Sekella Nora, Gilmore Hannah, French Eileen, Zimmerman Vanessa, Jacobs Dina, Narula Sona
From the Department of Neurology, University of Pennsylvania, Philadelphia, PA.
Int J MS Care. 2025 Apr 7;27(Q2):103-110. doi: 10.7224/1537-2073.2023-071. eCollection 2025 Apr.
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.
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.
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.
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.
多发性硬化症（MS）是一种慢性、不可预测且可能导致高度衰弱的神经系统疾病。它通常在成年早期被诊断出来，但也可能在儿童期和青少年期更早开始。当MS在儿科诊所被诊断和治疗时，所获得的支持水平通常高于成人诊所。一个专门的青年成人（YA）支持小组可能有助于填补患者向成人护理过渡时可能经历的空白。这项定性描述性试点研究探讨了为在成人MS中心接受治疗的患有MS的青年成人建立虚拟支持小组的可行性和效果。
这个有目的的便利样本由8名年龄在18至25岁之间的参与者组成，他们每月进行6次虚拟会议。参与者完成了一份包含6个开放式问题的小组前调查问卷，会议基于这些结果进行。通过包含5个开放式问题的小组后调查问卷对试点实施的结果进行评估。使用主题分析法对数据进行分析。
从小组前调查问卷中确定了几个主题，包括从儿科护理向成人护理的过渡、支持、应对技巧以及对更多MS信息的需求。小组后调查问卷的主题包括关于从儿科护理顺利过渡到成人护理的建议、支持的益处和感觉不那么孤独、应对策略以及对MS知识的增加。
这项研究的结果表明，一个专门的虚拟支持小组可能通过关于与MS共存的共同经历和知识，为患有MS的青年成人提供心理社会支持和认可。
