AIDS Care, 2015 Vol. 27, No. 4, 451–457, http://dx.doi.org/10.1080/09540121.2014.963497
HIV disclosure and nondisclosure among migrant women from sub-Saharan Africa living in Switzerland Brikela Sulstarovaa*, Francesca Poglia Miletib, Laura Mellinib, Michela Villanib and Pascal Singya a
Psychiatric Liaison Service, Lausanne University Hospital, Lausanne, Switzerland; bDepartment of Social Sciences, University of Fribourg, Fribourg, Switzerland (Received 15 May 2014; accepted 4 September 2014) No study to date has focused specifically on the reasons for and against disclosure of HIV-positive status among subSaharan migrant women. Thirty HIV-positive women from 11 sub-Saharan countries living in French-speaking Switzerland participated in semi-structured individual interviews. The reasons women reported for disclosure or nondisclosure of their HIV serostatus were classified into three categories: social, medical, and ethical. The women identified the stigma associated with HIV as a major social reason for nondisclosure. However, this study identifies new trends related to disclosure for medical and ethical reasons. Being undetectable played an important role in the life of sub-Saharan migrant women, and analysis revealed their medical reasons for both disclosure and nondisclosure. Disclosure to new sexual partners occurred when women had a more positive perception about HIV and when they believed themselves to be in a long-term relationship. Women reported nondisclosure to family members when they did not need help outside the support provided by the medical and social fields. The results on ethical reasons suggested that challenging stigma was a reason for disclosure. Since the women’ perceptions on HIV changed when they came to see it as a chronic disease, disclosure occurred in an attempt to normalize life with HIV in their communities in migration and to challenge racism and discrimination. Our findings can help health providers better understand the communication needs of sub-Saharan migrant women with respect to HIV/AIDS and sexuality and offer them adequate disclosure advice that takes into account migration and gender issues. Keywords: HIV/AIDS; sub-Saharan migration; women; disclosure; stigma
Introduction Although they were invisible at the beginning of the HIV/AIDS epidemic, it is recognized today that approximately half of people living with HIV (PLWH) in the world are women. This rate increases to about 60% for women living in sub-Saharan Africa. In Switzerland, migrant women from sub-Saharan Africa represent 56% of all new HIV diagnoses through heterosexual transmission [Federal Office of Public Health (FOPH), 2013]. Besides biological factors that make women more prone to HIV infection (Higgins, Hoffman, & Dworkin, 2010), social, economic, and cultural factors compound their vulnerability. A lack of power in negotiating safer sex practices with partners, sexual violence, and genital mutilation are major factors increasing sub-Saharan women’s risk of contracting HIV (Moore & Amey, 2008; Moore & Oppong, 2007; Painter et al., 2007). Studies related to the experiences of African migrants living with HIV/AIDS show they face several barriers to accessing HIV services, lack accurate information about HIV transmission and prevention, and are more inclined to have late HIV testing (Anderson & Doyal, 2004; Burns, Imrie, Nazroo, Johnson, & Fenton, 2007; Dodds,
*Corresponding author. Email: [email protected] © 2014 Taylor & Francis
2006; Foley, 2005; Othieno, 2007; Rosenthal et al., 2003). In recent years, highly active antiretroviral therapy (HAART) developed in western countries has transformed HIV from a fatal disease to a chronic, manageable infection (Rodkjaer, Sodemann, Ostergaard, & Lomborg, 2011; Shacham, Small, Onen, Stamm, & Overton, 2012). However, while medically normalized, HIV/AIDS is not yet socially normalized (Mellini, Godenzi, & De Puy, 2004). Research shows that HIV remains highly stigmatized throughout the world, particularly among sub-Saharan people, both in their home countries (Ajala & Adejumo, 2007; Mwinituo & Mill, 2006; Suleiman, 2007) and in their host countries, especially in their communities (Flowers et al., 2006). Many studies have explored reasons for disclosure and nondisclosure among PLWH in western countries. The few that have covered this topic for African migrants living with HIV (Calin, Green, Hetherton, & Brook, 2007; Stutterheim et al., 2011) showed that stigma plays an important role in nondisclosure decisions. The reasons most frequently cited for nondisclosure are fear of stigmatization, a belief that HIV status is a private matter, a desire to protect others from worries,
