Developing and Piloting a Dedicated Support Group for Young Adults With Multiple Sclerosis.

BACKGROUND

Multiple sclerosis (MS) is a chronic, unpredictable, and potentially highly debilitating neurological condition. It is often diagnosed in young adulthood but can start earlier in childhood and adolescence. When MS is diagnosed and treated in pediatric clinics, the level of support is often higher than in adult clinics. A dedicated young adult (YA) support group may help fill the gap that patients may experience when transitioning to adult care. This qualitative descriptive pilot study explores the feasibility and outcomes of a virtual support group for YAs with MS receiving care from an adult MS center.

METHODS

This purposive, convenience sample consisted of 8 participants between the ages of 18 and 25 years who met monthly for 6 virtual sessions. Participants completed a pregroup questionnaire with 6 open-ended questions, and the sessions were based on these results. The results of the pilot implementation were evaluated through postgroup questionnaires with 5 open-ended questions. The data were analyzed using thematic analysis.

RESULTS

Several themes were identified from the pregroup questionnaires, including the transition from pediatric to adult care, support, coping skills, and the need for more information about MS. Themes from the postgroup questionnaire included suggestions for smooth transfer from pediatric to adult care, benefits of support and feeling less alone, coping strategies, and increased knowledge about MS.

CONCLUSIONS

The results of this study suggest that a dedicated virtual support group may provide YAs with MS with psychosocial support and validation through shared experiences and knowledge about living with MS.