535235 research-article2014
JMHXXX10.1177/1557988314535235American Journal of Men’s HealthIwelunmor et al.
Article
Sociocultural Factors Influencing HIV Disclosure Among Men in South Africa
American Journal of Men’s Health 2015, Vol. 9(3) 193–200 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1557988314535235 ajmh.sagepub.com
Juliet Iwelunmor, PhD1, Yewande Sofolahan-Oladeinde, PhD2, and Collins O. Airhihenbuwa, PhD3
Abstract In South Africa, more than 2 million people living with HIV are men aged 15 years and older, and heterosexual intercourse remains the predominant mode of HIV transmission. Knowledge of the sociocultural factors that influence men’s decisions about whether, when, or how to disclose seropositive status remains incompletely understood. Using the PEN-3 cultural model as a guide, this study explored the sociocultural factors influencing HIV disclosure among men in South Africa. Four focus group discussions with 27 participants were used to determine the perceptions, enabling and nurturing factors that influence how men chose to reveal or conceal knowledge of their seropositive status. The results revealed that notions of male identity in the South African context, family, and community factors contribute to disclosure and nondisclosure of seropositive status among men living with HIV/AIDS. Future interventions should work to address these factors, as they are necessary with supporting disclosure among men living with HIV. Keywords culture, HIV/AIDS disclosure, men living with HIV/AIDS
Introduction By the end of 2012, there were 6.1 million people living with HIV in South Africa (UNAIDS, 2012). About 17.9% of the prevalence occurred among adults aged 15 to 49 years, and 240,000 people died as a result of HIV (UNAIDS, 2012). According to the latest data from South Africa, more than 2 million people living with HIV are men aged 15 years and older, and heterosexual intercourse remains the predominant mode of HIV transmission (Mhlongo et al., 2013). The World Health Organization (WHO) suggests that about 50% of people living with HIV/AIDS (PLWHA) are in serodiscordant relationships (i.e., they have HIV-negative partners; WHO, 2012). Many of these PLWHA are neither aware of their partners’ statuses nor have they disclosed their status to their partners (WHO, 2012). Most HIV infections in sub-Saharan Africa occur in committed, heterosexual relationships where infected partners may not have disclosed their status (Ramirez-Ferrero & LustiNarasimhan, 2012). In recent years, a growing body of research has explored the disclosure experiences of people living with HIV and AIDS in South Africa (Vu et al., 2012; Wong et al., 2009). Results suggested that most people, particularly men living with HIV, do not disclose knowledge of their seropositive status to their partners (Olley, Seedat, & Stein, 2004; Simbayi et al., 2007). The decision to disclose seropositive status among men is a complex process influenced by multiple factors,
such as knowledge of partner’s HIV status, anticipated support, and being the head of the household (Conserve, King, Dévieux, Jean-Gilles, & Malow, 2014; Morrell, 2001, 2006). In the South African context, it should also be noted that different complex social and historical processes have shaped notions of what it means to be a man (Campbell, 1992). The legacy of apartheid regime alongside labor migration in South Africa undermined the position of men (particularly Black and colored men) as breadwinners in many families and households (Campbell, 1992). Montgomery, Hosegood, Busza, and Timæus (2006) noted that these social processes led to an increase in unemployment, making it difficult for men to provide financially for their families. In Changing Men in Southern Africa, Morrell (2001) suggested that the movement of male labor to mines and cities, the burden of the brutal apartheid system, all of which led to isolation and forced migration also negatively influenced perceptions of men in South Africa. Although the discourse on male identity in South Africa often focus on issues related to 1
University of Illinois at Urbana Champaign, Champaign, IL, USA University of Maryland, Baltimore, MD, USA 3 Pennsylvania State University, University Park, PA, USA 2
Corresponding Author: Juliet Iwelunmor, Department of Kinesiology and Community Health, University of Illinois at Urbana Champaign, 1206 S. Fourth Street, Champaign, IL 61822, USA. Email: [email protected]
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domestic violence and/or aggression, little is known about how men navigate issues related to HIV disclosure. That there might be key perceptions, enabling or nurturing factors associated with how men choose to reveal or conceal knowledge of their seropositive status is unknown. Moreover, an examination of negative consequences of disclosure such as shame, fear of rejection, discrimination, and isolation of loved ones or secondary stigma (Derlega, Winstead, Greene, Serovich, & Elwood, 2004; Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003) and its influence on rates of disclosure among men in South Africa requires further investigation (Dageid, Govender, & Gordon, 2012). While much has been written about HIV disclosure in South Africa, less attention has been given to how sociocultural factors can influence men’s decisions about whether, when, or how to disclose seropositive status. It has long been suggested that any attempt to provide health solutions in sub-Saharan Africa must seriously take into account the social cultural factors that shape both the individual’s decision and its influence on the collective (Airhihenbuwa, 1995; Iwelunmor, Zungu, & Airhihenbuwa, 2010). Sociocultural factors refer to the factors that represent the collective consciousness of people, active enough to influence and condition perception, judgment, communication, and behavior (Airhihenbuwa, 2007b; Iwelunmor & Airhihenbuwa, 2013). Sociocultural factors nurture a state of resilience such that people are able to cope and thrive or negotiate and develop strategies for dealing with complex issues (Airhihenbuwa, 2007a; Airhihenbuwa et al., 2009). This article presents results from focus group discussions on HIV disclosure among men living with HIV. Specifically, we exploredr the subjective experiences of men living with HIV and the extent to which sociocultural factors have facilitated or hindered their decisions to conceal or reveal knowledge of their seropositive status.
Theoretical Framework The PEN-3 cultural model was used as a guide to explore HIV/AIDS disclosure among men in South Africa. Developed in 1989, the PEN-3 cultural model is used to examine the role of culture in addressing beliefs and behaviors that contribute to people’s health decisions (Airhihenbuwa, 1995; Airhihenbuwa & Webster, 2004). The PEN-3 model emphasizes the need to focus on the cultural factors that influence people’s health behaviors and decisions (Airhihenbuwa, 1995; Airhihenbuwa & Webster, 2004). In other words, the focus should not only be solely on the individual but also on the family and community context that collectively shape health decisions (Airhihenbuwa, 2007b; Iwelunmor, Airhihenbuwa, Okoror, Brown, & BeLue, 2006; Sofolahan et al., 2013).
Figure 1. The PEN-3 model.
PEN-3 has three domains, and each domain has three dimensions (see Figure 1). The three interconnected domains are cultural empowerment (CE), relationships and expectations (RE), and cultural identity (CI). CE considers the positive, existential, and negative cultural values that are factored into health behaviors and decisions (Airhihenbuwa & Webster, 2004). RE considers factors such as perceptions, enablers, and nurturers that influence health behaviors and decisions (Airhihenbuwa & Webster, 2004). CI reveals the appropriate level of focus for health interventions—the person, the extended family, or the neighborhood—by addressing how one’s identity plays a critical role in influencing health decisions (Airhihenbuwa & Webster, 2004). RE is the domain of interest in this study, and we explore the perceptions, enablers, and nurturers (the role of family) that facilitate or hinder disclosure among men living with HIV. While perceptions refer to knowledge, beliefs, or attitudes toward disclosure of HIV seropositive status, enablers are the resources and support system at the community or health care level that facilitate or hinder decisions to disclose (Airhihenbuwa & Webster, 2004). Nurturers are the supportive and/or discouraging influence of family with decisions to disclose (Airhihenbuwa & Webster, 2004).
Methodology Study Area and Sampling The study was conducted in Gugulethu, one of the fastest developing township community in South Africa situated about 20 km outside Cape Town (Moses & Tomlinson, 2013; Reece, 2013). Formed in the 1960s during the apartheid era, Gugulethu is also a predominantly Black residential area currently faced with a number of social issues including extreme poverty, teenage pregnancy, xenophobia, and gang-related violence (Reece, 2013).