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and a lack of close relationships. Reasons reported for disclosure are having a close and trusting relationship; having a duty to inform partners; and wanting to benefit from support, educate others on sexual risk taking, and/ or interact with other PLWH (Calin et al., 2007; Stutterheim et al., 2011). How women from sub-Saharan Africa living in other countries manage information about their HIV-positive status is limited to some studies analyzing their life experiences with HIV (Anderson & Doyal, 2004; Doyal, 2009; Doyal & Anderson, 2005). These limited studies have not focused specifically on these women’s motivations for disclosure and nondisclosure. Further investigation is needed, first, because HIV remains relatively prevalent among migrant women from sub-Saharan Africa. Second, studies have shown that HIV affects women and men of this group differently. For instance, the desire to have children is strong among these women, who consider motherhood a source of identity and legitimacy (Doyal & Anderson, 2005). In addition, breast-feeding is perceived as essential to motherhood (De Allegri, Sarker, Hofmann, Sanon, & Böhler, 2007; Hofmann, De Allegri, Sarker, Sanon, & Böhler, 2009), and not breast-feeding among sub-Saharan mothers under HAART is highly stigmatized (Abiona et al., 2006; Samuelsen, 2006). Finally, qualitative research (Calin et al., 2007) focused on the subjective perceptions of HIV-positive sub-Saharan migrant women and the reasons they disclose or not may help health care providers better understand their concerns and respond adequately to their needs. Our study examines the reasons for disclosure and nondisclosure reported by these women living in Switzerland in the era of rapid transformation of HIV from a fatal disease to a chronic, manageable infection. Methods Data were collected from in-depth, semi-structured individual interviews (Kaufman, 1996) with 30 HIVpositive migrant sub-Saharan women living in Frenchspeaking Switzerland. All interviews were conducted by two researchers (authors of this article) between December 2012 and September 2013. Interviews lasted about 2.5 hours and were audiotaped and transcribed. Migrant women were recruited from specialist HIV clinics at two hospitals, and from AIDS associations and health programs for migrants (Villani, Poglia Mileti, Mellini, Sulstarova, & Singy, in press). Ethics committees at two Swiss university hospitals granted approval. To participate in the study, migrant women had to be age 18 and older, born in a sub-Saharan country, diagnosed HIVpositive, and living in Switzerland for at least 1 year. Interviews were conducted at the hospitals and associations or in the respondents’ home according to the
women’s preferences. Before starting interviews, participants were introduced to the study and assured that all information gathered would remain confidential. They also signed a consent form and received modest financial compensation at the end of interview. The interview focused on four themes: migration, HIV/AIDS trajectory, disclosure and nondisclosure, and perceptions about sexuality and HIV/AIDS. To measure the women’s personal social network, an innovative methodological instrument was elaborated (Poglia Mileti, Mellini, Villani, Sulstarova, & Singy, in press). Women were invited to list all people belonging to their social network from their home and host countries and to put them in different social spheres (e.g., family, partners, work, community, health care, associations, religion, administration). Then they were asked about the significance of the relationships to them, to whom among their contacts they had disclosed their status, and to whom they had not and for which reasons. Respondents were between ages 25 and 57, and from 11 countries (Angola, Burkina Faso, Cameroon, Ivory Coast, Guinea, Mozambique, Democratic Republic of the Congo, Rwanda, Senegal, Togo, Zimbabwe). With the exception of four women, all reported being diagnosed after coming to Switzerland. Most women reported being undetectable at the time of the interview. Sociodemographic data were collected (Table 1). Most women had migrated alone and mentioned various reasons for migration, including an unstable political situation, fleeing war, abuse, and poverty, and pursuing education. Only a few women identified the need for medical care as a reason for coming to Switzerland. Data were analyzed using content analyses and NVivo 10 (QSR International 2010). According to grounded theory research (Glaser, 1978), we used concurrent interview data collection and constant comparative analysis. After analyzing the first seven interviews, tree coding was generated, including categories related to disclosure and nondisclosure and their properties related to reasons, context, and strategies. During coding and with further data collection, emerging categories about types of secret or disclosure process were developed and changes made to existent ones (Blanchet & Gotman, 1992). Analysis continued until no new categories or subcategories emerged and theoretical saturation was reached. The data were analyzed with sociological and sociolinguistic approaches.
Results Disclosure and nondisclosure in social spheres As showed elsewhere, women mostly disclosed their status to a limited number of significant relationships (Poglia Mileti et al., in press).1 They considered two
AIDS Care Table 1. Sociodemographic characteristics of sample (n = 30). Variable Age (years) 18–29 30–39 40–49 50–60 Immigration status Documented Undocumented Marital status Single Married Divorced With a partner Children With children Without children Employment status Employed Unemployed Student Level of education Illiterate Primary Secondary Bachelor’s + Means of transmission Sex Blood transfusion Unknown Time since diagnosis (years) Less than 2 2–5 6–10 More than 10 Treatment Antiretroviral therapy No therapy
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Indeed, the reasons for nondisclosure that prevail in the social category are fear of stigmatization and exclusion (e.g., fear of gossip in sub-Saharan communities, avoidance of differential treatment and relationship breakups, a desire to protect others, and maintain a normal social identity).
