In the present study, we analyzed PLWH’s perceptions of their relationships with healthcare professionals, family members, and friends as well as their accounts of the changes in their lives based on their lived experiences at the onset of their illness. In light of our findings, we centered the discussion on the following themes: autonomy and obtaining informed consent, the right to privacy and private life, discrimination and stigmatization in the healthcare setting, the impact of HIV on personal and social life, responsibility for third person and spouse/partner notification.
The majority of our participants found that they had HIV when they went to the hospital for other health problems or to get the medical reports required before marriage. Our findings suggest that the participants experienced a shock at this stage because the test was performed without their knowledge and the results were delivered to them without any accompanying counseling services. In both Turkey and other countries there seem to be several barriers against HIV testing and diagnosis. Due to the lack of general awareness, knowledge in the society, the stigmatization of PLWH, the shortage of HIV testing and counseling centers, patients are likely to be left without support as they face problems such as societal discrimination, anxiety, and marginalization [43,44,45,46].
According to the results of a survey carried out by Gokengin et al. (2017) on PLWH in the cities of Istanbul, Ankara, and Antalya, 52% of the participants got tested for HIV without their prior knowledge and consent. Further, 77% of the participants were not offered any counseling services during the testing process while 21% received it after diagnosis and 2% were offered such a service both before and after diagnosis [38]. In another study, the authors conclude that individuals taking voluntary HIV tests is crucially important for both the patient and the community [47]. However, there are obstacles to fulfilling this objective. 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 disclosing the diagnosis to the patient, and lack of competence in communication and interpersonal skills may create certain problems in informing and notifying the patient [42, 48]. Research suggests that the quality of the physician-patient relationship is a significant factor influencing a patient’s desire to pursue treatment [49,50,51]. The participants highlighted the significant effect of the physicians’ attitudes on their lives and treatment processes. Their statements suggest that most of them had a good relationship with their physicians. Some participants, however, stated that their doctors did not inform them properly about their diagnosis and treatment plans; moreover, they exhibited avoidant behaviors. Since such difficult conversations are a form of disclosing the diagnosis, the physician should take adequate time to talk to the patient and should do so in person unless there is an obstacle precluding this option. Second, for the same reason, the physician should not give all of the information to the patient at once but, rather, wait for her to digest the bad news before continuing with further details [52]. An essential component of a healthy physician-patient relationship is the physician’s ability to provide appropriate professional guidance to their patients. PLWH suffer from being subjected to intersectional stigma, “a concept that has emerged to characterize the convergence of multiple stigmatized identities within a person or group, and to address their joint effects on health and wellbeing” [53], p:1). In the case of PLWH, physicians are expected to be aware of this phenomenon and approach patients accordingly. For improved communication between the physician and the patient, it is imperative that undergraduate and graduate medical education in Turkey covers subjects such as a professional approach to vulnerable groups and communication skills to ensure that the physicians confront their preconceptions of PLWH [53]. This is important not only to facilitate physicians’ awareness of their attitudes contributing to or reinforcing the intersectional stigma but also to facilitate their ability to help their patients cope with being diagnosed as PLWH and the illness in a supportive and protective manner.
The majority of the participants stated that healthcare professionals notified their employers, families, and friends of their HIV status without their prior knowledge or consent. Similar results were reported in a survey conducted by Gokengin et al. (2017). While 43.9% of the participants said they were sure that their HIV status had been disclosed to another person and institutions by healthcare providers without their consent, another 30.6% of them had suspicions in this regard [38]. Not protecting the confidentiality of personal data is frequently observed in other counties as well, especially in the case of PLWH [54,55,56,57]. Informing the patient’s family about the diagnosis without the patient’s consent is against the principles of respect for patients’ autonomy and protection of their privacy. However, there is no legislation regulating how family members should be informed in such cases [58].
