Cautioning against the ‘STIGMA pitfall’
Susanna Hausmann-Muela, Joan Muela Ribera, Elizabeth Toomer and Koen Peeters
Spilling over from HIV/AIDS and TB work, stigma is becoming a new trend in neglected tropical diseases research. While certainly a promising development, we see a potential risk of overemphasizing stigma when focusing on access to care. Reflecting on literature about stigma and on our own work on social exclusion of Buruli ulcer patients in Cameroon, we caution against limiting the scope by looking through a ‘stigma lens’. In order to avoid the ‘stigma pitfall’, we propose to carefully scrutinize and systematically deconstruct stigma in order to comprehend the underlying elements which can lead to stigma. We also suggest the use of broader approaches, such as the social exclusion approach, which we believe is better suited to take social and economic factors into account when dealing with access to care. Careful analysis of all potential factors implied in social exclusion is central for proposing and designing better tailored health interventions.
If some diseases are ‘serial killers’, as Jeffrey Sachs (2007) has characterized malaria, others are ‘social killers’.. Some neglected tropical diseases, such as leprosy, onchocercosis, or Buruli ulcer, which do not lead to alarmingly high death rates, are social killers because they cause disability, and consequently have economic implications, but above all because they may result in social exclusion. Socially excluded persons are limited in work, in social activities, in participation in networks, etc., and ultimately enter into a spiral of impoverishment for themselves and their families.
In this way, due to the focus on stigma, the social consequences of tropical diseases are increasingly recognized. Drawing attention to stigma has helped to refine public health messages and to sharpen awareness campaigns. In this sense, the focus on stigma has proven to be tremendously useful in tropical disease control. However, an all too euphoric use of stigma in neglected tropical diseases also bears certain dangers. In this article we caution against the misuse of stigma in public health.
2. Stigma kills
According to Goffman (1968), the pioneer sociologist in the study of stigma, stigma refers to any kind of signifier (for example physical lesions, bodily deformities and illness names, like AIDS) metaphorically charged with a deeply discrediting meaning, used to classify people in social categories that lead to status loss, discrimination and social isolation. Stigmatization is, therefore, a social process of labeling, stereotyping and socially excluding people in a context of power relations (Link & Phelan, 2001). Illness stigmas are marks of shame, often perceived as negative evidence of the moral status of the patients and/or their families, particularly if the disease is attributed to angry ancestors, witchcraft, bad fate, divine punishment, ‘vice’, ‘immoral’ sexual behavior, etc. (Kleinman, 1995).
The issue of stigma is gaining ground in the literature about neglected tropical diseases (Molyneux et al., 2005; Hotez & Ferris, 2006). Leprosy and syphilis are two neglected diseases that can be considered prototypes of stigmatizing illnesses; however apart from leprosy (Floyd-Richard & Gurung, 2000; Tsutsumi et al., 2007; Opala & Boillot, 1996;
Van Brakel, 2003; Barret, 2005) and sexually transmitted diseases (Low et al., 2006), stigma has been associated with hematuria in urinary schistosomiasis (Takouang et al., 2004), with lesions of onchocercal skin disease (Brieger et al., 1998; 2001; Hagan, 1998; Vlasoff, et al., 2000), with scabies (Heukelbach & Feldmeier, 2006; Marshall et al., 1995) and with Buruli ulcers (Debaker et al., 2005; Stienstra et al., 2002). As Van Brakel (2003) argues in his literature review on leprosy and stigma, with conditions like leprosy, HIV/AIDS, epilepsy, schizophrenia, etc., the stigma may be worse than the disease itself. Stigma can produce an often irrational rejection of its victims by the stigmatizers, but also by the stigmatized themselves (self-stigma) and their allies. For this reason stigmas are often labeled as ‘social killers’ since this rejection can lead to loss of social networks, loss of work, difficulty in finding marriage partners, divorce, loss of reputation, discrimination and ostracism, etc. and ultimately to isolation.
3. Hiding stigma and the trouble of delay
In relation to the ‘visibility’ of stigmatizing diseases, Goffman (1968) distinguishes between the situation of the ‘discredited’ (marked by noticeable stigmatizing conditions), who must manage rejection, and that of the ‘discreditable’ (marked by stigmatizing conditions which are not visible, like HIV, or which are easy to hide), who must manage information. In both cases, the affected adopt strategies to camouflage or hide their potentially stigmatizing conditions. Likewise, when the illness is fiercely discrediting and obvious, the family tends to hide the affected person from public view, both in order to protect him or her, but also to shield the family itself since the implications of stigma often reach beyond the victim (Goffman, 1968; Kleinman, 1995) and in the worst case scenario the victim is expelled from the household and family ties are severed (Barret, 2005).
