SOCIAL CONTEXT OF HIV STATUS DISCLOSURE BY PEOPLE LIVING WITH HIV IN TUREY
Dr. Pınar ÖKTEM
Abstract
Based on qualitative interviews with people living with HIV (PLHIV), this paper examines the motives and strategies for disclosure and non-disclosure of HIV status by PLHIV in Turkey. As an area at the intersection of human rights and public health, disclosure is discussed not only in relation with social-psychological and health-related needs but also around cultural and legal frameworks behind stigmatisation. The discrepancy between the strong motivations for disclosure expressed by the participants and the felt requirement for concealment due to fear of discrimination is an important source of discomfort for PLHIV. This situation and possible solutions are discussed through a critical approach to existing conceptualizations about disclosure. The need for a comprehensive national HIV/AIDS policy, comprising systematic counselling, testing and partner notification services is emphasized.
Keywords: Sociology of health and illness, HIV/AIDS, stigma
Özet
Bu çalışma, HIV ile yaşayan bireylerle gerçekleştirilmiş niteliksel araştırmanın sonuçlarına dayanarak, HIV tanısını başkalarıyla paylaşıp paylaşmamayla ilgili motivasyonları ve stratejileri incelemektedir. İnsan hakları ve halk sağlığı yaklaşımlarının kesişim noktasında yer alan, HIV tanısının açıklanması konusu, sosyal-psikolojik ve sağlıkla ilgili ihtiyaçlar kadar, damgalanmayı biçimlendiren toplumsal ve yasal çerçeve ile ilgisi bakımından da ele alınmıştır. Katılımcıların HIV statülerini açıklamaya yönelik güçlü motivasyonları ile ayrımcılık endişesinden kaynaklanan gizlenme gerekliliği arasındaki çelişki, HIV ile yaşayanlar için önemli sorun oluşturmaktadır. Bu durum ve çözüm yolları, ilgili literatürdeki kavramsallaştırmalara eleştirel bir yaklaşımla tartışılmış ve Türkiye’de HIV/AIDS’e yönelik, danışmanlık, test ve partner bilgilendirme hizmetlerini de içeren kapsamlı bir politika gerekliliğine işaret etmiştir.
1. Introduction
Since the early years of the epidemic, HIV/AIDS1 has been a major research subject for sociologists working on health and illness, stigmatisation, gender, development, economics, human rights and law. As Herdt (1992:9) said, HIV/AIDS can be seen as ‘a sort of social X-ray’ that shows what is seen as ‘mainstream and peripheral, deviant and normal’ in a society. In other words, the study of social perceptions around HIV/AIDS and of the experiences and status of people living with HIV (PLHIV) in a given society, contributes to our understanding of social reality.
Numerous research findings on the social context of HIV/AIDS have established that stigmatisation and discrimination against PLHIV continue to be a major global problem2, despite many important developments in the medical science. It is known today, that being infected with HIV does not mean a ‘death sentence’; since HIV is classified as a ‘chronic health condition’, manageable by successful treatment. It is estimated that 35,3 million people all around the world are currently living with HIV and that the transmission of the epidemic and the number of deaths due to the disease have been reduced to a great extent (UNAIDS, 2013). Thanks to the advances in medical treatment, PLHIV can lead long and healthy lives, continue their education and their works, and get married and have children if they wish to. Yet, this can only be possible if PLHIV have access to treatment and can benefit from social and legal mechanisms that protect them from stigma and discrimination.
Stigma and discrimination against PLHIV have important negative consequences for both the lives of PLHIV and the spread of the epidemic. Previous research showed that PLHIV are often subjected to violence, physical and social isolation, loss of job and housing, institutional discrimination in education and healthcare, and consequently, a disruption of their social identity (Ogden and Nyblade, 2005; DFID, 2007; UNAIDS, 2009). Stigma and discrimination also provide ground for the further transmission HIV, since people might be reluctant to be tested for HIV, to seek medical help and to continue their treatment, due to the fear of being discriminated against (de Bruyn, 1998; Adam, 1992; van Brakel, 2005; Goudge et al., 2009).
1Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) 2 See e.g. Ogden and Nyblade, 2005 and Mahajan et al., 2008 for a review of previous research and
In Turkey, a total of 7528 people have been diagnosed with HIV/AIDS, since the first identification of the disease in 1985. However, experts argue that the official figures are underestimates, because of the low level of HIV testing and the lack of a proper surveillance system (Ay and Karabey, 2006; Tümer, 2008). In addition, it is seen that despite the global decline in new infections, the number of people newly infected with HIV is rising rapidly in Turkey. It is also evident from previous research that knowledge on HIV/AIDS is very low (see e.g. Çok et al., 2001; Duyan et al., 2001; GFK/PYD, 2008) and that negative attitudes towards PLHIV are common among the general public (Okan and İrgil, 1993; Ünsal, 1999; Ekuklu et al., 2004; Oğuzkaya and Güleser, 2006; Mağden et al., 2003). Studies conducted by non-governmental organisations (NGOs) also revealed that stigma and discrimination against PLHIV mostly occur in healthcare settings and workplaces (Pozitif Yaşam Derneği, 2007; 2008; 2009).