n
%
6 14 9 1
20 47 30 4
21 9
70 30
8 9 9 4
27 30 30 13
22 8
73 27
10 18 2
33 60 7
I told them [siblings] because I was shocked, you see? (Béatrice)
1 8 16 5
3 27 53 17
This reason is emotion laden, but liberation from the burden of the secret can also be a matter of psychological health. Some women said the burden became heavier over time and so needed to disclose to relatives:
17 1 12
57 3 40
I went to spend the week-end with my niece. I had that on my heart, I didn’t want to keep it for myself, so I confided. (Xénia)
5 5 10 10
17 17 33 33
Another reason for disclosure was advice given by medical staff, who encourage women to inform their sexual partners and are ready to help them communicate their status:
27 3
90 10
I told my doctor that I had met someone. He then told me: “Listen, you can tell him.” I was scared. And my doctor told me that if I am too scared to talk to him, he would help me. (Gabrielle)
Disclosure and nondisclosure for medical reasons
social spheres secure for disclosure: the medical field and associations engaged in fighting HIV/AIDS. Disclosure occurred mostly to stable partners, select family members, and sub-Saharan HIV-positive friends. Nondisclosure was usual in three social spheres: sub-Saharan communities in migration, religion communities, and work. Our data show that keeping HIV serostatus secret is a lifelong challenge for sub-Saharan migrant women, who must constantly reinvent strategies for concealment (Poglia Mileti et al., in press). Through systematic analysis, we classified reasons for disclosing HIV serostatus or not into three categories: social, medical, and ethical. Here we focus on the medical and ethical categories, since social reasons are already well documented (Calin et al., 2007; Stutterheim et al., 2011).
Reasons for disclosure and nondisclosure related to medical issues included progress of HIV serostatus, state of health, and preventive measures to protect others from HIV risk. Reasons for disclosure prevailed in this category. Distress and shock over the initial diagnosis was a reason some women disclosed their status, especially those diagnosed during antenatal tests. They felt that hearing their HIV seropositive status was a death sentence and so needed to share the terrible news with family members:
Disclosure to ex-partners also occurred, in order to find out the source of transmission. In their struggle to make sense of their disease, women wonder how, when, by whom, and why they contracted it: I called him and I told him, “Listen, I have a problem, I have this and that. Did you give me that?” He told me, “So what? And if someone has given to me, why can’t I give it to you?” (Nina)
Induced by the goal of prevention and a desire to encourage relatives to get HIV testing, some women disclosed their status to help others realize the risk of HIV transmission and to promote safe sex: I always announced it in particular circumstances. My brother told me: “I have the flu, I have to get tested?”
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And then I told him: “Yes. You know why? Because I’m seropositive.” (Mireille)
A medical reason for nondisclosure was practicing safer sex with casual partners. Women said using condoms justified their silence toward casual partners since they perceive the risk of transmission as negligible. Nondisclosure to partners was also linked to the meaning women attribute to short-term relationships: They’re transient relationships, nothing serious. If we protect ourselves, we don’t need to talk. (Béatrice)
Finally, being undetectable was a medical reason that led women to both disclosure and nondisclosure. Being undetectable and in good health gave some women a sense of well-being. They saw no sense in disclosing to family and friends because they felt in good health: When I don’t go to the hospital, I don’t feel sick, I never got that into my head. My mother, my parents, nobody knows. (Thérèse)
Other women, in contrast, reported being undetectable as a reason for disclosure. Since their perceptions about HIV changed to them seeing it as a chronic disease, they had the courage to disclose to new sexual partners when they believed they would have a long-term relationship: I also told him the truth, because I knew I was undetectable, the doctors had told me I could live like the others with no problem, the treatment works well, and I told him the truth. (Céline)
Disclosure and nondisclosure for ethical reasons With respect to ethical reasons, women reported concern for morality, rights, and obligations. Disclosure to sexual partners seems related to relationship stability. With stable partners, women considered disclosure a moral obligation, not only to protect them from HIV transmission and encourage partners to get testing, but also because of the trust and honesty they value in a stable relationship: It wasn’t easy for me to tell him, but I told him so that he could get tested. He did it the day after … It was a relief, a big relief. (Mireille)
Some women chose to disclose their serostatus as a claim to dignity, to be treated with respect. Indeed, facing discrimination as sub-Saharan women, they perceived disclosure as an active response to racism by affirming their dignity as a PLWH: Because I was very tired and I couldn’t work, my mother-in-law said Africans profit from the system and then I decided to tell her. (Astrid)
With intra-community discrimination, women reported disclosing to select sub-Saharan friends as a step toward autonomy and out of a desire to end humiliation and normalize life with HIV in their communities in migration. Some women decided not to accept the stigma passively but to challenge it by affirming that even though they are HIV-positive, they are just as normal as other people: I told her that I hadn’t stolen the disease, I didn’t buy it. It just happened so I don’t want to hide anymore. If I want to tell someone, I will. (Zoé)
