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Published in final edited form as: Health Care Women Int. 2011 Apr;32(4):278–299. doi: 10.1080/07399332.2010.530727

Where Will This Illness Take Me? Reactions to HIV Diagnosis From Women Living With HIV in Kenya

PENINNAH M KAKO 1, PATRICIA E STEVENS 2, ANNA K KARANI 3
PMCID: PMC9257699  NIHMSID: NIHMS1812552  PMID: 21409662

Abstract

The purpose of our study was to develop an in-depth understanding of the reactions of 40 urban and rural HIV-infected Kenyan women to HIV diagnosis. We employed narrative inquiry principles to guide this qualitative cross-sectional study. We conducted individual in-depth interviews using open-ended questions in April and May 2006. In this article we focus on women’s reactions to HIV diagnosis, under which four subthemes emerged: immediate intense emotions; keeping HIV status secret; acceptance of HIV diagnosis; and finding liberation in disclosure. We offer important implications for health care professionals serving women in sub-Saharan Africa from the findings of our study.

After three decades, HIV remains a major global public health concern, with over 33 million people living with HIV (UNAIDS/World Health Organization [WHO], 2008). Sub-Saharan Africa continues to be the region most affected by HIV, being home to nearly 70% of all people living with HIV. HIV/AIDS is largely a woman’s burden in this region. In 2008, women accounted for 60% of HIV-infections while caring for 90% of the world’s HIV-infected children. In Kenya, where the HIV rate is estimated to be 7.8% women continue to be disproportionately burdened because they are almost two times more likely to be HIV infected, compared with their male counterparts (National AIDS STI Control Programme & Ministry of Health Kenya [NASCOP], 2008). These numbers may be even higher, as it is estimated that more than 80% of those infected are not tested. With the global efforts toward universal access to HIV prevention, treatment, and support, knowing one’s own HIV status is crucial to accessing HIV treatment. Knowing one’s HIV status can be impeded by inadequate pretesting counseling and fears of consequences related to HIV diagnosis. It is critical for health care providers to be aware of the profound emotional impact that HIV diagnosis might have on women’s immediate and long-term emotional and physical well-being if those providers are to ensure gender- and culture-sensitive psychosocial interventions.

Our study has great international implications. Identifying women’s reactions to HIV diagnosis offers an opportunity to ward off self-stigma (Maman et al., 2009). Stigma can tremendously increase the psychological burden of HIV illness and lead to non adherence to HIV treatment, loss to follow-up, and unnecessary early death (Medley, Kennedy, Lunyolo, & Sweat, 2009; Nthomang et al., 2009). Personal experiences from the lives of women can be beneficial to health care providers as they offer guidance in pre- and post-HIV testing, including subsequent HIV treatment and follow-up. If women know potential reactions to HIV diagnosis and effective ways of dealing with those reactions, they might experience less self-stigma, making it easier for them to cope with their own HIV diagnosis (Sambisa, Curtis, & Mishra, 2010). The purpose of our study was to describe the reactions to HIV diagnosis among HIV-infected women in Kenya, and we hope to contribute in guiding health care for other women in sub-Saharan Africa.

REVIEW OF THE LITERATURE

Despite the increasing access to HIV treatment, HIV in sub-Saharan Africa is both a public and a social crisis that is still regarded as a fatal disease and remains highly stigmatized (Yebei, Fortenberry, & Oyuku, 2008). Studies have shown that to be told that one is HIV positive is a stressful, life-changing event (Stevens & Hildebrandt, 2006), as well as traumatic (Anderson et al., 2009). This stress and trauma of HIV diagnosis might even be worse for women in Kenya, where diagnosis of HIV in many cases happens only after women have battled with protracted illnesses, either their own illness, their children’s, or their spouses’ for a long time—in some cases, for years (Kako, Stevens, Mkandawire-Valhmu, Karani, & Banda, 2011). Substantial work has been done on how women in the Western world cope with HIV (Heckman, 2006). Because of the high incidence of HIV in women in sub-Saharan Africa (UNAIDS/WHO, 2008), there is a great need for studies that focus on how the women living in sub-Saharan Africa cope with HIV.

HIV prevention remains central to altering the course of the HIV epidemic in Kenya. Knowing one’s status has been encouraged as a means of increasing HIV prevention and treatment (UNAIDS/WHO, 2008). According to the WHO (2006), there is a great need for universal access to HIV treatment. It is paramount that the policies and practices used to achieve this goal ensure that access to treatment is equitable and that it benefits the poor and marginalized segments of societies, especially women (UNAIDS, 2004; WHO, 2006). Even with the continuing push for universal access, using modalities such as clinician-initiated testing or opting-out approaches (UNAIDS/WHO, 2008), the consequences of knowing one’s HIV status, including the role of stigma in lives of seropositive women, have not been well studied from the perspectives of HIV-infected women in Kenya.