The above-mentioned forms and results of stigma and discrimination shape the ways in which PLHIV manage their social lives, their physical health, their psychological wellbeing and their social identities. While these forms and consequences of stigma and discrimination against PLHIV have been documented globally, sociological studies focusing on the subjective experiences of PLHIV, aiming at understanding these experiences from their own perspectives, remained relatively rare, especially in Turkey. To date, very few qualitative research (Aşar-Brown, 2007; Kasapoğlu and Kuş, 2008) has been conducted in Turkey, with the aim of grasping PLHIV’s subjective experiences.
Sharing one’s HIV-positive status with other people, i.e. disclosure of HIV-positive status, is one of the main aspects of management of social life for PLHIV, as will be explained in detail in the next section. Both in Turkey and globally, the social context, in which the perceptions about HIV/AIDS and PLHIV are constructed, shape the motives and behaviours related to disclosure of HIV-positive identity.
This paper focuses on disclosure experiences of PLHIV in Turkey, based on the results of a one-year fieldwork conducted in Ankara and İstanbul3. In other words, the paper focuses on why and how PLHIV in Turkey reveal or hide the information that they are infected with HIV, by discussing the social context shaping their motivations and strategies for this behaviour.
The main questions to be addressed in this paper can be summarized as followings:
What are the social, psychological and physical (health-related) motives beyond disclosure decisions?
What are the social factors that obstruct disclosure behaviour?
What are the strategies used for disclosure and concealment of HIV-positive status?
How do the motives for disclosure and non-disclosure affect the management of social life and social identity?
The answers to these questions will be discussed in relation to their meanings for the social construction of HIV/AIDS-related perceptions in Turkey. The implications of the results in terms of a comprehensive understanding of disclosure will be reviewed. In addition to the relative lack of sociological studies on this issue in Turkey, some gaps and discussions in the literature on disclosure of HIV-positive status, which will be explained above, necessitated such an investigation in this context.
2. Theoretical framework
The theoretical background of this study is based on the conceptual frameworks on stigma management in general and on the literature on HIV status disclosure in particular.
While the concept of stigma has been defined by Goffman as ‘an attribute that is deeply discrediting” in his classical work in 1963, it is currently used in a broader sense, especially in the literature on health-related stigma. This paper follows the conceptualisation offered by Link and Phelan (2001), stating that stigmatisation is a social process consisted of labelling, stereotyping, separation, status loss, and discrimination, which occur in a power situation that allows them. The general stigma literature has been criticised for not taking power structures into account and not linking micro and macro processes adequately (Riessman 2000; Link and Phelan 2001; Parker and Aggleton 2003; Shih 2004; Campbell and Deacon 2006; Howarth 2006). In this sense, Link and Phelan’s (2001) conceptualisation has been considered valuable.
Another criticism towards the stigma literature has been about the limitations of the term ‘coping’ with stigma. In this paper, the term ‘management’ is used instead of ‘coping’, since ‘coping’ approach is criticised for focusing on the strategies used for avoiding, tolerating or accepting the negative consequences of the chronic health condition and of the stigma attached to it. The term management on the other hand, additionally refers to the strategies for achieving order and control in life, for creating positive outcomes and for
removing the stigma from the identity at both individual and collective levels (Mason 2001; Shih 2004; Kralik et al. 2004)4.
From the coping perspective, the strategies used by PLHIV as defence mechanisms can be the concealment of HIV status, avoidance of situations and environments where their HIV status may be identified (Alonzo and Raynolds, 1995) and withdrawal from social interactions or ‘retreatism’ (Taylor, 2001). As recent approaches to the management of stigma defend, strategies which are conventionally considered to be maladaptive could in fact be adaptive in some circumstances (Anderson et al., 2009) and thus should be understood as situation-specific (Livneh and Martz, 2007).
Therefore, disclosure or concealment of HIV status is an important part of stigma management strategies employed by PLHIV. Disclosure of HIV status has been defined as the process of communicating the information that the person has been diagnosed with HIV (Paiva et al., 2011). This process might be voluntary or involuntary (for example when PLHIV is forced to disclose or a third person disclose their identity to others). In this paper, disclosure is used in the sense of voluntary, self-disclosure.
An overall review of existing literature on HIV status disclosure shows that the disclosure behaviours of PLHIV have been most frequently studied in relation with informing sexual partners (spouses or casual partners). It is also seen that while ‘western’ literature on HIV status disclosure have focused primary on white men having sex with men (MSM) (Valle and Levy, 2009), studies conducted in Africa tended to focus on women’s disclosure to their partners (Ssali et al., 2010). There are relatively less studies on disclosure to family, friends and others (Saali et al., 2010) and on disclosure in healthcare settings, probably reflecting the idea that the HIV status would be already known to healthcare professionals.
