An Examination of How Individuals Manage Uncertainty Around Scoliosis

Adolescent idiopathic scoliosis (AIS), affecting approximately one in every 25 children, presents significant lifelong physical and psychosocial challenges. However, a systematic understanding of the sources of this uncertainty and how individuals communicatively navigate it is lacking. Thus, this qualitative study applied uncertainty management theory (UMT) to examine participants' uncertainty associated with scoliosis. The investigation identified key sources of uncertainty (medical, financial, social, and career) and management strategies through semi-structured interviews with 21 individuals diagnosed with scoliosis in adolescence. Participants appraised their uncertainty as either negative or neutral. In alignment with how they appraised their uncertainty, some interviewees sought to reduce uncertainty by seeking social support and by disclosing or concealing their illness. Others maintained uncertainty by avoiding medical information (or by being told to wait and see about their disease progression), and some adapted to their uncertainty by reframing or engaging in self-care or religion. The results highlight the need for greater medical, psychological, and social support for those diagnosed with scoliosis and highlight the importance of developing tailored uncertainty management strategies to improve patients' quality of life.