Gender-Specific research is greatly needed because of life circumstances that set women apart from men (Hunter, 2003; UNAIDS, 2006). The Report on the Global AIDS Epidemic (UNAIDS, 2006) emphasizes that ramifications of the epidemic are particularly hard on women and girls in sub-Saharan Africa. By situating the proposed study in the context of women’s lives and prioritizing their subjective accounts, we hoped to gain greater insight into the women’s gendered reactions to HIV diagnosis among women in sub-Saharan Africa (Amuyunzu-Nyamongo, Okeng’o, Wagura, & Mwenzwa, 2007; Ciambrone, 2001; Nzioka, 2000). Personal, communal, and sociocultural meanings surrounding an illness as controversial and stigmatized as HIV/AIDS inevitably influence women infected with HIV with respect to their self-esteem, their emotional states, and how widely they can disclose their HIV status (Makin et al., 2008).

While there is a global drive for increasing access to HIV testing and treatment and knowing one’s status as a means to curb the HIV epidemic, in Kenya, unfortunately, few studies have elicited the voices of HIV-positive women on the reactions to HIV diagnosis. Knowing how women deal with being diagnosed with HIV from the voices of Kenyan women themselves is crucial in helping shape health care guidelines that are gender sensitive. Although studies on disclosure and stigma in sub-Saharan Africa are plentiful, women’s voices on their reactions to HIV diagnosis have not been well documented in the literature. Psychological adjustment to HIV infection diagnosis and resultant positive outcomes might result from anticipatory guidance informed by women’s voices. While in the Western world, fears of being rejected and stigmatized have been widely documented as reasons why HIV-positive persons do not seek care or disclose (Medley, Kennedy, Lunyolo, & Sweat, 2009), HIV-positive women in Kenya are more likely to be abused or abandoned in addition to suffering other forms of rejection and stigma (Fonck, Leye, Kidula, Ndinya-Achola, & Temmerman, 2005). Other studies have hinted as to the need for accepting or making sense of HIV infection (Rutledge, 2009). In the study by Rutledge, among men who have sex with men, making sense of personal infection stories emerged as a prominent theme, suggesting that, as with the women in our study, accepting HIV diagnosis and acknowledging the source of infection are crucial in being able to move toward disclosure, an important step in curtailing the stigma. Studies have shown that dealing effectively with stigma, leading toward disclosure, is crucial in adherence to antiretroviral therapy (ART; Sanjobo, Frich, & Fretheim, 2008).

METHODS

Our study was guided by principles of narrative inquiry, which is an amalgam of interdisciplinary analytic lenses and methods that revolves around an interest in biographical particulars as narrated by the ones who live them (Chase, 2005; Reissman, 1993, 2008). The need for continued diverse methodology research, including in-depth qualitative studies of HIV-infected women in a country such as Kenya, is urgent because of the disproportionate HIV/AIDS burden on women in sub-Saharan Africa. In qualitative methodologies such as the narrative inquiry applied here, the investigator conducts the study in natural settings, builds a complex holistic picture of the world of events inhabited by participants, and analyzes and reports their stories (Creswell, 1998; Denzin, 2000). Our study about HIV-positive women in Kenya was best served by such a paradigm and has the potential to make important contributions to the understanding and creation of health care policy (Olesen, 1994) informed by women’s voices. The best way to learn about people’s subjective experiences is to ask about them in open-ended ways (Auerbach & Silverstein, 2003). Such an approach honors participants as experts in their own lives (Auerbach & Silverstein, 2003; Hall & Stevens, 1991). Subjective experiences related to pivotal life events like HIV infection are best examined through narrative studies that elicit and systematically compare individuals’ stories of what has happened to them in the “real world” (Charmaz, 1999; Conrad, 1990; Denzin, 2000; Reissman, 1993; Rist, 2000; Silverman, 2000).

We conducted our study at an urban site and a rural site. The urban site was in Nairobi at Kenyatta National Hospital Comprehensive Care Clinic (CCC). We conducted interviews in a private room inside that facility. The rural-site participants were from eastern Kenya, patients of multiple CCCs located in Kenya’s Mwingi, Kitui, and Machakos districts. We conducted interviews at Medical Gospel Outreach (MEDGO) Health Center, a privately owned clinic located in a rural area about 125 miles east of Nairobi. Although participants did not receive HIV services from this clinic, they had access to its services for illnesses unrelated to their HIV care, so we used the clinic as a central place for conducting rural participants’ interviews. We interviewed women in the language of their choice: English, Swahili, or Kamba. English is the official language of Kenya, Swahili is the national language and more commonly spoken, and Kamba is an ethnic language spoken in eastern Kenya, where rural participants were recruited.

We used purposive sampling to recruit participants for this study because it is a deliberative approach wherein participants are targeted for the rich information they are likely to yield about study phenomena. With the assistance of staff, we recruited 40 female participants aged 18 years or older who had a self-reported diagnosis of HIV and could speak English, Swahili, or Kamba. Every woman who volunteered for the study was interviewed until sample sizes of 20 were achieved in, respectively, the rural setting and the urban setting. Such a sample size generally is adequate for qualitative interview studies and yielded data to the point of saturation, as was expected in agreement with previous studies (Hall & Stevens, 1991; Stevens, 1996).