Research in different settings revealed different rates of disclosure; for instance, studies of disclosure to sexual partners and/or spouses in Africa found disclosure rates ranging from 24 % to 91 % (Ssali et al., 2010). Disclosure rates and patterns also differ across cultural settings and may depend on sex, gender, social network and family/relationship status of PLHIV. For example, Obermeyer et al. (2011) found that disclosure tend to be higher in high-income countries and that gender shapes disclosure motivations and reactions.
4 For a discussion on a similar criticism about ‘coping’ approach in the literature on management of
Disclosure to sexual partners has been regarded as a crucial issue, particularly from a public health perspective, since it is seen as a way of reducing risky sexual behaviour and further transmission of HIV and also a means of identifying possible undiagnosed cases. It is anticipated that disclosing HIV status to a sexual partner will encourage the partner to practice safe sex and apply to a testing centre (Valle and Levy, 2009; Ssali et al., 2010; Zang et al., 2014).
In this sense, disclosure has been an area of moral and legal debates. The right to privacy and confidentiality - from the perspective of PLHIV’s human rights - and the benefits of disclosure in terms of preventing further transmission of HIV - from the public health perspective – have been the two main points in these discussions (Valle and Levy, 2009; Obermeyer et al., 2011). Especially for healthcare providers, who consider both the rule of patient-doctor confidentiality and the perceived responsibility of informing patients’ partners, low levels of partner disclosure can raise important legal and ethical dilemmas (Karataş et al., 2010).
With regards to disclosure behaviours and motives, one of the approaches frequently used in disclosure studies can be defined as a ‘cost-benefit’ approach, which argues that PLHIV’s personal decisions to tell others about their HIV-positive status are based on the anticipated positive and negative consequences of disclosure. According to this approach, PLHIV are expected to disclose their status if they believe that the benefits would outweigh the costs. The ‘costs’ of disclosure found in previous research are ‘stigma, loss of sexual/romantic partners, emotional harming of family/friends, shattering of privacy, physical isolation, blame, and loss of income’, while the ‘benefits’ are listed as ‘social support, emotional catharsis’ (Valle and Levy, 2009) and increased access to treatment, financial or material support (Saali et al., 2010).
However, a ‘cost vs. benefit’ approach is far from offering a comprehensive framework for understanding disclosure, since there might be other ‘motives’ or ‘reasons’ behind disclosure needs and behaviours, which cannot be simply explained by their potential negative or positive impacts. For example, as found by Ssali et al. (2010), one might be encouraged to talk openly due to the relationship ties with a trusted friend or relative, or might feel a need to contribute in HIV prevention by raising awareness and encourage others to get tested. Some studies categorized the reasons for disclosure as ‘self-focused’ and ‘others-focused’. ‘Self-focused’ reasons included the need for social, spiritual, psychological or medical support or a need for the continuity of the existing intimate
relationship; while ‘others-focused’ reasons are related with a sense of responsibility, a felt need to protect others (Masupe et al., 2012).
Bond (2010) on the other hand, emphasizes that although non-disclosure can be seen as a way of protecting oneself from enacted stigma and discrimination, it can also be seen as related with respect and privacy in one’s life. Based on her research and experiences in Zambia, Bond (2010) argues that one of the dynamics behind disclosure decisions is the motivation of maintaining a ‘wider identity’. This means that public disclosure – being open more widely, outside limited circles – can ‘shift the public/private boundaries’ and cause the person’s identity to be fixed to her/his HIV-positive status.
With regards to the potential effects of non-disclosure, it has been argued that while concealment of HIV status can be beneficial in terms of protecting psychological wellbeing (Paiva et al., 2011), it is also related with increased risk of transmission, hindered access to social support and poor adherence (Zang et al., 2014). However, these explanations can be challenged in different ways: First, it can be argued that although concealment of HIV status can protect the person from enacted stigma (the instances of discrimination, Scambler and Hopkins, 1986), it cannot protect from felt, anticipated, internalized forms of stigma5.
Secondly, in order to understand the consequences of non-disclosure, we should distinguish different forms and contexts of non-disclosure. In this paper, non-disclosure, i.e. ‘not to tell’, does not necessarily mean ‘concealment’, which includes active behaviour for ‘hiding’. Besides, it should be noted that one can be ‘open’ to some people, for example in a closer circle of family, friends or community, and not open to others, in a more public sphere. These situations will be referred as ‘selective, limited’ disclosure.
Therefore, although the above-presented theoretical framework has been used in this research, the previously mentioned categorizations have not been ‘imposed’ on the data gathered through the research. In addition, in line with the criticism towards the dual understandings of stigma management strategies mentioned above, the ideas that disclosure is necessarily desired, empowering and a sign of ‘successful’ acceptance of being HIV-positive in all circumstances and that non-disclosure is a passive way of protecting oneself from enacted stigma are challenged in this study. In this sense, following Virginia Bond
5 Although internalized stigma is important for a better understanding of stigma experiences of
(2010), it can be argued that there is no single explanatory model for the understanding of disclosure. Disclosure and non-disclosure decisions and behaviours are ‘nuanced and rarely absolute’ and are ‘embedded in social reality’ (Bond, 2010) as will be discussed through the results of this study.
