Stigmatization, discrimination, violation of autonomy and compromised confidentiality: Lived experiences of people living with HIV on the onset of their illness in Turkey


 Background: It’s known that people living with HIV (PLWH) are subjected to stigmatization and discrimination while accessing healthcare services. The purpose of this study is to understand the perceptions of PLWH in Turkey, about whom there are limited data on how their lives are affected by such experiences. Methods: Semi-structured interviews were carried out with 20 people, and the obtained data were analyzed thematically.Results: The results highlighted the following themes: problems with patients’ autonomy, failure to protect patients’ confidentiality and personal health data, spouse/partner notification issues, and stigmatizing and discriminatory attitudes intrinsic to healthcare professionals’ approach. The attitudes of healthcare professionals and health institutions negatively influence the utilization of healthcare services by PLWH. Conclusions: We have argued the necessity to raise the healthcare professionals’ and the society’s knowledge and awareness, and develop national policies that would contribute to structure partner notification services and prevent HIV-related discrimination and stigmata.


Background
Since its first emergence in the early 1980s, Acquired Immune Deficiency Syndrome (AIDS) cases have spread across the world regardless of any age, sex and/or geographical boundaries.
As a continuing community health problem (1), the disease has occasionally been a topic of discussion on the public agenda in terms of the problems faced by people living with Human Immunodeficiency Virus (HIV) while trying to access healthcare services and facing HIVrelated discrimination and stigma. In time, such attempts have paved the way to restructure public health policies to a certain extent (2,3). Nevertheless, the ethically unjustifiable cases that persevere to this day have caused the debates on attitudes towards people living with HIV (PLWH) to gain an ethical dimension.
The financial and emotional burden that HIV/AIDS lays upon a person differs from other transmissible and chronic illnesses (4). For instance, one can be fired from their job for being an HIV carrier or having AIDS, and this poses a big financial challenge to that person. In addition, being subjected to discrimination both in health institutions and social spheres imposes an emotional burden on the person, which might cause them to refuse treatment and thus put their physical and psychological health at risk. Moreover, the fact that this illness was mostly observed in men who have sex with men (MSM), sex workers, and intravenous substance abusers in its early years is the main cause of the prevailing biases towards PLWH (5,6).
The studies and campaigns such as 90-90-90, Fast Track and Undetectable=Untransmittable have led to significant progress in terms of raising public awareness and prevention of the epidemic (7, 8). Turkey is one of the countries where the prevalence of HIV is low. However, the recent data of the Ministry of Health (MoH) have shown that its prevalence is surging and people with HIV are getting more and more visible in society (9, 10).
In many countries, PLWH are subjected to HIV-related stigma and discrimination (11,12,13). Although Turkey has a similar trend (14,15), there are few studies on PLWH's perception of their diagnosis and treatment, their relationship with healthcare workers and other professionals, and their experiences in healthcare environments. The present study aims to rectify that gap in knowledge; its design was based on the premise that an ethical discussion of such findings is necessary. The study has focused on the PLWH's lived experiences that will provide an insight on how their perspectives on their illness is influenced while receiving healthcare service, how their sense of self is influenced after being labeled as "ill", and how the relationship with their immediate circles, their thoughts about their social status, and their lives are influenced and after being diagnosed with HIV.

Participant Recruitment
A PLWH group constituted the research population. The ones aged over 18 and living with HIV for more than a year were included in the study. Living with HIV for more than a year was determined as a recruitment criterion because we expected our participants to have gone through the time-consuming processes of testing, diagnosis and onset of the treatment during which patients face more problems. The rationale behind this preference is that we expected them to have reached a certain phase of the illness where they can look at their experiences from a distance without having to deal with the initial difficulties such as receiving bad news, adapting oneself to an unexpected and/or shocking situation, and etc. In total, 20 people were interviewed (19 in person, and 1 via Skype) between 18 th October 2017 and 29 th April 2018.
First of all, the Human Resource Development Foundation 4 , Pozitif-iz Association 5 , and physicians specialized in clinical microbiology and infectious diseases, who are working on HIV/AIDS, were contacted to reach PLWH volunteering to participate were included in the study. In addition, the snowball sampling method was used to contact other PLWHs that met our criterion. Informed consent was obtained from all individuals who agreed to participate in the study.