Data were collected during April and May 2006 in Kamba, Swahili, and English. Data were managed using N-vivo qualitative analysis software, a database manager that offers researchers the means to code textual data; edit text and enter analytic memos; retrieve, review, and recode data; and search for combinations of coding or words in the text (Richards & Richards, 2003). We analyzed the data using a multistage narrative analysis process (Stevens, 1993, 1995, 1996; Stevens & Hall, 1998). The taped interviews were transcribed in their original languages and then coded. Those parts of the transcriptions that were going to be used for the study were translated into English using Brislin’s procedure (Brislin, 1970), a procedure where the first author (PMK), who is proficient in English, Swahili, and Kamba, translated the Swahili and Kamba transcription parts into English. An equally proficient translator then compared translated versions with the originals, adjusting as necessary to ensure congruence. This strategy kept the interview transcripts in the original voices of the participants during coding so that the transcripts could retain their linguistic complexity and cultural context (Richards, 2005). Studies show that during translation, there is the possibility of lost meaning (Pitchfort & Teijlingen, 2005), especially in cases where there is no direct translation into English. Adherence to standards of rigor as described by Hall and Stevens (1991) helped ensure scientific adequacy of the study.

The study protocol was approved by the Institutional Review Board of the University of Wisconsin-Milwaukee, the Government of Kenya Ministry of Education Science and Technology, the Kenya National Hospital (KNH) Ethics and Research Committee, the Comprehensive Care Clinic-KNH, and the MEDGO Health Center. Before the interviews were conducted, research objectives, methods, and human rights protocols were explained to the study participants, and oral consent forms were obtained from them. We obtained each participant’s consent prior to audiotaping her interview.

FINDINGS

Sample Description

The participants’ ages ranged from 26 to 54 years, with a mean age of 37 years. Overall, more than three-fourths of the participants were either married (40%, n = 16) or widowed (37%, n = 15). Participants had an average of 3.5 children (range: 0 to 10 years of age), with a majority of the women (83%, n = 37) having six or fewer children. A majority of study participants (87%, n = 35) were Christians. Overall, participants had an average of 9 years of schooling. The women in the study were relatively poor, with the majority of rural participants (95%, n = 19) having incomes below the international poverty line of less than $1 per day. In contrast, two-thirds of the urban participants were earning more than $1 per day and were more likely to have a consistent form of income, either from holding a job, from a husband’s job, from family members, or from owning a small business. The cost of living in the city was much higher than in the rural villages, however, so the urban women in the study were still relatively poor. Most of the women, 90% of the sample (n = 36), had contracted HIV through heterosexual sexual activity. Blood transfusions accounted for 5% (n = 2). One woman reported a human bite as the source of her infection, and another woman said she had acquired HIV by taking care of an HIV-positive relative who had open wounds. The mean number of years since diagnosis was 3 years (range: less than 1 year to 10 years). Over three-fourths of the women (77%, n = 31) had been diagnosed less than 5 years prior to the study, and only 22% (n = 9) had been diagnosed for 6 to 10 years. Overall, 60% of the participants were in HIV support groups, but there was a sharp contrast between rural and urban participants. All the rural participants (100%, n = 20) were involved in HIV support groups, while only 20% (n = 4) of their urban counterparts were involved in a support group at the time of the study. Women who regularly attended support groups reported that counseling, including being in support groups, helped in transitioning from fear and despair to dealing with stigma, being able to accept the HIV diagnosis, and finally finding liberty in disclosure.

Themes Emerging From HIV Diagnosis

In this study, four subthemes emerged that described the reactions of the women in this study to their HIV diagnosis, including immediate intense emotions; keeping HIV status secret; acceptance of HIV diagnosis; and finding liberation in disclosure. Intense negative emotions resulted from news of testing positive for HIV infection. Upon receiving an HIV diagnosis, women also struggled with resistance from their husbands and resistance from within themselves to the diagnosis. By the time of their interviews, most women in the study had come to an acceptance of their HIV infections. A few women reported that they accepted their diagnoses almost immediately, while others told stories of prolonged distress.

Immediate intense emotions.

In narrating their immediate reactions to being diagnosed with HIV, women described emotions ranging from absolute fear and shock to depression, despair, and suicidal thoughts, as the following excerpts illustrate:

Fear and shock.

Women described being gripped by fear and shock. As one woman stated:

After being told you are HIV-positive, the first thing that happens is a person is gripped by fear and gets shocked. And, then you ask, “Where will this illness take me?”

It was a big shock. I thank God for the counseling here. Maybe by now I would have committed suicide, or asked God to kill me. It was so difficult.

When they told me my status, I am telling you, I urinated on the carpet. I don’t know how or where the urine came from.

Depression, despair, and suicidal thoughts.

Women described feelings of depression and absolute despair. Some described how they had planned to commit suicide following being told they were HIV positive:

I felt so down. It was like my life is ending here. With the good school certificates that I’ve actually attained, my life is going to be shortened just because of this disease. I’m really going to disappoint my parents and even my husband, too.

I kept waiting to die. Every day I sleep and I was always thinking I’m not going to wake up. But then the day comes, I wake up and I am still strong. Even though I have nightmares that I am dead, I wake up in the morning and I am still going on.

I went to the 10th floor to commit suicide. I wanted to climb over the glass walls. I was waiting for people to come out of those benches that are near the wall so that I may use those benches to go over. I wanted to commit suicide, but I didn’t do it.

