Patient Perception, Preference and ParticipationUnderstanding the self-care strategies of patients with asthma
Introduction
Asthma is one of the leading causes of disability and is now considered an epidemic in developed countries [1]. Its prevalence has increased at lightning speed in the United States since 1980; it is now estimated that almost 31 million American men and women have been diagnosed with asthma at some point [2]. Although we cannot cure asthma, we know how to treat the disease effectively in most patients so that they can maintain their quality of life. Evidence-based guidelines mention that people with asthma should avoid triggers and take preventive medication in order to experience as few symptoms as possible [3], [4], [5], [6]. Unfortunately, despite effective pharmacotherapy and better dissemination of such guidelines in medical practice, many people affected by this chronic illness still face uncontrolled asthma.
Indeed, researchers have pointed out that only 25% of asthmatic patients reach good control of their asthma as stipulated in clinical guidelines [7]. In other words, 75% of asthmatic patients face recurring episodes of asthma attacks, which means that some of them may have to go to the ED and may be hospitalized. Each year in the United States, 2 millions patients are seen in the ED for aggravated asthma [8]. The consequences of uncontrolled asthma are major for patients. The burden of asthma is reflected in school absenteeism, which represents 10 millions missed school days annually in the US. In addition, according to WHO estimates, 255,000 people died of asthma in 2005 [9].
There is abundant literature on the self-management of asthma. Numerous studies have focused specifically on adherence to medications by asthma patients and indicate that under-use of corticosteroids is the principal cause of asthma treatment failure [10]. Non-adherence to preventive medication has been associated with the way people perceive their illness in particular its seriousness and to people's beliefs about medication, especially with respect to potential side effects [11], [12], [13], [14]. We also know that the benefits of medical and educational strategies aimed at improving adherence to treatment are rather moderate, especially over the long term [15], [16], [17].
However, the emphasis on the problem of non-adherence to asthma medication tends to obscure our understanding of the illness experience from the patient's perspective [18]. We consequently know very little about how people manage their illness and attempt to control their symptoms [19]. We know that when health care professionals take patients’ perceptions of treatment into account, patients tend to experience self-management more positively [20]. Thus, as Horne mentions, we must deepen our understanding of the perspective of patients and integrate this into primary care [21].
The purpose of our study was to understand, from their perspective, how asthmatics deal with their illness. This study was guided by two main research questions: (1) How do patients deal with asthma and its treatment? and (2) What type of self-care strategies are undertaken by patients (including consulting a health care professional)? This qualitative study provides new insights into the patients’ perspective that could help health care professionals better support their asthma patients.
Section snippets
Methods
Our qualitative study was based on a comprehensive approach that is pertinent to developing a deep understanding of the patients’ experience of illness, treatment and health care [22]. This approach was relevant to our research questions and to the way we view health/illness and the health care experience. In effect, although chronic illness is an embodied experience, our main concern was to understand it as a subjective, or “biographical trajectory” shaped by the social dimensions of the
Results
Three types of self-care strategies emerged among our study participants: (1) strategies focused on controlling symptoms; (2) strategies aimed at preventing symptoms; (3) strategies for tolerating symptoms. Table 3 summarizes these 3 strategies and for each, presents two central dimensions: patients’ asthma management goal and patients’ asthma management experience, including self-medication strategy and recourse to health care.
Discussion
To our knowledge, our study provides original data on the self-care strategies among people living with asthma. It sheds new light on the self-care experience in particular, and on the process of health care strategies among vulnerable people. However, we need to be prudent in generalizing our data, as they come from a specific context. In effect, our study was conducted in Quebec, Canada and thus, participants benefited from free access to health care and were all insured through a drug
Acknowledgments
This study was supported by a doctoral fellowship from the Canadian Institutes of Health Research and by the Asthma Society of Canada. We also thank Elke Love and Alissa Levine for editing the text. We would like to express our gratitude to people who participated in this study. The authors have no financial or personal conflict of interest in this study.
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