Data Collection
The researcher conducting the interviews (GS) contacted the participants directly and performed the interviews face-to-face. Only one of the participants preferred to be interviewed via Skype. An interview guideline form was used for the interviews. The interview questions, which sought information about the participants' demographic data, knowledge, experiences, emotions, and actions, were as follows: • Can you talk about yourself?
• Did you have any information about transmittable diseases before being diagnosed with HIV?
• How did you find out you were infected with HIV? 4 It is a non-profit, non-governmental organization that contributes to the solution of health, education and employment problems which have a negative effect on the economic, social and cultural development of human resource (16). 5 It is a non-governmental organization that aims to strengthen PLWH and their families in physical, psychological and social aspects (17).
• Did you take HIV testing on your own will?
• How did you find out you were positive after the tests were verified?
• How were you notified?
• How did you feel after the physician notified you?
• What were the treatment processes after your diagnosis?
• Was your partner with you at that time, were they notified of the test results?
• Did you want to tell it to your immediate circle, what was their reaction?
• What reaction do you get when you go to a hospital for a health problem?
• What do you expect from healthcare institutions?
• Do you want to add anything else?

Data Analysis
First of all, the voice-recordings taken during the interviews were transcribed verbatim, and each participant was assigned a code. The transcriptions were rough-read, and then, the statements made in response to the key questions in the interview guideline form were extracted and clustered. The key concepts given as a response to a specific question were dealt with according to their corresponding themes, and this process was repeated back-andforth for a couple of times. It was investigated whether the themes in the theme list were specified under the same or different questions and the concepts classified under those themes could be grouped as main themes; moreover, whether it was possible to make a new clustering for these themes. The research team discussed the themes, questioned/interpreted the semantic relations between each theme, and organized the themes into a table which comprises the context, main themes, sub-themes, and codes (Table 1). One of the difficulties we faced in this study was to reach PLWH. This stemmed from their wish not to disclose or share their HIV status. Therefore, we gave utmost attention to make sure that the participants did not feel nervous or did not have a feeling that they were being prejudiced.

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Another limitation of the study was that the data obtained from the two married couples participating in our study might have been affected since they had wanted to be interviewed together. It was observed that the male participants could not express their feelings openly in the presence of their spouses. Nevertheless, respecting their request, we conducted the interviews as they wished.
The research technique also posed a limitation to the study. One of the participants was disturbed by the use of voice recorder, and only after it was turned off did he share some valuable information. Hence, the participants' responses were noted after voice recording, as well.

Participants
Aged between 27 and 55, research participants have a variety of social status profiles. The majority of them are single and in contact with the NGOs working on HIV. Since the focus of the research was PLWH's experiences in their HIV diagnosis and treatment processes, the participants' sexual orientation was not questioned, and their biological sex was taken into account. The number of male participants was significantly higher than that of female ones.
However, the distribution of our participants by gender was in line with the data on the distribution of PLWH in Turkey by gender 6 .
The type of health insurance that our participants benefit from varies. All of the participants asserted that they do not use their private health insurance for HIV treatment since this type of 9 insurance does not cover HIV treatment and/or insurance companies can notify their employers of their HIV status. One of the participants was a foreigner and did not have any health insurance (Table 2).  Table 3:

The Process of Breaking Bad News
It can be deduced from the participants' statements that they had negative impressions and feelings when healthcare professionals told them the bad news, which in their case, was being diagnosed with HIV.
Being Informed about the Diagnosis: The majority of the participants stated that they were tested for HIV without their knowledge when they went to the hospital for other health problems or to get health reports required before marriage. Moreover, they asserted that they were not informed about preliminary test results when they were asked to give a blood sample for a verification test, and thus thought that healthcare professionals were withholding information from them.
"We need to redraw blood from you". And I asked why? They said they couldn't tell it at that moment. It was exactly like this. I said "You have to tell me because you requested me to come again. You want to draw blood, it's my right to know." In addition, notifying the patient on the phone, informing the patient immediately after diagnosis about the potential HIV-related problems, and discriminatory acts they might face was deemed as an inappropriate approach; breaking bad news in the presence of family members and not acting attentively while giving information were considered inattentive approach.