For nondisclosure, some women reported considering their HIV serostatus a private question, believing that it should not be revealed everywhere and without reason: I always tell myself it’s a personal question. Health is only your business. Somebody else’s health doesn’t concern me, to learn about [it], even if it’s not HIV. (Hélène)
Finally, another ethical reason led respondents to both disclosure and nondisclosure. Every time women came in contact with institutions and administrative services, they confronted the dilemma of whether to disclose their HIV serostatus. The decision depends on the women’s evaluation of their rights and obligations. Women concerned with the uncertainty of their legal status report having felt an obligation to disclose in order to facilitate their stay in the host country: I told the lawyer because he defends me. In Bern [at the Federal Office for Migration] I have already told that I am seropositive. (Pauline)
In other cases, particularly documented women did not believe they had any obligation to disclose their HIV status to social and administrative services that are not supposed to know about their health status: I have never disclosed … I do not see the reason. For example, I don’t see why I have to disclose it to my job adviser. (Fabienne)
Discussion Our findings related to social reasons are in line with previous studies on sub-Saharan migrants (Calin et al., 2007; Stutterheim et al., 2011): fear of stigmatization and rejection are the major reasons sub-Saharan migrant women’s nondisclosure. From their perspective, the stigma associated with HIV is still heavy in their communities in migration. Although having accumulated vulnerabilities of being migrants, women, HIV-positive, and from sub-Saharan Africa (Dieleman, 2008), our study shows that participants were not only victims but also agents in their own life (Poglia Mileti, Villani,
AIDS Care Sulstarova, Mellini, & Singy, 2014), as the following three emergent trends show. First, our findings highlighted that thanks to HAART, being asymptomatic and living mostly healthy with HIV allows women to choose to disclose or not their HIV status. Moreover, for most respondents, being undetectable was a very important matter in their life. Some mentioned it as a reason for nondisclosure, since they do not need other support outside the professional field. Others who learn they are undetectable choose to disclose to new sexual partners when they believe themselves to be in a long-term relationship, as their perceptions of HIV became more positive given the medical information they received. Second, if disclosure is mostly a consequence of evaluating costs and benefits (Derlega, Winstead, Greene, Serovich, & Elwood, 2004; Serovich, Lim, & Mason, 2008), our study suggests that sub-Saharan migrant women also confront the concept of rights and obligations. Since they are living in a society where these are clearly defined, women become more aware of their own rights and obligations as migrant and HIVpositive people. The evaluation of risks and benefits associated with the knowledge of rights and obligations leads them to disclose their status or not to institutions in the host country. Third, our results indicate that disclosure sometimes occurs to reduce multiple stigmas. Accepting a new identity as PLVH, some women decide to disclose to challenge racism or discrimination. Others prefer selective disclosure in their communities to challenge the stigma associated with HIV, making a claim for the “social normalization” of HIV. These findings are in line with research conducted in sub-Saharan countries on the positive consequences of HIV disclosure in reducing stigma (Abrahams & Jewkes, 2012; Bott & Obermeyer, 2013). Since there is a gap between women’s and communities’ perceptions of HIV, it remains unclear how women’s disclosure can bring positive changes. This area requires more research. The current study has some limitations related to the qualitative nature of the data and sample. The women are not representative of all sub-Saharan countries, and one country (Cameroon) is overrepresented. Nevertheless, the sample reflects the origin of the African population living in Switzerland. There is also potential bias due to recruitment strategies, as we recruited respondents through intermediate medical and social professionals. Our findings have several implications for HIV health providers. Sub-Saharan migrant women may benefit from systematic, ongoing communication with them about questions linked to disclosure. It is important that after diagnosis, health providers reiterate the discussion about communication strategies regarding disclosure and nondisclosure, and the impact of this on the
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woman’s life, since managing information about one’s HIV-positive status is a lifelong process. They should advise women with partners on not only how to talk about HIV but also how to communicate about sexuality with HIV in the relationship, which is a concern for subSaharan migrant women (Poglia Mileti et al., 2014). Further research is needed on the disclosure strategies women use and how they communicate about sexuality with HIV with their partners. We also recommend that communication skills training for health providers include counseling strategies for disclosure issues that are appropriate to migrant populations’ needs and sensitive to gender issues. Acknowledgments The authors thank all the study participants. They also thank the AIDS associations and hospital clinics for their efforts in recruitment’ process.
Funding The study was supported by the Swiss National Science Foundation [grant number 100017_1404].
