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.
Questions or comments about this article may be directed to Jennifer R. Boyd, MHSc RN CNN(C) MSCN, by telephone at 416/813-7738 or by e-mail message at firstname.lastname@example.org. She is a clinical nurse specialist in neurology and is affiliated with the Pediatric Multiple Sclerosis Clinic at the Hospital for Sick Children, Toronto, Canada.
Lynn J. MacMillan, RN CNN(C) MSCN, is a neurology clinic nurse affiliated with the Pediatric Multiple Sclerosis Clinic at the Hospital for Sick Children, Toronto, Canada.
© 2005 American Association of Neuroscience Nurses