Exploring the Cultural Context of HIV Stigma on Antiretroviral Therapy Adherence Among People Living with HIV/AIDS in Southwest Nigeria

Abstract

This study explored the cultural context of HIV stigma on antiretroviral therapy adherence among people living with HIV/AIDS (PLWHA) in southwest Nigeria. Using purposive sampling, participants were recruited through a community-based organization. Consenting PLWHA participated in in-depth interviews and focus group discussions that were audio-taped. Using Deacon's conceptual framework of stigma, four opinion guides facilitated the interviews and discussions. Interviews and discussions were conducted in three languages, and lasted from 45 min to 2 h. A total of 35 women and men participated in the study. Participants ranged in age from 22 to 58 years, with an average of 4 years since clinical diagnosis of HIV/AIDS. All participants were receiving ART, and self-reported high adherence level. Using thematic analysis, three themes emerged: life before ART, life after ART, and strategies used in ART adherence. In describing their lives before ART, participants reported experiencing self, anticipated and enacted stigmas due to their sickly appearance from HIV-related complications. After initiating ART, participants talked about friends and families “returning to them” and “apologizing for abandoning” them once they started “looking well.” In response to anticipated stigma, many reported sticking to their medications. Drawing from the cultural milieu as part of their strategies, participants discussed the use of plastic bags for medications and àkònpó, as ways of diverting attention from their use of many medications. Implications for ART program policies and stigma interventions were discussed, along with limitation of a short-term ART study on stigma since long-term use of ART can contribute to stigma by way of lipoatrophy as PLWHA age.

Introduction

N igeria, with an estimated 154 million people, is the most populous country in sub-Sahara Africa.¹ Though the HIV/AIDS prevalence rate is low at 3.6% in comparison to other African countries, the country is home to 3.3 million people living with HIV/AIDS (PLWHA). This makes Nigeria the second country in the world after South Africa with the highest number of people living with HIV/AIDS.² With global initiatives such as the US Presidential Emergency Plan for AIDS Relief (PEPFAR), the Nigerian government has been able to scale up the provision of antiretroviral therapy (ART) and increase the number of people living with HIV/AIDS who are on ART.³ According to the UNAIDS Global AIDS Epidemic Report, the number of people receiving ART in Nigeria increased from 238,659 in 2008 to 302,973 in 2009, and 23% of adults living with HIV/AIDS received ART in 2010.³ Despite these improvements, PLWHA still face major challenges, not just in accessing ART, but also in adherence to the medications.

Background

A principal factor in the success of ART provision in abating HIV disease progression is patient adherence to the regimen. Treatment adherence is described as the practice of taking medications consistent with the prescribed treatment regimen, at the correct time interval and with the exact dose.⁴ Adherence is described as a complex dynamic behavior influenced by a number of factors, and it remains a public health concern in the treatment and control of HIV/AIDS.⁵ While newer and more potent non-nucleoside reverse-transcriptase inhibitor regimens have shown viral suppression at moderate adherence rates (from 54% to 70%),^6,7 Paterson and colleagues reported a required adherence rate of 95% to avoid treatment failure and/or rapid development of drug resistance.⁸ This high level of adherence may be necessary in a resource-poor setting like Nigeria where the first-line ART regimen consists of a generic fixed-dose combination of two nucleotide reverse transcriptase inhibitors (NRTIs) (lamivudine+stavudine) and one NNRTI (nevirapine). Bansberg confirmed that patients on unboosted therapy, similar to the ones available in Nigeria, require 95% or more adherence level to achieve viral suppression of less than 400 copies/ml.⁶ However, research on ART adherence in Nigeria has shown a wide range of adherence levels. For example, Afolabi and colleagues reported a 44% adherence rate among 120 participants,⁹ while Olowookere and colleagues reported a 62.9% adherence rate among 318 patients.¹⁰ On the other hand, Habib and colleagues reported an adherence rate of 96–98% among fasting and non-fasting Muslims during the Ramadan fasting season.¹¹ Factors for nonadherence include seeking alternative or traditional care, financial cost related to transportation among other things, side effects of medication, and the stigma of being identified as HIV positive.^9,12

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A review of literature on HIV stigma in Nigeria by Monjok and colleagues showed a dearth of such research.¹⁷ Much of what is published focuses on attitudes towards PLWHA by the general population, such as students, family, friends, and community members. However, as argued by Deacon, research on HIV/AIDS stigma that treats the link between stigmatizing attitudes and discriminatory actions as seamless, creates the idea that one with stigmatizing attitudes will automatically discriminate, and one who discriminates against PLWHA must be because of stigma.¹⁸ Rather, Deacon posits that stigma is a social process that is constantly changing and often resisted rather than just an individual trait.¹⁸ This is evidenced in the literature on HIV disclosure among PLWHA showing that PLWHA choose not to disclose out of fear of experiencing stigma, especially in cases where the physical manifestations of HIV are absent.¹⁹ In such cases, discriminatory acts that may accompany disclosure are avoided. If experienced at all by PLWHA, it may not be because of HIV-related stigma. As such, “conceptualizing stigma as a social process enables us to understand stigma as something that is constantly re-enacted or re-created in different situations.”¹⁸ HIV-related stigma is therefore reformable because the meanings attached to HIV/AIDS representations shift over time.²⁰ The implication of this is that provision of ART will affect how community members react to PLWHA, and how PLWHA perceive and respond to stigma.

