Experiences of stigma in healthcare settings among adults living with HIV in the Islamic Republic of Iran

Journal of the International AIDS Society Experiences of stigma in healthcare settings among adults living with HIV in the Islamic Republic of Iran Fatemeh Rahmati-Najarkolaei 2 Shamsaddin Niknami 0 Farkhondeh Aminshokravi 2 Mohsen Bazargan 2 Fazlollah Ahmadi 1 Ebrahim Hadjizadeh 3 Sedigheh S Tavafian 2 0 Department of Family Medicine, Charles Drew University of Medicine and Science , Los Angeles, California , USA 1 Department of Nursing, Tarbiat Modares University , Tehran , Iran 2 Health Education Department, Tarbiat Modares University , Tehran , Iran 3 Department of Biostatistics, Tarbiat Modares University , Tehran , Iran Background: People living with HIV (PLHIV) sometimes experience discrimination. There is little understanding of the causes, forms and consequences of this stigma in Islamic countries. This qualitative study explored perceptions and experiences of PLHIV regarding both the quality of healthcare and the attitudes and behaviours of their healthcare providers in the Islamic Republic of Iran. Methods: In-depth, semi-structured interviews were held with a purposively selected group of 69 PLHIV recruited from two HIV care clinics in Tehran. Data were analyzed using the content analysis approach. Results and discussion: Nearly all participants reported experiencing stigma and discrimination by their healthcare providers in a variety of contexts. Participants perceived that their healthcare providers' fear of being infected with HIV, coupled with religious and negative value-based assumptions about PLHIV, led to high levels of stigma. Participants mentioned at least four major forms of stigma: (1) refusal of care; (2) sub-optimal care; (3) excessive precautions and physical distancing; and (4) humiliation and blaming. The participants' healthcare-seeking behavioural reactions to perceived stigma and discrimination included avoiding or delaying seeking care, not disclosing HIV status when seeking healthcare, and using spiritual healing. In addition, emotional responses to perceived acts of stigma included feeling undeserving of care, diminished motivation to stay healthy, feeling angry and vengeful, and experiencing emotional stress. Conclusions: While previous studies demonstrate that most Iranian healthcare providers report fairly positive attitudes towards PLHIV, our participants' experiences tell a different story. Therefore, it is imperative to engage both healthcare providers and PLHIV in designing interventions targeting stigma in healthcare settings. Additionally, specialized training programmes in universal precautions for health providers will lead to stigma reduction. National policies to strengthen medical training and to provide funding for stigma-reduction programming are strongly recommended. Investigating Islamic literature and instruction, as well as requesting official public statements from religious leaders regarding stigma and discrimination in healthcare settings, should be used in educational intervention programmes targeting healthcare providers. Finally, further studies are needed to investigate the role of the physician and religion in the local context. - Background Stigma affects the lives of individuals infected with HIV [1]. Particularly, disadvantaged people living with HIV (PLHIV) experience discrimination in their interactions with the healthcare system [2]. Stigma is considered to be a major barrier to effective responses to the HIV epidemic [3]. More than four decades ago, Goffman (1963) defined stigma as an attribute that is deeply discrediting, and proposed that the stigmatized person is reduced from a whole and usual person to a tainted, discounted one [4] (p. 3). Even though this construct has generated extensive theoretical and empirical research [5], there is, as yet, no solid, common theoretical perspective on stigma [6]. Deacon (2006) constructed a sustainable theory of health-related stigma that brought together both the individual and social dimensions of this complex phenomenon that may facilitate interventions against health-related stigma. Deacon argues that stigma comes about in a social process during which the following occurs: illness is perceived as controllable or preventable, and caused by identifiable immoral behaviours. These behaviours are associated with certain groups that carry the illness, which draws on existing social constructs of the other, who are consequently blamed for becoming infected. These others experience status loss from the projection of blame, and may become disadvantaged as a result [6]. The internalization of this blame and the perceived status loss by stigmatized (HIV-infected) persons, combined with objective assessments of the infected persons day-to-day experiences with structural discrimination (institutional practices that disadvantage stigmatized persons) [7,8], together may create, in the stigmatized persons viewpoint, a perception of the healthcare system as intolerant and inaccessible [9]. Numerous studies have documented the attitudes of healthcare providers toward PLHIV [10-15]. Although the literature characterizes the attitudes and behaviours of healthcare providers as positive and respectful, many studies also report poor communication between patients and healthcare providers [16], which functions as a major barrier in providing proper care for these patients [17]. Few studies in the international body of literature explore the experiences of PLHIV in the context of the healthcare system. One recent cross-sectional study, conducted among a sample of 202 PLHIV in Los Angeles County, US, demonstrated that in a diverse and under-served sample of PLHIV, poor access (selfreported) to medical care is strongly associated with experiencing HIV stigma. The effect of perceived discrimination or internalized HIV stigma on access to care, regular HIV care, and adherence to treatment need further attention [9]. Research suggests that exploring the experiences of PLHIV with the healthcare system may not only enhance the quality of care that patients receive, but could also improve quality of life for PLHIV [18]. In addition, the inter-relationship between stigma and other factors known to be associated with adherence to medical treatment among PLHIV needs to be further demarcated in future studies in order to identify targets for successful intervention programmes [9]. An increasing number of countries in the Middle East, North Africa and Asia, including those with Muslim majorities, have experienced or are at risk for HIV epidemics [19]. HIV transmission and occurrence of AIDS in the Middle East is increasing, while access to HIV care and antiretroviral therapy in the region lags behind access in most low- to middle-income countries [20]. Religious constraints on sexuality may have consequences for the transmission of sexually transmitted infections [21]. It has also been reported that Muslim countries have a lower prevalence of HIV than nonMuslims countries. G (...truncated)