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Iwelunmor et al. The township has a population of more than 300,000 people, and majority live in conditions of low socioeconomic status (Reece, 2013). With 11.8% of its residents currently living with HIV, Gugulethu also has the highest prevalence of HIV in the Western Cape region of South Africa (Reece, 2013). This study was part of a 5-year capacity building project that explored HIV and AIDS stigma in South Africa (Airhihenbuwa et al., 2009; Iwelunmor et al., 2010). The project’s goal was to examine contextual factors that may contribute to HIV- and AIDS-related stigma in the community in general, and in the family and health care settings in particular. Focus groups were conducted with key informants to explore HIV and AIDS stigma (Airhihenbuwa et al., 2009; Iwelunmor et al., 2010). Focus groups are ideal in this setting as they facilitate open discussions in ways that allow participants to express their views, including the opportunity to elaborate on comments made by members (Iwelunmor et al., 2010). A purposive sampling approach was used to identify and recruit participants. Trained postgraduate students at the University of the Western Cape in South Africa recruited about 27 men living with HIV and conducted the four focus group discussions. The size of the focus groups ranged from six to seven participants. Ethical approval was granted by Penn State University and Human Sciences Research Council in South Africa. Participants were informed of the study objectives and they read and signed an informed consent form. The focus group interviews were audio-taped with permission from participants, and the interviews were conducted in Xhosa, transcribed, and then translated into English. This article focuses only on the questions on disclosure that were posed to male participants. Specifically, participants were asked, “Who was the first person that you shared news of your status with? Why did you choose that person? What was the reason behind your disclosure?” Probes were used in the focus groups as required (Iwelunmor et al., 2010).
Data Analysis The focus group data were subjected to thematic analysis following the Attride-Stirling protocol (Attride-Stirling, 2001). Specifically, a coding framework was devised to reduce the text into manageable and meaningful segments (Step 1). Next, the links between codes were explored to identify common “basic” themes (relating to the influence of sociocultural factors on HIV disclosure; Attride-Stirling, 2001). These themes were clustered into groups called “organizing themes” and further refined and reduced into three “global themes” (Step 3; AttrideStirling, 2001). The three global themes constitute our “thematic network” (see Table 1), which depicts the key
findings of this study. To ensure intercoder reliability, all authors read the transcripts and were in agreement on the key global themes. The PEN-3 cultural model was also used to organize the key global themes.
Result The key themes identified in the focus group discussions are depicted in Table 1.The findings revealed that perceptions surrounding male identity, coupled with the enabling factors such as community support groups and the influence of family were pivotal in shaping how men living with HIV disclose knowledge of their seropositive status.
Perceptions Surrounding Male Identity and Its Influence With Disclosure According to Airhihenbuwa and Webster (2004), perceptions refer to knowledge, beliefs, or attitudes toward disclosure of HIV seropositive status. In our focus group discussions knowledge of seropositive status, acceptance, reasons, and the process of disclosure among men living with HIV were linked to perceptions surrounding male identity. In South Africa, male identity is an important concept that warrants further analysis to fully understand why men choose to disclose their seropositive status in the way they do. As stated previously, in South Africa different complex social and historical processes have shaped notions of what it means to be a man so much that the conventionally held views about male identity such as with being providers, fathers, head of households, or masculine/ macho (Campbell, 1992; Mkhize, 2006; Montgomery et al., 2006; Morrell, 2001, 2006) influence decisions to disclose knowledge of seropositive status. Participants spoke of how they never perceived that they would be at risk or vulnerable to HIV. One stated the following: You see, HIV is something that is far like a mountain and you think it will never come to you and you tend to take things for granted thinking you will never contract it.
Coupled with the struggle for meaning was the perception that a seropositive status signaled the end of life as it shattered dreams and disrupted even basic obligations for men such as with being partners. Even as participants worked to accept and renegotiate their identities given their status, some frequently stated the following: Would I have a girlfriend, will I find love, will people reject me, or look down on me, will people say get away with your AIDS or don’t eat with us, these are the things that come to mind first once you are faced with HIV.
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Table 1. Key themes identified in focus group discussions. Codes HIV and perceptions of no risk
HIV and shattered life/altered identity
Male identity and threat to gender role
Acceptance of status/timing of disclosure
Reasons for disclosure
The process and strategy of disclosing
Community supporting Lack of support from community
Support groups
Family support
Male family members reactions
Nonsupportive family
Organizing themes
Global themes
1a. HIV is something that is far like a mountain and you think it will never come to you 1b. I never thought of experiencing HIV 1c. HIV is something that a parent thinks will never happen in their house 2a. HIV signals the end of life 2b. Life plans and dreams diminish with HIV 2c. With HIV, will I be able to have a girlfriend, find love 2d. With HIV, will people reject me or look down on me 2e. You think of committing suicide because of status 3a. With HIV disclosure, you become frightened friends and family will perceive you as a “dog” 3b. Male responsibilities and HIV disclosure 3c. Men still have to work even if everyone knows their status 4a. Time enables you to accept status 4b. With acceptance, find at least one person to confide in that will handle matter with care 4c. HIV should be disclosed at the right time, when it suits you 5a. I disclosed because I had questions and I wanted to know more about HIV 5b. You disclose because you do not want to hide so as to get help 5c. You disclose, so that you’re not alone, so that maybe someone will help you with HIV, someone living with HIV, or someone with medicine for it 6a. I contemplated how to reveal status to family, as I did not know how 6b. With disclosure, you contemplate whether people will reject me, or look down on me 6c. I tried to assess situation at home, before disclosing by gauging family’s perception on HIV 6d. I didn’t disclose to everyone, especially extended family 7a. Community encouraged and consoled me after disclosure by saying these things happen to people 8a. When you disclose to community, they have a wrong impression of your life. They say you lived a reckless life 8b. Community thinks because of your status, your life is upside down 8c. Some feel ashamed because of your status and feel sorry for you 8d. Community tell people not to mix with you, because of status 8e. Once, people know your status, they go around talking about you, thinking they are helping, but they are not 9a. With support group, I discovered, I was not alone and with their support, I was able to disclose 9b. With support group, you find solutions, advise, and strength to go home to disclose 10a. Within a family setting, before you disclose, look for someone to disclose to, it could be mother or sister or whoever 10b. I disclosed to my sisters, and they told my grandmother and the whole family 10c. I gave my family information on HIV before disclosing 10d. My family was supportive after disclosure, they talk nice, say to wear warm clothes, and remind to take pills 10e. My family did not treat me bad and I was never abused because of my HIV status 10f. W ith information on HIV, family accepted me after disclosure saying I am their child and they will try to figure out what to do 10g. As long as family gives support, I do not care for people’s perceptions 10h. After disclosing, I was told to drink traditional medicine to clean dirty blood 11a. With the help of other men in my family, I disclosed to everyone 11b. Father downplayed the issue after disclosure, said I was in good health 11c. My uncle was shocked after knowing status, but said if I look after myself, I will live 12a. Some families discriminate after knowing status 12b. Families say, you will infect them, so go away 12c. I cannot disclose to my father because when he is drunk, he will insult me 12d. When you disclose to your family, everybody goes around talking about you
Male identity
For men who choose to conceal knowledge of their seropositive status, most participants believed that the conventional views about male identity, particularly in relation to their responsibilities as providers, fathers, head of households, or masculinity were linked to their decision to hide their status.
Enablers
Nurturers
I think as a man you have this ego thing and think that yea I’m head of the house and I can’t fall apart, so everyone is looking at me, you know, so I can’t come back home and tell them now that I am HIV positive. What are my children going to think, what is my wife going to think, what is going to happen?
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Iwelunmor et al. Participants also spoke of how the perceptions of others influenced decisions to disclose. While perceptions of others were frequently mentioned as an obstacle with disclosure, it appears that “acceptance of status” alongside “choosing the right person and the right time,” to disclose were pivotal in enabling disclosure of their seropositive status. This participant’s words illustrate how the perceptions of others matter with disclosure of seropositive status: Ok once you hear that you have contracted HIV, obviously you become frighten(ed) and in that process of being frighten(ed) you start to recognize that all my friends and family members may perceive me as a dog . . . and at this point you are facing a point of no return that’s when you think of finding at least one person to confide in about your real problem with an expectation that he/she is going to handle the matter with care and . . . you find that you are now free.
