'You don't get told anything, they don't do anything and nothing changes'. Medicine as a resource and constraint in progressive ataxia
'You don't get told anything, they don't do anything and nothing changes'. Medicine as a resource and constraint in progressive ataxia
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DOI：
10.1111/hex.12016
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发表时间：
2015-04-01
影响因子：
3.2
通讯作者：
Sanders, Caroline
中科院分区：
文献类型：
--
作者：
Daker-White, Gavin;Kingston, Helen;Sanders, Caroline
进行性共济失调是一种影响平衡、运动和言语协调的神经系统疾病。进行了一项定性研究，以发现患者的共济失调经历及其症状。从患者支持小组和两个医院门诊部招募了38名共济失调患者。设计了一项带有主题分析的横断面定性研究。结果这些帐户突出了医学在罕见，无法治愈和致残的疾病，以及处于主流医学知识边界的缓慢进展的疾病所带来的具体不确定性。共济失调患者所面临的生存危机似乎被有时特发性病因和有限数量的可用基因检测可识别的遗传性疾病所放大。受访者被吸引到一个医疗系统，主要集中在诊断过程中，有很大的不同结果。然而，当被问及时，大多数人都认为提供残疾辅助器具和物理治疗更有价值。只有一个线人报告克服了无数的不确定性进行性共济失调，他们的帐户支持的概念传记修复'在慢性疾病。ConclusionsClinical不确定性共济失调约束的人的尝试，以处理他们的病情。在罕见和难以诊断的疾病通常无法治愈的情况下，将积极主动、知情的医疗消费者视为护理伙伴是有问题的。服务提供者应注意管理患者对诊断和治疗的期望。将更多的重点放在提供物理治疗和残疾辅助器具上可能是有益的。
BackgroundProgressive ataxias are neurological disorders affecting balance, co-ordination of movement and speech.ObjectiveA qualitative study was undertaken to discover patients' experiences of ataxia and its symptoms.ParticipantsThirty-eight people with ataxia recruited from patient support groups and two hospital outpatients departments.DesignCross-sectional qualitative study with thematic analysis.ResultsThese accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of biographical repair' in chronic illness.ConclusionsClinical uncertainties in ataxia constrained people's attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult-to-diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids.