Loss and change: experiences of people severely affected by multiple sclerosis
Loss and change: experiences of people severely affected by multiple sclerosis
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DOI：
10.1177/0269216307076333
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发表时间：
2007-01-01
影响因子：
4.4
通讯作者：
Higginson, Irene J.
中科院分区：
文献类型：
--
作者：
Edmonds, Polly;Vivat, Bella;Higginson, Irene J.
本研究旨在探讨严重受多发性硬化症（MS）影响的人的重要问题。个别访谈进行了23人与MS（PwMS）和17个非正式照顾者，有关32 PwMS的数据。获得了关于19名女性和13名男性的信息，平均年龄为55岁，诊断的中位时间为14.5年，身体残疾范围从轻度到重度，尽管有15名患者有重度残疾。32人中有26人无法行走，24人插管，18人上肢功能严重受损或无上肢功能。与丧失和变化有关的个人问题，特别是在身体能力的丧失或变化方面，包括保持流动性，独立性，关系和社会角色，通常被提出来回答一个开放式的问题，即在MS生活中什么问题是重要的。我们的研究表明，即使是患有MS多年并且现在受到严重影响的患者也会继续经历损失和变化。我们建议关注情感支持，特别是针对受严重影响的人处理损失和变化的三个主要领域-身体问题，独立性和关系。姑息治疗提供者可能有管理损失的专业知识，这可能是有用的，这些患者与神经服务的伙伴关系。
This study aimed to explore important issues for people severely affected by multiple Sclerosis (MS). Individual interviews were conducted with 23 people with MS (PwMS) and 17 informal carers, the data relating to 32 PwMS. Information was obtained about 19 females and 13 males, with a mean age of 55, median time from diagnosis was 14.5 years, and physical disabilities ranged from mild to severe, although fifteen patients had severe disabilities. Twenty-six of the 32 individuals were unable to walk, 24 were catheterised, and 18 had considerably impaired or no upper limb function. Personal issues in relation to loss and change, particularly in terms of losses of or changes in physical abilities, including maintaining mobility, independence, relationships and social role were raised commonly in response to an open-ended question about what issues were important in living with MS. Coping with MS requires individuals to deal with the losses and changes brought about by their illness. Our study suggests that even patients who have had MS for many years and are now severely affected continue to experience loss and change. We recommend that attention be given to emotional support which specifically addresses three main areas of dealing with loss and change for people that are severely affected - physical issues, independence and relationships. Palliative care providers may have expertise in managing loss that could be useful for these patients in partnership with neurological services.