While the studies reviewed above listed HIV stigma as factor for nonadherence to ART in Nigeria, there is no published research that has explored the impact of ART provision on HIV stigma in Nigeria. Drawing from work in other African countries, there are reasons to suggest that the rollout of ART provision in Africa may not automatically eliminate HIV stigma.²⁰ Roura and colleagues reported from rural Tanzania that, though ART has transformed HIV into a manageable disease thereby contributing to reduction in self-stigma among PLWHA, there are emerging new sources of stigma associated with ART provision.²¹ This is due in large part to fear from community members who complain that HIV patients have become more “mobile and difficult to identify” because they regained their health and engage in sexual relations, spreading the disease. Community members suggested “marking” ART recipients with signs and “putting them in isolation camps.”²¹ This has elevated the level of anticipated stigma among PLWHA and also decreased the uptake of voluntary counseling and testing in the community. In Uganda, Atuyambe and colleagues reported that community members expressed fear that ART would promote HIV transmission because “it would be difficult to differentiate between HIV-positive and HIV-negative persons since they all looked healthy.”²² Wolfe and colleagues also found that 94% of patients on ART in a Botswana clinic reported keeping their HIV status secret from their community, and 69% withheld the information from their family members due to “pervasive stigma.”²³ Gilbert and Walker also reported similar findings of intense levels of anticipated stigma among PLWHA participating in ART program in South Africa.²⁴ In fact, a longitudinal study measuring changes in the magnitude and character of stigma in South Africa concluded that stigma increased despite provision of ART.²⁰

As stated earlier, there is dearth of information on the impact of ART provision on HIV stigma in Nigeria. In addition, studies from other African countries reviewed above examined the negative impact of HIV stigma on PLWHA in preventing HIV disclosure and interrupting treatment. However, the question is: Is there a potential positive impact of HIV stigma on ART adherence? That is, can HIV stigma increase ART adherence among PLWHA, especially in response to anticipated stigma? Using qualitative methodology, this study explored the cultural context of the dynamics between HIV stigma and ART adherence among PLWHA in southwest Nigeria.

Conceptual framework

Drawing from the conceptual work by Deacon, stigma is understood in this study as an ideology and a culturally constructed social process that is constantly changing and often re-enacted or re-created in different situations.¹⁸ As such, there are different types of stigma (e.g., self-stigma, anticipated stigma, enacted stigma) and sources of stigma (e.g., burden-related stigma, fear stigma, blame stigma). For example, Deacon described self-stigmatization as “an ideological process that need not depend on the existence of discrimination.”¹⁸ Self-stigma is therefore internalizing feelings of shame or blame based on negative social judgments of one's identity, while anticipated stigma is reaction PLWHAs expect from others if it were known that they were HIV positive.¹⁸ Enacted stigma is defined as actual acts or what people do to unfairly disadvantaged a known or suspected HIV person, while burden-related stigma, a source of stigma, is because of PLWHA's inability to perform productive activities and care for self.¹⁸

Methods

Research sites

Data collection took place in Ibadan and Eruwa, in southwest Nigeria. Ibadan is one of the largest metropolitan cities in southwest Nigeria, with an estimated population of 3 million people of different nationalities and ethnicities.²⁵ As a metropolitan city that lies on a main transport route to the northern parts of Nigeria, Ibadan serves as a major intersection with a large truck depot.²⁶ Being the administrative capital of Oyo State, it is the seat of the legislature and the executive branches of the state government, with the ministries, agencies, and parastatals, including the State Action Committee on AIDS, which is the lead agency for AIDS response in Oyo state. Most of the HIV/AIDS response activities are based in this conurbation which hosts six out of the nine treatment centers in Oyo State. Ibadan is home to a number of companies, businesses, and higher institutions of learning. Eruwa is a small rural town located about 38 miles outside of Ibadan in the Ibarapa East Local Government Area (LGA) of Oyo state.² Ibarapa East LGA has an estimated population of 134,101 shared between Eruwa, Lanlate, and other towns.²⁷ The inhabitants are subsistent farmers and petty traders. The official HIV prevalence rate of Oyo state is 3%.²⁸ However, the government acknowledged the plausibility of higher HIV prevalence rates in the rural areas where Eruwa belongs (unpublished data). The predominant ethnic groups in both sites are Yorubas, and the sites were selected based on access to PLWHA through community-based organization (CBO).

Recruitment

Participants were purposefully recruited through a CBO that has service centers in both research sites.²⁹ The decision to recruit through a CBO was based on initial groundwork indicating that some PLWHA feel coerced when recruited through hospitals, and many PLWHA seek care and support through CBO, and are more willing to participate. The CBO is made up of a physician, four staffs, and five volunteers. The CBO provides HIV counseling and testing, antiretroviral therapy referral, and HIV outreach educational programs in both communities. The CBO also works closely with hospitals and clinics in both communities to expedite PLWHA access to medications and support. Each community has an established HIV support group that meets bi-weekly. The CBO provided information about the study to peer leaders of the support groups in both study settings. Each peer leader then contacted their members about the study. As agreed upon by members in these support groups, focus group discussions and in-depth interviews were scheduled to coincide with their support meetings.