Note 1. Our aim in the qualitative methodology was not to estimate prevalence of disclosure.
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HIV disclosure and nondisclosure among migrant women from sub-Saharan Africa living in Switzerland Brikela Sulstarovaa*, Francesca Poglia Miletib, Laura Mellinib, Michela Villanib and Pascal Singya a
Psychiatric Liaison Service, Lausanne University Hospital, Lausanne, Switzerland; bDepartment of Social Sciences, University of Fribourg, Fribourg, Switzerland (Received 15 May 2014; accepted 4 September 2014) No study to date has focused specifically on the reasons for and against disclosure of HIV-positive status among subSaharan migrant women. Thirty HIV-positive women from 11 sub-Saharan countries living in French-speaking Switzerland participated in semi-structured individual interviews. The reasons women reported for disclosure or nondisclosure of their HIV serostatus were classified into three categories: social, medical, and ethical. The women identified the stigma associated with HIV as a major social reason for nondisclosure. However, this study identifies new trends related to disclosure for medical and ethical reasons. Being undetectable played an important role in the life of sub-Saharan migrant women, and analysis revealed their medical reasons for both disclosure and nondisclosure. Disclosure to new sexual partners occurred when women had a more positive perception about HIV and when they believed themselves to be in a long-term relationship. Women reported nondisclosure to family members when they did not need help outside the support provided by the medical and social fields. The results on ethical reasons suggested that challenging stigma was a reason for disclosure. Since the women’ perceptions on HIV changed when they came to see it as a chronic disease, disclosure occurred in an attempt to normalize life with HIV in their communities in migration and to challenge racism and discrimination. Our findings can help health providers better understand the communication needs of sub-Saharan migrant women with respect to HIV/AIDS and sexuality and offer them adequate disclosure advice that takes into account migration and gender issues. Keywords: HIV/AIDS; sub-Saharan migration; women; disclosure; stigma
Introduction Although they were invisible at the beginning of the HIV/AIDS epidemic, it is recognized today that approximately half of people living with HIV (PLWH) in the world are women. This rate increases to about 60% for women living in sub-Saharan Africa. In Switzerland, migrant women from sub-Saharan Africa represent 56% of all new HIV diagnoses through heterosexual transmission [Federal Office of Public Health (FOPH), 2013]. Besides biological factors that make women more prone to HIV infection (Higgins, Hoffman, & Dworkin, 2010), social, economic, and cultural factors compound their vulnerability. A lack of power in negotiating safer sex practices with partners, sexual violence, and genital mutilation are major factors increasing sub-Saharan women’s risk of contracting HIV (Moore & Amey, 2008; Moore & Oppong, 2007; Painter et al., 2007). Studies related to the experiences of African migrants living with HIV/AIDS show they face several barriers to accessing HIV services, lack accurate information about HIV transmission and prevention, and are more inclined to have late HIV testing (Anderson & Doyal, 2004; Burns, Imrie, Nazroo, Johnson, & Fenton, 2007; Dodds,
*Corresponding author. Email: [email protected] © 2014 Taylor & Francis
2006; Foley, 2005; Othieno, 2007; Rosenthal et al., 2003). In recent years, highly active antiretroviral therapy (HAART) developed in western countries has transformed HIV from a fatal disease to a chronic, manageable infection (Rodkjaer, Sodemann, Ostergaard, & Lomborg, 2011; Shacham, Small, Onen, Stamm, & Overton, 2012). However, while medically normalized, HIV/AIDS is not yet socially normalized (Mellini, Godenzi, & De Puy, 2004). Research shows that HIV remains highly stigmatized throughout the world, particularly among sub-Saharan people, both in their home countries (Ajala & Adejumo, 2007; Mwinituo & Mill, 2006; Suleiman, 2007) and in their host countries, especially in their communities (Flowers et al., 2006). Many studies have explored reasons for disclosure and nondisclosure among PLWH in western countries. The few that have covered this topic for African migrants living with HIV (Calin, Green, Hetherton, & Brook, 2007; Stutterheim et al., 2011) showed that stigma plays an important role in nondisclosure decisions. The reasons most frequently cited for nondisclosure are fear of stigmatization, a belief that HIV status is a private matter, a desire to protect others from worries,
