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1 NEXUS, School of Nursing; 2 Community Medicine; and 3 School of Environmental Health, University of British Columbia, Vancouver, Canada
Correspondence and requests for reprints should be addressed to Joy Johnson, Ph.D., R.N., F.C.A.H.S., School of Nursing, University of British Columbia, 302-6190 Agronomy Road, Vancouver, BC V6T 2B5, Canada. E-mail: joy.johnson{at}ubc.ca
ABSTRACT
Stigma is a social construction that defines people in terms of a distinguishing characteristic or mark, and devalues them as a consequence. Stigma occurs when society labels someone as tainted, less desirable, or handicapped. There is emerging evidence that chronic obstructive pulmonary disease (COPD) is a physical condition with social consequences. The valuing, and devaluing, of individuals within society are social judgments that have roots in sociocultural values and beliefs. Cultural norms and values dictate the distinct roles and behaviors that are expected of men and women in a given culture. Social reactions to individuals with COPD can have an effect on their illness experience. This article explores the relationships between COPD and stigma and gender, particularly how these key elements may interact to affect experiences of individuals with COPD within their social milieu. The aim of this article is to begin to set out questions and issues that require further empirical exploration. The stigma of COPD arises because people are held responsible for their disease, are noted to have engaged in a stigmatized behavior (smoking), are marked with oxygen equipment and bodily changes, and experience a disruption in their social interactions.
Key Words: stigma • chronic obstructive pulmonary disorder (COPD) • gender
Stigma is a social construction that defines people in terms of a distinguishing characteristic or mark, and devalues them as a consequence (1). Stigma occurs when society labels someone as tainted, less desirable, or handicapped (2). The stigma associated with disease may depend on factors such as whether a person is held responsible for the disease and whether the disease leads to serious disability, disfigurement, lack of control, or disruption of social interactions (3). Stigma that is ascribed to controllable factors may elicit a greater negative reaction than stigma ascribed to uncontrollable factors (4). Stigma can have an effect on various aspects of the illness experience, including seeking health care, receiving diagnostic investigations, and accessing treatment and other supportive services (5). Negative reactions may come from family, friends, community members, or health professionals.
Gender can influence the degree and type of stigma that is experienced by individuals. All individuals within a given society are expected to fulfill certain roles, behave in certain ways, and assume responsibilities that are deemed appropriate based on sociocultural norms. Gender is a sociocultural phenomenon; cultural norms and values dictate the distinct roles and behaviors that are expected of men and women in a given culture (8). The valuing, and devaluing, of individuals within society are social judgments that have roots in sociocultural values and beliefs. Social reactions to individuals with chronic obstructive pulmonary disease (COPD) can have an effect on their illness experience.
Initially, COPD might not be considered a disease that is stigmatizing; however, consider the ways that patients with COPD have been described in the medical literature. Health professionals were historically taught to differentiate between patients with COPD who were "pink puffers" from those who were "blue bloaters." These terms by their very nature stigmatized patients with COPD by conjuring up negative images. It is well known that COPD has a chronic and progressive course, requires complex treatment, and results in physical deterioration that may necessitate changes in activities and lifestyle. Furthermore, there may be an impact on social interactions, roles and responsibilities, and social acceptance, thus resulting in often profound changes in the quality of life for individuals and their families over a prolonged period (6). Various signs and symptoms, including dyspnea, persistent cough, sputum production, wheezing, poor exercise tolerance, fatigue, and weight loss, can "mark" patients (7), as can the physical changes that can occur from the use of medications such as steroids. Individuals with COPD must not only live with the physical and psychosocial effects of the disease but with the sociocultural implications as well.
In this article, we explore the relationships between COPD and stigma and gender, particularly how these key elements may interact to affect experiences of individuals with COPD within their social milieu. The aim of this article is to review the literature and to begin to set out questions and issues that require further empirical exploration.
The literature review was conducted using the following keywords: chronic obstructive pulmonary disease (COPD); gender, gender identity; stigma, discrimination, prejudice, stereotyping; culture; and ethics. Due to the a priori knowledge that there has been little research conducted on this topic, an allied search was also done to explore the issues of gender and stigma in people with lung cancer. It was anticipated that this allied search may provide insight into issues that may also be relevant to COPD populations.
The electronic databases chosen for this review included the following: Medline, Cochrane Central Register of Controlled Trials, ACP Journal Club, Database of Abstracts of Reviews of Effects, and the Cochrane Database of Systematic Reviews. Hand searches were conducted from the bibliographies of relevant articles. No limitations were placed on the dates of the articles, although articles were restricted to those in English.