Discussion guide and interview procedures

The development of the discussion guide was informed by literature review on lived experiences of PLWHA, suggested research questions and methodologies by Deacon and research team members' experience of working with PLWHA in the community (an average of 15 years).¹⁸ Without using the word ‘stigma’, the guide contained four main questions that explored participants' reaction to HIV diagnosis; challenges experienced in living with HIV/AIDS; changes made (positive and negative) since HIV diagnosis; and family, friends, and community members' reaction to their HIV status. The word ‘stigma’ was only used after it was introduced by any of the participants. The discussion guide was translated into Yoruba and Pidgin English (the two common languages in the communities) and back-translated to ensure consistency and verify content. In addition, the decision not to use the word ‘stigma’ was based on the fact that there is no local language word for it.

Before starting the discussions and interviews, the purpose of the study was explained to participants and they were advised that participation was completely voluntary. The criteria for participation were 18 years or older and clinical diagnosis of HIV sero-positive status. Consenting self-identified HIV positive participants either signed or thumb-printed the consent forms. Participants then completed (either by self or through the assistance of a facilitator) a survey on gender, age, education, ethnic group, religion, employment, marital status, number of children, clinical diagnosis of HIV, and length of time since HIV diagnosis. CBO staffs confirmed clinical diagnoses of participants' HIV status.

Data were collected using in-depth interviews and focus group discussions. Combining these approaches allowed participants to express their views on a range of issues in the most comfortable context for them. Detailed field notes were taken during focus groups and interviews to allow for continuous reflexivity on the part of the research team members, and to record observed activities and events by participants.³⁰ Following the completion of the consent forms and surveys, participants were asked individually whether they want to be part of a group discussion or meet for one-on-one in-depth interview. All agreed to the group discussion with the exception of those who came late or indicated that they had other appointments and may have had to leave before the end of the group discussion. The discussions and interviews took place at the same location used for support group meetings. As confirmed by peer leaders, all members of the HIV support group in each community came for the study. In line with Deacon's recommendations on providing supportive function for communities while conducting research, information session on HIV nutrition and problem solving ideas based on group consensus of what issues affect PLWHA in the specific community was offered, especially in Eruwa.¹⁸

The focus groups and in-depth interviews were conducted in three languages: English, Pidgin English, and Yoruba. This was to enable participants' to express themselves in the language(s) with which they were most comfortable and to allow the use of local words that could not be translated into English, or words with meanings that may have become lost in translation. Interviews conducted in Ibadan used all languages, while interviews conducted in Eruwa used mainly Yoruba, with occasional English words. All members of the research team were fluent in the languages. The first two authors conducted the women's focus groups, while the third author conducted the men's focus groups and interviews. Discussions and interviews were conducted along gender lines to allow for open discussion among participants and in recognition of the culture and gender dynamics in the study settings. Probes were used as needed to elicit more responses or expand ideas expressed by participants.

Four focus groups were conducted: two in each community (one male/female) and eight in-depth interviews (three in Ibadan, and five in Eruwa). The groups only met once, had an average of five to eight participants, and lasted for 2 h. The in-depth interviews lasted for an average of 45 min. Each facilitator provided summaries of the discussions and interviews at the end of each meeting to allow for confirmation and clarification by participants. Participants were given monetary incentives to compensate for their time and transportation costs. All discussions and interviews were audio taped and transcribed verbatim, first into the language in which the discussion or interview was conducted, if not in English, and then translated into English. Interviews and discussions were transcribed by the third author, and verified by the first author. All data was loaded into NVivo 7.0 software package for qualitative data management to facilitate data analysis. The Institutional Review Board at Purdue University approved the study.

Data analysis

The data were analyzed using thematic analysis guided by social constructivist thinking. Social constructivist thinking postulates that individuals construct concepts and schemes to make sense of their experiences, and continually modify these constructions in light of new experiences.³¹ These subjective meanings of experiences “are negotiated socially and historically, and formed through interaction with others, historical and cultural norms that operate in individual's lives”.³² This approach was chosen because stigma is a social process that is constantly negotiated and re-evaluated in light of new experiences, such as HIV/AIDS, and adherence is a social phenomenon that demonstrates people's understanding of the value of treatments in their daily lives based on the meaning they construct and ascribe to the treatment.⁴

Braun and Clarke's guide³³ on conducting thematic analysis was employed. Prior to coding, transcripts were read and re-read to allow for complete immersion in the data, to identify possible patterns, and to drive the inductive process.³³ This approach allowed for noting emergent themes from the data without any preconceived hypothesis. Transcripts were then coded using open coding, such that each unit of text was assigned a code(s).³⁴ For the coding process, both inductive and deductive approaches were used. The deductive approach was guided by the discussion guides with the aim of explaining and/or confirming emergent themes from the inductive process described above. All transcripts were coded by two members of the research team and corroborated by a third. Codes were reviewed and evaluated to ensure inter-coder reliability, and any discrepancy was resolved through group discussion. Thirty initial codes were generated. Using axial coding, the initial codes were collated for specific themes by reorganizing and making connections between categories and subcategories, generating nine thematic categories. Themes dealing with the same idea or issue (such as types of stigma, sources of stigma, response to stigma) were grouped together in analytic categories, generating three thematic categories, and eight subthemes. An exhaustive set of data to support each thematic category was identified. The evaluation and review of codes and interpretation of meanings was guided by literature review on lived experiences of HIV patients, authors' experience in working with PLWHA in the community, authors' shared cultural norms with participants, and detailed observational field notes. The relevancy and validation of interpretations were verified by an independent investigator and CBO staffs. The findings presented here reflect the range of responses from participants, and mainly describe the various ways in which HIV-related stigma has impacted ART adherence among them.