3. Methods
The paper is based on the completed PhD thesis of the author (Öktem, 2013)6
. Since the research aimed to understand the perspectives of PLHIV, it has been designed as a qualitative and interpretative research. The fieldwork has been conducted in Ankara and İstanbul, which are the cities with the most of the population living with HIV in Turkey. Purposive and theoretical sampling method has been used, based on an intersectional approach (Crenshaw, 1997; Choo and Ferree, 2009), which meant for this research that the experiences of stigmatization would differ depending on the intersecting, multiple social locations that individuals occupy in different systems of social hierarchies.
Twenty-four people living with HIV (nine women, including two male-to-female transsexual individuals and fifteen men, including eight MSM) have been interviewed. Participants have been reached mostly through civil society organizations, but also through few clinics and through the author’s personal contact7
.
The main method of data generation was biographical narrative interviewing, using the framework of Biographical Narrative Interpretative Method (BNIM) (Wengraf, 2006; 2009). The interview technique suggested by BNIM involves the use of a ‘single question aimed at inducing narrative’, which, in this study, asked the participants to tell their whole life story. In line with this interview technique, the author just listened and took notes, without any interruption, in the first sub-section of an interview, until the respondent finished telling the ‘whole story’. In the second sub-session, the author asked specific questions to the participants based on the ‘formula’ suggested by the BNIM approach8
. These questions were selected and formulated on the basis of what, how and in which order the participants told their stories in the first sub-section.
6 Data and discussion presented in this paper are derived from different chapters of the thesis
(namely: ‘managing social life and the shift in identity’ and ‘implications of discursive structures on agency: illness identities and social activism’); but have been extended and linked to one another for the specific purpose of this paper.
7 The author whishes to express her deepest gratitude to all of the participants of this research for
their valuable time, their interest, and trust.
In this sense, this interview technique is considerably different from a semi-structured interview format; no questions were prepared or formulated prior to the interview (except very few questions on demographic and health-related issues). Therefore, when interpreting the results presented in this paper, it should be noted that disclosure experiences were not directly asked to participants and that all data presented here emerged by itself, from the narratives of the participants.
Interviews lasted between forty-five minutes and four and a half hours; took place in a setting where the participant preferred; and tape-recorded with the consent of the participant. All interviews were transcribed verbatim and analysed by the author. The analysis was conducted using both thematic and narrative analysis techniques. Thematic analysis was done both on paper and on a qualitative data analysis software (NVivo), by creating ‘topic nodes’ and ‘analytical nodes’ that were linked and compared in the later stages of the analysis (Grbich, 1999; Mason, 2002; Richards, 2006; Holliday, 2007). Narrative analysis on the other hand, involved the identification of the boundaries of narrative segments, the ways of expression, the content and the context of the told story, and the comparisons among participants’ ways of narrating similar topics (Grbich, 2007; Riessman, 2000).
Ethical approval has been obtained prior to the fieldwork, from the School of International Development Ethics Committee of the University of East Anglia, where the author was registered as a PhD student. Accordingly, utmost care has been taken in order to protect confidentiality and anonymity of the research participants. The participants’ demographical characteristics are not displayed in a list format, nor their real names are given in this paper, in order to avoid any risk of disclosure.
4. Participants
The participants were mostly in their thirties (n=9). Seven were in their forties, five in their twenties and three were over fifty-five years old. More than half (n=13) were university graduates or had some years of experience in university education. Seven participants graduated from secondary school; three from primary school and one participant did not know how to read and write. Fifteen of the participants defined themselves as having middle or upper middle income, while seven stated they have ‘good’ economic status and two defined themselves as ‘poor’. While the interviews took place in Ankara and Istanbul,
two of the participants were living in another city at the time of the interview and another two were living in rural settings.
Among women, three were married and six were single (either divorced, widowed or never-married). Among heterosexual men, four were married and four were never married. Among homosexual men, three were in long-term intimate relationship and three were divorced from their wives. None of the single participants (women or men) were cohabiting. Six participants, including women and men, had children; none of the children were HIV-positive.
Ten of the participants were diagnosed with HIV more than five years ago. Nine were diagnosed recently, in the last two years. For the rest of the participants (n=5), time since diagnosis was two to five years. Majority of the participants were under treatment at the time of the interview. Six were not taking treatment, since it has not been medically necessary to start treatment for them. Only one participant was self-identified as ‘non-adherent’ to treatment. In terms of receiving peer-support from other PLHIV, less then half of the participants (n=11) were in regular contact with a support group, while the rest (n=13) were not.