Enabling Factors Influencing Disclosure Among Men Living With HIV In our focus group discussions, the enabling factors that influenced decisions to disclose among men living with HIV were linked to what Airhihenbuwa and Webster (2004) describe as resources and institutional support whether at the community or health systems level. With HIV disclosure, despite concerns with the possibility of discrimination, our findings suggests that community members were key sources of support as they helped to facilitate disclosure, and also provide encouragement that led to positive health outcomes in some participants. . This sentiment was echoed by a participant in our study who stated the following: I ended up disclosing to my community members although I constantly worried about how they would treat me. To my surprise they have consoled me and encouraged and even stated that this thing happens to people.
While community support was positive in some cases, in other instances, participants’ described community members as sources of stigma and discrimination, noting that they often hinder efforts to disclose. For example, it was not uncommon for community members to express shame for participants following disclosure of seropositive status. Furthermore, since HIV is predominantly transmitted in South Africa through heterosexual contact, one participant stated that a particular difficulty with disclosing to the community revolved around wrongful perceptions of participant’s identity, as they often linked knowledge of their seropositive status to living a reckless life. The participant stated the following:
Once you tell one person for example, that person will have a wrong impression of you, thinking that your life is upside down, and that perception seats permanently in their minds.
While some community members have a wrong impression of participant’s lives, telling people not to socialize with them, others go around gossiping about participants which some in our focus group discussions felt were not helpful. Nonetheless, in some cases, and even with disclosure, community members often did not believe that participants were HIV positive. One participant summarized their experience by saying the following: Sometimes you find out that there are some in the community who will not believe you when you disclose to them because whenever they see you, they see a healthy person.
Although men are often thought to be reluctant to participate in support groups, some participants in our focus group suggested that they were helpful with disclosing seropositive status. Some participant stated that participation in support groups, particularly the counseling they received enabled them to discover how to disclose their status. One participant explained: One thing that causes you to disclose is the counseling that you receive at the clinic and in the support group, because in the support group you find that you get an opportunity to share your views with others and others in the group also share how they disclosed at home and you find solutions/ advise and strength to go home and disclose.
Nurturing Factors Influencing Disclosure Among Men Living With HIV According to Airhihenbuwa and Webster (2004), nurturers are the supportive and/or discouraging influence of family members with decisions to disclose HIV seropositive status. Indeed, it is now well understood that HIV and AIDS is a complex collective experience shared by many families and communities (Iwelunmor et al., 2006). Studies conducted in South Africa have reported that HIV affects some families in profound and tragic ways, whereas others are supportive and demonstrate remarkable resilience with coping with news of a family member’s seropositive status (Iwelunmor et al., 2006). In our focus group discussions, participants were able to identify multiple positive and negative factors associated with HIV disclosure to family systems. For some participants, although the process of disclosure included contemplating how to reveal knowledge of seropositive status to the family, for others they identified family members who they felt would be supportive of them with the news of their seropositive status. One stated the following:
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Within a family setting, before you disclose, look for someone to disclose to, it could be mother or sister or whoever.
Another participant stated that he disclosed to his sisters, who then disclosed to the entire family, whereas another utilized the help of male relatives to disclose his HIV status to the family. For some participants, the provision of information on HIV coupled with disclosure of seropositive status led to the acceptance of seropositive status. One participant stated the following: It also depends on how much information each family has about AIDS, because there is lack of information in the first place and this is a problem but if people know more about what happens with HIV they will understand that they can stay with you after you disclose. Many families accept status when they receive information about HIV and tell themselves that this is our child what can we do to help.
Family members also readily provided care and support for participants following disclosure of seropositive status. Some organized family meetings to understand participant’s status, others provided food and warm clothes, bathed participants, reminded them to take their medications, and in some cases accompanied them to counseling sessions. In my case I had no problem because my family was supportive for example, before I knew about my status they used to reprimand me with the way I was using alcohol, but now that I know my status and I told them, they talk differently now, they talk right and nice and even if it’s cold they will say do not go outside its cold, go and wear warm clothes, would also remind you to drink your pills, so I would say they are supportive.
In coping with knowledge of seropositive status, participants repeatedly highlighted that not all families are the same. One participant stated that when you tell your family, “Your life is in front of everybody and everyone goes around talking about you.” In some cases, participants stated that it was difficult to disclose to their family members, especially extended family members, as they did not know whether they would discriminate or reject them. In other cases, knowledge of seropositive status led to outright rejection and abandonment with some families feeling ashamed of participants and fearing that they would infect them. In addition, disclosure to family members, especially fathers was said to be a difficult topic. One participant stated that in terms of his experience, he did not disclose to his father for the following reasons: My father used to shout at me when he is angry at night . . . now that I know I am HIV positive, I cannot tell him because when he is drunk he will insult me about the fact that I’m HIV positive.
In some cases, family members were in denial with knowledge of seropositive status, often downplaying the issue and encouraging participants to drink traditional medicines to purify their blood.
Discussion There are relatively few studies that explore the reasons why men living with HIV/AIDS decide to conceal or reveal knowledge of their seropositive status. While previous research suggests that disclosure of seropositive status in general is beneficial in that it facilitates access to social support and social services as well as healthier psychological well-being and adherence to antiretroviral therapy (Kalichman et al., 2003; Sowell, Seals, Phillips, & Julious, 2003; Vu et al., 2012), in the South African context, the HIV disclosure experiences of men cannot be separated from the historical, social, and cultural factors that shaped notions of what it means to be a man. In this article, data from focus group discussions with men living with HIV were gathered to learn more about the sociocultural factors that influence disclosure of seropositive status among men living with HIV. Using the PEN-3 cultural model as our theoretical framework, results from our focus group discussions revealed that perceptions surrounding male identity in South African contexts, coupled with enabling and nurturing factors, may help to understand disclosure and nondisclosure of seropositive status among men living with HIV/AIDS. For example, although men in South Africa and elsewhere are expected to exhibit masculine characteristics such as being strong and not complaining or being providers, fathers, and heads of households, the breakdown of family life in general, and male identity, in particular, during and after apartheid (Campbell, 1992; Montgomery et al., 2006; Morrell, 2001) may invariably explain why some choose to conceal knowledge of their status. Perhaps, the most important insights generated from this study is the notion that acceptance of status was paramount with enabling men to disclose their seropositive status. Furthermore, focus group discussions revealed how enablers such as community factors play a role with influencing disclosure of HIV status among men living with HIV. Contrarily, the wrongful impression of men living with HIV from community members alongside the possibility of stigma and discrimination were frequently highlighted by participants as reasons for deciding not to disclose to community members. However, participants noted that the counseling from support groups were pivotal with discovering how to disclose knowledge of seropositive status. This finding also supports previous research conducted in South Africa which suggests that community support groups are crucial in helping men living with HIV to be more comfortable disclosing to family members (Wouters, van Loon, van Rensburg, & Meulemans,
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Iwelunmor et al. 2009). Finally, our focus group discussions revealed how family systems were important in shaping decisions to disclose. Since ill-health is often the responsibility of the collective, it was not uncommon for men living with HIV in our study to disclose to family members in an attempt to seek their support in coping and adapting to their seropositive status. Our findings support previous research, which highlights the significance of family systems with identifying ways to cope with one’s HIV positive status (Iwelunmor et al., 2006). Some family members in turn were supportive following disclosure of seropositive status, and they provided home-based care for participants; whereas others felt ashamed and rejected participants. This finding also corroborates previous research, which suggests that family systems play both positive and negative roles in supporting family members who are HIV positive (Gilbert & Walker, 2010; Iwelunmor et al., 2006). There are several limitations to this study worth noting. First, the number of men living with HIV/AIDS who participated in our focus group discussions was small, but sufficient for a qualitative study, and as a result the sample size limits definitive generalization of our findings to other men living with HIV/AIDS in other geographical locations. Future research might consider using a larger sample of men living with HIV/AIDS so as to obtain a complete understanding of all the sociocultural factors that influence disclosure of seropositive status among men.. Furthermore, the results of this qualitative study may not be applicable to other contexts or settings, because most of the men who participated in the focus group discussions were already on antiretroviral treatment, some had disclosed their status, and all were attending support groups. However, it is important to note that our use of focus group discussion were ideal in that it allowed participants to freely discuss and express their opinions about some of the issues and challenges they experience with disclosure of seropositive status Our findings also raise important insights for the design of interventions aimed at encouraging disclosure of seropositive status among men living with HIV. Indeed, rather than solely focusing on the factors that contribute to nondisclosure, it is equally important to emphasize the factors that contribute to disclosure among men living with HIV/AIDS, such as health and well-being of female partners and children. Findings from our focus group discussions revealed that notions of male identity in the South African context matters alongside the family systems and community factors. Future interventions should work to address these factors, as they are necessary, with supporting disclosure among men living with HIV.
