The many layers of social support: capturing the voices of young people with spina bifida and their parents

Abstract

Young people with physical disabilities experience greater difficulty than their able-bodied peers in many psychosocial domains as they transition toward adulthood. However, firsthand knowledge of the dimensions of social support that young people with physical disabilities find useful during this stage is lacking. This qualitative study involved 50 participants (21 youths with spina bifida and 29 parents) and focused on gaining an insider's perspective on the nature of social support. Building on the work of LaGreca, themes were mapped into four broad support domains: tangible, information, companionship/belonging/mutuality, and emotional. This research indicates that parents provide substantial all-purpose support in each of the four domains. A second major finding shows that support from peers and friends follows a unique and varied path with distinctive characteristics related to the realities of living with a disability. Implications for social work practice with targeted populations and systems are considered.