Understandably, victims of stigmatizing diseases may sometimes opt not to attend health centres since their presence may reveal their condition. Health centers, especially those which are specialized in sexually transmitted diseases, leprosy, etc. are public spaces, where the simple act of attendance may indeed suggest or reveal the stigmatizing condition of the user. This may explain why many people prefer attending health centers or hospitals far away from their residences in order to remain anonymous - a coping strategy which has been described by Pearson (1998) and Barret (2005) for leprosy cases. In this sense, far from being an obstacle, distance can in fact be useful - nonetheless, though distance can be advantageous for people dealing with stigmatizing diseases, it still remains an economic burden, particularly for the poor, and is often not a realistic option.
4. Use and misuse of stigma in public health
Various studies indeed show that stigma associated with sexually transmitted diseases directly or indirectly hinders access to public health clinics, and hence that stigma is an important disincentive to treatment (Lichtenstein, 2003; Coleman & Lohan, 2007). Similar arguments have been made in HIV/AIDS research (Figueroa, 2004), epilepsy (Dilorio et al., 2003), and leprosy (Floyd-Richard & Gurung, 2000). The harm of stigma is, following these arguments, that it inhibits treatment of the stigmatizing illnesses, and therefore both illness and stigma persist. However, that stigma hampers access to health care poses in fact a paradox: Why should one avoid efficacious treatment, if the disease causes not only physical suffering, but also social, psychological and economic damage due to its stigma? Why is stigma an obstacle rather than an incentive for initiating or adhering to treatment?
We do not deny that stigma, or fear of diagnosis of a stigmatizing disease, can be a barrier to seeking care; we simply point out that one should not uncritically assume the inhibiting role of stigma. Though stigma can hinder health-seeking processes, other elements play a role.
As alluded to above, one common way of misusing stigma in public health is to overestimate its role, and thereby overlook other relevant factors which play a part in determining health seeking, for example a lack of efficacious drugs on the part f the health provider or a lack of resources for coping with direct and indirect illness costs on the user side. Arguing against the increasing use of stigma as an all-encompassing explanation in HIV/AIDS behavioral research, Castro & Farmer (2005) pose the question “Where is the evidence that stigma is a barrier for access to treatment, when in 2002 less than 5% of persons affected by AIDS in poor countries had access to highly efficacious antiretroviral therapy?” (p. 53). And they reiterate later: “What is the motivation for learning one’s serostatus when there is no possibility of being treated for opportunistic infections?” (p.56). If efficacious treatment was available, would they not use it if they could afford it? Castro & Farmer (2005) suggest that it is not stigma, but the limited accessibility of efficacious treatment (local availability) and cost barriers which are the main factors for explaining people’s attitudes towards diagnostic tests, their abandonment of therapies or their non-treatment. They also show that implementation in the Dominican Republic of effective therapy for mothers has helped diminish the stigmatization of patients. Pearson (1988) in her study about leprosy in Nepal further suggests that poor quality of care in the established leprosy health centers, rather than the fear of being locally known as a leprosy case, were decisive for women not to attend the new services.
Another misuse of stigma consists of attributing social isolation or exclusion to the stigmatizing character of the illness, without considering other possibilities. Buruli ulcer, together with leprosy, is a neglected tropical disease which is considered highly stigmatizing (Debaker et al., 2005; Stienstra et al., 2002), due to the lesions, but also due to its local causal attribution, strongly linked to social transgressions and witchcraft (Stienstra et al., 2002). In a study we carried out in Cameroon (Peeters et al., 2008), Buruli ulcer exhibited all the symptoms of a stigmatizing disease: it was clearly associated with transgressions, such as theft and witchcraft, and many of its sufferers were isolated. However, our research revealed that the principal reason for social isolation of those patients was not in fact stigma, but was the result of the high direct and indirect treatment costs. Far from being an advantage, distance of Buruli ulcer treating hospitals turned out to be a serious drawback. Although treatment was free of charge, the transport costs and loss of work days while visiting patients during their long hospital stays were the reasons for many patients to be abandoned by their families.