Conclusion The perceptions of men alongside the influence of enabling and nurturing factors are important in the design
of interventions focused on supporting HIV disclosure decisions. While research exploring the sociocultural factors influencing South African men’s decisions about when, to whom, or how to disclose is limited, findings of this study suggest that HIV interventions need to take these factors into consideration as they highlight some of the reasons why men choose to conceal or reveal knowledge of their seropositive status. Furthermore, paying attention to the sociocultural factors that influence male decisions may subsequently lead to higher rates of disclosure among men living with HIV/AIDS. Acknowledgments We thank the following students for participating in data collection: Vuyisile Mathiti, Heidi Wichman, Tshipinare Marumo, Shahieda Abrahams, Thandiwe Chihana, Nashrien Khan, Roro Makubalo, Xolani Nibe, Gail Roman, Matlakala Pule, and Nadira Omarjee.
Authors’ Note The study protocol was approved by the institutional review boards of Pennsylvania State University and the Human Sciences Research Council of South Africa. Informed consent was obtained from all participants.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the U.S. National Institutes of Health (Grant No. R24 MH068180).
References Airhihenbuwa, C., Okoror, T., Shefer, T., Brown, D., Iwelunmor, J., Smith, E., . . . Dlakulu, R. (2009). Stigma, culture, and HIV and AIDS in the Western Cape, South Africa: An application of the PEN-3 cultural model for community-based research. Journal of Black Psychology, 35, 407-432. Airhihenbuwa, C. O. (1995). Health and culture: Beyond the Western paradigm. Thousand Oaks, CA: Sage. Airhihenbuwa, C. O. (2007a). 2007 SOPHE presidential address: On being comfortable with being uncomfortable: Centering an Africanist vision in our gateway to global health. Health Education & Behavior, 34(1), 31-42. Airhihenbuwa, C. O. (2007b). Healing our differences: The crisis of global health and the politics of identity. Lanham, MD: Rowman & Littlefield. Airhihenbuwa, C. O., & Webster, J. D. (2004). Culture and African contexts of HIV/AIDS prevention, care and support. SAHARA-J: Journal of Social Aspects of HIV/AIDS, 1(1), 4-13.
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Attride-Stirling, J. (2001). Thematic networks: An analytic tool for qualitative research. Qualitative Research, 1, 385-405. Campbell, C. (1992). Learning to kill? Masculinity, the family and violence in Natal. Journal of Southern African Studies, 18, 614-628. Conserve, D. F., King, G., Dévieux, J. G., Jean-Gilles, M., & Malow, R. (2014). Determinants of HIV serostatus disclosure to sexual partner among HIV-positive alcohol users in Haiti. AIDS and Behavior. Advance online publication. doi:10.1007/s10461-013-0685-8 Dageid, W., Govender, K., & Gordon, S. (2012). Masculinity and HIV disclosure among heterosexual South African men: Implications for HIV/AIDS intervention. Culture, Health & Sexuality, 14, 925-940. Derlega, V. J., Winstead, B. A., Greene, K., Serovich, J., & Elwood, W. N. (2004). Reasons for HIV disclosure/nondisclosure in close relationships: Testing a model of HIVdisclosure decision making. Journal of Social and Clinical Psychology, 23, 747-767. Gilbert, L., & Walker, L. (2010). “My biggest fear was that people would reject me once they knew my status . . .”: Stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa. Health & Social Care in the Community, 18, 139-146. Iwelunmor, J., Airhihenbuwa, C., Okoror, T., Brown, D., & BeLue, R. (2006). Family systems and HIV/AIDS in South Africa. International Quarterly of Community Health Education, 27, 321-335. Iwelunmor, J., & Airhihenbuwa, C. O. (2013). Global health governance after 2015. Lancet, 382, 1017-1018. Iwelunmor, J., Zungu, N., & Airhihenbuwa, C. O. (2010). Rethinking HIV/AIDS disclosure among women within the context of motherhood in South Africa. American Journal of Public Health, 100, 1393-1399. Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of Behavioral Medicine, 26, 315-332. Mhlongo, S., Dietrich, J., Otwombe, K. N., Robertson, G., Coates, T. J., & Gray, G. (2013). Factors associated with not testing for HIV and consistent condom use among men in Soweto, South Africa. PloS One, 8(5), e62637. Mkhize, N. (2006). African traditions and the social, economic and moral dimensions of fatherhood. In L. Richter & R. Morrell (Eds.), BABA: Men and fatherhood in South Africa (pp. 183-198). Cape Town, South Africa: HSRC Press. Montgomery, C. M., Hosegood, V., Busza, J., & Timæus, I. M. (2006). Men’s involvement in the South African family: Engendering change in the AIDS era. Social Science & Medicine, 62, 2411-2419. Morrell, R. (2001). Changing men in southern Africa. Pietermaritzburg, South Africa: University of Natal Press. Morrell, R. (2006). Fathers, fatherhood and masculinity in South Africa. L. Richter & R. Morrell (Eds.), BABA: Men
and fatherhood in South Africa (pp. 13-25). Cape Town, South Africa: HSRC Press. Moses, S., & Tomlinson, M. (2013). The fluidity of disclosure: A longitudinal exploration of women’s experience and understanding of HIV disclosure in the context of pregnancy and early motherhood. AIDS Care, 25, 667-675. Olley, B., Seedat, S., & Stein, D. (2004). Self-disclosure of HIV serostatus in recently diagnosed patients with HIV in South Africa. African Journal of Reproductive Health, 8, 71-76. Ramirez-Ferrero, E., & Lusti-Narasimhan, M. (2012). The role of men as partners and fathers in the prevention of motherto-child transmission of HIV and in the promotion of sexual and reproductive health. Reproductive Health Matters, 20, 103-109. Reece, C. (2013). Understanding the risk factors associated with teenage pregnancy in Gugulethu, Western Cape. In M. Mbatha & Y. Ally (Eds.), Some communities imagined (pp. 67-92). Pretoria, South Africa: Histories of the Present Press. Simbayi, L. C., Kalichman, S. C., Strebel, A., Cloete, A., Henda, N., & Mqeketo, A. (2007). Disclosure of HIV status to sex partners and sexual risk behaviours among HIV-positive men and women, Cape Town, South Africa. Sexually Transmitted Infections, 83(1), 29-34. Sofolahan, Y. A., & Airhihenbuwa, C. O. (2013). Cultural expectations and reproductive desires: Experiences of South African women living with HIV/AIDS (WLHA). Health Care for Women International, 34, 263-280. Sowell, R. L., Seals, B. F., Phillips, K. D., & Julious, C. (2003). Disclosure of HIV infection: How do women decide to tell? Health Education Research, 18(1), 32-44. UNAIDS. (2012). Report on the global AIDS epidemic. Geneva, Switzerland: Author. Vu, L., Andrinopoulos, K., Mathews, C., Chopra, M., Kendall, C., & Eisele, T. P. (2012). Disclosure of HIV status to sex partners among HIV-infected men and women in Cape Town, South Africa. AIDS and Behavior, 16, 132-138. World Health Organization. (2012). Guidance on couples HIV Testing and counselling including antiretroviral therapy for treatment and prevention in serodiscordant couples. Geneva, Switzerland: Author. Wong, L. H., Van Rooyen, H., Modiba, P., Richter, L., Gray, G., McIntyre, J. A., . . .Coates, T. (2009). Test and tell: Correlates and consequences of testing and disclosure of HIV status in South Africa (HPTN 043 Project Accept). Journal of Acquired Immune Deficiency Syndromes, 50, 215-222. Wouters, E., van Loon, F., van Rensburg, D., & Meulemans, H. (2009). Community support and disclosure of HIV serostatus to family members by public-sector antiretroviral treatment patients in the Free State Province of South Africa. AIDS Patient Care and STDs, 23, 357-364.
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JMHXXX10.1177/1557988314535235American Journal of Men’s HealthIwelunmor et al.