5. Results
As an introductory background to the discussion on the motives and strategies for disclosure, it is necessary to start with an overview of the patterns of disclosure found in the sample. Then, the motives for non-disclosure will be explained first, with the aim of providing a picture of the general environment of fear and insecurity surrounding the experience of disclosure. After presenting the strategies for concealment, the motives and strategies for disclosure will be explained. Finally, dilemmas occurring through the conflicting needs and motives related to disclosure will be discussed.
5.1. Patterns of disclosure and non-disclosure
While most participants disclosed their HIV-positive status in health institutions, they concealed it from some family members, friends and in the workplace for different reasons. Participants living with their parents were mostly open to their both parents, except two participants. Of those who were married or in a relationship, only one person was not open
to his partner. Among eleven participants who were in full-time employment at the time of the research, eight concealed their HIV status from co-workers9.
There was no significant difference between women and men in terms of the people to whom they disclosed their HIV status and their levels of disclosure. However, some differences between heterosexual and homosexual male participants were found. Homosexual participants were more open in general, particularly to their parents, about their HIV status. This is partly due to the fact that married heterosexual men were in relatively less contact with their parents since they had formed their own families. It should be noted that disclosing HIV status to parents does not mean that these homosexual men disclosed their sexual identities as well. Four were open, four totally closed and one selectively disclosed his sexual identity in certain environments. Relatively limited disclosure by heterosexual men was also seen in their relationships with friends and other people outside their families. Half of the heterosexual men stated that ‘no one’ knew their HIV status apart from close family members and a couple of other people living with HIV.
Another salient difference among the participants in terms of the importance of concealment was location. The researcher’s observations, key informants’ opinions and the narratives of PLHIV indicated that Ankara is seen as a ‘small city of civil servants’ in which people would hide themselves more than they would in Istanbul. Finally, a notable difference among the participants in terms of disclosure was that all of the participants who described themselves as ‘religious’ (seven people) were concealing their HIV-positive identities from everybody except a couple of very close people.10
5.2. Motives and strategies for concealment
The concealment of HIV status from parents was mostly explained in terms of a motive for avoiding upsetting them or for protecting them from potential stigmatisation, whereas concealment from friends and co-workers was based on the fear of losing friends or losing the job. However, a broader feeling of insecurity accompanied the fears expressed in the narratives; almost all of the participants expressed awareness that their privacy, their right to work and their right to be protected from discrimination were not protected.
9 For a detailed discussion on discrimination at workplaces see Öktem, 2014a.
10 Although spiritual beliefs of the participants were not asked by the researcher, seven participants
Most of the PLHIV’s strategies for concealment were expressed in the context of managing their health, since adherence to treatment and self-care require some behaviour such as attending hospitals frequently, taking medicine in public and asking permission for leave from the workplace which can arouse curiosity in others. For some participants who had other health problems through which their HIV status had been diagnosed, this other illness functioned as a pretext for their HIV-related health condition and health-related behaviour. In those cases, previous or ongoing real health problems were used as a cover. When a person did not have another health problem, they fabricated one as a pretext. For example, one of the participants explained that he had had to announce to his distant relatives and others that he had cancer, although his closer family knew the truth. He then had to cope with the sadness and concern of those who thought he had cancer. He actually felt very well and had no health problems at all, but was surrounded by people crying and pitying him.
Participants also stated that they developed behaviours for hiding the pills or prescriptions from others. Also, because of some confidentiality problems in the social security system11, some of the participants, with financial resources, chose to pay for their tests and pills ‘from their pockets’, staying outside of the health insurance system. A participant explained that because he feared for his job he had his HIV-related tests carried out in a friend’s name.
Another way of concealment was the use of different names and different means of communication with people who did and did not know their HIV status. Some were using nicknames in their relationships with other PLHIV. Even after their real names became known to the others as trust built over time, they still called each other by their nicknames. This is a habit that is acquired in due course with the aim of preventing unintentional disclosure of others’ HIV status, as one of the participants explained. Both the interviews and the observations found that protecting the privacy of others was considered as important as protecting one’s own.
As mentioned before, concealment was not always perceived as a solution to avoiding stigma, since felt stigma itself can create major psychological problems. Some of the participants who used certain ways of concealment, such as the above-mentioned ones,
11 Such as the MEDULA system (the online computerised system used for organising and following
information about patients), in which patients’ information is accessible using national identity number.
explained how, in everyday life, they constantly try to confirm that their HIV status is not known to others. In some cases, they examine carefully if others in their social and/or work environment behave in an unusual way towards them or, try to ‘see it in their eyes’. This need of constant check, itself, creates a major source of distress as the narratives demonstrated. Especially when the person feels a strong motivation for disclosure, the felt need of hiding one’s HIV status creates a painful discrepancy, as will be explained below.
