The purpose of this study was to improve our understanding of uncertainty in Adolescent Idiopathic Scoliosis (AIS), which is a chronic illness involving curvature of the spine and is typically diagnosed in late childhood or early adolescence. The timing of most AIS diagnosis and its subsequent treatment occurs at a critical point developmentally and may place strain on adolescents with AIS and their parents. This dissertation includes two studies.
The first study used Cash's (2011) cognitive-behavioral perspective on body image as the framework to assess whether brace treatment had a negative impact on body image appraisals in female adolescents participating in a clinical trial. Contrary to previous studies, this study found that brace treatment did not have a negative impact on female adolescents' body image and that poor body image did not result in brace treatment non-adherence. However, this study found significant correlations in adolescents with AIS between poorer body image and poorer quality-of-life.
The second study used Uncertainty Management Theory as the framework for exploring adolescents' and parents' AIS-related uncertainties that were participating in online support groups. Results from this study suggest that adolescents with AIS and parents of a child with AIS are managing their uncertainties regarding the illness and its treatment however, the way they manage the uncertainty is different, in particular regarding appraisals of the uncertainties, whether they are seeking or avoiding information, and the types of social support that is being sought and provided. Parents of a child with AIS tended to seek information regarding the uncertainty surrounding the AIS condition, including information regarding doctors/hospitals and research, while adolescents tended to be participating in the online support groups for the purposes of seeking and providing support to other adolescents that have been or currently are in similar situations, such as wearing a brace. These findings are critical, because differences in uncertainty management behaviors between adolescents and parents, such as the ones that were found in the AIS-related online support group, could result in differences in understandings, concerns, preferences, and expectations regarding the illness and its treatments, which may result in family conflict, poor clinical health outcomes in adolescents and poor psychosocial outcomes in adolescents and in their parents.
This study is significant in that it explored AIS-related uncertainty in two entirely different settings where theoretical applications are rare, in a clinical trial and in online support groups. The results from this dissertation suggest that Uncertainty Management Theory and Cash's (2011) cognitive-behavioral perspective on body image may be adapted for these contexts. The synthesis of the findings from across this dissertation suggests that the clinical and psychosocial health outcomes of adolescents with AIS and the psychosocial outcomes of their parents, may be improved through communication tools, such as adolescents, their parents, and providers working together through a treatment decision flow chart to elicit AIS-related current understandings, concerns, preferences, and expectation, which will result in shared decisions. Finally, as new technologies expands and are integrated into decisions regarding illness, findings from this dissertation can be used to improve health communication, support interventions, and policy development.