Introduction

There is still growing concern over the rise in new cases of HIV diagnosed in the European Union (EU), as stated by the European Centre for Disease Prevention and Control (ECDC) [1]. In Belgium there are about 25,879 people living with HIV/AIDS and about 4,550 of the 13,352 patients receiving care are sub-Saharan African (SSA) migrant women. Men having sex with men and SSA migrants are the main groups with a high prevalence of HIV. In 2012, an estimated 1227 new HIV diagnoses were registered in Belgium, of which about 354 diagnoses were in SSA migrant women [2]. It is possible that HIV infection may have occurred outside Belgium, with the positive test results being received in Belgium. According to Belgian law, voluntary testing is the norm but in certain conditions it is very difficult to refuse or avoid testing. This is the case, for example, for asylum seekers. People living with HIV and on combined antiretroviral therapy (cART) are now able to live normal lives after their initial diagnosis. Whereas HIV was very virulent from the early 1980s onwards, the use of combined antiretroviral therapy (cART) has now turned HIV into a chronic but treatable disease [3].

Generally people with chronic illnesses like diabetes, mental illness, asthma and hypertension have to learn to incorporate the management of their illnesses into their daily lives. As patients of chronic diseases comprehend their diagnosis, they are at the same time confronted with issues of how to integrate their illnesses into their daily lives and create new identities for themselves. A striking difference between HIV and other chronic diseases is that HIV is highly infectious and predominantly transmitted through sexual contact [4]. HIV/AIDS is still not yet socially accepted as a ‘normal’ chronic disease, making HIV/AIDS patients vulnerable, stigmatized and disinclined to disclose their disease.

Stigma has been defined as “the phenomenon whereby an individual with an attribute which is deeply discredited by his or her society is rejected as a result of the attribute” [5]. Illness-related stigma and discrimination, along with their public health implications, have an impact on a globalized environment [6–8]. The concept of stigma had been studied in relation to illnesses before the emergence of HIV/AIDS [9]. Stigma has been shown to act as a barrier to prevention, treatment and care [10] because of the feelings of shame, blame, guilt and social isolation [11]. Stigmatizing attitudes, whether experienced [12], perceived [13] or internalized [14] are often important issues of concern for individuals with chronic and incurable health conditions like the HIV/AIDS disease [15–20], and can have adverse effects, including difficulties in personal relationships, disruption of vocational, professional and educational goals and, crucially, delay in seeking help [21,22].

Negotiating when and how to disclose chronic and life-threatening diseases is never easy, neither for treating physicians nor for diagnosed patients [23]. In the case of HIV, the disclosure of a positive diagnosis is, even more than in other chronic diseases, problematic, because of its discredited and discrediting aspect [5,24]. It is thus extremely difficult and challenging to live with a life-changing event of this kind in some cultural settings,[25] especially as the possible revelation of one’s HIV positive status creates an internal struggle about whether or not to disclose [26,27].

Legally, there is no universal requirement to disclose HIV. Countries decide on how and when HIV disclosure is deemed obligatory. The dual requirement of the ‘duty to warn’ of HIV positive status to prevent health risks to a third person and the ‘duty of confidentiality’ exists in some states in the United States of America,[28] with unclear boundaries [29]. In Canada HIV- positive status disclosure is obligatory before engaging in any sexual activity with the possibility of HIV transmission [30]. European Union countries have no legal obligation to disclose HIV positive status. Protecting private data is a more fundamental right here [31]. In Belgium, likewise, the law clearly protects individuals’ right to privacy, which gives people living with HIV/AIDS the right to choose when and how they want to disclose their HIV positive status. This law is applicable to Belgian nationals as well as immigrants [32].

Migration entails movement of people and it is often pushed by the need to explore new opportunities, escape from hunger, armed conflicts or violence [33]. Movement from one place to another tends to involve some degree of trauma and migrant populations react differently to constitutions, health systems, cultures and languages other than that of their places of origin [34]. Most emigrants from low-resource regions such as sub-Saharan Africa (SSA) leave their home surroundings not only with socio-economic problems but also with health care problems that necessitate urgent health care solutions in their host countries. For example, a majority of migrants in the EU diagnosed HIV positive come from countries with generalized epidemics and were infected in their countries of origin. The vulnerability of many migrants with HIV/AIDS is exacerbated by the socio-cultural, legal, and policy differences, as well as unfamiliar languages, in their host countries [35].

