Population and Social Health Research Program, School of Human Services and Social Work, Griffith Health Institute, Griffith University, Meadowbrook, Qld, Australia.
Health Soc Care Community. 2013 Nov;21(6):665-74. doi: 10.1111/hsc.12052. Epub 2013 May 23.
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.
本研究旨在探讨患有多种慢性疾病和合并症的患者及其无偿照顾者的治疗负担。人们对持续慢性疾病的生活负担已经有了充分的认识。然而，对于主动治疗和管理慢性疾病所带来的负担，通常被称为“治疗负担”，我们的理解还不够。通过对来自不同背景和患有各种慢性疾病的大量成年人的定性数据进行深入分析，本研究有助于填补这一理解空白。本研究采用半结构化深入访谈的方式，对来自澳大利亚四个地区的 97 名参与者进行了数据收集，其中包括具有文化和语言多样性背景以及土著人口的参与者，他们的代表性很高。访谈于 2012 年 5 月至 10 月期间进行，根据参与者的喜好和位置，可选择面对面（n=49）或电话访谈（n=48）。研究人员采用迭代主题分析和恒比法对数据进行分析。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、药物负担以及医疗保健获取负担。然而，经济负担是最成问题的部分，因为治疗费用对大多数人来说都是一笔巨大的开支。经济负担对个人的药物使用产生了不利影响，还加剧了其他类型的负担，如医疗保健服务的获取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循环的方式运作，尽管在某些方面（药物数量和获得治疗的时间）治疗负担是客观的，但它也是一种主观体验。总的来说，本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“个体化”的治疗方案来减轻治疗负担。