Being Diagnosed with HIV
Since the disease is prevalent among individuals subjected to discrimination in society, we assumed that this might have caused biases and anxieties in participants about HIV.

Participants' Feelings: It was seen that participants' main source of information about HIV
was the news on television and newspapers. Some of the participants stated that they had never thought they would have AIDS since it is a disease that homosexuals and sex workers have. On the other hand, the participants who did not share this opinion and those who had the proper knowledge on HIV tended to blame themselves as they failed to protect themselves. The participants did not want to acknowledge their condition for a long lime after the diagnosis, some even refrained from getting treatment. Moreover, due to the discrimination instances they had known ofin healthcare institutions, some participants developed a fear of rejection by the hospitals when they needed to undergo an operation.

Impact of HIV on Patient's Life
In this context, the main concerns of the participants were centered on whether to share their diagnosis with others or not, adherence to the treatment, decisions on sexual activity and issues about parenthood.

Changes Occurring in Patient's Life after Diagnosis: One important change in patients'
lives after diagnosis is ceasing sexual activity. In addition, participants tended to isolate themselves from social interactions both considering the possibility of being exposed to discrimination and because they did not know the modes of transmission of the virus. It's been about ten years since we last met. There wasn't any problem between us. In addition, the participants also stated that the physicians' certain behaviors caused them to feel bad and humiliated.

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Physicians' Relationship with the Patient: In this context, few of the participants stated that instead of making a mutual decision, they follow the doctors' orders to avoid any problem from occurring. One of them, for example, said he could not object to his doctor's request to take his photo just because he was a doctor.
He asked if he could take my photo, and I asked why. "As part of the follow-up; to keep record of your initial state, the treatment process, and afterwards," he said.
I asked if I was in a bad state at that time and why he put is as now, before and

PLWH's Relationship with Their Spouses/Partners
Since HIV is a sexually transmitted virus, it arises problems between the patients and their spouses/partners, which emerged as one of the main contexts in our study.

Spouse/Partner Notification After HIV Diagnosis:
As was stated by the participants, various methods were used for spouse/partner notification. Some of these methods were favored by them, while some influenced their relationship with their spouses/partners negatively.
The participants stated that they were pleased when physicians encouraged and supported them to notify their spouses/partners. They also appreciated when they informed their spouses/partners together with them. One of the problems expressed by our participants was the inability to do partner notification.
For example, single participants stated that they did not know exactly when they had been infected, and thus could not contact all their ex-partners. Moreover, the ones with multiple partners said they did not know the people they had had sexual intercourse with very well, so it was difficult to contact them. Besides, in addition to the shock of being diagnosed with HIV, there was an "infidelity" aspect in the case of married people. Therefore, they feared a possible breakdown in their marriage/relationship, which deterred them from notifying their spouses/partners.

PLWH's Experiences in the Healthcare Setting
The experiences of the participants on this theme were presented in two contexts, which were confidentiality and discrimination.
Failure to Protect Confidentiality: It was deduced from the statements of all the participants that their confidentiality was not protected in healthcare environments. One problem in this regard is the failure of the health system, health databases, and private health insurance companies to take the necessary precautions to protect the confidentiality of the personal data/information of people receiving service from them.

PLWH's Struggle with the Disease
The participants used a variety of coping strategies for the problems they faced in their diagnosis and treatment processes.