For some, HIV diagnosis not only brought depression and despair, but also soul searching and questions about their own self-worth:

Times you can wake up and you just feel you are down, you feel that you are very sad. You just imagine, Why me? Why me? Why me? Times have come when I hate myself. Yes, I hate myself. And, I say, “Why me? Where did I go wrong? God, why do you hate me so much?”

Resistance to HIV diagnosis.

When women spoke of resistance to HIV diagnosis they included their husband’s resistance as well as their own.

Husbands’ resistance.

Overall, women were deeply affected by their husbands’ reactions to their positive HIV test results. Even as women were struggling to understand and accept their own HIV illnesses, surviving husbands often were unable to accept that their wives were infected, nor comprehend that they themselves also might be infected. This HIV denial unfortunately led to many husbands dying without access to any potentially life-saving HIV treatment. In the meantime, it was the women alone who bore the burden of their husbands’ illnesses. One woman described at length the responsibility she was left with when her husband was ill, unable to work, and declining HIV testing, even after he was aware that she had been diagnosed with HIV:

My husband is stressing me with the children. He will not go to the HIV testing. I have talked to the relatives; even my mother-in-law had to come. And, my best lady, my grandmother, they witnessed all that I am facing, but they didn’t help much, because he has become worse. He is not accepting it, that he is positive.

Women’s own resistance.

Women themselves also had resistance to their HIV diagnoses, seeking out confirmatory HIV retesting, only to be told they were still positive. This period of confirmatory retesting was plagued with great anxiety and worry:

I was having that denial. I went to so many [clinics] for testing. I thought, maybe that machine is not working. I went everywhere. It was just positive. Still, I was in that denial, in that fear. I could not even sleep, sleepless nights, just thinking about what is going to happen next.

Indeed, many women suffered a long period with symptoms before testing for HIV, and then, even after multiple confirmatory tests, waited still longer to seek care because they could not accept their HIV diagnoses. The excerpted story that follows illustrates the protracted nature of this resistance:

Now, when I began to have problems, it was 1995. I went to the job-site nurse and she is the one who forced me to go to get tested for HIV. I refused, and she left me alone. I continued to work, but then I started feeling really bad. I went back to the job-site nurse in 2002 because I was again very ill. This time, she took a piece of paper and wrote, “Go and get tested for HIV.” I thought hard about my job and felt it was better to get tested, because if I left the job, I would suffer. I was tested. The results came out that I was positive. I went to the nurse, but I told her I was not ill. She insisted, so I took out the paper and I gave it to her. After that, I did not follow up with care. I stayed at my job. I was seeing it as if the result was an error. I then became very seriously ill in 2003. I was retested, and that is when I started my medications.

Calculated keeping of HIV status as secret.

Even after women overcame the resistance of HIV diagnosis, they still had to deal with the aftermath of HIV discovery—what to do with knowing one is HIV infected. Women in this study had a difficult time disclosing their HIV-positive status. Many admitted living in secrecy regarding their status, disclosing it only to their husbands or to close relatives whom they trusted. The reasons women chose to disclose or not disclose to certain people in their lives included not wanting to be recipients of others’ sympathy, avoidance of gossip, and avoidance of stigma and discrimination.

Women in the study carefully calculated the safety of HIV disclosure within their circles of social relationships, disclosing only to the ones they loved and could trust. As the excerpts below show, many women chose selective disclosure or secrecy about their HIV status for reasons of self-protection:

If you are tested, you will not tell your husband, because you are scared he will ask you, “Where did you get it? You have been a prostitute? Maybe you have not been faithful?” This will bring problems in the marriage. So, you have a problem. You know you are sick, but you continue doing the same life. Even some go back to conceive and breast-feeding because they don’t want their husbands to know.

I have shared with only a few of my family members. My husband, my brothers and sisters, they didn’t show me that they have reacted. To other people, I just kept quiet. I have not talked with my Mom, because I feel my Mom will tell, would share with the whole village [if I told her], and I know that could not help me.

Family members don’t know; nobody knows. At first I wanted to tell my dad because I am so close to my Dad. But, no, my Dad, being a polygamist, he will get shocked and tell the wives. And the wives will start talking bad against me.

Some women chose not to disclose when they believed that disclosure of their HIV status could have potential impact on their children’s hope for their futures. Because of this fear of dashed hopes, participants worked hard to hide their HIV status from their children, as the following excerpt shows:

There are children who, when they hear you are HIV positive, they can lose hope. They will think that even if they study, where will they go? The thing that can really disturb me is not the public, it is not other people. It is my children, because they will be affected. They can begin to see, “Now my Mom has no future, my father has no future.”

Although the women had illnesses and others in the community knew that they were sick, the women felt they could not share candidly the type of their illness. Women’s repeated clinic visits raised the curiosity of neighbors and relatives who always inquired about why they were going for health care. For fear of repercussions, women generally gave other reasons for seeking health care, rather than disclose that they had HIV. As the excerpt below suggests, potential repercussions could be very serious. Fear that her mother-in-law would chase her out of her husband’s house deterred one participant from disclosing her HIV status:

But at the moment, with my HIV, this mother-in-law doesn’t know. It is only my husband and my sister-in-law, the ones I love very much, who know. The rest of the people, they don’t know. … My mother-in-law, she does not like me in the family. I was like, “Aah!” Okay, my mother-in-law was around when I was told I was HIV positive. I could not tell her. I told her that I had blood sugar; my blood sugar is high in my body. So up to now, she only knows it is blood sugar that I have in my body. She does not know it is HIV.

