Australian Primary Health Care Research Institute, Australian National University, Acton, ACT, Australia.
Int J Chron Obstruct Pulmon Dis. 2014 Jan 15;9:87-97. doi: 10.2147/COPD.S53887. eCollection 2014.
Since Bury's 1982 proposal that chronic illness creates biographical disruption for those who are living with it, there has been no effort to quantitatively measure such disruption. "Biographical disruption" refers to the substantial and directive influence that chronic illness can have over the course of a person's life. Qualitative research and time use studies have demonstrated that people with chronic illnesses spend considerable amounts of time managing their health, and that these demands may change over time. This study was designed to measure the time that older people with chronic illnesses spend on selected health practices as one indicator of biographical disruption. We look specifically at the time use of people with chronic obstructive pulmonary disease (COPD). As part of a larger time use survey, a recall questionnaire was mailed to 3,100 members of Lung Foundation Australia in 2011. A total of 681 responses were received (22.0% response rate), 611 of which were from people with COPD. Descriptive analyses were undertaken on the amount of time spent on selected health-related activities including personal care, nonclinical health-related care, and activity relating to health services. Almost all people with COPD report spending some time each day on personal or home-based health-related tasks, with a median time of 15 minutes per day spent on these activities. At the median, people also report spending about 30 minutes per day exercising, 2.2 hours per month (the equivalent of 4.4 minutes per day) on nonclinical health-related activities, and 4.1 hours per month (equivalent to 8.2 minutes per day) on clinical activities. Excluding exercise, the median total time spent on health-related activities was 17.8 hours per month (or 35.6 minutes per day). For people in the top 10% of time use, the total amount of time was more than 64.6 hours per month (or 2.2 hours per day) excluding exercise, and 104 hours per month (or 3.5 hours per day) including exercise. The amount of time spent on health-related activity, such as engaging in personal care tasks, may be regular and predictable. The execution of these tasks generally takes relatively small amounts of time, and might be incorporated into daily life (biography) without causing significant disruption. Other activities may require large blocks of time, and they may be disruptive in a practical way that almost inevitably disrupts biography. The amount of time required does not appear to alter in relation to the time since diagnosis. The scale of time needed to manage one's health could easily be interpreted as disruptive, and for some people, even overwhelming.
自 1982 年 Bury 提出慢性病会对患者的生活造成严重干扰以来，还没有人试图对这种干扰进行定量测量。“生活干扰”是指慢性病对个人生活产生的实质性和指导性影响。定性研究和时间使用研究表明，慢性病患者需要花费大量时间来管理自己的健康，而且这些需求可能会随时间而变化。本研究旨在衡量慢性病患者在某些健康行为上所花费的时间，以此作为生活干扰的一个指标。我们特别关注慢性阻塞性肺疾病（COPD）患者的时间使用情况。作为一项更大规模时间使用调查的一部分，2011 年向澳大利亚肺基金会的 3100 名成员邮寄了一份回忆问卷。共收到 681 份回复（回复率为 22.0%），其中 611 份来自 COPD 患者。对包括个人护理、非临床相关护理以及与健康服务相关的活动在内的选定与健康相关的活动所花费的时间进行了描述性分析。几乎所有的 COPD 患者都报告说，他们每天都会花一些时间进行个人或家庭相关的健康相关任务，中位数为每天 15 分钟。中位数患者还报告每天花大约 30 分钟进行锻炼，每月 2.2 小时（相当于每天 4.4 分钟）用于非临床相关活动，每月 4.1 小时（相当于每天 8.2 分钟）用于临床活动。不包括锻炼，每月花在与健康相关的活动上的中位数时间为 17.8 小时（或每天 35.6 分钟）。对于时间使用排名前 10%的人来说，不包括锻炼，每月总时间超过 64.6 小时（或每天 2.2 小时），包括锻炼，每月 104 小时（或每天 3.5 小时）。花在健康相关活动上的时间，如进行个人护理任务，可能是有规律和可预测的。执行这些任务通常只需要相对较少的时间，并且可以融入日常生活（传记）中，而不会造成重大干扰。其他活动可能需要大量的时间，而且它们可能会以实际的方式造成干扰，几乎不可避免地打乱生活。所需的时间似乎与诊断后的时间无关。管理健康所需的时间规模很容易被解释为具有破坏性，对某些人来说，甚至是压倒性的。