Women are more vulnerable than men when diagnosed HIV positive. Women are the group most often infected or affected by HIV/AIDS and their gender, sexuality and often lower socio-economic status makes them more vulnerable than men. Moreover, HIV-positive women are in general more afraid of disclosing their status than men, because they are more concerned about their reproductive abilities and roles as caregivers, and they fear far-reaching consequences of disclosure [36]. SSA migrant women living with HIV/AIDS in Belgium and in other EU member states share these common concerns and fears about disclosure of HIV status. Moreover, they are often poor, come from countries with a high prevalence of HIV/AIDS and, above all, are migrants with social, economic and legal issues to deal with in their recipient countries.

Cultural background and gender may influence HIV/AIDS disclosure decisions. Previous studies have shown that voluntary or involuntary disclosure entails social risks including family and community rupture [37]. Decisions to disclose may depend also on agency [38,39], that is, the individual’s ability to act as s/he chooses and refuse multiple relations or insist on condom usage without fear of reprisals (choice-enabled). Likewise, some people are unable to make choices (choice-disabled) because of their socio-economic or educational level. Choice-disability is lack of freedom of choice for those who, for example are victims of intimate partner violence or destitution [40,41]. With regards to HIV/AIDS, choice-disability is a blind spot in HIV/AIDS prevention and is probably a pivot of the epidemic among sub-Saharan African women who bear the brunt of the disease.

Disclosure of one’s HIV status can is considered an important health-promoting support strategy that can avert further HIV transmission [42]. Failing to disclose HIV positive status to sexual partners may be significantly risky [43] and it is known that HIV status disclosure is vital for the enhancement of treatment adherence. Several studies have depicted the importance of HIV disclosure in preventing HIV transmission [44,45] but knowledge about disclosing or not disclosing HIV positive status, especially among SSA migrant women in Belgium, is lacking.

Other studies on the attitudes and behavior of SSA migrant women in relation to HIV disclosure suggest that disclosure decisions are influenced more by the women’s socio-cultural background and less by their new environment [46–49]. This study is important considering the fact that about one third of HIV/AIDS patients receiving care in Belgium are SSA migrant women. The objective of this study is to explore the extent to which SSA migrant women disclose their HIV positive status, the reasons for disclosing or not disclosing and how they deal with disclosure or non-disclosure.

Methods

Results

3.1 Characteristics of participants

In total 28 women from 14 countries in SSA with diverse socio-economic and educational background were interviewed and five observations were conducted during consultations. Four treating physicians and an HIV/AIDS therapist nurse of these patients were interviewed individually on their perspectives on treating SSA women with HIV/AIDS. Interviews lasted between 30 minutes and 1 hour with the patients and a one-off interview of between 15 minutes and 1 hour was held with the physicians.

Seventeen of the SSA women had learnt of their HIV-positive status during routine health check-ups at prenatal visits, when considering having children or in connection with other health issues during their residency, legal or not, in Belgium. Seven other women knew of their HIV positive status while in their home countries. Seeking effective treatment and care was the main reason for migrating for these seven women. Four women believed they contracted HIV in Belgium, considering the fact that they were either born or became sexually active in Belgium (Table 1). Of the twenty-eight women interviewed, sixteen had had a higher or university education, ten had had secondary education, one had had primary education and one had had no formal education. All spoke and understood French or English, so there was no need for a translator. Twenty-two of the 28 participants had “intimate partners” (IP) who were husbands (n = 15), live-in boyfriends (n = 1) or casual sexual partners (n = 6). Six participants had no intimate partners and were living alone with their children after having been widowed, abandoned by a spouse or making personal decision for complete abstinence as a result of their HIV-positive status.

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Table 1. Characteristics of patients (n = 28).

https://doi.org/10.1371/journal.pone.0119653.t001

Thirteen participants had HIV-negative intimate partners, 10 intimate partners were HIV positive and the HIV status of five partners was unavailable at the time of the interviews. Seven of the 28 participants were less than 40 years old. The youngest participant was aged 23 and the oldest was 67. Two participants provided written consent but did not sign the informed consent form because they believed that it was unnecessary and their identities would be disclosed. The reported mode of transmission of the HIV infection was heterosexual for twenty-seven participants who were interviewed; only one participant reported work-related transmission while working as a nurse in a refugee camp following armed conflict. The preferred venue for interviews was the clinic where most interviews were conducted. Eight interviews were conducted at the homes of study participants and one in a coffee shop located at a railway station and two interviews were conducted in a park and in a car. One participant was hospitalized at the time of interview.