Results

Participants

Thirty-five PLWHA participated in the focus groups and in-depth interviews (17 men, 18 women). There were a total of 16 participants in Ibadan and 19 in Eruwa. As shown in Table 1, participants' age range from 22 to 58, with an average of 4 years since clinical diagnosis of HIV. Most participants were married with children, and about 75% were unemployed. More than half of the participants had high school or less educational level, and a majority reported not having enough money for basic things like food and clothes. All participants were receiving ART through the PEPFAR program, and all self-reported high adherence level. Although all participants discussed their experience in living with HIV/AIDS, and how they found out about their sero-positive status, analysis of their responses revealed three key themes in how they construct meanings around HIV stigma and ART adherence: (1) life before ART; (2) life after ART; and (3) strategies used for ART adherence (Table 2). Besides differential access to treatment resources, there were no thematic differences in participants' description of their experiences based on their place of residence (urban versus rural).

Table 1.

Demographic Profile of Participants in Ibadan and Eruwa

	Ibadan	Eruwa
Variables	Number of participants
Gender
Male	10	7
Female	6	12
Age (range)
Low	30	22
High	53	58
Ethnicity
Yoruba	15	18
Idoma	1
Hausa/Fulani		1
Educational level
No education		14
Elementary (grade 1–5)	3	1
Middle school (grade 6–8)	2	2
High school (9–12)	6	2
Vocational/technical school	2
2 year college	1
4 year college	2
Marital status
Yes	14	17
No		1
Widow	2	1
Separated/divorced
Employed	5	3
Unemployed	11	16
Description of household situation
Not enough money for basic things like food and clothes	14	19
Have money for food & clothes, but short on many other things	2
Average length of clinical diagnosis of HIV	6.23	1.89
Total number of participants	16	19

Table 2.

Principal Themes Elicited by Participants

Life before ART	Life after ART	ART adherence strategies
Sickly appearance• Facial/body changes from HIV complications	Healthy appearance• Improved facial/body habitus	Navigating strategies: life changes made and planning ahead• Reduced social activities
Family/community reaction• Withdrawal, rejection, abandonment	Family/community reaction• Returning and/or accepting of PLWHA	Negotiating strategies: bargaining tactics to adhere and/or prevent disclosure• Use of plastic bags to store medications• Cultural practice of akòn o
PLWHA reaction to HIV diagnosis• Fear of death• Self-isolation	Acceptance of HIV positive status
	Disclosure/non-disclosure of HIV status

Life before ART

Participants articulated a clear delineation in discussing their life before the provision of ART. Their discussion revealed three themes about life before ART: (1) sickness and/or sickly physical appearance; (2) family and community members' reaction; and (3) fear of death. All participants described a life filled with agony of sickness and confusion, especially before their diagnosis:

I was just sick and was passing stool often, and losing weight. People started running away from me that I have AIDS. I had been given various medications that did not cure me. I kept on going to the hospital for care. After prolong illness, the doctor suggested I needed to do [HIV] blood test. (Woman, FG Ibadan)

It all started through frequent stooling and weight loss. I went to hospital at Adeoyo in Ibadan. I was diagnosed for malaria, treated and became okay. Soon after that, I became sick again, so I went to complain to my sister that I can't explain this ailment. She took me to various places. An elderly man then advised me to go for blood test. So I was referred to UCH. When the test was conducted I was told it was HIV virus. (Woman, FG, Eruwa)

I was having frequent fevers, unable to eat properly, and I use to vomit often after food. I was encouraged to go for medical test. (Man, FG Eruwa)

Along with the sicknesses participants experienced, was also the reaction from family and community members. Due to participants' sickly appearance and weight loss, family and community members were described as running away from them or avoiding them all together:

People initially ran away from me in the neighborhood when I lived with my sisters. They did not allow me to cook or do anything with them. (Woman, FG Eruwa)

The first person that stigmatized me was my brother in-law's wife. That day I came into her house and I was very thirsty and I asked for water but because she didn't want me to use her cup so she decided to buy me a drink but I refused it because all I wanted was to drink water and that was how I left and went somewhere to get myself food and drink at a motor park. (Woman, FG Ibadan)

I noticed that people remove their clothing when I spread my clothing near theirs because they don't want to be infected. My wife was taken away by her family members to an herbalist she is now dead because of lack of care. (Man, in-depth interview, Ibadan)

People do run away from me. I was living with my uncle then, they separated my plate. They did not allow me to cook or participate in any other domestic activity. (Woman, FG Ibadan)

Some participants reported loss of businesses or trades because community members refused to buy from them, while others reported loss of economic support because they couldn't do as much as they used to due to their failing health:

