Date Presented 04/05/19
Primary Author and Speaker: Hannah Burke
Additional Authors and Speakers: Sarah Smith
PURPOSE: Health and developmental child outcomes are dependent on overall family health. Families raising children with autism spectrum disorder (ASD) are at risk for decreased family health due to chronic and intense everyday demands. Understanding health promoting factors and processes for families raising a child with ASD is critical in order to provide effective occupational therapy services that not only support child development but also encourage growth in the context in which that development occurs. Therefore, the purpose of this study is to examine families’ experiences of everyday family health as well as factors and processes that contribute to robust family health. The research questions are: 1) what is the experience of family health for families raising children with ASD; 2) what factors and/or processes support robust family health for families raising children with ASD.
DESIGN: Researchers used grounded theory approaches to guide the qualitative research process. Researchers recruited participants using convenience sampling via posted fliers, social media, and professional contacts. Inclusion criteria were families a) with at least one child ages birth-17 years of age; b) with at least one child with ASD who was living in the home full time; and c) who spoke English. Exclusion criteria were: child was not living in the home, and ASD was not the primary diagnosis of the child.
METHOD: Researchers collected data via an in-person interview with 16 families (n=38). All family members were present to the extent possible. Interviews were audiorecorded and transcribed verbatim. Two researchers analyzed data first by independently coding transcripts and then meeting together to reach consensus. Researchers merged codes into categories that are emerging into final themes reflecting the processes and factors supporting robust family health and families’ experiences of everyday family health. Researchers are generating a model of family health based on these themes.
RESULTS: Preliminary analyses suggest families experienced everyday family health as a journey marked by a pull between individual member needs and whole family needs and a connectedness that transcended everyday struggle. Supporting this journey were processes of reflection and reframing. Families sought balance between scheduled and unscheduled time. Families reflected a continuum of everyday family life from stability to chaos. Families described the critical influence of external support systems including family, social, and therapeutic resources to support robust family health and parent mental health. Family health clearly related to the performance patterns families expressed around the influence of ASD in the family. For some families, the demands related to ASD were central to family routines, role enactment, and habits. While other families chose to be mindful of ASD related needs but not centralize performance patterns around ASD.
CONCLUSION: Preliminary findings suggest families experience health as a journey with cycles of progress and setbacks. Families consistently articulated health as a sense of connectedness, stability, and mindfulness of both individual needs and whole family needs within everyday family life. External support systems were the most articulated critical factor in promoting robust family health especially to empower parents to understand their child with ASD as well as to facilitate parent mental health.
IMPACT STATEMENT: Findings suggest practitioners could provide services that address ASD's influence on family performance patterns in order to optimize health for both the child and family. Supporting knowledge of the influence of ASD on family routines, habits and roles within family life has potential to improve therapy outcomes.
References
Bagatell, N., & Mason, A. E. (2015). Looking backward, thinking forward: Occupational therapy and autism spectrum disorders. OTJR : Occupation, Participation and Health, 35(1), 34-41. doi:10.1177/1539449214557795
Boyd, B. A., McCarty, C. H., & Sethi, C. (2014). Families of children with autism: A synthesis of family routines literature. Journal of Occupational Science, 21(3), 322-333. doi:10.1080/14427591.2014.908816
DeGrace, B. W., Hoffman, C., Hutson, T. L., & Kolobe, T. H. (2014). Families’ experiences and occupations following the diagnosis of autism. Journal of Occupational Science, 21(3), 309-321. doi:10.1080/14427591.2014.923366