It was commonly reported that women avoided telling others about their HIV status, wishing to avoid negative reactions:

I do not know for sure if there are people who know, but I have not explained or told anybody, because, these days, when someone dies, even if they are hit by a car or from malaria, they say you died from HIV. So, you cannot just tell people. You have to go slowly, because telling people, they get shocked and start being afraid of you. So, they don’t know why I keep going to the clinic. They think people go to the clinic to get HIV medications. But, I told them, “Me, I go to get medications for my tonsils to continue being treated so that they can be healed slowly.”

Acceptance.

As part of the transition within the trajectory of being told one is HIV positive and dealing with what to do with the HIV-positive diagnosis, some women found that the need to accept their HIV diagnoses was paramount to their ability to live positively. The acceptance needed to be for both the diagnosis of HIV and the source of infection.

Acceptance of the HIV diagnosis.

For the women in this study, coming to accept the HIV diagnosis was necessary in order to go on living. As one woman said, “I got tired of waiting to die. I said, kumbe [to my surprise], it [death] will never come. So, I forgot about dying. I continued with life.” This acceptance came relatively easily for some:

I was positive, but I didn’t want to commit suicide like most people do. I said, “Well, it’s not just me. I’m not the first one. Neither am I the last one to have this particular disease. You just have to try and find a solution for this disease. So what you do—you eat well, take a balanced diet, be stress-free, and then life continues.”

Another woman put it simply: “To me, I have taken it [HIV diagnosis] like I am to live positively—that’s all.”

For most women in the study, however, acceptance took time and struggle, repeated counseling, and, as some vividly narrated, help from God:

I was very ill. Even I was admitted into the hospital ward. But I came and went for counseling. In counseling, I accepted that illness. I saw there is nothing else.

First, in the beginning, it was hard. But, counselors, they came and counseled me. I became strong. I was told I just have to live. You have to forget you are ill.

What I did was I just prayed hard and asked my Lord, “Lord, you know it wasn’t my wish to have this virus.”

If God created this [HIV illness] to be, I can stay like this, just like how other people are continuing to live.

When women accepted their HIV-positive status, they were more inclined to start and adhere to treatment modalities, improving their health:

After a long time, I just accepted it. And, then I started the treatment. I came to the clinic, and they took my CD4. They checked it, and the doctor told me to start the ARVs. Then I accepted it.

Acceptance about the source of infection.

Not only did women need to accept the diagnosis of HIV, but they also had to accept the source of infection. Some felt better not trying to find out how they could have been infected, choosing simply to continue living positively. Almost every woman identified her sexual relationship with her husband as the source of her HIV infection. A couple of women were baffled, however, as to how they could have contracted HIV, and they blamed their doctors for medical mistakes. One participant, who discovered her HIV infection after an operation, still wondered where “this devil c[a]me from” while trying to make sense of the source of her HIV infection:

I found my situation about 2 months ago. My husband is not positive. I am positive. Up to now, I am asking God where did it come from—where did this devil come from? I don’t know.… I went for operation, aah! I don’t know why my doctor decided to check me or to do the [HIV] test. In that operation, they gave me blood. Because when I saw my bill, I saw an amount of money for the blood transfusion. And then later, you go to the clinic to remove stitches and continue with the scar healing. Three months later, when I went there, the doctor told me, “Do you know you are positive?” I said, “Positive from what?” I was with my pastor, the senior pastor had just dropped me to the clinic. I said, “Positive?” The doctor told me, “You are HIV positive.” I said, “How?” And the way he broke the news, he told me, “Go and put your things in order, because you are going to die.”

Finding liberation in disclosure.

Attending support groups helped to increase comfort with disclosure. In their HIV support groups, women learned about the power of testifying to their experiences living with HIV and gradually began letting people know about their status:

I found out [my HIV diagnosis] in 2002, and then, I attended support group. I was taught how to tell people about my HIV. You start with your children; if you see the children might have a problem if you tell them, you go to your pastor. You talk with him; he understands and prays for you. Then, as you continue with the people, you can tell the parents. And, if they continue to treat you well, then you can tell the rest of the family. From the family, you can tell the whole village. Those I told did not think it was such a terrible illness, because it is just like any other illness. So having HIV illness is like any other disease; you can live well.

After initially living in secrecy, participants found it liberating to go public with their HIV illnesses. Becoming widely disclosed as HIV positive quelled the gossiping and stigma they had experienced. The women also encountered emotional support:

Because I went public, the people from my area know. And me, I have no problem with anybody. Just before I went public, people were gossiping. But, when I told them, they stopped all that! Yes! They don’t talk about it, because I have already told them I have it [HIV]. Yes! So, gossip is the thing that is not good, because people were talking about me.

Sometimes you even fear telling people that now you’re like this, I’m HIV positive. I decided to go public, because I had already told my friends, and they went gossiping. I said, “Okay, why are you gossiping? You are a lady like me. Why are you gossiping about me? Do you know what you have? For the last 5 years, you have done sex without a condom. How sure are you that you’re not HIV positive?” So, I just started like that, talking to people, talking to those friends. The stigma that I was in, shhhhhhh, it went away. I just exposed it.

