[STUDY] Experiences of Children and Adolescents Living with MS: "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........"

SUMMARY: The children and adolescents living with MS who participated in this study had many common experiences. Initially, they were unfamiliar with MS and had a multitude of feelings about the diagnosis. They gradually learned about MS from a variety of sources including just living with the disease. 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, they felt unchanged in many ways. Most noted some positive and negative changes in their relationships after diagnosis. They described stressors unique to having MS that made life more challenging, but they used diverse coping strategies to help them address these stressors. All had supportive people in their lives who facilitated coping. They expressed the need to move forward with life and identified hopes and plans for the future. MS clearly contributed to shaping their self-identities, but their disease remained only one component of who they are. 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."