Differences in Meaning of Quality of Life and Inner Strength in Families with and without Young Adults with Spina Bifida

The purpose of this study was to describe the perceptions of Quality of Life (QOL) and evidence of Inner Strength in families. This research is a component of a large mixed method, multi-site study in the United States on improving health outcomes for families with adolescents with spina bifida (SB). The larger study investigated adaptation in families with adolescents and young adults (AYA) with and without spina bifida (SB). Families (N=198), (parent and AYA) completed telephone interviews with QOL questions. Participants included parents with AYA with SB (54%) and without (46%). The parents were primarily female (94%) and Caucasian (86%). The mean age of the adolescent was 15.2 years. Content analysis was conducted. Concepts included perceptions of the meaning of QOL for the family. Parents with AYA with SB more frequently described happiness, being able to do meaningful activities, and enjoying life as components of QOL. Parents of AYA without SB described friendship and need for time more frequently than those with AYA with condition. Differences were not seen in terms of togetherness, enjoyment, support, finances, independence or work in parent perceptions of QOL. AYA with spina bifida reported happiness as making up QOL, yet AYA without SB more frequently reported happiness, friendship and getting along as components of QOL. Differences between groups of AYA were not seen in terms of health or time for togetherness as making up QOL. Differences between individual and family meaning of QOL emerged for the parent, not AYA. Two dimensions of inner strength were found in the meaning of QOL, connectedness and movement (activity). Meaningful activities were important to parents with AYA with SB while connectedness (good relationships) was more frequently described by parents without SB. When activities were discussed, individuals described physical activities such as sports and exercise. Study results can assist providers to focus support on enhancing family strengths important to parents and adolescents.  The findings emphasize the need for comprehensive interdisciplinary teams to promote meaningful activities for AYA with SB while enhancing their ability to develop good relationships to build inner strength. Understanding what makes up QOL helps clinicians focus on what is important for families. Future cost-effective, quality healthcare innovations should include strategies for the health and QOL of families and adolescents.