Others who had gone public viewed their public acknowledgment of positive HIV status as a means of reaching others in the community to educate them about HIV and encourage them to be tested. To these women, disclosure was done out of a sense of duty. They felt they were ambassadors to their communities, even though they risked ridicule and rejection:

Yesterday, I was cultivating, and I wanted to go to this place … to tell them my msimamo (stance) on my positive status, so they understand what this [HIV] is and what they can do. Yes, because they are starting to understand in depth, and now they do not want to discriminate against me. Because of the teaching I have had, some now want to come to me to know what it is that I am doing.

Overall, HIV disclosure was calculated on trust. Some who had good reason to fear repercussions of disclosure could not take the risk of disclosing their HIV status. Others found comfort in careful disclosure to particular people that they could trust. Still others who felt less threatened found liberation in public disclosure.

DISCUSSION

In many cases, after years of battling their own symptoms, as well as the symptoms of their spouses and children, participants in this study had no idea that they had HIV. The narrations of 40 seropositive women in Kenya reveal that the aftermath of HIV diagnosis is filled with strong, immediate emotions with potential long-term consequences. Women’s narratives exhibited a full spectrum of reactions, from immediate, intense emotions to resistance to the diagnosis, to acceptance of one’s HIV diagnosis, and then finally finding liberation in disclosure. Their immediate emotions ranged from fear and shock to depression, despair, and suicidality. Women also experienced resistance from their spouses or from themselves to their HIV diagnoses and struggled with keeping their HIV diagnosis secret. When women found a way to accept their illnesses, they were better able to cope with the demands of the illness. For some women, accepting their illnesses came easier than for others. Women’s arrival to acceptance helped them to find liberation in disclosure. These findings are similar to those of other previous studies across HIV-infected women in Kenya (Amuyunzu-Nyamongo et al., 2007).

In our study, dealing with HIV illness was exigent for women as they tried to make sense of their own illness. It was even more taxing when other family members were ill, because women are usually the caregivers in their families. Women who take care of HIV-infected children are often socially isolated because of the stigma attached to HIV. The existence of HIV stigma also meant that family support could not be counted on when women became HIV infected. Previous studies have shown that women with HIV in sub-Saharan Africa often are rejected in their communities and might have their property seized from them when their husbands die (Hunter, 2003; Luginaah, Elkins, Maticka-Tyndale, Landry, & Mathui, 2005; UNAIDS, 2004, 2006).

While knowing one’s HIV status is crucial in HIV transmission prevention (Ikorok & Akpabio, 2007; UNAIDS/WHO, 2008), being able to deal with the aftermath of diagnosis is of great significance. The consequences of knowing one’s HIV-positive status can be devastating without appropriate pretesting and post-testing counseling and psychological (Shacham et al., 2008; Whetten, Reif, Whetten, & Murphy-McMillan, 2008, and material (Datta & Njuguna, 2008) support for the women. Our study is in concurrence with others that have found that fear of finding out one’s HIV status is high among women due to anxiety over the possible aftermath of being known to be HIV positive, including abuse and even abandonment (Dlamini et al., 2007; Makoae et al., 2008). Experiences of women living with HIV in Kenya give us some insights into possible ways that health care workers, including nurses, can help guide women through this critical trajectory of the aftermath of HIV discovery, thus helping them progress successfully from shock, fear, depression, despair, and suicidality to acceptance of HIV diagnosis and finding liberty in disclosure. The results of this study suggest that pretesting and post-testing counseling, including systematic referral to support groups, informed by women themselves, is needed in offering anticipatory guidance and counseling for women seeking HIV testing and treatment. Including support-group attendance as part of HIV management might offer opportunities for psychological support that might help women get tested in the first place and also, once tested, effectively progress warding off stigma and finding liberty in disclosure (Medley et al., 2009).

Other studies echo similar findings that fear of stigma can drive people away from knowing their HIV status (Meiberg, Bos, Onya, & Schaalma, 2008; Nthomang et al., 2009), limiting HIV prevention (Ikorok & Akpabio, 2007; UNAIDS/WHO, 2008). Citing widespread stigma against people with AIDS, women in this study were strategic about to whom they disclosed their HIV-positive status. Consistent with findings from other studies, in Kenya (Miller & Rubin, 2007), South Africa (Varga, Sherman, & Jones, 2005), and the United States (Buseh & Stevens, 2006), self-disclosure, for the women in our study, was balanced against the potential for tangible support and was employed to resist the negative consequences of stigmatizing reactions for themselves and their children. For some, disclosure of HIV became a tool for dispelling gossip. For others, disclosure was a way to encourage families, friends, and neighbors to know their own HIV status. Disclosure facilitated women in accepting their status, which, as Mabunda (2004) found, was a prerequisite to moving forward with their lives.

Despite how the women cited benefits of disclosure, disclosure about one’s HIV status was painstakingly calculated, with some women keeping their diagnoses secret to protect themselves or their children from stigma (Palin et al., 2009), while some women found liberty in disclosure and used it to dispel gossip and stigma. Women who test HIV positive have a great need to know when disclosure is in their interest because of the risk that disclosing one’s status carries, especially if their partners are unwilling to admit or accept their own risk of HIV infection (Obermeyer, Sankara, Bastien, & Parsons, 2009). Such disclosure can lead to gender-based violence (Fonck et al., 2005) or even lead to women being ostracized from their families or to losing their property, leaving them with nothing to support themselves and their children (Krishnan et al., 2008).

