Date Presented 04/05/19
This phenomenological study explored and illuminated the experiences and meaning of social participation in families raising a young child with autism. Ten families were recruited and interviewed. Phenomenological analyses revealed that family experiences and meaning related to social participation included 1) divide and conquer, 2) occupation in isolation, and 3) pausing to reset engagement. Results suggest impoverished family occupation of social participation begins in early childhood.
Additional Authors and Speakers: Beth DeGrace
Primary Author and Speaker: Julie Smith
BACKGROUND: Evidence indicates children with autism spectrum disorder experience limited social participation, and evidence suggests social challenges endure into adulthood. While no study to date has investigated the underlying experience of family social participation, the literature points to social isolation of families in response to the difficulties of their child with autism. Understanding family experiences of social participation is critical to family health and wellbeing along with the design of targeted interventions, which can only be accomplished through qualitative methods, specifically phenomenology.
PURPOSE: The specific aim of this study were to comprehensively explore the experiences and meaning of social participation in families raising a young child with autism focusing on two central research questions: 1) How does a family raising a young child with autism experience social participation? and 2) What meaning does the family ascribe to their experiences of social participation? The objective was to describe the essence or meaning of the common experiences for all families as a whole.
DESIGN: This study used phenomenological methods as described by Moustakas (1994) and included epoche, phenomenological reduction, imaginative variation and synthesis. A team of 4 analysts contributed to data analyses. Scientific rigor was ensured through deliberate methods of triangulation, peer debriefing, member checks, audit trails and rich thick description.
RESULTS: Ten families participated in indepth interviewing exploring the phenomenon of social participation. Results of the phenomenological analyses revealed core family experiences including 1) divide and conquer, 2) occupation in isolation and 3) pausing to reset engagement. These results suggest that family social participation is not only minimal while raising young children with autism, but often results in feelings of isolation. Families expressed the need to pause and evaluate family goals in order to create deliberate opportunities for social participation.
IMPACT STATEMENT: While likely not new information for occupational therapy practitioners, this is the first study of its kind to specifically illuminate the experiences of family social participation. Family social participation, we argue, is an overlooked occupation and yet critical to child development. Additionally, social participation of adults with autism remains problematic and stems from childhood. Therefore this deep understanding reveals opportunities for therapists to work with families to promote multiple opportunities for social participation in the context of everyday life.
RELATION TO RESEARCH PRIORITY: This proposal relates to research priorities of family and caregiver needs, as social participation is an essential occupation and critical to the health and well being of families and caregivers. Additionally this proposal addresses the prevention of chronic conditions, the isolation that results from impoverished social participation, for individuals with autism.
References
Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262-275.
Davey, H., Imms, C., & Fossey, E. (2015). “Our child’s significant disability shapes our lives”: experiences of family social participation. Disability and Rehabilitation, 37(24), 2264-2271.
DeGrace, B. W. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58(5), 543-550.
Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(11), 2710-2719.
