Information sharing networks of maternal caregivers for children with autism spectrum disorders

Abstract

The role of social support in the lives of the 16.8 million caregivers for children with special needs in the U.S. is not adequately understood. Many studies have explored seeking health information online, but failed to consider information exchanged through social networks (i.e., family, friends, colleagues, neighbors, etc.). Caregivers of children with special needs spend on average 30 hours per week providing such care. The burden of caregiving can negatively affect caregivers physically, mentally and emotionally, socially, and financially. Social support is one potential mediator for the effects of caregiver burden. The objective of this study was to explore the flow of four dimensions of social support within the social networks of maternal caregivers for children diagnosed with an autism spectrum disorder (ASD). A convenience sample was gathered via electronic distribution lists for Indiana parents of children with special needs. Participants could elect to complete a face-to-face interview or an anonymous online survey. The typical participant was Caucasian, married, college-educated, and located in Central Indiana. Respondent social networks are composed of multiplex relations, indicating strong ties. Significant correlations were found for participant age, child age, and the age of diagnosis, and network members for various networks. Specifically, a later age of child diagnosis is associated with fewer network members for the caregiver. Correlational analyses between dimensions of social support and network characteristics suggest options for further study. Overall, the results of this exploratory study are inconclusive, but can provide direction for future research.