Article
Sociocultural Factors Influencing HIV Disclosure Among Men in South Africa
American Journal of Men’s Health 2015, Vol. 9(3) 193–200 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1557988314535235 ajmh.sagepub.com
Juliet Iwelunmor, PhD1, Yewande Sofolahan-Oladeinde, PhD2, and Collins O. Airhihenbuwa, PhD3
Abstract In South Africa, more than 2 million people living with HIV are men aged 15 years and older, and heterosexual intercourse remains the predominant mode of HIV transmission. Knowledge of the sociocultural factors that influence men’s decisions about whether, when, or how to disclose seropositive status remains incompletely understood. Using the PEN-3 cultural model as a guide, this study explored the sociocultural factors influencing HIV disclosure among men in South Africa. Four focus group discussions with 27 participants were used to determine the perceptions, enabling and nurturing factors that influence how men chose to reveal or conceal knowledge of their seropositive status. The results revealed that notions of male identity in the South African context, family, and community factors contribute to disclosure and nondisclosure of seropositive status among men living with HIV/AIDS. Future interventions should work to address these factors, as they are necessary with supporting disclosure among men living with HIV. Keywords culture, HIV/AIDS disclosure, men living with HIV/AIDS
Introduction By the end of 2012, there were 6.1 million people living with HIV in South Africa (UNAIDS, 2012). About 17.9% of the prevalence occurred among adults aged 15 to 49 years, and 240,000 people died as a result of HIV (UNAIDS, 2012). According to the latest data from South Africa, more than 2 million people living with HIV are men aged 15 years and older, and heterosexual intercourse remains the predominant mode of HIV transmission (Mhlongo et al., 2013). The World Health Organization (WHO) suggests that about 50% of people living with HIV/AIDS (PLWHA) are in serodiscordant relationships (i.e., they have HIV-negative partners; WHO, 2012). Many of these PLWHA are neither aware of their partners’ statuses nor have they disclosed their status to their partners (WHO, 2012). Most HIV infections in sub-Saharan Africa occur in committed, heterosexual relationships where infected partners may not have disclosed their status (Ramirez-Ferrero & LustiNarasimhan, 2012). In recent years, a growing body of research has explored the disclosure experiences of people living with HIV and AIDS in South Africa (Vu et al., 2012; Wong et al., 2009). Results suggested that most people, particularly men living with HIV, do not disclose knowledge of their seropositive status to their partners (Olley, Seedat, & Stein, 2004; Simbayi et al., 2007). The decision to disclose seropositive status among men is a complex process influenced by multiple factors,
such as knowledge of partner’s HIV status, anticipated support, and being the head of the household (Conserve, King, Dévieux, Jean-Gilles, & Malow, 2014; Morrell, 2001, 2006). In the South African context, it should also be noted that different complex social and historical processes have shaped notions of what it means to be a man (Campbell, 1992). The legacy of apartheid regime alongside labor migration in South Africa undermined the position of men (particularly Black and colored men) as breadwinners in many families and households (Campbell, 1992). Montgomery, Hosegood, Busza, and Timæus (2006) noted that these social processes led to an increase in unemployment, making it difficult for men to provide financially for their families. In Changing Men in Southern Africa, Morrell (2001) suggested that the movement of male labor to mines and cities, the burden of the brutal apartheid system, all of which led to isolation and forced migration also negatively influenced perceptions of men in South Africa. Although the discourse on male identity in South Africa often focus on issues related to 1
University of Illinois at Urbana Champaign, Champaign, IL, USA University of Maryland, Baltimore, MD, USA 3 Pennsylvania State University, University Park, PA, USA 2
Corresponding Author: Juliet Iwelunmor, Department of Kinesiology and Community Health, University of Illinois at Urbana Champaign, 1206 S. Fourth Street, Champaign, IL 61822, USA. Email: [email protected]
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domestic violence and/or aggression, little is known about how men navigate issues related to HIV disclosure. That there might be key perceptions, enabling or nurturing factors associated with how men choose to reveal or conceal knowledge of their seropositive status is unknown. Moreover, an examination of negative consequences of disclosure such as shame, fear of rejection, discrimination, and isolation of loved ones or secondary stigma (Derlega, Winstead, Greene, Serovich, & Elwood, 2004; Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003) and its influence on rates of disclosure among men in South Africa requires further investigation (Dageid, Govender, & Gordon, 2012). While much has been written about HIV disclosure in South Africa, less attention has been given to how sociocultural factors can influence men’s decisions about whether, when, or how to disclose seropositive status. It has long been suggested that any attempt to provide health solutions in sub-Saharan Africa must seriously take into account the social cultural factors that shape both the individual’s decision and its influence on the collective (Airhihenbuwa, 1995; Iwelunmor, Zungu, & Airhihenbuwa, 2010). Sociocultural factors refer to the factors that represent the collective consciousness of people, active enough to influence and condition perception, judgment, communication, and behavior (Airhihenbuwa, 2007b; Iwelunmor & Airhihenbuwa, 2013). Sociocultural factors nurture a state of resilience such that people are able to cope and thrive or negotiate and develop strategies for dealing with complex issues (Airhihenbuwa, 2007a; Airhihenbuwa et al., 2009). This article presents results from focus group discussions on HIV disclosure among men living with HIV. Specifically, we exploredr the subjective experiences of men living with HIV and the extent to which sociocultural factors have facilitated or hindered their decisions to conceal or reveal knowledge of their seropositive status.
Theoretical Framework The PEN-3 cultural model was used as a guide to explore HIV/AIDS disclosure among men in South Africa. Developed in 1989, the PEN-3 cultural model is used to examine the role of culture in addressing beliefs and behaviors that contribute to people’s health decisions (Airhihenbuwa, 1995; Airhihenbuwa & Webster, 2004). The PEN-3 model emphasizes the need to focus on the cultural factors that influence people’s health behaviors and decisions (Airhihenbuwa, 1995; Airhihenbuwa & Webster, 2004). In other words, the focus should not only be solely on the individual but also on the family and community context that collectively shape health decisions (Airhihenbuwa, 2007b; Iwelunmor, Airhihenbuwa, Okoror, Brown, & BeLue, 2006; Sofolahan et al., 2013).
Figure 1. The PEN-3 model.
PEN-3 has three domains, and each domain has three dimensions (see Figure 1). The three interconnected domains are cultural empowerment (CE), relationships and expectations (RE), and cultural identity (CI). CE considers the positive, existential, and negative cultural values that are factored into health behaviors and decisions (Airhihenbuwa & Webster, 2004). RE considers factors such as perceptions, enablers, and nurturers that influence health behaviors and decisions (Airhihenbuwa & Webster, 2004). CI reveals the appropriate level of focus for health interventions—the person, the extended family, or the neighborhood—by addressing how one’s identity plays a critical role in influencing health decisions (Airhihenbuwa & Webster, 2004). RE is the domain of interest in this study, and we explore the perceptions, enablers, and nurturers (the role of family) that facilitate or hinder disclosure among men living with HIV. While perceptions refer to knowledge, beliefs, or attitudes toward disclosure of HIV seropositive status, enablers are the resources and support system at the community or health care level that facilitate or hinder decisions to disclose (Airhihenbuwa & Webster, 2004). Nurturers are the supportive and/or discouraging influence of family with decisions to disclose (Airhihenbuwa & Webster, 2004).
Methodology Study Area and Sampling The study was conducted in Gugulethu, one of the fastest developing township community in South Africa situated about 20 km outside Cape Town (Moses & Tomlinson, 2013; Reece, 2013). Formed in the 1960s during the apartheid era, Gugulethu is also a predominantly Black residential area currently faced with a number of social issues including extreme poverty, teenage pregnancy, xenophobia, and gang-related violence (Reece, 2013).