COPD AND STIGMA
Causes of Stigma
The research literature addressing stigma and COPD is limited. Individuals living with COPD have been reported to experience stigma stemming from the visible effects of illness, including their struggle to breathe, and the use of supplemental oxygen. These experiences are consistent with the literature that suggests that stigma may be associated with diseases that lead to serious "observable" consequences, such as disability or lack of control (3). Earnest conducted a qualitative study involving 27 women and men living with COPD and reported that respondents repeatedly described a sense of stigmatization that was a direct result of using supplemental oxygen around other people and which led to feelings of embarrassment and social isolation (9).
Stigma may also be associated with whether or not an ill person is held responsible for the disease (3). Individuals with COPD may also be stigmatized due to the association of COPD with smoking and the perceived "self-inflicted" nature of their condition (3). This raises the important question of who is stigmatizing individuals with COPD, and what is the subsequent impact on their illness experience.
Sources of Stigma
Researchers have reported that patients with COPD feel stigmatized by people around them, as well as by their physicians. In Earnest's study, respondents described feeling personal shame and embarrassment about using oxygen due to the association of COPD with smoking (9). O'Neill conducted a qualitative study of 21 women living with COPD, and reported that women felt stigmatized as a result of their illness (10). Respondents described feeling distressed when people stared at them on the street when they were working harder to breathe. O'Neill also explored the loss of social relationships that women experienced. For example, one respondent described how she was rejected by others because of functional limitations resulting from COPD (10). O'Neill also reported that respondents believed their physicians were biased against them because of their smoking history (10).
Implications of Stigma
The impact of stigmatization may be significant and dramatically affect various aspects of the illness experience of the patient with COPD. For example, feeling stigmatized by family, friends, or members of the community may affect self-esteem in patients with COPD and engagement in social activities, thus having implications for social support, which may lead to isolation. Stigma from health care professionals may affect health care access. Patients with COPD who feel stigmatized may hesitate to seek care for fear of judgment or negative repercussions associated with having the condition. Patients may also decrease their use of specific treatments that are associated with stigma or that show that they have COPD.
Gender and Stigma
Little discussion can be found in the literature that directly touches on the topic of gender, stigma, and COPD. Earnest's study findings provide some insight into the potential influence of gender roles in the COPD illness experience, specifically how the sociocultural roles and expectations of women and men may interact with the use of supplemental oxygen. In particular, the respondents expressed concern about how their inability to fulfill their gender roles will appear to other people.
STIGMA AND LUNG CANCER
The literature on stigma and cancer has some bearing on the field of COPD and stigma and is worth considering. Chapple and colleagues conducted a qualitative study involving 45 individuals in the United Kingdom with lung cancer, and explored their perceptions and experiences of stigma (11). The authors reported that older people are less likely to feel blamed for having lung cancer than younger people, possibly because older people became addicted to cigarettes when smoking was widely accepted and before the dangers were widely known.
Chapple and coworkers' research also reported that respondents perceived that the financial support of lung cancer research and care was limited as a consequence of stigma. In a follow-up study, Chapple and colleagues explored the experiences of claiming financial benefits for people with lung cancer (12). They found that a fear of stigma made some people reluctant to seek financial assistance. This reluctance seemed to be particularly prominent among the men. For example, one participant reportedly could have obtained relief from the payment of tax that was due, but refused to tell the tribunal judges that he had lung cancer for fear of being devalued as a man and because of his need to be "normal."
Another important issue that is raised in the literature on lung cancer is the relationship between changes in physical appearance and the experience of stigma, a factor which may also be influenced by gender. Cancer treatments may lead to hair loss, scars, or other changes to the body, which may be a source of stigma (11). Rosman (13) conducted a qualitative research study that considered gender in exploring chemotherapy-associated hair loss among individuals with cancer. The sample included 35 patients with lung or breast cancer (7 women and 9 men with lung cancer, and 19 women with breast cancer). The study found that most women in the sample experienced their hair loss as a "confrontation with a serious and fatal illness." To cope, they adopted a strategy designed to hide and camouflage their stigma. Their primary strategy was to wear a wig. However, men in the sample (and some women) saw baldness as a "logical and inevitable consequence of treatment." The main strategy they used was banalizing their stigma.