I started the business of grinding pepper, and no one would bring their pepper to me for grinding. They'll say, “don't go to her. She has a disease that can kill you,” but they say it behind me. So, I stopped the business, and took my own pepper to grind in other shops. But, in the neighborhood where we grind pepper people refused to grind their pepper where I do mine. (Woman, FG Ibadan)

I make a living from hawking pap [maize porridge—a local breakfast meal]. People ran away from me and refused to buy pap from me. I therefore couldn't take care of myself anymore. (Woman, FG Eruwa)

I was unable to work properly again. I did not have the ability to do my farm work properly because of my sight and I was unable to drive properly especially at night because of the light from on-coming vehicle. (Man, FG Eruwa)

It is noteworthy that at this point most participants did not have a clinically diagnosed HIV status. However, participants experience enacted stigma by family and community members based on their suspected HIV status because of their physical appearance, along with their inability to carry out their normal functions, that is, burden-related stigma.¹⁸ These changes in participants' physical appearance can be attributed to complications from HIV infection,³⁵ which elicited distancing and rejection by family and community members. The situation did not improve, but worsened, especially with self-stigmatization that many participants reported feeling when they had clinical diagnosis or confirmation of what family, friends, and community members suspected all along. So, while enacted stigma continued, PLWHA also self-stigmatized. Participants reported feelings of fear, especially of death, following their diagnosis:

I cried a lot and I thought of committing suicide by falling into a well because I had no more money [she started weeping while talking]. (Woman, In-depth Interview Eruwa)

I started being afraid that I am HIV positive. I began to cry that death has come. I had to go to my parent's house when the shame was too much. (Woman, FG Ibadan)

I was sad when I first heard about my status. I even refuse to listen to news from my radio because I thought I will die soonest. (Man, FG Eruwa)

When I was told that I have HIV, I was just weeping and I thought I was dying soon because people say that there is no drug for it. (Woman, FG Eruwa)

Some PLWHA isolated themselves following their diagnosis due to anticipated stigma. Only eight participants reported disclosing their status to at least one person—spouse, family member, or friend before initiating ART treatment. Many reported they were in trepidation of how people will react to them as shown in the following statements:

I used to have many friends but when I discovered my status I begin to separate myself from many of my friends because I don't want them to know my status. (Man, FG Ibadan)

Yes, there was a change. One day I was at home, some ladies were talking about HIV. It was as if they know I was infected. So I left the vicinity. (Man, FG Ibadan)

This, of course did not reduce enacted stigma from neighbors or community members as indicated below. In fact, some participants described that the ‘worst curse’ or insult someone can give is saying, “You have HIV”:

The mere mentioning of the name ‘HIV’ people will respond back that ‘you are the one that will be infected with HIV’. People don't even want to hear about HIV at all, so knowing that one has HIV is actually killing. (Man, FG Eruwa)

People are actually running away from me. They don't even want to sit close to me at all. If I give a gift to their children, they will throw the gift away. (Man, FG Eruwa)

When people heard about my status, they stop their friendship with me. (Male, FG Eruwa)

After having my bath, the next person that will use the toilet will go and wash the place very well because they are afraid of me and the virus that they believe I carry. Other people will not have their shower in that bathroom for the next three days. (Man, FG Eruwa) [Participant lives in apartment complex with shared amenities]

The impact of stigma before the arrival of ART in participants' life can be summarized by the words of a woman participant in the Ibadan focus group:

It was stigmatization that also killed my former husband because his spoon, plate, cup were all marked out, and when he discovered this, he felt dejected and lost all hope about living. Back then, there was no ART.

Life after ART

Participants were quick in clarifying the difference in their lives with the arrival of ART and the “normalization” they felt physically and socially.³⁶ The hope offered by ART to participants was apparent in their juxtaposed description of their lives before and after ART. These were grouped under three subthemes: (1) healthy physical appearance; (2) acceptance of HIV as any other disease; and (3) disclosure/nondisclosure of HIV status. Many described improved health, especially in physical appearance, and the ‘social response’ in that family, with friends and community members now “returning to them” that is, started relating with them as was the case before their illness:

Since I have been using my drugs I have become bigger than before (i.e., put on some weight) and people have started coming close to me again, unlike before when I was sick and thin. (Woman, In-depth Interview Eruwa)

People ran away from me. They refused to eat with my plate but later when I started using my drugs and they saw that I was no longer dying they came closer to me and we now eat together. (Man, FG Ibadan)

When I visited my sibling they started keeping their things like clothing from me, which was not the case before. However, when I started using my medication, there was a change and people came back to me again and normal friendship began. (Woman, FG Ibadan)

Some participants described friends and family not only returning to them but also “apologizing” for deserting them:

People ran away from me, but some came back to apologize later when I began to recover with the medications. (Man, FG Eruwa)

As soon as I started taking my medications, I started gaining weight again. My friends and siblings came. They said, “we thought you were dying.” I told them not me…They apologize…and now all is well. (Woman, FG Ibadan)

Participants with business or trades also described customers coming back to them gradually: “… people ran from me and refuse to buy pap from me. But after some time, after I started my medications, they began to patronize me again.” (Woman, FG Eruwa)

After some months [on the medications], I was able to start my business again [grinding pepper], and some customers are now coming. Some of them will ask: “we thought you were sick.” I answer them that I'm not. People are only carrying rumors around (Woman, FG Ibadan).