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Iwelunmor et al. The township has a population of more than 300,000 people, and majority live in conditions of low socioeconomic status (Reece, 2013). With 11.8% of its residents currently living with HIV, Gugulethu also has the highest prevalence of HIV in the Western Cape region of South Africa (Reece, 2013). This study was part of a 5-year capacity building project that explored HIV and AIDS stigma in South Africa (Airhihenbuwa et al., 2009; Iwelunmor et al., 2010). The project’s goal was to examine contextual factors that may contribute to HIV- and AIDS-related stigma in the community in general, and in the family and health care settings in particular. Focus groups were conducted with key informants to explore HIV and AIDS stigma (Airhihenbuwa et al., 2009; Iwelunmor et al., 2010). Focus groups are ideal in this setting as they facilitate open discussions in ways that allow participants to express their views, including the opportunity to elaborate on comments made by members (Iwelunmor et al., 2010). A purposive sampling approach was used to identify and recruit participants. Trained postgraduate students at the University of the Western Cape in South Africa recruited about 27 men living with HIV and conducted the four focus group discussions. The size of the focus groups ranged from six to seven participants. Ethical approval was granted by Penn State University and Human Sciences Research Council in South Africa. Participants were informed of the study objectives and they read and signed an informed consent form. The focus group interviews were audio-taped with permission from participants, and the interviews were conducted in Xhosa, transcribed, and then translated into English. This article focuses only on the questions on disclosure that were posed to male participants. Specifically, participants were asked, “Who was the first person that you shared news of your status with? Why did you choose that person? What was the reason behind your disclosure?” Probes were used in the focus groups as required (Iwelunmor et al., 2010).
Data Analysis The focus group data were subjected to thematic analysis following the Attride-Stirling protocol (Attride-Stirling, 2001). Specifically, a coding framework was devised to reduce the text into manageable and meaningful segments (Step 1). Next, the links between codes were explored to identify common “basic” themes (relating to the influence of sociocultural factors on HIV disclosure; Attride-Stirling, 2001). These themes were clustered into groups called “organizing themes” and further refined and reduced into three “global themes” (Step 3; AttrideStirling, 2001). The three global themes constitute our “thematic network” (see Table 1), which depicts the key
findings of this study. To ensure intercoder reliability, all authors read the transcripts and were in agreement on the key global themes. The PEN-3 cultural model was also used to organize the key global themes.
Result The key themes identified in the focus group discussions are depicted in Table 1.The findings revealed that perceptions surrounding male identity, coupled with the enabling factors such as community support groups and the influence of family were pivotal in shaping how men living with HIV disclose knowledge of their seropositive status.
Perceptions Surrounding Male Identity and Its Influence With Disclosure According to Airhihenbuwa and Webster (2004), perceptions refer to knowledge, beliefs, or attitudes toward disclosure of HIV seropositive status. In our focus group discussions knowledge of seropositive status, acceptance, reasons, and the process of disclosure among men living with HIV were linked to perceptions surrounding male identity. In South Africa, male identity is an important concept that warrants further analysis to fully understand why men choose to disclose their seropositive status in the way they do. As stated previously, in South Africa different complex social and historical processes have shaped notions of what it means to be a man so much that the conventionally held views about male identity such as with being providers, fathers, head of households, or masculine/ macho (Campbell, 1992; Mkhize, 2006; Montgomery et al., 2006; Morrell, 2001, 2006) influence decisions to disclose knowledge of seropositive status. Participants spoke of how they never perceived that they would be at risk or vulnerable to HIV. One stated the following: You see, HIV is something that is far like a mountain and you think it will never come to you and you tend to take things for granted thinking you will never contract it.
Coupled with the struggle for meaning was the perception that a seropositive status signaled the end of life as it shattered dreams and disrupted even basic obligations for men such as with being partners. Even as participants worked to accept and renegotiate their identities given their status, some frequently stated the following: Would I have a girlfriend, will I find love, will people reject me, or look down on me, will people say get away with your AIDS or don’t eat with us, these are the things that come to mind first once you are faced with HIV.
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Table 1. Key themes identified in focus group discussions. Codes HIV and perceptions of no risk
HIV and shattered life/altered identity
Male identity and threat to gender role
Acceptance of status/timing of disclosure
Reasons for disclosure
The process and strategy of disclosing
Community supporting Lack of support from community
Support groups
Family support
Male family members reactions
Nonsupportive family
Organizing themes
Global themes
1a. HIV is something that is far like a mountain and you think it will never come to you 1b. I never thought of experiencing HIV 1c. HIV is something that a parent thinks will never happen in their house 2a. HIV signals the end of life 2b. Life plans and dreams diminish with HIV 2c. With HIV, will I be able to have a girlfriend, find love 2d. With HIV, will people reject me or look down on me 2e. You think of committing suicide because of status 3a. With HIV disclosure, you become frightened friends and family will perceive you as a “dog” 3b. Male responsibilities and HIV disclosure 3c. Men still have to work even if everyone knows their status 4a. Time enables you to accept status 4b. With acceptance, find at least one person to confide in that will handle matter with care 4c. HIV should be disclosed at the right time, when it suits you 5a. I disclosed because I had questions and I wanted to know more about HIV 5b. You disclose because you do not want to hide so as to get help 5c. You disclose, so that you’re not alone, so that maybe someone will help you with HIV, someone living with HIV, or someone with medicine for it 6a. I contemplated how to reveal status to family, as I did not know how 6b. With disclosure, you contemplate whether people will reject me, or look down on me 6c. I tried to assess situation at home, before disclosing by gauging family’s perception on HIV 6d. I didn’t disclose to everyone, especially extended family 7a. Community encouraged and consoled me after disclosure by saying these things happen to people 8a. When you disclose to community, they have a wrong impression of your life. They say you lived a reckless life 8b. Community thinks because of your status, your life is upside down 8c. Some feel ashamed because of your status and feel sorry for you 8d. Community tell people not to mix with you, because of status 8e. Once, people know your status, they go around talking about you, thinking they are helping, but they are not 9a. With support group, I discovered, I was not alone and with their support, I was able to disclose 9b. With support group, you find solutions, advise, and strength to go home to disclose 10a. Within a family setting, before you disclose, look for someone to disclose to, it could be mother or sister or whoever 10b. I disclosed to my sisters, and they told my grandmother and the whole family 10c. I gave my family information on HIV before disclosing 10d. My family was supportive after disclosure, they talk nice, say to wear warm clothes, and remind to take pills 10e. My family did not treat me bad and I was never abused because of my HIV status 10f. W ith information on HIV, family accepted me after disclosure saying I am their child and they will try to figure out what to do 10g. As long as family gives support, I do not care for people’s perceptions 10h. After disclosing, I was told to drink traditional medicine to clean dirty blood 11a. With the help of other men in my family, I disclosed to everyone 11b. Father downplayed the issue after disclosure, said I was in good health 11c. My uncle was shocked after knowing status, but said if I look after myself, I will live 12a. Some families discriminate after knowing status 12b. Families say, you will infect them, so go away 12c. I cannot disclose to my father because when he is drunk, he will insult me 12d. When you disclose to your family, everybody goes around talking about you
Male identity
For men who choose to conceal knowledge of their seropositive status, most participants believed that the conventional views about male identity, particularly in relation to their responsibilities as providers, fathers, head of households, or masculinity were linked to their decision to hide their status.
Enablers
Nurturers
I think as a man you have this ego thing and think that yea I’m head of the house and I can’t fall apart, so everyone is looking at me, you know, so I can’t come back home and tell them now that I am HIV positive. What are my children going to think, what is my wife going to think, what is going to happen?
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Iwelunmor et al. Participants also spoke of how the perceptions of others influenced decisions to disclose. While perceptions of others were frequently mentioned as an obstacle with disclosure, it appears that “acceptance of status” alongside “choosing the right person and the right time,” to disclose were pivotal in enabling disclosure of their seropositive status. This participant’s words illustrate how the perceptions of others matter with disclosure of seropositive status: Ok once you hear that you have contracted HIV, obviously you become frighten(ed) and in that process of being frighten(ed) you start to recognize that all my friends and family members may perceive me as a dog . . . and at this point you are facing a point of no return that’s when you think of finding at least one person to confide in about your real problem with an expectation that he/she is going to handle the matter with care and . . . you find that you are now free.
Enabling Factors Influencing Disclosure Among Men Living With HIV In our focus group discussions, the enabling factors that influenced decisions to disclose among men living with HIV were linked to what Airhihenbuwa and Webster (2004) describe as resources and institutional support whether at the community or health systems level. With HIV disclosure, despite concerns with the possibility of discrimination, our findings suggests that community members were key sources of support as they helped to facilitate disclosure, and also provide encouragement that led to positive health outcomes in some participants. . This sentiment was echoed by a participant in our study who stated the following: I ended up disclosing to my community members although I constantly worried about how they would treat me. To my surprise they have consoled me and encouraged and even stated that this thing happens to people.