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and a lack of close relationships. Reasons reported for disclosure are having a close and trusting relationship; having a duty to inform partners; and wanting to benefit from support, educate others on sexual risk taking, and/ or interact with other PLWH (Calin et al., 2007; Stutterheim et al., 2011). How women from sub-Saharan Africa living in other countries manage information about their HIV-positive status is limited to some studies analyzing their life experiences with HIV (Anderson & Doyal, 2004; Doyal, 2009; Doyal & Anderson, 2005). These limited studies have not focused specifically on these women’s motivations for disclosure and nondisclosure. Further investigation is needed, first, because HIV remains relatively prevalent among migrant women from sub-Saharan Africa. Second, studies have shown that HIV affects women and men of this group differently. For instance, the desire to have children is strong among these women, who consider motherhood a source of identity and legitimacy (Doyal & Anderson, 2005). In addition, breast-feeding is perceived as essential to motherhood (De Allegri, Sarker, Hofmann, Sanon, & Böhler, 2007; Hofmann, De Allegri, Sarker, Sanon, & Böhler, 2009), and not breast-feeding among sub-Saharan mothers under HAART is highly stigmatized (Abiona et al., 2006; Samuelsen, 2006). Finally, qualitative research (Calin et al., 2007) focused on the subjective perceptions of HIV-positive sub-Saharan migrant women and the reasons they disclose or not may help health care providers better understand their concerns and respond adequately to their needs. Our study examines the reasons for disclosure and nondisclosure reported by these women living in Switzerland in the era of rapid transformation of HIV from a fatal disease to a chronic, manageable infection. Methods Data were collected from in-depth, semi-structured individual interviews (Kaufman, 1996) with 30 HIVpositive migrant sub-Saharan women living in Frenchspeaking Switzerland. All interviews were conducted by two researchers (authors of this article) between December 2012 and September 2013. Interviews lasted about 2.5 hours and were audiotaped and transcribed. Migrant women were recruited from specialist HIV clinics at two hospitals, and from AIDS associations and health programs for migrants (Villani, Poglia Mileti, Mellini, Sulstarova, & Singy, in press). Ethics committees at two Swiss university hospitals granted approval. To participate in the study, migrant women had to be age 18 and older, born in a sub-Saharan country, diagnosed HIVpositive, and living in Switzerland for at least 1 year. Interviews were conducted at the hospitals and associations or in the respondents’ home according to the
women’s preferences. Before starting interviews, participants were introduced to the study and assured that all information gathered would remain confidential. They also signed a consent form and received modest financial compensation at the end of interview. The interview focused on four themes: migration, HIV/AIDS trajectory, disclosure and nondisclosure, and perceptions about sexuality and HIV/AIDS. To measure the women’s personal social network, an innovative methodological instrument was elaborated (Poglia Mileti, Mellini, Villani, Sulstarova, & Singy, in press). Women were invited to list all people belonging to their social network from their home and host countries and to put them in different social spheres (e.g., family, partners, work, community, health care, associations, religion, administration). Then they were asked about the significance of the relationships to them, to whom among their contacts they had disclosed their status, and to whom they had not and for which reasons. Respondents were between ages 25 and 57, and from 11 countries (Angola, Burkina Faso, Cameroon, Ivory Coast, Guinea, Mozambique, Democratic Republic of the Congo, Rwanda, Senegal, Togo, Zimbabwe). With the exception of four women, all reported being diagnosed after coming to Switzerland. Most women reported being undetectable at the time of the interview. Sociodemographic data were collected (Table 1). Most women had migrated alone and mentioned various reasons for migration, including an unstable political situation, fleeing war, abuse, and poverty, and pursuing education. Only a few women identified the need for medical care as a reason for coming to Switzerland. Data were analyzed using content analyses and NVivo 10 (QSR International 2010). According to grounded theory research (Glaser, 1978), we used concurrent interview data collection and constant comparative analysis. After analyzing the first seven interviews, tree coding was generated, including categories related to disclosure and nondisclosure and their properties related to reasons, context, and strategies. During coding and with further data collection, emerging categories about types of secret or disclosure process were developed and changes made to existent ones (Blanchet & Gotman, 1992). Analysis continued until no new categories or subcategories emerged and theoretical saturation was reached. The data were analyzed with sociological and sociolinguistic approaches.
Results Disclosure and nondisclosure in social spheres As showed elsewhere, women mostly disclosed their status to a limited number of significant relationships (Poglia Mileti et al., in press).1 They considered two
AIDS Care Table 1. Sociodemographic characteristics of sample (n = 30). Variable Age (years) 18–29 30–39 40–49 50–60 Immigration status Documented Undocumented Marital status Single Married Divorced With a partner Children With children Without children Employment status Employed Unemployed Student Level of education Illiterate Primary Secondary Bachelor’s + Means of transmission Sex Blood transfusion Unknown Time since diagnosis (years) Less than 2 2–5 6–10 More than 10 Treatment Antiretroviral therapy No therapy
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Indeed, the reasons for nondisclosure that prevail in the social category are fear of stigmatization and exclusion (e.g., fear of gossip in sub-Saharan communities, avoidance of differential treatment and relationship breakups, a desire to protect others, and maintain a normal social identity).