Participant: I went back to Lagos because of my shop. People could not recognize me. I couldn't stay though, because of my medications.

Interviewer: Are the medications not available in Lagos?

Participant: Yes they have it, but I prefer here. No one knows me here. (Woman, FG Ibadan)

The second theme around the issue of life after ART is the acceptance of HIV by PLWHA as a disease like any other disease that anyone can have. Some participants hold on to the belief that one will only die if ‘it is one's time to”: “I now believe it cannot kill me as I have started using my medications.” (Man, In-depth Interview Ibadan)

People that have hypertension also use drugs throughout their life time. HIV is not different…as long as it can be managed and drugs are given to patients. (Man, FG Eruwa)

When I discovered and started using the drugs, I had rest, knowing the virus will not kill me again unless it is my time to die. (Man, In-depth Interview Eruwa)

I did not feel bad because the thing [HIV] is moving around [meaning it can happen to anyone]. Since there are drugs for the treatment, this will enable me take care of my children. Everything is from God. (Woman, In-depth Interview Eruwa)

Despite this seeming acceptance of HIV as any other disease, and family and community members returning to them, some PLWHA in the study chose not to disclose their status. Out of fear, some reported not disclosing to family or friends, and even going to great lengths to keep their status secret, as shown in the words of a female focus group participant in Eruwa:

Participant: I was traced from the hospital and asked why I did not come back again. I told them I don't know how to break the news to my parents. They said they will help me. My parents were told [by the hospital] that I have a sickness that have affected my blood, and could cause damage to my baby [she was pregnant at that time] if I was not taking care of. So my parents immediately allowed me to go back to Ibadan for treatment.”

Interviewer: Have you told anybody about your HIV status?

Participant: No, I have not, apart from my husband and he loves me and did not divorce me.

Some participants travel far out of town to receive their ART because of fear of community members discovering their HIV status: “Some people are going to Ibadan to get drugs because they don't want people in their areas to know their status” (Man, FG Eruwa).

When I lived in Lagos, I use to come to Ibadan for my medications. The clinic in Lagos was too close to my shop [business]. Now, I've moved to Ibadan, so I get it from the teaching hospital. (Woman, FG Ibadan)

… since the problem started, only my husband's family has taken good care of me and have not discriminated against me. They even allow me to cook for them. At times, they do give me money for transportation to Ibadan to go and collect my drugs. (Woman, FG Eruwa)

It should be noted that, while participants in Ibadan have access to ART through the PEPEFAR center at a university teaching hospital, the same could not be said for participants in Eruwa. There is no PEPFAR center for ART in Eruwa. Neither is there a privately owned clinic to provide ART to HIV patients. PLWHA in Eruwa do need to travel to Ibadan for medications, although some may assume, as seen in a participant's comment above, that it is to protect their HIV status.

It is also of interest to note that about twenty participants reported disclosing their status to at least one person (spouse, family member, or friend) following their initiation of ART. On the other hand, others unwittingly ‘disclose’ to ‘friends' they meet at an ART clinic. In essence, they neither confirm nor deny their status to such friends, however their presence at the ART clinic is all that is needed:

When I told people I'm going to teaching hospital [PEPFAR center] they begin to suspect me, especially a particular friend, but the day I met him at the drug center [PEPFAR center] our friendship became stronger. (Man, FG Ibadan)

Supporting this idea is a woman participant from Ibadan focus group, who said:

… a friend of my sister told me to follow her to Guagalada specialist hospital…I did not know that she too was a carrier of the virus, but she never told anyone about it. Not long after I started going to the hospital that I became registered and started collecting drugs…did she tell me.

In addition, when family or friends ask, “what was wrong before?” some participants reported neither confirming nor denying, rather they choose to ignore the question, “I just don't answer them or pretend not to hear them” (Woman, FG Ibadan). As stated earlier, all participants reported high ART adherence level. Though some talked about the “challenges of having to take medications daily” for the rest of their lives, all were quick to emphasize the value of the medications. When asked why they take it despite the side-effects, many responded:

I never want to experience what I went through again. Taking the medications is nothing. When people point at you as alàìśań [connoting a sickly person], then taking the medication is nothing.” (Woman, FG Ibadan)

… I miss the medication one time, and I don't like how I felt. When I went to the hospital, they said the viral load had risen. From then on, I promise not to miss it, and I haven't. (Woman, FG Eruwa)

I take it all the time and regularly. Who will take care of my children if I die? So I take my medication. Also, I have more energy now that I am taking my drugs. (Woman, FG Eruwa)

The vehement response of a woman participant in the Ibadan focus group emphasizes participants' view of ART: “I cannot do without taking my medications.” All others nodded their heads in support of her statement, as if confirming that taking the medication is non-negotiable.

ART adherence strategies

Participants described strategies they use in ensuring adherence to their medications. These were grouped into two: navigating and negotiating strategies. Navigating strategies are changes, efforts, and plans participants used to adhere to their medications. This can entail planning ahead for specific event(s) that may arise during the course of the day or life style changes to accommodate use of ART, as shown in the following comment:

Participant: I've made changes to my life in many ways so that I can stick to my medications. I don't go to parties or drink any more.

Interviewer: How do friends react to your reduced social activities?

