Date Presented 03/28/20
In this descriptive qualitative study, 42 families raising children with and without disabilities or chronic health conditions shared the family occupations that promoted family connection and identity. Findings include family occupation types and attributes and examine the similarities and differences among family groups. These data offer valuable practice considerations that transcend decontextualized, individualistic recommendations in order to prioritize family participation needs.
Primary Author and Speaker: Sarah Smith
Additional Authors and Speakers: Amanda Melanson
PURPOSE: Family occupations have the potential to support family connectedness and cultivate family identity, identified factors promoting family health (Smith et al., 2017). Unknown are what occupations families identify participation in that promote connection and how these occupations might be experienced differently by families raising children with and without disabilities and chronic conditions needed to inform practice. This study aims to examine family occupations that promote family connection and exemplify family identity for families raising children with and without disabilities or health conditions. The research questions are: 1) what occupations do families identify participating in that promote family connection and identity?, 2) what areas of occupation and environmental attributes do these occupations reflect?, and 3) how do family occupation attributes compare between families raising a child with and without disabilities or chronic health conditions?
DESIGN: Researchers used a descriptive qualitative design. Convenience sampling was used to recruit families via social media, email, and posted flyers. Inclusion criteria were English-speaking families with at least one child either typically developing or with a chronic health condition or disability living in the home.
METHOD: Researchers collected data via an in-person semi-structured interview with 42 families (n=152) with all family members present to the extent possible. Fifteen families with a typically developing child, 16 families with a child with autism spectrum disorder (ASD), and 11 families with a child with a disability or chronic condition (non-ASD) participated. Interviews were audiorecorded and transcribed verbatim. Two researchers analyzed data by: 1) logging all family occupations; 2) independently coding each occupation by area of occupation, environment, and familiarity; 3) discussing codes to reach final consensus; and 4) calculating frequencies and averages to compare findings across family groups. One occupation could reflect many attributes depending on the family-identified context.
RESULTS: Families identified 389 occupations. Family mealtimes and vacations were the most frequently reported occupation affording connection and identity. Family occupations overwhelmingly reflected social participation (83%) and leisure (69%) and occurred in familiar settings (79%). Participation in instrumental activities of daily living differed between groups reflecting 18% of occupations for families with typically developing children (T), 9% for children with disabilities (D), and 5% for children with ASD (A). Families reported similar indoor (48% T, 48% D, and 52% A) and outdoor (57% T, 54% D, 52% A) occupations. Differences existed in the frequency of family occupations occurring in community settings (57% T, 65% D, 75% A) and home settings (28% T, 34% D, 24% A). The lowest occurring attribute across families was novelty (average 22%).
CONCLUSION: Family-identified occupations promoting connection and identity occurred primarily within social participation and leisure occupations and in familiar contexts raising concern for therapy recommendations that may obligate and individualize a child’s occupations outside of the family context. Families raising a child with or without a chronic condition or disability shared many occupation attributes suggesting that family occupations that enact identity may transcend a child’s personal disability factors.
IMPACT: Findings provide knowledge of family occupations that facilitate connection for families raising children with and without disabilities. Practitioners can use this knowledge to inform recommendations that transcend beyond an individualistic child focus in order to prioritize family participation needs.
References
Axelsson, A.K., Granlund, M., & Wilder, J. (2013). Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Child: Care, Health, & Development, 39(4), 523-534. doi: 10.1111/cch.12044
Smith, S.L., DeGrace, B., Ciro, C., Bax, A., Hambrick, A., James, J., & Evans, A. (2017). Exploring families’ experiences of health: Contributions to a model of family health. Psychology, Health & Medicine, 22(10), 1239-1247. doi:10.1080/13548506.2017.1319069