In addition, some participants stated that their health insurance companies shared their HIV test results with 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 [13, 59]. It is known that PLWH feel threatened at work, are harassed in the workplace, and even get fired after diagnosis. In addition, practices such as not employing such people, and forcing them to resign burden them with economic problems and social dilemmas. Moreover, there are cases where PLWH quit their jobs due to negative social reactions, stigmatization, discrimination, and guilt [60]. In a study investigating workplace problems that PLWH face, it was found that once PLWH lost their jobs, they were largely unable to find new jobs due to their HIV status [13]. According to another study, the employability of PLWH was significantly linked to age, time since diagnosis, illegal drug use record, and cluster of differentiation 4 (CD4) counts. Younger PLWH are more likely to be involved in the workforce. PLWH’s employability was not substantially linked to education level [61]. Most counties have various legislative regulations to prevent the discrimination of PLWH in their workplaces [62, 63]. According to the code of practice specified by the International Labour Organization, there 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 [64].
Outside of 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 the protection of confidentiality and arouses questions as to with whom and to what degree such data should be shared [65]. As of 2003, with the implementation of the Health Transformation Program, the private sector began to play a bigger role in the delivery of healthcare services [42], and personal health data have been collected by the MoH, the Social Security Institution, and PHI companies. As a result, the rate of 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 a third person and paves the way for their disclosure at the national and international levels [66]. Similar examples have been reported in literature [67,68,69]. Patients should be informed of what information is recorded and what protection is available to prevent the disclosure of this information. Some of our participants stated that their physicians referred them to the foundations where they could receive consultancy for such problems. However, NGOs may not be able to reach all such people at the same time. Therefore, such services should be offered as part of public services at hospitals and other healthcare institutions.
HIV-related stigma within the healthcare setting is known to influence the utilization of avoidance and treatment administrations [70]. The participants stated that they faced rejection or were met with excessive precautions when they went to a hospital for another health problem. They deemed such behaviors a form of discrimination. Likewise, it has been reported in studies conducted in different countries that the participant PLWH were subjected to discrimination in healthcare environments and thus refused to seek healthcare services [71,72,73,74]. There are also studies in Turkey that demonstrated the stigma and discrimination in healthcare settings at both institutional and individual levels against PLWH [34, 38]. The report issued by the PLA regarding the violation of rights revealed that PLWH are subjected to discrimination primarily in healthcare environments, they are not given the necessary medical care, and their right to health is impeded [75]. In a study which examined healthcare professionals’ attitudes, it was found that preconceptions and a lack of knowledge of the modes of transmission and prevention were high among all participants, and 50% of the participants stated that they did not want to follow up with PLWH [19].
Living with HIV may pose a significant risk factor for a person’s private life and psychological health [76]. Since the disease is prevalent among individuals subjected to discrimination in society, such as sex workers, and drug users, as per interviews with the participants that this may have led to biases and anxieties in them regarding HIV. In this context, the process of notifying patients of the test results is particularly highlighted. Being diagnosed with HIV may lead to confusion, anger, sorrow, and fear in individuals, even if they already suspected it [77]. Similarly, in our study, the participants experienced a sudden emotional trauma upon receiving the diagnosis and thus could not rationally evaluate what the physicians were telling them. For instance, the belief that HIV is a disease of homosexuals and sex workers caused most of our participants to blame themselves and develop a fear of rejection and stigmatization, making them reluctant to acknowledge their diagnosis. Struggling with the lifestyle changes caused by the disease, such as ceasing all sexual activity, avoiding close contact with people, and not being able to talk about their HIV status with their families or friends on their own, may put serious pressure on the patients. According to the findings of a mixed method study carried out in Turkey in 2002, the biggest challenges PLWH faced were being subjected to discrimination, difficulty in sharing their HIV status with others, impaired sexuality, and financial issues. In the face of such problems, they mostly used palliative coping strategies and developed anger [39]. According to another in-depth interview study conducted with 27 PLWH in İzmir, Turkey, in 2018, the patients tended to keep their HIV status to themselves due to the discriminative and stigmatizing incidents in society [78]. Our findings are in line with the results of these two studies.