Participant: I tell them I'm getting old and need to slow down (Woman, FG Ibadan).

Others reported declining invitations to events, especially if it is an event they feel will not provide them with a safe space to use their medications and thereby adhere to the regimen:

I just tell them I can't come or have another engagement for that day. When the day arrives, I just dress up and leave the house or go to another place. (Woman, FG Ibadan)

On the other hand, negotiating strategies are described as bargaining tactics used by participants, not only to ensure they adhere, but also to prevent disclosing their HIV status, especially when dealing with family or friends that do not know their HIV status, as shown in this comment by a female participant:

Participant: It was difficult to tell my husband, but I kept using my medications

Interviewer: How were you able to continue using your medications?

Participant: I wrap the medication in a small plastic bag and tie it on the end of my wrapper. That way, I can go anywhere to use it. After I told him, he supported me in making sure I take it regularly. (Woman, FG Eruwa)

Some described the strategies they employed to ensure they have access to their medications or stick to the time as required:

If I have to go out and won't return before the time to take it [medications], I place what I need to take in a plastic bag in my purse. No one needs to know. When it's time, I take ‘pure water’ [water sold by hawkers], go to the bathroom if there is one and take it. And if I don't have it with me, I make sure to return home early so I can take it. (Woman, FG Ibadan)

It should be noted that these strategies were especially successful for participants that have disclosed to at least one person, specifically a family member—spouse, children, relative, or in-laws. It is also of interest to note that only women discussed strategies used, and none of the men did so.

Discussion

This study explored the question of whether HIV stigma can increase antiretroviral therapy adherence among PLWHA, especially in response to anticipated stigma. The data suggest that HIV stigma, specifically anticipated stigma, was inadvertently a motivator for PLWHA enrolled in this study to adhere to ART regimen. Sickly appearance and community reaction elicited self and anticipated stigma on the part of PLWHA, and enacted stigma on the part of community members. Participants' fear of experiencing what they went through before the provision of ART, especially from family and community members in response to their physical manifestation of HIV/AIDS (sickly look, weight loss) was a paramount factor for adhering to ART. This stands to reason since people tend to assume they know or suspect someone to be HIV positive based on physical appearance. As such, PLWHA responds in certain ways to avoid this type of stigma, and one of the ways as suggested by the data is adherence to ART. In fact, a participant's unequivocal comment, “I cannot do without my medications” and others' consensus with her assertion, in addition to their responses to questions relating to ART side effects, emphasize participants' belief about adhering to ART as the way to avoid anticipated stigma.

It is postulated that anticipated stigma may act as a motivator for PLWHA to adhere to ART regime. As shown by participants' description of their life before and after ART, it is clear that ART provided them the opportunity to regain their health, improve their physical appearance, and also engage in their everyday activities, although they had to make some changes. Such changes were not considered too much of a sacrifice since they can now pursue their daily activities and fulfill social obligations and expectations.^4,37 It should be noted, however, that there is a possibility for participants to experience a reversal or increase in anticipated stigma with long use of ART [lamivudine (3TC)/nevirapine (NVP) and stavudine (d4T)], since these drugs have been shown to result in lipodystrophy and lipoatrophy after few years of use and as patient ages.^38
–40 As such, ART scale-up programs should include family members that PLWHA have disclosed to as way of preparing them for the complications from long use of the drugs and helping PLWHA cope with potential reversal in stigma experience. In addition, ART programs should include interventions to address complications from long use of the drugs along with improve access to alternative drugs that are less toxic, such as abacavir and tenofovir.³⁹

Participants' report of decrease in self-stigma had impacts in two ways: (1) normalization of HIV/AIDS; and (2) increase in disclosure of HIV status. Normalization of HIV/AIDS was reflected in participants' comments, and comparison of ART medication regimen to that of hypertensive patients that have to be on medication for the rest of their lives. Such thinking has contributed to the “progressive re-integration of PLWHA into productive and social life,” as some were able to restart and/or continue with their trades or businesses.³⁶ Also, some normalized HIV/AIDS by concluding that the “virus will not kill me unless it's my time to die,” which Dageid and Ducket described as “balancing normality and social death.”⁴¹ Furthermore, normalization of HIV/AIDS also reduced burden-related stigma that some may have felt before ART, when they could not participate in their regular productive activities.

ART provision to participants in the study may have facilitated disclosure with more participants reporting disclosing their HIV status following the initiation of ART. It is speculated that their disclosure may not only be to seek support, but also to show that they are not “alàìśań,” a word that socially connotes someone with an incurable disease, which many of them believe is worse than ‘physical’ death. Nzioka argued that “HIV/AIDS [in the African context] is not just viewed as a biomedical pathological condition that occasions physical demise, but a social pathology which through stigmatization has given rise to [social] death”.⁴² As such, provision of ART alleviates PLWHA's experience of social death even within the context of disclosure as they can also explain to whomever they disclose to that “it can be managed and drugs are being given to patients” (Man, Ibadan FG).