Many participants reported the importance of secrecy that is, revealing their HIV positive status only to a “selected few” if possible; and hiding anything like medications that might identify them as HIV/AIDS patients (concealment). We structured our findings in the following way: characteristics of the participants and their choice to disclose or not, divided into the following subcategories—reasons to disclose, reasons not to disclose, coping strategies and experiences of disclosure.

3.2 To disclose or not to disclose

A prevalent theme in the data was disclosure and the women reported that they were confronted with the problem of who to disclose their HIV status to, how and why. The women differed in the way they disclosed their HIV positive status after being diagnosed (Table 2 and Fig. 1). All participants reported selective disclosure to general practitioners (GPs), dentists, pharmacists, intimate partners (husbands, live-in boyfriends, and [casual] boyfriends who lived apart from them), children, selected family members and friends (relevant others). Most participants reported receiving support and empathy from intimate partners, families and friends after disclosure and believed that this contributed to their general well-being and life with HIV/AIDS. Eight participants reported hiding their HIV/AIDS positive status from everyone except healthcare providers directly involved in the treatment and care of their HIV/AIDS.

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Fig 1. Proportion of patients (as shown in Table 2) that disclosed HIV/AIDS status and to whom they disclosed.

https://doi.org/10.1371/journal.pone.0119653.g001

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Table 2. Selective disclosure (n = 28).

https://doi.org/10.1371/journal.pone.0119653.t002

Participants associated choice-ability or disability with their disclosure decisions. The women chose to whom they wanted to disclose to, depending on the trust they had in the person. The gender of the person was not a main issue in their decision to disclose. What was paramount was whether that person could keep “the secret” or not.

Discussion

The main salient result is that all HIV positive SSA women in our study actively hid their diagnosis to a greater or lesser extent from others, sometimes including their intimate partners, children and caregivers. As is the case in previous studies [55–57], our research findings present a mixed picture with no simple answer for HIV disclosure. Disclosure is a complex choice, which is often difficult and a life-long process. It can be dangerous, especially if power imbalances in relationships favor men. We found out that most participants in balanced relationships did not regret disclosing their HIV positive status. Stigma and discrimination were found to be major impeding factors for disclosure. One particular form of stigma that emerged from the interviews was self-stigma. Self-stigma among SSA women encompasses denial, secrecy, silence, shame and avoidance.

Another reason for non-disclosure was fear of disrupting relationships, violence, rejection and abandonment, and these were actually experienced by a substantial proportion of the participants. Keeping their HIV positive status secret was paramount in their effort to cope with their illness and resulted in sometimes drastic coping strategies. Disclosure was best managed by being selective in revealing the illness (only to “relevant others”), and by decision making.

A limitation of this study is that a high number of SSA women with HIV/AIDS who were invited for this study refused to be interviewed because they feared that their HIV positive status would be revealed by participating, possibly leading to some selection bias. Our short inquiry with the non-participants did reveal that most of them refused to participate because the researcher herself is of African origin and the high stigma associated to HIV/AIDS disease in this culture. Most of the participants manifestly claimed that they would have accepted being interviewed if the researcher had not been of African origin, highlighting the importance of context and culture on HIV disclosure. Another limitation of the study is that women who are ‘self-identifying’ in public might have different responses to the issue of disclosure than women who were recruited by healthcare professionals. However, their disclosure was also limited to other participants at the conference who were also HIV-positive.

The strength of our study is therefore the combination of different methods, including interviews with patients and their caregivers and observations. This kind of triangulation seemed to be highly suitable for exploring disclosure intent among these HIV positive SSA migrant women, their reasons to disclose or not to disclose, and their way of dealing with their illness and disclosure or non-disclosure. It also highlights the importance of qualitative research, suitable for revealing deep-rooted fears among SSA migrant women of being labeled as HIV positive.

Our findings show that avoiding disclosure by keeping their status secret made the HIV positive SSA women feel resilient, with some sense of control over their lives, which they claim has become chaotic because of the HIV infection. In not disclosing their status and with no visible signs of HIV, they felt able to maintain their self-esteem and still benefit from socio-cultural networking. SSA migrant women with HIV/AIDS in Belgium, unlike most of their counterparts in Africa, have no obligation to disclose their HIV status because they need no financial or social support from families and friends. The cost of treatment, care and medication is mainly covered by national health insurance contributions, which is not the case in most SSA countries where families and friends pay for these services, bestowing on them the right to know the health condition they are requested or obliged to pay for.