5.3. Motives for disclosure
Three themes in the motives for disclosing HIV status to others emerged from the narratives. The first is the psycho-social need to share experiences and emotions with others. It was difficult for some people to repress their feelings and endure in silence: Pelin12, for example, said that she felt ‘like I’m going to explode if I don’t tell’. An explanation for the need for disclosure, expressed by another participant, was the value given to intimacy in interpersonal relationships in the communitarian culture of Turkey, which makes it more difficult to endure in silence:
“When you can not tell anything to anybody, it makes you feel much more uncomfortable, because you know.. maybe as a society, we are so used to share everything with some other people, perhaps we are so used to open up everything to everybody without reservation, I guess we have been brought up that way. Because of that, I mean, to remain quiet, to live this thing on our own, was a bit hard for me honestly.” (Fidan, 27, female)
This motive for disclosure was mostly expressed by participants with access to peer-support networks. Most of the participants who avoided talking about such issues were not in close contact with an NGO or other PLHIV.
The second main motive for disclosure was a feeling of moral responsibility. For example, disclosure of HIV status to a healthcare professional (to a nurse when giving blood or to a dentist before appointment) was explained in terms of responsibility. In spite of the negative results of disclosure such as mistreatment or the denial of healthcare, most participants preferred to be honest about their HIV status to protect medical staff.
"Well, of course, you feel exhausted but you don't give up the struggle. I felt very exhausted I said enough is enough, I mean, this is it, I won't tell anyone anymore. But this time I feel very disturbed, conscientiously. If a person is going to do something on my body and if this person is going to be infected with something, with my disease as the result of this job, this disturbs my conscience a lot." (Adnan, 43, male)
The ‘responsibility to disclose’ was not only related to the felt requirement of protecting the other person where there is a risk of HIV transmission; in more general terms, participants stated that hiding something is ‘not morally right’, is ‘as bad as lying’ and ‘against honesty’.
The discrepancy between concealment and morality was expressed not only by people who thought that one should be open but also by those who were determined to conceal their HIV-positive identity. The discomfort of behaving ‘unethically’, especially for the participants who described themselves as very religious and/or highly regarded in their community, is exemplified in Ahmet’s and Fidan’s accounts:
“There's only one thing.. some of my friends [who don’t know my HIV status], say ‘X (a respectful salutation) you are alone; don’t go to the hospital by yourself, let one of us come with you’. When they say that, I couldn’t figure out yet how to get away from this. But I’ve been thinking of a formula to solve this as well. And at this point of my life, I mean from now on, unfortunately my life will continue dissemblingly. I mean I will be pretending. I will have to pretend, from now on, I will lie, and I don’t like to lie, I’m bad at lying, but I have to manage it somehow. This might be tough for me.” (Ahmet, 40, male)
“Once, we [me and my husband] went there [parents-in-law's house in a village] in Ramadan (Islamic month of fasting) and we didn't fast. But we woke up every night with them (for the meal consumed early in the morning) so that they won't know. (...) In the kitchen they [women] were preparing food for the evening meal and I was stealing some food every now and then, saying to my husband 'wait for me at the gardens' and I made him eat secretly. Because he needed to use his medicines. We woke up in the morning, he needed to have breakfast, to use his medicine. I took some food in secret and I said 'oh my God please forgive us, but I had to do this. I am not stealing. This is not stealing'.” (Fidan, 27, female)
Concealment of HIV-positive identity was perceived to be against moral and/or religious beliefs. Phrases such as ‘I have never lied in my life’ and ‘I am what I am’ were recurrent in the narratives of the participants who expressed this opinion. The proverb Allah’ın bildiğini kuldan esirgemek (you shall not hide something that is known to God) was used to explain why they did not want to hide their HIV status. However, it is important to note that the majority of the participants who expressed these reasons for disclosure had some people in their lives, mostly some family members, from whom they hid their HIV status.
Another motive for disclosure, which is a type of selective disclosure, was expressed in relation to the management of physical health. According to the view exemplified below, disclosure is needed to facilitate adherence to treatment and self-care:
“First of all, I don't anyway lie to my family, to my mother and father anyway. Apart from that, I don't think I should tell everybody. And there is no need for that. Apart from them [my family], I have a couple of close friends [whom I have told]. I don't think that I would tell others. I mean, when you tell [everybody] you can get everything into a mess. You would tell your family because you use pills. You should share [this information] with them, you should do this for yourself. Because you have to stay away from infections, you have to have a good diet. But apart from that, I don't have to tell everybody.” (Zafer, 40, male)
5.4. Possible solutions to the dilemmas of disclosure vs. concealment motives Considering that violations of PLHIV’s rights in the workplaces and health institutions are the problems most frequently reported in Turkey and that these violations are rarely penalised, it is not surprising that there is a felt requirement for concealment due to the fear of discrimination. It is seen that apart from causing isolation and loneliness, non-disclosure creates a ‘moral’ conflict within the self when concealment is perceived as morally wrong and disclosure is perceived as required for educating others. The narratives demonstrated that this discomforting moral conflict could be solved in two ways; by influencing others stealthily and by defending the ‘right to conceal’.