5. Implications for public health
In a nutshell, stigma should not be used as a ready explanation for treatment delay or abandonment, but as a hypothesis that has to be carefully tested in the field. To do so correctly is pivotal for designing adequate public health interventions:
If the obstacle for people seeking adequate preventive or curative care is stigma, public health programs do well in fighting stigma through sensitization campaigns – not only targeted at the population, but also at health personnel and policy makers. The classical approach is Information-Education-Communication (IEC) campaigns which include culturally adapted messages about illness and its treatment. In the words of Stienstra (2002), in her recommendation for improving Buruli ulcer detection and control:
“Educational programs should be developed, not only because they could help in the detection of cases in an earlier stage of the disease, but because they might also lower stigma”. Such campaigns aim at changing attitudes, both of the society towards the affected and of the stigmatized themselves.
However, if the obstacle is not (or not principally) stigma, other strategies are required. Debaker et al. (2005) in their study on Buruli ulcer in Benin, propose creating “regional centers that allow patients easy access to treatment with short travel distances and low treatment costs, coupled with educational sessions. This proximity would render the follow-up of patients easier and be a source of new information on the disease for the population”. Similarly, in our study on Buruli ulcer in Cameroon, where social exclusion is above all a consequence of the catastrophic economic burden of the disease, the strategy which is most likely to be successful is decentralized treatment. Besides sensitization campaigns, improving access to effective biomedical resources should be a major focus. Castro & Farmer (2005) suggest that good access to treatment helps to generate an environment in which, step by step, the vicious cycle of illness, stigma and poverty is counteracted.
For improving our understanding of stigma and its psychological and socio-economic impact on access to care, it is of paramount importance to situate stigma in relation to other factors and to contextualize it in broader conceptual frameworks, be it in healthseeking behavior, vulnerability, structural violence or social exclusion.
Since the 1990s, ‘beliefs’ have dominated the behavior change literature of international health projects. The ‘beliefs’ boom was rooted in an exaggerated enthusiasm of identifying ‘wrong beliefs’ as the responsible barrier to access to health. Consequently, well designed IEC messages were considered the key to correcting people’s behavior. The overemphasis on beliefs entirely disregarded a person’s socio-economic status and capacity to cope with health care costs, or the importance of structural factors such as health care infrastructure, quality of health care, etc. Today, we have fortunately moved toward a more integrated view, where cultural factors are analyzed together with social, economic, political, and environmental factors.
Nonetheless, spilling over from HIV/AIDS and TB work, stigma is threatening to become a new ‘cultural’ boom in neglected tropical diseases if not systematically analyzed. The ‘stigma pitfall’ shows interesting parallels to the ‘beliefs pitfall’. For instance, looking only at beliefs in order to explain patients’ visits to traditional healers can easily detract from other, substantially more important reasons for not attending health centers, e.g. not affordable, poor quality or simply not available biomedical treatment. Likewise, though stigma might represent part of the problem, social exclusion has other roots and therefore caution is required to avoid overemphasizing stigma as the sole factor responsible for limited health care access.
Moreover, an uncritical focus on stigma bears further dangers than detracting from other fundamental causes of social exclusion. Looking at access solely through a ‘stigma’ lens decontexualizes the problem and – similar to focusing solely on beliefs – is likely to lead to only partial solutions and implementations that may not be appropriate in the local context. The example of Buruli ulcer in Cameroon (Peeters et al., 2008) has clearly shown that social isolation is strongly linked to economic constraints of caretakers and families, rather than to stigma. Well designed awareness campaigns with the aim to reduce stigma are therefore unlikely to lead to successful behavioral change if they are not accompanied by an improvement of people’s capabilities to cope with the economic costs of illness. In such a context, a policy of decentralization of Buruli ulcer treatments would most likely be a much more effective strategy. Castro and Farmer (2005) also show that improving availability, and especially efficacy, of health care resources not only fosters access to health care, but also reduces stigma. Carefully scrutinizing and systematically deconstructing social exclusion is required in order to reveal the most relevant causes of social exclusion and to develop health interventions that are sensitive to these realities. With this appeal for caution against the over- or misuse of stigma in public health, we hope to contribute to stimulating the discussion on stigma and to encourage careful analyses of social exclusion.
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