Abstract
The primary goal of this study was to understand the subjective impact of a diagnosis of Simple Bone Cyst on children with regards to activity participation and psychosocial development. We aimed to explore the concepts of labeling, embodiment and activity participation to understand the impact of SBC.
This was a qualitative study. Ten children between the ages of 4 and 17 years with SBC and their families participated in semi-structured interviews related to activity participation, social interactions and psychological impact of SBC. Interview questions were derived from psychology, sociology and philosophy literatures pertaining to illness and activity, sense of embodiment, self-concept and interactions with the social environment. Interviews were transcribed and analyzed using thematic analysis.
First, children and families view SBC as an injury more than an illness and did not experience labeling or significant changes in embodiment. Second, SBCs cause anxiety in children related fear of fracture or pain, however normal function and activity participation were maintained. Third, there were significant shortcomings identified in the communication and the decision-making process between families and physicians regarding SBC management.
SBC as a benign disease does not neatly fit into the category of illness or injury based on children's experiences. Children who previously perceived themselves as normal feel different and not normal following diagnosis with SBC. The experience of parents is largely one of anxiety, and much of that anxiety is derived from the uncertainty over the treatment plans for their child.
The proposed framework of normality allows for the more temporary and fluid changes in perception experienced by the children in our study. The results of this study suggest that the current decision-making process in SBC is unsatisfactory leading to anxiety and worry. Parents felt pressure to make decisions regarding surgery without feeling that they sufficient information. Though understanding how children experience SBCs and how parents experience the treatment course of their child with SBC, we can shared decision-making as a potential way to reduce parents' anxiety and limit negative experience in children.