While community support was positive in some cases, in other instances, participants’ described community members as sources of stigma and discrimination, noting that they often hinder efforts to disclose. For example, it was not uncommon for community members to express shame for participants following disclosure of seropositive status. Furthermore, since HIV is predominantly transmitted in South Africa through heterosexual contact, one participant stated that a particular difficulty with disclosing to the community revolved around wrongful perceptions of participant’s identity, as they often linked knowledge of their seropositive status to living a reckless life. The participant stated the following:
Once you tell one person for example, that person will have a wrong impression of you, thinking that your life is upside down, and that perception seats permanently in their minds.
While some community members have a wrong impression of participant’s lives, telling people not to socialize with them, others go around gossiping about participants which some in our focus group discussions felt were not helpful. Nonetheless, in some cases, and even with disclosure, community members often did not believe that participants were HIV positive. One participant summarized their experience by saying the following: Sometimes you find out that there are some in the community who will not believe you when you disclose to them because whenever they see you, they see a healthy person.
Although men are often thought to be reluctant to participate in support groups, some participants in our focus group suggested that they were helpful with disclosing seropositive status. Some participant stated that participation in support groups, particularly the counseling they received enabled them to discover how to disclose their status. One participant explained: One thing that causes you to disclose is the counseling that you receive at the clinic and in the support group, because in the support group you find that you get an opportunity to share your views with others and others in the group also share how they disclosed at home and you find solutions/ advise and strength to go home and disclose.
Nurturing Factors Influencing Disclosure Among Men Living With HIV According to Airhihenbuwa and Webster (2004), nurturers are the supportive and/or discouraging influence of family members with decisions to disclose HIV seropositive status. Indeed, it is now well understood that HIV and AIDS is a complex collective experience shared by many families and communities (Iwelunmor et al., 2006). Studies conducted in South Africa have reported that HIV affects some families in profound and tragic ways, whereas others are supportive and demonstrate remarkable resilience with coping with news of a family member’s seropositive status (Iwelunmor et al., 2006). In our focus group discussions, participants were able to identify multiple positive and negative factors associated with HIV disclosure to family systems. For some participants, although the process of disclosure included contemplating how to reveal knowledge of seropositive status to the family, for others they identified family members who they felt would be supportive of them with the news of their seropositive status. One stated the following:
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Within a family setting, before you disclose, look for someone to disclose to, it could be mother or sister or whoever.
Another participant stated that he disclosed to his sisters, who then disclosed to the entire family, whereas another utilized the help of male relatives to disclose his HIV status to the family. For some participants, the provision of information on HIV coupled with disclosure of seropositive status led to the acceptance of seropositive status. One participant stated the following: It also depends on how much information each family has about AIDS, because there is lack of information in the first place and this is a problem but if people know more about what happens with HIV they will understand that they can stay with you after you disclose. Many families accept status when they receive information about HIV and tell themselves that this is our child what can we do to help.
Family members also readily provided care and support for participants following disclosure of seropositive status. Some organized family meetings to understand participant’s status, others provided food and warm clothes, bathed participants, reminded them to take their medications, and in some cases accompanied them to counseling sessions. In my case I had no problem because my family was supportive for example, before I knew about my status they used to reprimand me with the way I was using alcohol, but now that I know my status and I told them, they talk differently now, they talk right and nice and even if it’s cold they will say do not go outside its cold, go and wear warm clothes, would also remind you to drink your pills, so I would say they are supportive.
In coping with knowledge of seropositive status, participants repeatedly highlighted that not all families are the same. One participant stated that when you tell your family, “Your life is in front of everybody and everyone goes around talking about you.” In some cases, participants stated that it was difficult to disclose to their family members, especially extended family members, as they did not know whether they would discriminate or reject them. In other cases, knowledge of seropositive status led to outright rejection and abandonment with some families feeling ashamed of participants and fearing that they would infect them. In addition, disclosure to family members, especially fathers was said to be a difficult topic. One participant stated that in terms of his experience, he did not disclose to his father for the following reasons: My father used to shout at me when he is angry at night . . . now that I know I am HIV positive, I cannot tell him because when he is drunk he will insult me about the fact that I’m HIV positive.
In some cases, family members were in denial with knowledge of seropositive status, often downplaying the issue and encouraging participants to drink traditional medicines to purify their blood.
Discussion There are relatively few studies that explore the reasons why men living with HIV/AIDS decide to conceal or reveal knowledge of their seropositive status. While previous research suggests that disclosure of seropositive status in general is beneficial in that it facilitates access to social support and social services as well as healthier psychological well-being and adherence to antiretroviral therapy (Kalichman et al., 2003; Sowell, Seals, Phillips, & Julious, 2003; Vu et al., 2012), in the South African context, the HIV disclosure experiences of men cannot be separated from the historical, social, and cultural factors that shaped notions of what it means to be a man. In this article, data from focus group discussions with men living with HIV were gathered to learn more about the sociocultural factors that influence disclosure of seropositive status among men living with HIV. Using the PEN-3 cultural model as our theoretical framework, results from our focus group discussions revealed that perceptions surrounding male identity in South African contexts, coupled with enabling and nurturing factors, may help to understand disclosure and nondisclosure of seropositive status among men living with HIV/AIDS. For example, although men in South Africa and elsewhere are expected to exhibit masculine characteristics such as being strong and not complaining or being providers, fathers, and heads of households, the breakdown of family life in general, and male identity, in particular, during and after apartheid (Campbell, 1992; Montgomery et al., 2006; Morrell, 2001) may invariably explain why some choose to conceal knowledge of their status. Perhaps, the most important insights generated from this study is the notion that acceptance of status was paramount with enabling men to disclose their seropositive status. Furthermore, focus group discussions revealed how enablers such as community factors play a role with influencing disclosure of HIV status among men living with HIV. Contrarily, the wrongful impression of men living with HIV from community members alongside the possibility of stigma and discrimination were frequently highlighted by participants as reasons for deciding not to disclose to community members. However, participants noted that the counseling from support groups were pivotal with discovering how to disclose knowledge of seropositive status. This finding also supports previous research conducted in South Africa which suggests that community support groups are crucial in helping men living with HIV to be more comfortable disclosing to family members (Wouters, van Loon, van Rensburg, & Meulemans,
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Iwelunmor et al. 2009). Finally, our focus group discussions revealed how family systems were important in shaping decisions to disclose. Since ill-health is often the responsibility of the collective, it was not uncommon for men living with HIV in our study to disclose to family members in an attempt to seek their support in coping and adapting to their seropositive status. Our findings support previous research, which highlights the significance of family systems with identifying ways to cope with one’s HIV positive status (Iwelunmor et al., 2006). Some family members in turn were supportive following disclosure of seropositive status, and they provided home-based care for participants; whereas others felt ashamed and rejected participants. This finding also corroborates previous research, which suggests that family systems play both positive and negative roles in supporting family members who are HIV positive (Gilbert & Walker, 2010; Iwelunmor et al., 2006). There are several limitations to this study worth noting. First, the number of men living with HIV/AIDS who participated in our focus group discussions was small, but sufficient for a qualitative study, and as a result the sample size limits definitive generalization of our findings to other men living with HIV/AIDS in other geographical locations. Future research might consider using a larger sample of men living with HIV/AIDS so as to obtain a complete understanding of all the sociocultural factors that influence disclosure of seropositive status among men.. Furthermore, the results of this qualitative study may not be applicable to other contexts or settings, because most of the men who participated in the focus group discussions were already on antiretroviral treatment, some had disclosed their status, and all were attending support groups. However, it is important to note that our use of focus group discussion were ideal in that it allowed participants to freely discuss and express their opinions about some of the issues and challenges they experience with disclosure of seropositive status Our findings also raise important insights for the design of interventions aimed at encouraging disclosure of seropositive status among men living with HIV. Indeed, rather than solely focusing on the factors that contribute to nondisclosure, it is equally important to emphasize the factors that contribute to disclosure among men living with HIV/AIDS, such as health and well-being of female partners and children. Findings from our focus group discussions revealed that notions of male identity in the South African context matters alongside the family systems and community factors. Future interventions should work to address these factors, as they are necessary, with supporting disclosure among men living with HIV.
