为患有多发性硬化症的年轻人建立一个专门的支持小组。

Q1 Nursing
International journal of MS care Pub Date : 2025-04-07 eCollection Date: 2025-04-01 DOI:10.7224/1537-2073.2023-071
Nora Sekella, Hannah Gilmore, Eileen French, Vanessa Zimmerman, Dina Jacobs, Sona Narula
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引用次数: 0

摘要

背景:多发性硬化症(MS)是一种慢性的、不可预测的、潜在的高度衰弱的神经系统疾病。它通常在青年时期被诊断出来,但也可以在儿童和青少年时期更早开始。当在儿科诊所诊断和治疗多发性硬化症时,支持水平往往高于成人诊所。一个专门的青年成人(YA)支持小组可以帮助填补病人在过渡到成人护理时可能经历的空白。本定性描述性试点研究探讨了从成人多发性硬化症中心接受治疗的多发性硬化症青少年虚拟支持小组的可行性和结果。方法:这个有目的的,方便的样本包括8名年龄在18到25岁之间的参与者,他们每月见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。通过组后问卷(5个开放式问题)评估试点实施的结果。采用专题分析法对数据进行分析。结果:从组前问卷中确定了几个主题,包括从儿科到成人护理的过渡、支持、应对技巧和对ms信息的需求。组后问卷的主题包括从儿科到成人护理的顺利过渡、支持的好处和减少孤独感、应对策略和增加对ms的了解。本研究的结果表明,一个专门的虚拟支持小组可以通过分享与MS生活有关的经验和知识,为MS青少年提供社会心理支持和验证。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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.

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来源期刊
International journal of MS care
International journal of MS care Nursing-Advanced and Specialized Nursing
CiteScore
3.00
自引率
0.00%
发文量
40
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