Discussion
In the present study, PLWH's perceptions of the healthcare services they receive was analyzed based on their lived experiences. In light of our findings, the discussion was centered upon the following themes: autonomy and getting informed consent, the impact of HIV on personal and social life, the right to privacy and private life, responsibility for third parties, spouse/partner notification, and discrimination and stigmatization in the healthcare setting. The context of this argument is societal determinants including the healthcare environment and the general perception regarding the PHWH in Turkey.
The majority of our participants found out that they had HIV when they went to the hospital for other health problems or to get medical reports required before marriage. In Turkey, HIV tests are administered in healthcare institutions and at volunteer testing and counseling centers (10,20). Nevertheless, the lack of general awareness and knowledge on its modes of transmission and preventative measures, and discriminating and stigmatizing attitudes and behaviors towards PLWH both in Turkey and other countries can be seen as the barriers to direct HIV testing and diagnosis disclosure (21,22).
In this context, the process of notifying the test results to patients is particularly highlighted.
Being diagnosed with HIV might have a shocking effect on individuals and lead to anger, sorrow, and fear in them even if they have already been suspecting it (23). Similarly, in our study it is inferred from the participants' statements that they experienced a sudden emotional trauma upon getting the bad news and thus could not make a rational evaluation of what physicians were telling them. They also said they did not get a satisfactory explanation or clear answers to their questions when they were asked to give blood samples for a verification test, which might have caused them to feel uncertain about their health condition and added to their fears and concerns. Some participants stated that they were notified of the diagnosis in the presence of their families or on the phone. However, any test result must be kept confidential between the patient and the physician, and delivered privately to the patient by the responsible physician, especially in cases where patients are likely to be subjected to discrimination, like in the case of PLWH (24).
Our findings suggest that the participants experienced a shock at this stage since the test was performed without their knowledge and the results were delivered to them without any accompanying counseling service. For example, according to the results of a survey study carried out by Gokengin et al. on PLWH in the cities of Istanbul, Ankara, and Antalya, it was demonstrated that 52% of the participants were tested for HIV without their prior knowledge and consent. Moreover, it was found in the same study that 77% of the participants were not offered any counseling service in the testing process, while 21% of them received it after diagnosis and 2% of them were offered such a service both before and after diagnosis (21).
Besides, the report issued by the Positive Living Association (PLA) regarding the violation of rights revealed that PLWH's rights in terms of informed consent and autonomy, confidentiality of private life and medical records, the right to health, and prohibition of discrimination have been violated, which, as was also stated in the report, stemmed from the preconceptions associated with HIV (25). Furthermore, the shortcomings in the healthcare system in Turkey, such as the restricted time allocated to patients, heavy workload of physicians, lack of professional experience in breaking the bad news to the patient, and lack of competence in communication and interpersonal skills might cause certain problems in informing and notifying the patient (19,26).