In considering the relevance of cancer to COPD, it must be questioned whether cancer-related hair loss evokes the same social reaction as do the visible changes in physical appearance that occur as a result of the disease process and medication use in many patients with COPD. For example, individuals with emphysema may experience weight loss and increased chest size (barrel chest). Are individuals with COPD who experience bodily changes stigmatized because of their altered physical appearance? If so, is the experience different for men and women? For example, there are gender-related physical appearance expectations for both women and men; women in North American society are held to an expectation of beauty and youthfulness, whereas men are expected to be physically strong and robust. Both sets of expectations may be disrupted by COPD.
AREAS FOR FURTHER EXPLORATION
Although there is a lack of explicit analysis of the ways that gender influences the experiences of stigma among patients with COPD, a careful reading of research literature hints at areas that require further exploration. For example, O'Neill reported that some female respondents with COPD believed that their physicians were biased against them "because they were women" (10). No further detail is provided; therefore, it is difficult to know whether this is a perceived bias against women patients in general, or particularly against women who have developed COPD. This distinction would be important to explore further.
There is a documented relationship between COPD and lower socioeconomic status. Prescott and colleagues reported that FEV1 and FVC increased with increasing levels of education and household income in both females and males (14). In addition, education and income were significantly associated with admission to hospital, and this was not affected by adjustment for smoking. The risk for admission in the lowest socioeconomic group was approximately threefold higher than in the highest group, and was similar in females and males. Prescott and Vestbo (15) reviewed various risk factors for COPD that are in turn associated with lower socioeconomic status. Is there stigma associated with COPD because affected individuals have lower socioeconomic status? Globally, women have lower socioeconomic status compared with men. As the prevalence of COPD increases among women, will there be an even greater proportion of individuals with low socioeconomic status? Will this result in greater stigma associated with the condition?
COPD is more common among individuals who are older adults (onset in the fourth/fifth decade followed by a chronic course that varies in duration). Is there stigma associated with this disorder because affected individuals are primarily in older age groups? Weir commented that COPD will soon become known as an "old woman's disease" (16). How will this affect the stigma related to this condition?
There are a handful of studies that have explored the impact of social interaction and social support on depression, anxiety, loneliness, self-care, and quality of life (QOL) among individuals living with COPD (7, 17–19). However, there is no explicit discussion of stigma in this work. Stigma may have a profound effect on social interactions, and it would be valuable to include a focused exploration of what role (if any) stigma plays in these contexts. For example, Kara and Mirici (7) found that 96.7% of patients with COPD and 93% of their spouses reported moderate to moderately high levels of loneliness. Although these researchers do not discuss stigma, they postulate that patients and spouses may view themselves as different and feel apart from healthy people, and this may be a contributory factor.
Women with COPD have been reported to have lower QOL scores than men with COPD. For example, de Torres and investigators used the St. George's Respiratory Questionnaire to assess QOL (20). They reported significantly lower scores for women in the activities and symptoms QOL scale domains. There is no discussion of the role of stigma. In a study such as this it would be valuable to explore what role stigma might play, if any, in affecting QOL. de Torres and colleagues suggest that the evaluation of psychological or sociocultural factors should be further investigated in the female COPD population as a possible explanation for their impaired QOL (21). Stigma is an important sociocultural component, and should form a part of this investigation. The intersection of various factors such as gender, age, socioeconomic status, and smoking status makes understanding the issue of stigma in relation to COPD highly complex.
CONCLUSIONS
There is emerging evidence that COPD is a physical condition with significant psychosocial consequences. The stigma of COPD arises because people are held responsible for their disease, are noted to have engaged in a stigmatized behavior (smoking), are marked with oxygen equipment and bodily changes, and experience a disruption in their social interactions. Although researchers such as Berger (22) are explicitly exploring the stigma-related experiences among women and men with COPD, this research must include an explicit examination of gender differences and sociocultural influences. A full understanding of the health effects of COPD must take into consideration the ways that stigma can affect health access and outcomes, and how these effects may be mediated by gender.
FOOTNOTES
Conflict of Interest Statement: None of the authors has a financial relationship with a commercial entity that has an interest in the subject of this manuscript.
(Received in original form July 29, 2007; accepted in final form October 8, 2007)
REFERENCES
This article has been cited by other articles:
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  D Kotz, R Vos, and M J H Huibers Ethical analysis of the justifiability of labelling with COPD for smoking cessation J. Med. Ethics, September 1, 2009; 35(9): 534 - 540. [Abstract] [Full Text] [PDF]
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