Our findings refute the assumption that disclosure of HIV status is easier for SSA migrant women living in Belgium, with easy access combined antiretroviral therapy (cART) [58]. This study illustrates that the behavior and attitudes of SSA migrant women in relation to disclosure of HIV/AIDS status have not really changed despite the fact that they have migrated away from SSA.[59] As HIV in this group of women is largely transmitted through heterosexual contact, understanding gender, sexuality and HIV/AIDS linkage is important. Gender norms prescribing male dominance over women in the African communities make women more vulnerable to HIV prior to migration and in their new country of residence. Most often, female partners ignore male partners’ risky sexual behaviors for socio-cultural, economic and emotional reasons; unlike for men, concurrent sexual partnerships are not tolerated among women [60,61].

The support and empathy from intimate partners, families and friends received by most participants after disclosure of their positive status contributed and improved their general well-being and life with HIV/AIDS. Consequently, these women could better adhere to therapy after sharing positive diagnosis with their relevant others. Disclosing to an intimate partner who shares the worries and concerns related to the HIV disease strengthens the desire of the women to maintain a healthy lifestyle. They are better able to prevent the progression of the disease. The burden of living with the disease does not only lie on their shoulders alone after disclosure. Their ‘relevant others’ help to restore their integrity and self-perception through support and empathy.

Trauma was the immediate consequence of the HIV positive status diagnosis according to this study and these women had to learn to incorporate new identities into their lives as women, mothers and spouses within societies that stigmatize because of diseases. The women are aware of the stigma attached to being HIV positive and the fear of stigma is present even when not actually experienced. Fear, shame and blame remain similar factors that prevent SSA migrant women with HIV/AIDS from disclosing their positive status. The study revealed that most of the participants use avoidant coping strategies to deal and live with their HIV/AIDS diagnosis, trauma and stress. This is in line with other studies that have also identified stigma, in all its facets, as a major factor impeding the disclosure of HIV/AIDS status [62–66].

It is well documented that many people would like to keep their health situation confidential and there are some illnesses where the degree of confidentiality is higher than in others [67–69]. Participants were afraid of the fact that by participating in the study, the African diaspora in Belgium and subsequently in Africa would become aware of their HIV positive status. The ever- present mental suffering and pain in hiding their status from relatives and even intimate partners and children was evident in the study. However, it can be argued that women recruited through snowball sampling at HIV conferences seemed to be more open since they had at least disclosed to a “public community” and other women present at the HIV conference. However, in these groups non-HIV positive persons are not allowed to be present and members of the group are required to respect confidentiality.

Previous studies have shown that disclosing only to health care providers or another HIV positive person who lives with the virus is never the same as disclosing to close family members and friends who may have common daily chores, thus spending more time together with the HIV/AIDS infected woman [70]. It is evidenced in the literature that the HIV/AIDS pandemic is a shared responsibility between and among all infected and affected by the disease[71] but in this study, most HIV/AIDS infected women did not believe in sharing this responsibility because they experienced, anticipated or perceived negative disclosure outcomes. To a majority of these women, HIV/AIDS does not exempt them from their caregiving roles expected by family members and the society. Thus family and other social dynamics should not be disrupted by HIV/AIDS.

All the participants acknowledged the positive role of HIV care professionals in their constant fight to reconstruct and restructure their lives after the HIV diagnosis. It was interesting to find out that the women selected health care experts to whom they disclosed their status. For example, to most of the women disclosure to a general practitioner (GP) was found to be unnecessary because they could directly appeal to their treating physicians and nurses at the ARCs whenever they had any health issues that needed to be taken care of. Dentists and other health professionals not directly concerned with the treatment and care of HIV/AIDS were often not informed of their HIV status. Pharmacists in their neighborhoods were avoided, because they did not want to be identified as HIV/AIDS patients by people close to their homes.

“Living in denial” by refusing to accept HIV positive status and also refusing to disclose are strategies used by some participants to cope with their illness. Studies have shown that talking openly about HIV positive status serves as a means of adapting daily life to the medical condition [72] but this was not the case with most participants in this study. Disclosing their HIV/AIDS status for the purpose of this study could be termed ‘professional-assisted disclosure’ [73] whereby the disclosure to other people came as a result of invitations from health professionals to participate in this study. The power derived from non-disclosure is employed with legitimacy because they have a better understanding about living with HIV/AIDS. Thus, to these women non-disclosure of HIV status is “keeping their secret”, a strategy they want to cling to as long as they can. The disclosure privilege is recognized by several countries, including Belgium, where communities have created special provisions for the protection of privacy of HIV patients.