n
%
6 14 9 1
20 47 30 4
21 9
70 30
8 9 9 4
27 30 30 13
22 8
73 27
10 18 2
33 60 7
I told them [siblings] because I was shocked, you see? (Béatrice)
1 8 16 5
3 27 53 17
This reason is emotion laden, but liberation from the burden of the secret can also be a matter of psychological health. Some women said the burden became heavier over time and so needed to disclose to relatives:
17 1 12
57 3 40
I went to spend the week-end with my niece. I had that on my heart, I didn’t want to keep it for myself, so I confided. (Xénia)
5 5 10 10
17 17 33 33
Another reason for disclosure was advice given by medical staff, who encourage women to inform their sexual partners and are ready to help them communicate their status:
27 3
90 10
I told my doctor that I had met someone. He then told me: “Listen, you can tell him.” I was scared. And my doctor told me that if I am too scared to talk to him, he would help me. (Gabrielle)
Disclosure and nondisclosure for medical reasons
social spheres secure for disclosure: the medical field and associations engaged in fighting HIV/AIDS. Disclosure occurred mostly to stable partners, select family members, and sub-Saharan HIV-positive friends. Nondisclosure was usual in three social spheres: sub-Saharan communities in migration, religion communities, and work. Our data show that keeping HIV serostatus secret is a lifelong challenge for sub-Saharan migrant women, who must constantly reinvent strategies for concealment (Poglia Mileti et al., in press). Through systematic analysis, we classified reasons for disclosing HIV serostatus or not into three categories: social, medical, and ethical. Here we focus on the medical and ethical categories, since social reasons are already well documented (Calin et al., 2007; Stutterheim et al., 2011).
Reasons for disclosure and nondisclosure related to medical issues included progress of HIV serostatus, state of health, and preventive measures to protect others from HIV risk. Reasons for disclosure prevailed in this category. Distress and shock over the initial diagnosis was a reason some women disclosed their status, especially those diagnosed during antenatal tests. They felt that hearing their HIV seropositive status was a death sentence and so needed to share the terrible news with family members:
Disclosure to ex-partners also occurred, in order to find out the source of transmission. In their struggle to make sense of their disease, women wonder how, when, by whom, and why they contracted it: I called him and I told him, “Listen, I have a problem, I have this and that. Did you give me that?” He told me, “So what? And if someone has given to me, why can’t I give it to you?” (Nina)
Induced by the goal of prevention and a desire to encourage relatives to get HIV testing, some women disclosed their status to help others realize the risk of HIV transmission and to promote safe sex: I always announced it in particular circumstances. My brother told me: “I have the flu, I have to get tested?”
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And then I told him: “Yes. You know why? Because I’m seropositive.” (Mireille)
A medical reason for nondisclosure was practicing safer sex with casual partners. Women said using condoms justified their silence toward casual partners since they perceive the risk of transmission as negligible. Nondisclosure to partners was also linked to the meaning women attribute to short-term relationships: They’re transient relationships, nothing serious. If we protect ourselves, we don’t need to talk. (Béatrice)
Finally, being undetectable was a medical reason that led women to both disclosure and nondisclosure. Being undetectable and in good health gave some women a sense of well-being. They saw no sense in disclosing to family and friends because they felt in good health: When I don’t go to the hospital, I don’t feel sick, I never got that into my head. My mother, my parents, nobody knows. (Thérèse)
Other women, in contrast, reported being undetectable as a reason for disclosure. Since their perceptions about HIV changed to them seeing it as a chronic disease, they had the courage to disclose to new sexual partners when they believed they would have a long-term relationship: I also told him the truth, because I knew I was undetectable, the doctors had told me I could live like the others with no problem, the treatment works well, and I told him the truth. (Céline)
Disclosure and nondisclosure for ethical reasons With respect to ethical reasons, women reported concern for morality, rights, and obligations. Disclosure to sexual partners seems related to relationship stability. With stable partners, women considered disclosure a moral obligation, not only to protect them from HIV transmission and encourage partners to get testing, but also because of the trust and honesty they value in a stable relationship: It wasn’t easy for me to tell him, but I told him so that he could get tested. He did it the day after … It was a relief, a big relief. (Mireille)
Some women chose to disclose their serostatus as a claim to dignity, to be treated with respect. Indeed, facing discrimination as sub-Saharan women, they perceived disclosure as an active response to racism by affirming their dignity as a PLWH: Because I was very tired and I couldn’t work, my mother-in-law said Africans profit from the system and then I decided to tell her. (Astrid)
With intra-community discrimination, women reported disclosing to select sub-Saharan friends as a step toward autonomy and out of a desire to end humiliation and normalize life with HIV in their communities in migration. Some women decided not to accept the stigma passively but to challenge it by affirming that even though they are HIV-positive, they are just as normal as other people: I told her that I hadn’t stolen the disease, I didn’t buy it. It just happened so I don’t want to hide anymore. If I want to tell someone, I will. (Zoé)