As reported by participants in the study, there was also reduced enacted stigma by family, friends, and community members against them. It is obvious that healthy physical appearance was the reason PLWHA experienced acceptance by family, friends, and community members who had initially rejected them, with some family and friends returning to them and even apologizing. This reduction may also be attributed to ART provision since PLWHA now look well and healthy. Some participants' decision to neither confirm nor deny their HIV status is of interest as it also shows how anticipated stigma can prevent disclosure though it increases ART adherence.^43,44 As such, stigma interventions should include efforts to address the ‘double-edge’ sword that ART may pose to PLWHA. While some stigma interventions have focused on the healthcare providers in collaboration with PLWHA to reduce stigma,⁴⁵ efforts should be made to include community-based organizations, especially in this context, since most PLWHA seek support through them. Also, community-based organizations can be first-line tools in reducing stigma from working within the communities they serve.

Findings from the study further showed that female participants living with HIV/AIDS use navigating and negotiating strategies to ensure they adhere to their regimen, thereby enabling them to continue in their pursuit of everyday activities. Navigating strategies involve some planning or preparation on the part of participants such that they are ready as the occasion demands. Negotiating strategies, on the other hand, may not necessarily involve planning ahead, but responding to situations as they arise. In this way, negotiating strategies serve two functions: (1) to adhere to ART regimen; and (2) to prevent disclosure of HIV status, especially when dealing with people that are unaware of participants' HIV status. It should be noted that these strategies are used interchangeably and are not necessarily thought of as navigating and/or negotiating by participants. As indicated in the findings, participants' remove their medications from the prescription package to a less conspicuous container (plastic bag), such that no one can raise eyebrows as to why they have many medications with them. Similar strategies have been documented among women living with HIV/AIDS as methods they employ to ensure adherence and avoid disclosure.⁴⁶

Furthermore, it is common for people in this context to take as many medications as they can swallow in one gulp, known locally as àkònpó. This is a widespread practice since most people have access to medications, but not necessarily through a licensed pharmacist or ‘chemist’ as they are locally known. Based on self-diagnosis, many can purchase medications through hawkers selling them in the marketplace or on the streets, mixing various medications together and swallowing them all at the same time. However, by the same token, it is uncommon for people to carry prescription bottles around with them when they take such medications. As such, PLWHA use of many drugs in one swallow may not raise eyebrows. However, carrying around prescription bottles of medications, specifically biomedicines, may raise eyebrows or lead to questioning. Stigma interventions should take into account the various strategies used by PLWHA to adhere to regimen and engage these cultural underpinnings in their efforts to address stigma.

It is of note that none of the men in the study reported the use of either navigating or negotiating strategies. While it is possible they may use them, but chose not to discuss it, it is speculated that gender role expectations may have a bearing on this, as a woman in the Ibadan focus group stated: “People are not easily afraid of men [unlike women]. They tend to cheat us and stigmatize us more often than men.” Research has shown that women experience HIV stigma more intensely than men.⁴⁷ While not underestimating men's experience of stigma, men are usually not questioned about many issues, and as such, may not feel the need to hide their medications, especially in their own home.^48,49 More research is needed in Nigeria to explore strategies used by men living with HIV/AIDS to negotiate ART adherence.

There are limitations to this study. The sample was small and geographically limited to PLWHA who were members of support networks in Ibadan and Eruwa. As such, experiences described by participants cannot be generalized to PLWHA in other communities. In addition, ART adherence level was based on self-report by participants, and not verified by biomarker for accuracy. However, the CBO physician estimated that the adherence level is about 85% in both groups. Also, it was beyond the scope of this article to examine the impact of differential access to resources among participants due to living in urban (Ibadan) versus rural (Eruwa) areas, especially as it relates to ART provision. However, analysis of the data and confirmation by CBO staffs showed that this did not greatly impact adherence levels among participants. Furthermore, the study also did not explore the effect of length of ART usage on participants' physical appearance and its potential impact on their stigma experience.

Notwithstanding the limitations, this current study contributes to the understanding of the other role that HIV stigma may play in ART adherence among people living with HIV/AIDS—a motivator in response to anticipated stigma. HIV stigma as a motivator can provide valuable insight into efforts to assist PLWHA to adhere to ART regimen and efforts to reduce and/or eliminate HIV stigma. Policies on antiretroviral therapy scale-up programs can benefit from understanding how PLWHA construct HIV/AIDS stigma—either as a barrier or motivator in adhering to ART regimen. Since behaviors don't occur in a vacuum outside of their cultural contexts, such policies should take into account the cultural context of PLWHA daily lives and its influence on their adherence behaviors. Government policies on ART scale-up programs can be strengthened through working with community-based organizations. Community-based organizations can be a resource to ART programs in this context as they can serve as link between the program, PLWHA, family, and community members, not only in providing support to cope with medication side effects, but also in educating family and community members about ART, thereby preparing them for complications from long use of drugs and reducing stigma that may ensue from reversal of PLWHA physical appearance. Cultural and relationships' expectations play significant roles in strategies used by PLWHA to negotiate and navigate daily life demands. Without a careful understanding of these strategies and when and how they are used, increasing ART adherence while also reducing HIV/AIDS stigma may prove challenging or even impossible.

Footnotes

Acknowledgment

We would like to thank the staff of IICWIN for their hard work and support for the project. Also, special thanks to the HIV support Networks in Ibadan and Eruwa, and for participants in the project. Thank you for giving us the opportunity to tell your stories.

Author Disclosure Statement

No competing financial interests exist.

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