In our study, as women accepted their HIV status, they were able to move toward disclosure, finding liberty, living positively, and adhering to their HIV treatment regimens. Such acceptance is essential, because in findings of prior studies, fear and stigma have been associated with decreased ART adherence and constitute a barrier to social support (Nachega et al., 2006; Nam et al., 2008). Efforts to guide women toward accepting their HIV diagnoses are crucial in ensuring long-term adherence to HIV treatment, as recent studies have linked acceptance of one’s HIV diagnosis to adherence to ART (Nam et al., 2008), thus saving lives. Adherence to ART among HIV-positive persons living with HIV is crucial in sustaining gains made by increased access to ART in resource-limited areas, because nonadherence can lead to drug resistance and treatment failure due to there being few treatment options in these regions (Nam et al., 2008). Insights into disclosure practices (Greeff et al., 2008) might help health care practitioners in effectively counseling women both before and after HIV diagnosis and in adequately linking them to support groups.

Women who joined support groups or who had adequate counseling reported that they transitioned effectively into accepting their HIV diagnoses. According to the women in this study, support groups offered confirmation, emotional comfort, and solidarity for those women in the study who had access to them. For them, support groups were their major source of knowledge about HIV illness, self-care, and risk reduction. In support groups, women also learned about dispelling fears and stigma about HIV illness, which enabled them to live positively. A study by Mabunda (2004) found similar support-group benefits in rural South Africa. Participating in support groups gave the women hope, allowing them to see others who are infected and doing well; this was the most beneficial observation for newly diagnosed HIV-infected women. Women, over time, became advocates in their communities, using what they learned in support groups to help others recognize signs and symptoms of HIV. This finding is similar to one from an earlier study conducted among HIV-infected women in Zimbabwe (Krabbendam, Kuijper, Wolffer, & Drew, 1998). Self-validation gave way to commitment to help others who were suffering in isolation from HIV illness. Hence, support groups became the entry point for health care, rather than the other way around.

Women felt that support groups were most effective when they were specific to a target group. The need to tailor support groups to the needs and population mix of participants was emphasized by a recent Kenyan study that focused on female sex workers (Ngugi et al., 2007). Its findings emphasized that peer-based education fostered behavioral change. Although women felt effective in reaching other women and encouraging them to get tested for HIV, they found it uncommonly difficult to successfully convince men to go for HIV testing or come to HIV support groups. They believed that men-only support groups should be initiated. Delayed response by men to be tested and to disclose their own HIV status has been echoed in other HIV support-group studies (Miller & Rubin, 2007; Varga, Sherman, & Jones, 2005).

RECOMMENDATIONS

Overall, findings from our study present important implications for health care providers and health care policymakers alike. As the findings from our study suggest, knowing one’s HIV status can have dire consequences, including despair and suicide. Failure to have adequate counseling, including help through support groups, can predispose women to long-term mental health problems. Knowing women’s experiences after HIV diagnosis might help guide counseling and help develop mental health programs with input from women’s voices. Kenya’s Ministry of Health has made only minimal provisions for mental health (Ndetei et al., 2009) in a country where mental health issues remain stigmatized and largely undiagnosed. When a woman has HIV, another still highly stigmatized illness, it places not only the woman at risk for stigma and discrimination, but also her whole family. As HIV becomes a chronic illness, mental health needs and disparities will become increasingly visible. As access to HIV/AIDS treatment becomes more available and as more people test positive, primary health care providers, who are largely nurses in public health clinics, are bound to be the ones diagnosing and treating related mental health issues.

Fear of the consequences of being diagnosed as HIV positive can keep women away from knowing their status, frustrating the intended purpose of commitment to universal access to HIV treatment (UNAIDS/WHO, 2008). As detrimental as this is anywhere, such fear has a greater impact on women who in Kenya, as elsewhere in sub-Saharan Africa, are the primary family caregivers. If women who are HIV positive delay in obtaining diagnosis, it means that they would not be diagnosed until AIDS symptoms have manifested late in the illness, leading to early deaths. This study about women who bear the brunt of HIV in sub-Saharan Africa places women’s voices at the center of the quest for effective policies and guidelines regarding counseling persons who are HIV positive, especially women.

Based on the narratives of the women in this study, we recommend raising the awareness of health care providers regarding mental health issues among women living with HIV in Kenya. Knowing potential reactions to HIV diagnosis can help these practitioners—who in some cases might not be trained in mental health practice—identify women facing mental health issues, offering appropriate treatment and counseling, thus lessening the burden of HIV. The need for increasing mental health services has been suggested in other studies (Reece et al., 2007; Viassova, Angelino, & Treisman, 2009). There is also a need to support counselors and other health care workers, including nurses who provide health care for persons living with HIV, from burnout as the demand for their services continues to rise (Grinstead et al., 2000).

