Support Group Participation: Effect on Perceptions of Patients with Newly Diagnosed Multiple Sclerosis

Patients newly diagnosed as having multiple sclerosis (MS) face an overwhelming number of questions about how it will affect their lives. Participation in a support group is one way to obtain information and receive support from others. However, existing support groups are often attended by patients with significant disability, resulting in newly diagnosed patients being hesitant to return.

This qualitative pilot study explored perceptions of patients with newly diagnosed MS before and after participation in two monthly meetings. A support group was conducted each month using nursing staff, a physician, and a social worker. Prior to the first meeting, participants were asked to complete a questionnaire with open-ended questions to share their thoughts about how MS may affect their lives. After the two meetings, they were asked to complete the same questionnaire again.

Eight themes were identified: uncertain disease course; insecure future; physical, emotional, and cognitive impacts; effect on relationships with family and/or spouse/significant other; ability to develop future relationship with significant other; impact on career plans; impact on ability to achieve future goals; and impact on ability to care for self and family. Five of six participants who attended both meetings and one of four who attended only the first meeting expressed a change in their perception of how MS may affect their lives.

A support group dedicated exclusively to newly diagnosed patients may provide an opportunity for patients to experience a change in perceptions of MS.