For nondisclosure, some women reported considering their HIV serostatus a private question, believing that it should not be revealed everywhere and without reason: I always tell myself it’s a personal question. Health is only your business. Somebody else’s health doesn’t concern me, to learn about [it], even if it’s not HIV. (Hélène)
Finally, another ethical reason led respondents to both disclosure and nondisclosure. Every time women came in contact with institutions and administrative services, they confronted the dilemma of whether to disclose their HIV serostatus. The decision depends on the women’s evaluation of their rights and obligations. Women concerned with the uncertainty of their legal status report having felt an obligation to disclose in order to facilitate their stay in the host country: I told the lawyer because he defends me. In Bern [at the Federal Office for Migration] I have already told that I am seropositive. (Pauline)
In other cases, particularly documented women did not believe they had any obligation to disclose their HIV status to social and administrative services that are not supposed to know about their health status: I have never disclosed … I do not see the reason. For example, I don’t see why I have to disclose it to my job adviser. (Fabienne)
Discussion Our findings related to social reasons are in line with previous studies on sub-Saharan migrants (Calin et al., 2007; Stutterheim et al., 2011): fear of stigmatization and rejection are the major reasons sub-Saharan migrant women’s nondisclosure. From their perspective, the stigma associated with HIV is still heavy in their communities in migration. Although having accumulated vulnerabilities of being migrants, women, HIV-positive, and from sub-Saharan Africa (Dieleman, 2008), our study shows that participants were not only victims but also agents in their own life (Poglia Mileti, Villani,
AIDS Care Sulstarova, Mellini, & Singy, 2014), as the following three emergent trends show. First, our findings highlighted that thanks to HAART, being asymptomatic and living mostly healthy with HIV allows women to choose to disclose or not their HIV status. Moreover, for most respondents, being undetectable was a very important matter in their life. Some mentioned it as a reason for nondisclosure, since they do not need other support outside the professional field. Others who learn they are undetectable choose to disclose to new sexual partners when they believe themselves to be in a long-term relationship, as their perceptions of HIV became more positive given the medical information they received. Second, if disclosure is mostly a consequence of evaluating costs and benefits (Derlega, Winstead, Greene, Serovich, & Elwood, 2004; Serovich, Lim, & Mason, 2008), our study suggests that sub-Saharan migrant women also confront the concept of rights and obligations. Since they are living in a society where these are clearly defined, women become more aware of their own rights and obligations as migrant and HIVpositive people. The evaluation of risks and benefits associated with the knowledge of rights and obligations leads them to disclose their status or not to institutions in the host country. Third, our results indicate that disclosure sometimes occurs to reduce multiple stigmas. Accepting a new identity as PLVH, some women decide to disclose to challenge racism or discrimination. Others prefer selective disclosure in their communities to challenge the stigma associated with HIV, making a claim for the “social normalization” of HIV. These findings are in line with research conducted in sub-Saharan countries on the positive consequences of HIV disclosure in reducing stigma (Abrahams & Jewkes, 2012; Bott & Obermeyer, 2013). Since there is a gap between women’s and communities’ perceptions of HIV, it remains unclear how women’s disclosure can bring positive changes. This area requires more research. The current study has some limitations related to the qualitative nature of the data and sample. The women are not representative of all sub-Saharan countries, and one country (Cameroon) is overrepresented. Nevertheless, the sample reflects the origin of the African population living in Switzerland. There is also potential bias due to recruitment strategies, as we recruited respondents through intermediate medical and social professionals. Our findings have several implications for HIV health providers. Sub-Saharan migrant women may benefit from systematic, ongoing communication with them about questions linked to disclosure. It is important that after diagnosis, health providers reiterate the discussion about communication strategies regarding disclosure and nondisclosure, and the impact of this on the
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woman’s life, since managing information about one’s HIV-positive status is a lifelong process. They should advise women with partners on not only how to talk about HIV but also how to communicate about sexuality with HIV in the relationship, which is a concern for subSaharan migrant women (Poglia Mileti et al., 2014). Further research is needed on the disclosure strategies women use and how they communicate about sexuality with HIV with their partners. We also recommend that communication skills training for health providers include counseling strategies for disclosure issues that are appropriate to migrant populations’ needs and sensitive to gender issues. Acknowledgments The authors thank all the study participants. They also thank the AIDS associations and hospital clinics for their efforts in recruitment’ process.
Funding The study was supported by the Swiss National Science Foundation [grant number 100017_1404].
Note 1. Our aim in the qualitative methodology was not to estimate prevalence of disclosure.
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