Some of the participants explained that they aimed to influence the people in their close social environments by giving them correct information about HIV/AIDS and trying to break their prejudices towards PLHIV. The most frequently mentioned way of influencing others’ opinions was interrupting conversations among family and friends about a topic relevant to HIV/AIDS without making their HIV status explicit. For example, when the family or neighbours are watching television together and commenting on a news item about HIV/AIDS, the person living with HIV contributes to the conversation by correcting the information given or the language used in the news; such as ‘Yes, but I heard that [PLHIV] don’t look like that, they don’t die that easily anymore – there is a treatment now’. When prejudices are expressed in a conversation, such as a statement that people with HIV/AIDS deserve to be ill because of their immoral behaviour, one way of breaking the prejudices was to state: ‘But I’ve heard that there are other ways of transmission; what about innocent housewives and babies?’
Participants who tried to influence the people around them were careful not to go too far, to avoid arousing curiosity about how or why they have such information or opinions. They tried not to attract suspicion about their own health or sexual identity. They generally said that they had read or heard the information somewhere and did not mention that they knew somebody who has HIV. If they thought HIV or sexuality-related issues would be difficult for the people in question to tolerate, they chose to talk about the right to health or the wrongness of discriminating against different people in general. One of the participants, a high school teacher, explained:
“You need to look at humans, as isolated from any kind of labels. (...) This is what I try to teach the children. But, I wish I felt so powerful that I could say HIV-positive or AIDS or.. (...) I wish I could say these. (...) I can't use [the power of my profession] efficiently, not yet. It's because of my own fears. (...) I mean, first of all I should be personally ready for that.”
As mentioned previously, defending the ‘right to conceal’ emerged as another possible way of managing the discomfort created by the conflicting motives and needs for disclosure and concealment. By law, PLHIV are not obliged to disclose their HIV status13. A review of the rights-related statements of participants revealed that this ‘right not to tell’ was emphasized by the participants, especially by those who were in close contact with an NGO. Although the human rights language could have been provided by the NGOs, this does not mean that PLHIV were advised by NGOs to conceal their status; the peer counsellors and professionals did not want to influence PLHIV’s decisions, as observed throughout the research.
As a final remark, it should be noted that disclosure-related motivations may also be interpreted in terms of different personal ideas about the incorporation of HIV into self, and should not necessarily be understood as an absolute cause of ‘dilemma’. PLHIV’s reluctance to disclose their status could have many reasons, as mentioned earlier. However, when it comes to public disclosure, i.e. being publicly open outside family, social and work environments, data suggested that people’s views about the extent to which one should take her/his HIV-positive status as a part of their ‘social identity’ might be behind their disclosure decisions. Especially the participants who were actively involved in HIV-related support and advocacy expressed two different perspectives on this issue: On one hand,
13 Usual proper standards of good infection control, i.e. 'universal precautions’ that should be taken
any in healthcare setting, and safe sex practices are considered to be the most effective way of minimizing the risk of transmission (for details see http://www.aidsmap.com/.)
some were opposed to incorporating HIV into the self as a ‘central’ component or a ‘master’ identity. For example, a participant, who was actively involved in advocacy for years, expressed that he did not want to make HIV ‘the subject’ or an ‘aim in itself’ in his life. On the other hand, some other activists stated that ‘normalisation’, in the sense of ‘taking pills and resuming life’, could prevent PLHIV from actively fighting HIV. They argued that PLHIV must take responsibility and become more ‘visible’ to be able to fight both for their own and other PLHIV’s lives.
6. Discussion and recommendations
Overall, the narratives about disclosure and non-disclosure suggested that fears about the obstruction of healthcare, the loss of work and the exposure of family and friends to the HIV stigma are behind the concealment of HIV status, despite strong motivation for disclosure. These motivations can be summarised as a) felt psycho-social need to ‘share’, b) felt responsibility for ‘protecting’ others c) the need to maintain a positive self concept in terms of ‘honesty’ and d) facilitation of adherence to treatment and self-care.
These motivations are parallel with previous findings in the literature that were summarised earlier. The first motivation can be understood in terms of an ‘emotional catharsis’ (Valle and Levy, 2009), which is considered as an expected benefit of disclosure. The need to ‘share’, as a way of emotional relief, can be rooted in cultural values, as also exemplified by the participant’s statement presented before. Yoshioka and Schustack (2011) for example, found that the common cultural reluctance to share personal information was an ‘additional self-imposed barrier to disclosure’ for Asian PLHIV. Participants’ narratives in this research suggested that in contrast, the cultural need to share can be an additional motive for disclosure in Turkey.
The second and third motives mentioned above were explained by the participants within a framework of ‘morality’. ‘Moral responsibility’ was the main theme in the narratives around the felt requirement of being ‘honest’, either for protecting others or basically because ‘lying is not good’. In this sense, the aim of protecting others cannot be simply described as an ‘others-focused’ (Ssali et al., 2010; Masupe et al., 2012) reason for disclosure, since it is also related with maintaining a positive self-concept.