The socio-cultural background of the participants played a major role in their decision not to disclose, as seen in similar studies[74], because of the fear of stigma and discrimination, breach of confidentiality and distrust of other SSA migrants. Social dynamics influence HIV disclosure and despite the volume of this evidence and the contribution it can make towards a better understanding of factors influencing HIV status disclosure, research is still lacking. Understanding the different reasons for non-disclosure of HIV status by SSA migrant women living with HIV/AIDS could help in the development of sustainable interventions that could guide actions to support these women in their unique realities and also help them to transform and reconstruct their broken sense of social value [75].

Concerns about privacy and confidentiality may hinder patients from receiving high-quality collaborative treatment and care and thwart HIV/AIDS prevention efforts in an era when new technologies have transformed HIV/AIDS into a clinically treatable disease [76]. The reasons to disclose or not can have advantages and disadvantages to both HIV-positive women and their ‘relevant others’. The women who did not disclose or delayed HIV status disclosure to their children intended to protect their children from stigma and discrimination and the anxiety of having a mother with a life-threatening disease. However, there were no claims from the study that the children who knew of their mothers’ positive status experienced stigma and discrimination. Conversely, those women who disclosed to their children did not experience blame nor was their ‘secret’ revealed. Rather, these children became confidants and supported their mothers in their daily HIV/AIDS treatment and care. What is important in disclosing status is that the potential benefits of the disclosure should outweigh the potential losses. Fear of disclosure may lead to lost opportunities for the prevention of new infections and the ability to access appropriate treatment, care and support. The extent to which SSA migrant women with HIV disclose their infection depends on the existence of “choice freedom or choice disability”, which may have important implications in the transmission and prevention of HIV amongst their communities.

Previous studies have shown that choice disability (disparity in educational level, poverty, experienced sexual violence, intimate partner violence, partner income disparity or multiple partners) may be a driver of HIV/AIDS and may also influence HIV prevention decisions [77]. Our study reiterated some choice-disablement mechanisms among those SSA migrant women who chose not to disclose their HIV positive status. However, those who had freedom of choice did exercise this freedom through selective disclosure. Therefore, it is important to understand the choice-disablement that may affect the ability of SSA migrant women to make choices in their lives with HIV/AIDS. They should be encouraged by HIV experts to disclose to their intimate partners when they are ready to handle disclosure outcomes. Women cannot choose to share a responsibility if others will not share that responsibility. Therefore, it is imperative to address disclosure outcomes by educating the community on the need to be a partner in the fight to reduce HIV disclosure negative outcomes and focus on the benefits of disclosure at all levels.

When the community is involved to prevent onward HIV transmission through interventions that meet ethical imperatives, respect the dignity and autonomy of infected and affected individuals, and encourage voluntary testing, people with HIV/AIDS will cease to bear the sole burden of preventing HIV transmission. Research should focus on interventions that reduce choice—disablement through concerted efforts and education of the community in favor of SSA migrant women and people affected by choice disability.

Conclusions

The HIV positive status disclosure is vital for health promotion, social support, wellbeing and the prevention of the disease.[42] However, our findings point out that HIV disclosure is a personal and complex undertaking and usually not a one-step process. Our findings also illustrate that there is a tension between a call for disclosure as a prevention measure and the understanding of women as potentially threatened by such disclosure, physically and socially. Therefore caregivers should be aware of both the benefits and the potential risks of disclosing the positive status. Women need to be prepared and supported during the whole process of disclosure. Building a support network to protect against potential ‘risky’ disclosure might be a useful strategy. This process might be facilitated by greater openness in the community as a way to reduce negative responses to status disclosure. The caregivers’ role is vital and therefore HIV disclosure should be systematically incorporated into HIV post-test counseling and primary care services. Culturally-aware providers should support women by providing information on specific governmental and non-governmental institutions to contact for assistance in case of problems related to disclosure, such as intimate partner violence, abandonment, humiliation and rejection. We recommend that interventions should not only focus on individual self-disclosure but should be more community-oriented as well, through the active involvement and participation of the community in HIV/AIDS education.

Acknowledgments

Firstly we would like to thank all the sub-Saharan African migrant women who agreed to participate in the study. We are also grateful to the treating physicians and the therapist nurse at the AIDS Reference Centre for their assistance in the recruitment process.