Experiences of children and adolescents living with multiple sclerosis

About 5% of people with multiple sclerosis (MS) are diagnosed before age 18. Because pediatric MS is uncommon, little is known about the experiences of children and adolescents living with MS. The purpose of this qualitative study was to learn from these youth what it is like to live with the diagnosis of MS. Twelve patients with clinically definite MS between the ages of 8 and 18 years were interviewed. Initially, they were unfamiliar with MS and had a multitude of feelings about the diagnosis. Over time, they adapted to the temporary or permanent effects and incorporated changes caused by MS into their lives. Most described participation in social and recreational activities typical of their age group. Although they recognized their lives were different because they had MS, in many ways they felt unchanged. Most noted positive and negative changes in their relationships. They described common stressors unique to having MS that made life more challenging, but they used diverse coping strategies to address these stressors. They expressed the need to move forward with life and identified hopes and plans for the future. MS contributed to shaping their self-identities, but their disease remained only one component of who they were. The findings of this study provide a greater understanding of the experiences and views of youth with MS and offer guidance for nurses to enhance care.