes families identified as contributing to their health. Researchers conducted semi-structured interviews with 16 families with a child with autism ages 2-17. Interviews occurred in person and with all members present to the extent possible based on parental and child choice. Sixteen mothers, eight fathers, and 35 children (18 with autism) participated. Interviews were about the family as a unit and conducted in a casual dialogue style. Interviews were audiorecorded and transcribed verbatim. Researchers analyzed data using inductive content analyses to generate results. Findings suggest families experience family health as a journey grounded within family identity and marked by five themes: connection, balance, the centralization of autism, stress, and support systems. Findings contribute important considerations for service providers working to support children with autism and their families.

Lay Abstract

Families are important for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can blossom. Families with a child with autism have a family life that has challenges for many reasons including that parents can be stressed from trying to figure out how to be a good parent for their child with autism. We wanted to know two things: (1) what is family health for families of a child with autism and (2) what affects families trying to be their healthiest. We wanted to know the answers to these questions from families themselves, including parents (not just moms), children, and children with autism, because they are the best experts. We talked to 16 families including 16 mothers, 8 fathers, and 32 children (18 with autism). Families shared that being a healthy family was a journey with ups and downs and that families were not always perfect. It helped when families knew about themselves as a family such as knowing what they liked and did not like to do, and knowing what the different people in the family needed. Families said that what helped and influenced their family’s health was being together, keeping their days not too busy, stress, autism itself, having helpers like friends, grandparents, therapists, and having money to pay for services. We hope that knowing these answers will guide service providers of people with autism to think about healthy families from a holistic perspective.

Methods

Data Collection

Both parents and children were present to the extent possible in order to obtain a full family perspective inclusive of all parent and children’s voices. Some parents chose not to include their children. For those who did, researchers ensured family members participated in a conversation about the family unit as a whole and, in consideration of ethical boundaries, did not discuss characteristics of or concerns about individual family members. Interviews followed a semi-structured format with questions about the family as a unit that were intentionally designed to encourage open-ended reflective answers about families lived experiences and based on previous family health research (See Appendix I for interview questions; Smith et al., 2017).