Time spent by people managing chronic obstructive pulmonary disease indicates biographical disruption

摘要

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.