It is known that PLWH are mostly willing to share their HIV status with their partners and their family members to gain emotional support from them, as well as taking precautions against transmission [39, 79]. Considering that PLWH should be able to decide when and how their close circle should be informed of their diagnosis and that they might actually need the support provided by their family members and friends, the experiences of PLWH and healthcare professionals regarding conversation about the diagnosis should be further studied. A deeper understanding of the conditions and needs of both parties might inform efforts to produce guidelines and/or regulations on notifying patients’ social spheres.
Since HIV is a sexually transmitted virus, problems arise between the patients and their spouses/partners. It is ethically problematic that the PLWH desire not to disclose their personal data and thus keep their spouses/partners or persons they have sexual interaction with uninformed about the risk that they pose to them [80,81,82]. Although partner notification (PN) can save the lives of 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 [4]. In public hospitals 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 be provided with psychiatric support in this process and that their partners will receive a medical notification if they do not respond to the form [58]. The legal regulations applied to this issue vary across regions in countries. Some countries have legal obligations that enforce PN, others have regulations making it an optional procedure, and some do not have any regulations [83, 84]. In Turkey, people are prosecuted under general legal provisions in such cases [85]. However, rather than trying to prevent HIV transmission by prosecuting PLWH for transmission of the virus, governments should prioritize developing programs that have been proven to be effective in reducing HIV transmission and allocating resources for this matter. In this way, not only would the dilemmas that PLWH face would be solved but the HIV-negatives’ health would also be protected.
In light of these findings and considering the increasing number of HIV cases in Turkey, we think that it is crucial to develop curricula for medical and other health faculties to ensure that they take a professional approach toward PLWH to prevent discrimination against them in healthcare environments. In particular, HIV-related stigma and discrimination in the healthcare setting cause challenges for PLWH in regard to their access to healthcare services and thus pose a risk to their health. To prevent possible miscellaneous harm from occurring, the current regulations on patient rights must be put into effect. As deduced from our findings, people benefiting from counseling services tend to take action to pursue their rights when faced with a problem. In response to their pursuit, campaigns to raise PLWH’s and their families’ awareness must be conducted and centers that provide country-wide professional counseling services should be established.
Research limitations
One of the difficulties we faced in this study was in reaching PLWH. This stemmed from their wish to not disclose or share their HIV status. Therefore, we paid utmost attention to ensuring that the participants did not feel nervous or prejudice directed at them. Overall, we do not think that they experienced such feelings because the participants who were not related to an NGO conveyed that they felt relieved talking about such issues with the interviewer, as they usually hesitated to do so with others. Furthermore, some participants whom we had contacted via an NGO expressed that the interviewer could call them later if any more information was needed. The interviewer also asked every participant whether they were disturbed by any of the questions or behaviors immediately after the interviews.
The participants who were associated with an NGO seemed more aware of their rights and were more eager to protect them than those who were not. Further, they were more at ease with receiving support and consultancy from the NGOs with which they were associated. However, many participants in the latter group independently told the interviewer that they had previously shared their situation with very few people. In addition, the experiences of PLWH in Istanbul and of those in other Turkish cities may differ significantly. Istanbul is known to be a modern cosmopolitan city where most people can express their identities explicitly, whereas in many other relatively small cities, this may not be the case. PLWH may encounter more severe stigmatizing and discriminative attitudes, which may originate from the predominant conservatism in smaller provinces.
Another limitation of the study was that the data obtained from the two married couples who participated in our study might have been affected since they wanted to be interviewed together. It was observed that male participants could not express their feelings openly in the presence of their spouses. These two couples were together in pairs during all diagnosis and treatment processes, and they reminded each other of incidents they thought would be good to mention during the interview.
We considered that people might be hesitant to talk about sexual preferences in Turkey. We chose not to ask questions related to this issue so that the communication between the interviewer and the participant was not hampered and was carried out smoothly. This may have affected the data obtained to some extent.