The results revealed that the discrepancy between the felt moral problem of concealment on one hand and the requirement for concealment on the other is an important source of discomfort for PLHIV. Two ways of dealing with this felt moral problem were found:
Trying to change/educate others indirectly and using the ‘rights’ discourse as a source for defending the concealment behaviour. These can also be understood as some ways in which PLHIV assert ‘agency’ in ‘managing’ stigma and thus contribute to a more comprehensive understanding of stigma management strategies that does not see PLHIV as ‘passive’, ‘hiding’ victims of stigmatisation.
Parallel to this study’s findings about PLHIV’s attempts to change others around them, Klitzman and Bayer (2003, cited in Paiva et al., 2011) also found that PLHIV educate others on the need for protection against HIV, without disclosing their HIV status. However, they defined this strategy as a way of ‘indirectly communicating’ one’s status. Although some of the participants of their study found this behaviour ‘morally unacceptable, a half-lie’, other participants thought that these ‘veiled messages met the moral imperative of communicating seropositive status’.
As mentioned earlier, the right to conceal one’s HIV status was the right most referred to in the participants’ narratives. A human rights based approach to HIV/AIDS is currently acknowledged and used widely, both by governments and NGOs, and is considered to be the most effective way of preventing the epidemic (International AIDS Society, 2010; Pozitif Yaşam Derneği, 2009). The main argument of this approach is that the enhancement of human rights could secure an environment where all citizens – regardless of whether they are part of a sexual minority, a young woman, a child, impoverished, immigrant, disabled or a prisoner – can access sexual and reproductive health-related information, materials and treatment.
In this context, the prioritisation of the right to concealment by the participants of this study can be understood by considering the facts that currently there is not any legal framework designed to ensure anti-discrimination against PLHIV in Turkey and that there is inaction at the governmental level despite advocacy activities on this issue. This can be linked to the deprioritisation of the epidemic in Turkey, which is a result of the attribution of the epidemic to ‘foreign’ sources and the neglect of some populations (such as homosexuals, sex workers, drug users) and behaviours (such as sex out of wedlock) in the country. In this context of perceived insecurity, injustice and neglect14, even strong motives for disclosure cannot result in sharing one’s status with others, since PLHIV cannot rely on
14 The ways in which these feelings of injustice and neglect are constructed in participants’
a legal mechanism that would protect them against discrimination in workplaces, educational institutions, health institutions and in social life, in case they disclose their status.
Nevertheless, this paper does not aim to argue that non-disclosure can be explained solely in terms of the fear of discrimination. As emphasized previously, disclosure decisions should also be understood in relation with the desired ways of maintaining a social identity. Participants’ different opinions about the extent to which HIV ‘should’ be incorporated to the self demonstrated that, as Bond also suggests, non-disclosure can be ‘an attempt at normalcy, a reflection of the inability to live life continually in crisis mode, and, a need for ‘time out’. As mentioned earlier, some activists’ decision not to disclose their status in every context cannot be explained only in terms of protection from stigma. Limited disclosure of HIV status is also about ‘respect, privacy and a need for a wider identity’ instead of an identity fixed as a PLHIV (Bond, 2010, p.11).
In conclusion, it is seen that disclosure is a complex area, which is not only related with social-psychological and health-related needs but also shaped by the existence of cultural and legal frameworks that could offer protection from discrimination, and is a field of ethical discussions in terms of human rights and public health. In this sense, there are some policy recommendations that should be addressed here. As Ssali et al. (2010) also argued, identification of the motives and behaviours for HIV status disclosure is important for the development of more effective policies seeking to ‘promote safe disclosure decisions, positive disclosure outcomes and secondary prevention of HIV’.
First of all, considering the relationship between disclosure to sexual partners and prevention of further transmission of HIV, if we anticipate any positive impact (that the partner would be encouraged to practice safe sex and go get tested for HIV), we need appropriate testing centres. Therefore, voluntary counselling and testing centres, that are common in many countries, should be opened in Turkey, so that people can apply for an HIV test without fear of discrimination. The counselling service offered in these centres can also be beneficial in terms of providing people whose test results are positive with useful social skills for disclosure.
Secondly, as emphasized several times above, a protective legal framework is needed to ensure that PLHIV who disclose their HIV status are not faced with partner violence or
institutional discrimination. Such a framework can at least guarantee that the perpetrators are penalised.
With regards to disclosure of HIV status to healthcare providers, which was seen as an important ‘moral responsibility’ by some of the participants of this research, discrimination in healthcare settings should be eliminated. With this aim, more comprehensive training on HIV/AIDS and medical ethics can be provided to healthcare professionals. Another issue about healthcare providers is about the previously mentioned dilemma (confidentiality principle vs. partner notification) faced by infection specialists offering treatment and care to PLHIV. Proper partner notification policy and guidelines, as used in many other countries, can be helpful in this sense.
Turkey does not have a comprehensive HIV/AIDS policy framework including systematic counselling, testing and partner notification strategies. The need for the development of such a policy, which ought be based on human rights, is evident.
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