Conclusion The perceptions of men alongside the influence of enabling and nurturing factors are important in the design
of interventions focused on supporting HIV disclosure decisions. While research exploring the sociocultural factors influencing South African men’s decisions about when, to whom, or how to disclose is limited, findings of this study suggest that HIV interventions need to take these factors into consideration as they highlight some of the reasons why men choose to conceal or reveal knowledge of their seropositive status. Furthermore, paying attention to the sociocultural factors that influence male decisions may subsequently lead to higher rates of disclosure among men living with HIV/AIDS. Acknowledgments We thank the following students for participating in data collection: Vuyisile Mathiti, Heidi Wichman, Tshipinare Marumo, Shahieda Abrahams, Thandiwe Chihana, Nashrien Khan, Roro Makubalo, Xolani Nibe, Gail Roman, Matlakala Pule, and Nadira Omarjee.
Authors’ Note The study protocol was approved by the institutional review boards of Pennsylvania State University and the Human Sciences Research Council of South Africa. Informed consent was obtained from all participants.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the U.S. National Institutes of Health (Grant No. R24 MH068180).
References Airhihenbuwa, C., Okoror, T., Shefer, T., Brown, D., Iwelunmor, J., Smith, E., . . . Dlakulu, R. (2009). Stigma, culture, and HIV and AIDS in the Western Cape, South Africa: An application of the PEN-3 cultural model for community-based research. Journal of Black Psychology, 35, 407-432. Airhihenbuwa, C. O. (1995). Health and culture: Beyond the Western paradigm. Thousand Oaks, CA: Sage. Airhihenbuwa, C. O. (2007a). 2007 SOPHE presidential address: On being comfortable with being uncomfortable: Centering an Africanist vision in our gateway to global health. Health Education & Behavior, 34(1), 31-42. Airhihenbuwa, C. O. (2007b). Healing our differences: The crisis of global health and the politics of identity. Lanham, MD: Rowman & Littlefield. Airhihenbuwa, C. O., & Webster, J. D. (2004). Culture and African contexts of HIV/AIDS prevention, care and support. SAHARA-J: Journal of Social Aspects of HIV/AIDS, 1(1), 4-13.
Downloaded from jmh.sagepub.com at University of Otago Library on November 13, 2015
200
American Journal of Men’s Health 9(3)
Attride-Stirling, J. (2001). Thematic networks: An analytic tool for qualitative research. Qualitative Research, 1, 385-405. Campbell, C. (1992). Learning to kill? Masculinity, the family and violence in Natal. Journal of Southern African Studies, 18, 614-628. Conserve, D. F., King, G., Dévieux, J. G., Jean-Gilles, M., & Malow, R. (2014). Determinants of HIV serostatus disclosure to sexual partner among HIV-positive alcohol users in Haiti. AIDS and Behavior. Advance online publication. doi:10.1007/s10461-013-0685-8 Dageid, W., Govender, K., & Gordon, S. (2012). Masculinity and HIV disclosure among heterosexual South African men: Implications for HIV/AIDS intervention. Culture, Health & Sexuality, 14, 925-940. Derlega, V. J., Winstead, B. A., Greene, K., Serovich, J., & Elwood, W. N. (2004). Reasons for HIV disclosure/nondisclosure in close relationships: Testing a model of HIVdisclosure decision making. Journal of Social and Clinical Psychology, 23, 747-767. Gilbert, L., & Walker, L. (2010). “My biggest fear was that people would reject me once they knew my status . . .”: Stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa. Health & Social Care in the Community, 18, 139-146. Iwelunmor, J., Airhihenbuwa, C., Okoror, T., Brown, D., & BeLue, R. (2006). Family systems and HIV/AIDS in South Africa. International Quarterly of Community Health Education, 27, 321-335. Iwelunmor, J., & Airhihenbuwa, C. O. (2013). Global health governance after 2015. Lancet, 382, 1017-1018. Iwelunmor, J., Zungu, N., & Airhihenbuwa, C. O. (2010). Rethinking HIV/AIDS disclosure among women within the context of motherhood in South Africa. American Journal of Public Health, 100, 1393-1399. Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of Behavioral Medicine, 26, 315-332. Mhlongo, S., Dietrich, J., Otwombe, K. N., Robertson, G., Coates, T. J., & Gray, G. (2013). Factors associated with not testing for HIV and consistent condom use among men in Soweto, South Africa. PloS One, 8(5), e62637. Mkhize, N. (2006). African traditions and the social, economic and moral dimensions of fatherhood. In L. Richter & R. Morrell (Eds.), BABA: Men and fatherhood in South Africa (pp. 183-198). Cape Town, South Africa: HSRC Press. Montgomery, C. M., Hosegood, V., Busza, J., & Timæus, I. M. (2006). Men’s involvement in the South African family: Engendering change in the AIDS era. Social Science & Medicine, 62, 2411-2419. Morrell, R. (2001). Changing men in southern Africa. Pietermaritzburg, South Africa: University of Natal Press. Morrell, R. (2006). Fathers, fatherhood and masculinity in South Africa. L. Richter & R. Morrell (Eds.), BABA: Men
and fatherhood in South Africa (pp. 13-25). Cape Town, South Africa: HSRC Press. Moses, S., & Tomlinson, M. (2013). The fluidity of disclosure: A longitudinal exploration of women’s experience and understanding of HIV disclosure in the context of pregnancy and early motherhood. AIDS Care, 25, 667-675. Olley, B., Seedat, S., & Stein, D. (2004). Self-disclosure of HIV serostatus in recently diagnosed patients with HIV in South Africa. African Journal of Reproductive Health, 8, 71-76. Ramirez-Ferrero, E., & Lusti-Narasimhan, M. (2012). The role of men as partners and fathers in the prevention of motherto-child transmission of HIV and in the promotion of sexual and reproductive health. Reproductive Health Matters, 20, 103-109. Reece, C. (2013). Understanding the risk factors associated with teenage pregnancy in Gugulethu, Western Cape. In M. Mbatha & Y. Ally (Eds.), Some communities imagined (pp. 67-92). Pretoria, South Africa: Histories of the Present Press. Simbayi, L. C., Kalichman, S. C., Strebel, A., Cloete, A., Henda, N., & Mqeketo, A. (2007). Disclosure of HIV status to sex partners and sexual risk behaviours among HIV-positive men and women, Cape Town, South Africa. Sexually Transmitted Infections, 83(1), 29-34. Sofolahan, Y. A., & Airhihenbuwa, C. O. (2013). Cultural expectations and reproductive desires: Experiences of South African women living with HIV/AIDS (WLHA). Health Care for Women International, 34, 263-280. Sowell, R. L., Seals, B. F., Phillips, K. D., & Julious, C. (2003). Disclosure of HIV infection: How do women decide to tell? Health Education Research, 18(1), 32-44. UNAIDS. (2012). Report on the global AIDS epidemic. Geneva, Switzerland: Author. Vu, L., Andrinopoulos, K., Mathews, C., Chopra, M., Kendall, C., & Eisele, T. P. (2012). Disclosure of HIV status to sex partners among HIV-infected men and women in Cape Town, South Africa. AIDS and Behavior, 16, 132-138. World Health Organization. (2012). Guidance on couples HIV Testing and counselling including antiretroviral therapy for treatment and prevention in serodiscordant couples. Geneva, Switzerland: Author. Wong, L. H., Van Rooyen, H., Modiba, P., Richter, L., Gray, G., McIntyre, J. A., . . .Coates, T. (2009). Test and tell: Correlates and consequences of testing and disclosure of HIV status in South Africa (HPTN 043 Project Accept). Journal of Acquired Immune Deficiency Syndromes, 50, 215-222. Wouters, E., van Loon, F., van Rensburg, D., & Meulemans, H. (2009). Community support and disclosure of HIV serostatus to family members by public-sector antiretroviral treatment patients in the Free State Province of South Africa. AIDS Patient Care and STDs, 23, 357-364.
Downloaded from jmh.sagepub.com at University of Otago Library on November 13, 2015
