Support Network for Young Adults with Multiple Sclerosis

Background: Multiple Sclerosis (MS) is the most prevalent neurologic disease affecting young adults. MS patients not only experience physical symptoms, but may also experience psychological problems. These may include, but are not limited to, depression and anxiety. The rates of emotional disorders are significantly higher in MS patients than in the general population (Minden, Turner, Kalb & Burke, 2014). Support groups are understood to improve psychological well-being (Wakefield, Bickley & Sani, 2013), and our MS Care Center has a support group that is open to patients of all ages. Younger patients expressed interest in attending a support group; however, when invited to attend our established group, some patients were uncomfortable interacting with patients living with advanced MS for fear of long-term disease progression within themselves.

Objectives: Facilitate a meaningful support network for young adults with MS and their unique needs.

Methods: An advanced practice nurse facilitates the support network, consisting of monthly two-hour support group meetings and email support. Topics of discussion center on how MS affects a patient’s life including, cognition, fatigue, nutrition, complimentary and alternative medicines, current research, and positive psychology. The facilitator consultation with nutrition specialists, cognition experts and has National MS Society information packets available. Patients receive flyers for upcoming meetings by email and are encouraged to respond with comments or questions regarding the topic. Participant ownership is encouraged through the selection of topics, meeting times, and open discourse.

Results: Patients report satisfaction in finding others with similar issues and symptoms. They appreciate the ability to freely discuss concerns, symptoms, and emotions. The group members are able can frustrations and feelings more freely than when visiting with the doctor or nurse in routine follow-up visits. Group members state they look forward to monthly meetings.

Conclusions: The addition of a young-adult support network is a critical factor in promoting wellness in the comprehensive care of MS patients. The continuation of monthly peer support-group meetings will help improve psychological well-being of the participants. When patients identify with others experiencing similar disease progression, it will enhance strategies to balance their MS symptoms, work, stress, school, and family issues.