'You say treatment, I say hard work': treatment burden among people with chronic illness and their carers in Australia
'You say treatment, I say hard work': treatment burden among people with chronic illness and their carers in Australia
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DOI：
10.1111/hsc.12052
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发表时间：
2013-11-01
影响因子：
2.4
通讯作者：
Wheeler, Amanda J.
中科院分区：
文献类型：
--
作者：
Sav, Adem;Kendall, Elizabeth;Wheeler, Amanda J.
本研究的目的是探讨各种慢性疾病和合并症患者及其无偿护理人员的治疗负担。长期患有慢性病的生活负担已经得到充分证实。然而，与积极治疗和管理慢性病相关的负担，通常被称为“治疗负担”，却鲜为人知。这项研究通过对从来自不同背景和各种慢性病的成年人大样本中收集的定性数据进行深入分析，有助于弥合我们理解中的这一差距。使用半结构化的深入访谈，收集了97名参与者的大样本数据，其中包括来自澳大利亚四个地区的文化和语言不同背景的人和土著居民的高代表性。访谈在2012年5月至10月期间进行，根据参与者的偏好和地点，面对面（n=49）或通过电话（n=48）进行。采用迭代专题方法和常数比较法对数据进行了分析。研究结果揭示了治疗负担的四个相互关联的组成部分：经济负担，时间和旅行负担，药物负担和医疗保健获得负担。然而，经济负担是最成问题的部分，治疗费用对大多数人来说都很高。经济负担对一个人使用药物产生了不利影响，也加剧了其他类型的负担，如获得医疗服务以及与治疗相关的时间和旅行。治疗负担的四个组成部分以周期性方式运作，尽管治疗负担在某些方面是客观的（药物数量和获得治疗的时间），但它也是一种主观体验。总的来说，这项研究强调了医疗保健专业人员迫切需要识别因治疗而不堪重负的患者，并制定个性化的治疗方案以减轻治疗负担。
The aim of this study was to explore treatment burden among people with a variety of chronic conditions and comorbidities and their unpaid carers. The burden of living with ongoing chronic illness has been well established. However, the burden associated with proactively treating and managing chronic illness, commonly referred to as treatment burden', is less understood. This study helps to bridge this gap in our understanding by providing an in-depth analysis of qualitative data collected from a large sample of adults from diverse backgrounds and with various chronic conditions. Using semi-structured in-depth interviews, data were collected with a large sample of 97 participants that included a high representation of people from culturally and linguistically diverse backgrounds and indigenous populations across four regions of Australia. Interviews were conducted during May-October 2012, either face to face (n=49) or over the telephone (n=48) depending on the participant's preference and location. Data were analysed using an iterative thematic approach and the constant comparison method. The findings revealed four interrelated components of treatment burden: financial burden, time and travel burden, medication burden and healthcare access burden. However, financial burden was the most problematic component with the cost of treatment being significant for most people. Financial burden had a detrimental impact on a person's use of medication and also exacerbated other types of burden such as access to healthcare services and the time and travel associated with treatment. The four components of treatment burden operated in a cyclical manner and although treatment burden was objective in some ways (number of medications, and time to access treatment), it was also a subjective experience. Overall, this study underscores the urgent need for healthcare professionals to identify patients overwhelmed by their treatment and develop individualised' treatment options to alleviate treatment burden.