Hepatitis C patients experienced hardships within their own families as well. For those who experienced stigmatization, 48% felt left alone or pushed aside by their families compared with 10% of the other patients (P < .01). Stigmatizing circumstances generally revolved around issues of contamination and abandonment: “My family is afraid of me. I was invited to go camping.[participant cries in interview.]They asked me to get my own tent. Now they won’t have me in their house because they’re afraid they might get it.”
Using an analysis of patient interviews, this study demonstrates a high prevalence of stigmatization in individuals infected with the HCV. The patients’ words provide powerful testimony to the tremendous impact of negative stereotyping on quality of life. However, we attempted to go beyond anecdotal accounts of traumatic experiences. We instead employed a novel approach toward integrating and crossvalidating qualitative and quantitative data that relied on well-defined inclusion–exclusion criteria, quality controls at various levels to assure the validity of interpretations, and crossvalidation with quantitative survey data.24 With this combination of methods, we were able to qualitatively examine the concept of stigmatization, its association with clinical and demographic variables, and its potential causes as articulated by the patients themselves.25
While this is the first study, to our knowledge, to define levels of stigmatization in this patient population, others have previously investigated stereotyping in various disease groups. Patients with HCV infection face negative stereotyping nearly as often as persons infected with HIV.26 Both HIV and HCV infection share risk factors and are associated with marginalized or even criminal behavior, which may account for some of the similarities. In both cases, fears of contracting a potentially lethal disease may also contribute to the common prejudicial attitudes. Based on these considerations, it is not surprising that patients infected with HIV or HCV face higher degrees of stigmatization than individuals with other chronic diseases.27 Such experiences, and the assumption that diagnoses such as HIV infection will trigger negative reactions, can lead to secrecy, fueled by the fear of discrimination and concerns related to disruption of familial and professional relationships.28,29
Previously published work showed a similar impact of stigmatization in mentally ill individuals. One study consistently found stigmatization leading to isolation, anxiety, and poor coping with the disease.30 During follow-up, patients frequently expressed feelings of rejection, self-depreciation, and a weakened “sense of mastery,” feelings that persisted even when the underlying psychiatric problem itself had improved.31–33 In our study, problems with coping were apparent in the high percentage of patients with hepatitis C who expressed a sense of helplessness, loss of control, and the prospect of a bleak future. The parallels between patients with very different illnesses points to stigmatization as an important contributor to such difficulties in adjusting to life with and treatment of a disease.
We also found a correlation between stigmatization and problems in the professional lives of patients, further increasing the burden of the disease. While little is known about the likelihood of discrimination in patients with chronic liver disease, prior studies have demonstrated a relationship between popular conceptions of a disease and problems patients encounter in the professional sphere.34,35
In addition, many individuals spoke of significant problems within the private sphere. Estrangement from family was associated with a decrease in social support, thereby potentially further interfering with their ability to cope with the disease. Similar results were found in studies of patients with HIV/AIDS and tuberculosis, where patients expressed the feeling of being shunned by those to whom they felt closest.36,37 Such experiences result in adverse effects on well-being, as expressed by many of the patients interviewed here or as reported in the literature.38
While hepatitis C plays an important role in triggering fears and concerns, psychosocial problems may, in some individuals, result from preexisting personality traits that can lead to risk-taking behavior and which may have resulted in the acquisition of hepatitis C.39 However, the likelihood of experiencing stigmatization did not correlate with differences in the mode of acquisition, indicating that emotional problems cannot be simply explained by drug abuse and the associated personality and psychosocial problems. Rather, such feelings were more clearly associated with negative stereotyping, as we noted significant differences in all of these topics between those who did experience stigmatization compared to those who did not.
Interestingly, women were more likely to report stigmatization than men. Very little is known about the influence of gender on the likelihood of negative stereotyping. Studies with disfiguring diseases, such as leprosy, suggest that the distorted body image increases the perceived or actual frequency of stigmatizing experiences.14,40 The acquisition of a potentially contagious disease violates the image of women and mothers as protectors of innocent and helpless infants, thereby marginalizing female patients with HIV or other infections.15,41 More studies are required to determine whether and how patients’ sex affects social interactions between patients and their environment.
Stigmatization not only affects the individual, it also directly impacts the treatment of the disease. Health care workers are not immune to prejudicial views related to disease. Therefore, stereotyping can function as a significant barrier to treatment.42 As a result of such experiences, individuals may resort to secrecy in an attempt to avoid the label of a disease.43 Such secrecy, in turn, may result in further withdrawal and social isolation or may prevent individuals from seeking medical help.44
The study relied on information abstracted from lengthy patient interviews. While this process is a potential source of bias, we controlled for the quality of these data by using intercoder reliability measures and correlating the qualitative and quantitative results. The sample size and these internal and external validity checks allow conclusions that go beyond those obtained by many other studies relying on such extensive interviews. The patients included are representative of the patient population with hepatitis C seen at a tertiary referral center in the more rural Midwest. However, additional investigations are needed to determine whether patients in metropolitan areas or ethnically more diverse regions similarly experience stigmatization. It is conceivable that a referral center attracts a disproportionate fraction of patients with psychosocial problems who are willing to travel longer distances for their medical care. Yet interestingly, neither the size of the town of origin nor the distance to the University of Iowa correlated with the experience of stigmatization. These results and the importance of the University of Iowa Health Care as the main provider of specialized antiviral therapy in this patient population within the region argue against significant distortion resulting from referral bias.
More than half of the patients experienced stigmatization. This key finding clearly highlights the need to discuss such problems with patients and their families. Our results also demonstrate the need for broad-based educational efforts to increase the popular understanding of diseases associated with pejorative stereotypes. These efforts should include health care providers, who may also be affected in their judgment by widespread misconceptions about illnesses such as hepatitis C. Additional studies using qualitative methods or surveys will be needed to determine whether a similar prevalence of stigmatizing experiences can be found in patients attending other specialty or primary care clinics. Moreover, it will be important to assess whether supportive and educational interventions can lessen the emotional burden associated with the disease and improve the quality of life of patients.
The authors thank Nicole Taylor for administrative assistance and Vicki Hudachek for secretarial help.
Grant support: Central Investment Fund for Research Enhancement, 2001, University of Iowa.