The guidelines specified by the World Health Organization (WHO) and the Joint United
Nations Programme on HIV/AIDS (UNAIDS) urge that HIV related services must adhere to 5Cs: consent, confidentiality, counseling, correct test results, and connection. In this respect, the confidentiality of the patients must be protected and they must be adequately informed and notified of the process for HIV testing and counseling, their right to refuse testing and/or treatment, and that self-testing is medically not safe. Then, their consent must be obtained for medical procedures (27). Nevertheless, to make HIV testing more widespread, self-testing kits that can be bought online or from pharmacies are used and there are centers that offer counseling service and HIV testing in many countries (28). In Turkey, self-test kits are sold online, though they have not been approved by the MoH. Besides, due to the lack of knowledge in the society as to the diagnosis, treatment, and modes of transmission of HIV/AIDS (29) as well as a shortage of HIV testing and counseling centers, patients are likely to be left without support against the problems they will face upon being diagnosed with HIV such as being subjected to societal discrimination and coping with the feelings of intensive anxiety and fear of being excluded (30,31). Some of our participants stated that their doctors referred them to the related foundations where they can receive counseling for such problems.
However, these volunteer foundations cannot reach all the people in need of such services.
Therefore, such services should be offered as part of public services at hospitals and other healthcare institutions so that they could be sufficient in number and service quality, and easily accessible for PLWH.
The participants highlighted the significant effect of the physicians' attitudes on their lives and treatment process. Their statements suggest that most of them had a good relationship with their physicians. Some participants, on the other hand, stated that their doctors did not inform them properly about their diagnosis and treatment processes; moreover, exhibited avoidant behaviors such as moving away from the patient during face-to-face encounters.
Similar to these findings, the studies conducted in other countries also demonstrated that the quality of the physician-patient relationship is a significant factor influencing a patient's desire to pursue treatment (32,33). For example, a study carried out in Baltimore revealed that strong communication between the physician and the patient plays an important role for engagement in treatment (34). An essential component of a healthy physician-patient relationship is the physician's ability to provide appropriate professional guidance to their patients. Therefore, it's imperative that the undergraduate and graduate medical education in Turkey cover subjects such as professional approach to vulnerable groups and communication skills to ensure that the physicians face their preconceptions on PLWH, improve their professional attitudes, and act for the good of the patient.
Living with HIV might pose a significant risk factor for a person's private life and psychological health (35). For instance, the conception that HIV is a disease of homosexuals and sex-workers have caused most of our participants to blame themselves and develop a fear of rejection and stigmatization, and thus to be reluctant to acknowledge their diagnosis. They stated that they had to make certain changes in their lifestyles, the most prevalent of which was ceasing all sexual activity. They also avoided close physical contact with people around them and separated their personal belongings from the ones living with them for fear of communicating the disease to them. Some participants did not share their HIV test results with the family or friends so as not to upset them and/or to prevent any possible discriminatory act. Struggling with this on their own might cause serious pressure on the patients. According to the findings of a mixed method study carried out on PLWH in Turkey in 2002, the biggest challenges PLWH face were being subjected to discrimination, sharing their HIV status with others, sexuality, and financial issues. For such problems they mostly used palliative coping strategies and developed anger (36). In another study conducted in Izmir, Turkey in 2018, in-depth interviews were performed with 27 PLWH, and the obtained results showed that the patients tended to keep their HIV status to themselves due to the existing discriminative and stigmatizing incidents in the society (37). Our findings were found to be in line with the results of these two aforementioned studies.  (21). The problem of not respecting the confidentiality of personal data is prevalently witnessed in other counties as well, especially in the case of PLWH (38,39,40,41). In a study conducted in African counties, for example, the participants asserted that healthcare professionals shared their HIV test results with their families (42). Considering that physicians in Turkey have difficulty breaking the bad news to patients and thus prefer to notify their families (43) and that there is no regulatory framework on this issue, further largescale studies both on the experiences of PLWH and healthcare professionals need to be conducted in Turkey to reach an absolute conclusion.
In addition, some participants stated that their health insurance companies shared their HIV test results with their employers. Some of them said they did not use their private health insurance for HIV treatment fearing that they might be fired them once these companies disclose their HIV status to their employers. Although it is not a legal obligation, most employers in Turkey require HIV testing from their applicants as a pre-requisite for recruitment (44), and in that case, the workplace physician or the health insurance company have the authority to notify the employer with the applicant's consent. Such a procedure aims to allow the employer to take the necessary precautions in the workplace (45). However, the basic problem this causes to an employee living with HIV is the risk of being fired after their HIV status is disclosed. In a previous study where the problems PLWH face in the workplace was investigated, it was found that PLWH lose their jobs and are unable to find other jobs due to their HIV status (44). Most counties have various legislative regulations to prevent the discrimination PLWH experience in their workplaces (46,47). Although there are no such regulations in Turkey, PLWH have the right to work just like other citizens (48). should be no discrimination against PLWH in the workplace, and employees with HIV should be able to work as long as they are medically fit (49).
Outside of the healthcare institutions, the use of personal health data by employers, payment providers, and health insurance companies is acceptable as long as they serve a useful purpose such as meeting the needs of the patients, improving the healthcare system and protecting public health. However, for sensitive groups, it brings about problems in terms of protection of confidentiality and arouses questions as to with whom and to what degree such data be shared (50). As of 2003, with the implementation of the Health Transformation Programme, the private sector has played a bigger role in the delivery of health care services (19), and personal health data has been collected by the MoH, Social Security Institution, and private health insurance companies. As a result of this, the rate of the healthcare services provided by private companies has increased, which poses the risk of usage of health data for commercial purposes. This makes personal health data accessible to third persons and paves the way for their disclosure at the national and international levels (51). Similar examples have been reported in the literature (52,53). In a study carried out on people with chronic diseases in South Ontario, for example, the participant PLWH group was found to be more concerned about privacy due to the fear of HIV-related stigma (54). It can be deduced from these findings and examples that the failure to protect confidentiality causes problems to PLWH in their access to healthcare services as well as in the workplace. To eliminate discrimination and related problems, legislative regulations can be introduced and campaigns aiming to raise awareness on the issue might be organized.
On the other hand, PLWH's wish not to disclose their personal data and thus keeping their spouses/partners or persons they have sexual interaction with uninformed about the risk that they pose on them causes an ethical dilemma (55). This is also important for the physician who understands the potential harm that it would cause to the patient and their partner spouse/partner (56,57). Although partner notification (PN) can be a life-saver for people facing the risk of being infected with HIV, it constitutes certain obstacles for the physicians and their patients that hinder its practice. For example, the lack of any legal framework on this issue might compel physicians to make personal decisions by acting at their own discretion (48). In a state hospital in Turkey, PLWH are given an informed consent form for PN. First, they are verbally informed that they need to notify their partners. If the PLWH do not inform the physician that their partners have taken an HIV test, they are given a written warning reminding them of the need to notify their partners and stating that they can provide them psychiatric support in this process and their partners will get a medical notification unless they respond to the form (58 The participants stated that they faced rejection or met with excessive precautions when they went to a hospital for another health problem. They deemed such behaviors as a form of discrimination. Likewise, it was reported in a study conducted in South China that almost half of the PLWH participating in the study were subjected to discrimination in healthcare environments and thus refused to benefit from healthcare services (66). In a study carried out in Kazakhstan, it was found that PLWH experience denial of services by healthcare professionals and tend to avoid healthcare professionals due to such perceived negative attitudes (67). Another study conducted in the Netherlands revealed that PLWH have negative experiences in their interactions with healthcare professionals such as being exposed to irrelevant questions, impolite behavior, blaming, excessive or irrelevant precautions, care refusal, unnecessary referrals, delayed treatment, and violation of confidentiality (68). There are also studies in Turkey which demonstrated the stigma and discrimination in the healthcare setting both on institutional and individual levels against PLWH (15,21,69). The report issued by the PLA regarding the violation of rights revealed that PLWH are subjected to discrimination mostly in healthcare environments, the necessary medical care is not given to them, and their right to health is impeded (25). In a study, where healthcare professionals' attitudes were examined, it was found that preconceptions and the lack of knowledge on the modes of transmission and prevention was high among all participants, and 50% of the participants stated that they did not want to follow-up PLWH (70).
In the light of these findings and considering the increasing number of HIV cases in Turkey, it can be said that it is crucial to develop curricula for medical and other health faculties so that they cover the content of professional approach towards PLWH to prevent discrimination in healthcare environments against them. Especially HIV-related stigma and discrimination in the healthcare setting cause challenges to PLWH in their access to healthcare services and thus pose risks to their health status. To prevent possible miscellaneous harms from occurring, the current regulations on patient rights must be put into effect. As was deduced from our findings, people benefiting from counseling services tend to take action to pursue their rights when faced with a problem. As a response to their pursuit, campaigns on raising PLWH's and their families' awareness must be held and centers that would provide country-wide professional counseling services should be established.

