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“我能做的比我想象的多”:探索帆船运动治疗多发性硬化症的博客。

"I can do more than I thought I could": exploring the online blogs from the Sailing Sclerosis journey.

机构信息

Faculty of Education, Monash University, Clayton, Australia.

出版信息

Disabil Rehabil. 2020 Mar;42(6):880-886. doi: 10.1080/09638288.2018.1510046. Epub 2019 Feb 1.

Abstract

Diagnosis of a chronic, unpredictable, and incurable disease such as multiple sclerosis can have profound effects on emotional wellbeing. The Sailing Sclerosis Foundation provided an opportunity for 94 individuals living with multiple sclerosis from 16 countries to challenge themselves by sailing aboard the yacht, as it circumnavigated the globe over a 17-month period in 2014 and 2015. We explored the psychosocial outcomes of this unique journey. Deductive thematic analysis was used to analyze 206 blogs posted online by participants to the Sailing Sclerosis website during and after their journey. Four major themes were identified: (1) the challenges of the journey; (2) teamwork and camaraderie that arose from sharing a diagnosis in common; (3) reframing mindsets as people acknowledged and adjusted to their diagnosis; and (4) empowerment and personal growth with hope rediscovered. The blogs suggested psychosocial outcomes of the journey included lower levels of depression, better quality of life, more positive well-being, an increase in self-esteem, reduced anxiety, lower stress levels, and better life satisfaction, as well as increased social support and empowerment. Numerous psychosocial benefits are achievable when individuals with multiple sclerosis are provided with opportunities and support to challenge themselves.Implications for RehabilitationA diagnosis of multiple sclerosis does not necessarily have to mean a sedentary lifestyle and social isolation.Psychological adjustment to a diagnosis of multiple sclerosis, changes in mindset, and rediscovering hope and optimism can be achieved by adventurous means outside clinical settings.We encourage clinicians, policy makers, and funding bodies to think 'outside the box' when developing and supporting programs for individuals living with chronic illnesses.

摘要

诊断多发性硬化症等慢性、不可预测且无法治愈的疾病会对情绪健康产生深远影响。Sailing Sclerosis 基金会为来自 16 个国家的 94 名多发性硬化症患者提供了一个机会,让他们挑战自我,乘坐帆船环游世界,历时 17 个月,于 2014 年至 2015 年完成环球航行。我们探讨了这次独特旅程的心理社会结果。采用演绎主题分析方法,分析了 206 名参与者在航行期间和结束后在 Sailing Sclerosis 网站上发布的博客。确定了四个主要主题:(1)旅程中的挑战;(2)由于共同的诊断而产生的团队合作和友谊;(3)重新调整心态,因为人们承认并适应了自己的诊断;(4)赋权和个人成长,重新找回希望。博客表明,旅程带来的心理社会结果包括抑郁程度降低、生活质量提高、幸福感增强、自尊心提高、焦虑减轻、压力水平降低、生活满意度提高,以及社会支持和赋权增加。当为多发性硬化症患者提供挑战自我的机会和支持时,他们可以获得许多心理社会益处。

康复意义多发性硬化症的诊断并不一定意味着要过久坐不动和与世隔绝的生活。通过在临床环境之外进行冒险活动,可以实现对多发性硬化症诊断的心理调整、思维方式的改变以及重新发现希望和乐观主义。我们鼓励临床医生、政策制定者和资助机构在为慢性病患者制定和支持项目时,跳出思维定式。

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