Conclusions and suggestions
In light of the findings obtained in this study, the perceptions of PLWH regarding their lived experiences during and after HIV diagnosis were investigated. Our results demonstrated the participants' thoughts on issues such as not getting informed consent of PLWH before HIV testing, breaches on the protection of confidentiality and privacy, problems in spouse/partner notification, and PLWH's being subjected to discrimination and stigma from healthcare professionals and institutions. Moreover, the magnitude of such problems and their prevalence in Turkey remain tentative. The poignancy of the obtained results emphasizes the need for further studies representing the whole universe to be carried out on a larger scale.
Within the scope of our findings, we suggest developing and implementing informative and/or educational campaigns to raise public awareness and to increase people's knowledge of the issue. Besides, to encourage individuals to take volunteer testing, pre-and post-testing counseling services designed in line with the international guidelines should be easily accessible for individuals and the number and quality of such services in hospitals and other healthcare institutions should be increased. It is essential that precautions are to be taken to protect PLWH's personal health data against their improper accessibility by the third parties.
The development and enforcement of a legal regulatory framework for PN would ease the burden of responsibility that both physicians and patients experience. In the fight against discriminatory and stigmatizing attitudes in healthcare environmentsa problem frequently expressed by our participantsall healthcare professionals should be given professional training, and in case of any negligence, the necessary efforts to make up for such acts should