The women’s narratives also informed our recommendation to offer anticipatory pre- and post-testing counseling that addresses Kenyan women’s potential reactions to HIV diagnosis as they relate to HIV prevention and treatment. Even with increased access to ART, HIV prevention remains crucial to curbing HIV. Knowing one’s status is pivotal in HIV prevention. As prevention initiatives are scaled upward and more people are encouraged to get tested, efforts to anticipate their reactions and guide them appropriately are warranted in order to prevent or limit untoward results and decrease the debilitating effects of being told one is HIV positive. More and more, HIV scaling is emphasized as provider-initiated voluntary counseling and testing take center stage (Matovu & Makumbi, 2007). As HIV treatment becomes more available in resource-limited settings, anticipating and appropriately guiding those who receive the HIV diagnosis, using guidelines informed by those who are HIV positive, is crucial in mitigating or avoiding long-lasting consequences of HIV diagnosis.

Our recommendation is for pre- and post-counseling for women to be gender sensitive. Since early diagnosis of HIV through testing and counseling has increasingly been credited with early access to ART (Matovu & Makumbi, 2007), effective counseling that takes into account the experiences of women living with HIV is fundamental. Carefully planned pretesting counseling that includes how to deal with immediate reactions to HIV diagnosis and how to progress to acceptance and, eventually, experience liberty in disclosure are warranted. In this study, women shared personal reactions to HIV diagnosis. Understanding these personal reactions might help those involved with counseling both before and after HIV testing to limit and prevent untoward results such as suicide and lack of follow-up for fear of being stigmatized, only to reemerge in the health care setting after the HIV infection has progressed to AIDS. This becomes even more vital as more and more women are encouraged to know their status.

The narratives of women in this study point to the value of support groups in helping them move through the trajectory of reactions to HIV diagnosis. In Kenya, where four out of five people who are HIV positive do not know their HIV status (NASCOP, 2008), the need to reduce the fears of knowing one’s own HIV status due to the uncertainty of what might happen after HIV diagnosis is great, given the potential of such fears keeping people from being tested or from following up after testing HIV positive. We recommend that information about support groups should be part of the pre- and post-testing counseling for women. This might help women deal effectively with immediate reactions, minimize stigma, and progress toward disclosure, curtailing long-lasting debilitation consequences of HIV diagnosis (Reece et al., 2007; Shacham et al., 2008). Since high-level treatment is needed to lower changes arising from drug resistance and resulting treatment failure, helping women move toward acceptance of and liberation through disclosure decreases self-stigmatization—and may increase adherence to treatment plans, thus saving lives.

LIMITATIONS

Since this study included only Kenyan women, its generalizability to women in other countries is limited. Its findings however, may be transferable to situations and groups similar to those studied (Lincoln & Guba, 1985). Narrative interviews are particularly pertinent for eliciting detailed accounts of adverse life events such as HIV infection. This was a cross-sectional interview study, and because of the sensitive nature of the topic involved, some participants could have benefited from more than one interview, using the initial interview as an introductory phase of the study. A longitudinal design would be stronger in many ways, facilitating rapport and disclosure, and also charting change over time in how HIV-infected women in Kenya cope with HIV diagnosis.

Acknowledgments

This research was supported in part by the National Institutes of Health under the Ruth L. Kirschstein National Research Service Award (F31NR 009628) from the National Institute of Nursing Research and by the Midwest Nursing Research Society Dissertation Award. We thank the women living with HIV in Kenya who willingly shared their stories with us, and Beatrice Mutemi for her assistance in obtaining participants for this study.

Contributor Information

PENINNAH M. KAKO, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, Wisconsin, USA

PATRICIA E. STEVENS, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, Wisconsin, USA

ANNA K. KARANI, School of Nursing, University of Nairobi, Nairobi, Kenya

REFERENCES

  1. Amuyunzu-Nyamongo M, Okeng’o L, Wagura A, & Mwenzwa E (2007). Putting on a brave face: The experiences of women living with HIV and AIDS in informal settlements of Nairobi, Kenya. AIDS Care, 19, S25–S34. [DOI] [PubMed] [Google Scholar]
  2. Anderson M, Elam G, Solarin I, Gerver S, Fenton K, & Easterbrook P (2009). Coping With HIV: Caribbean People in the United Kingdom. Qualitative Health Research, 19, 1060–1075. [DOI] [PubMed] [Google Scholar]
  3. Auerbach C, & Silverstein L (2003). An introduction to coding and analysis: Qualitative data. New York, NY: New York University Press. [Google Scholar]
  4. Brislin R (1970). Back-translation for cross-cultural research. Journal of Cross-Cultural Psychology, 1, 186–216. [Google Scholar]
  5. Buseh AG, & Stevens PE (2006). Constrained but not determined by stigma: Resistance by African American women living with HIV. Women and Health, 44(3), 1–18. [DOI] [PubMed] [Google Scholar]
  6. Charmaz K (1999). Stories of suffering: Subjective tales and research narratives. Qualitative Health Research, 9, 1257–1263. [Google Scholar]
  7. Chase SE (2005). Narrative inquiry: Multiple lenses, approaches, voices. In Denzin NK & Lincoln Y (Eds.), Handbook of qualitative research (3rd ed., pp. 651–680). Thousand Oaks, CA: Sage. [Google Scholar]
  8. Ciambrone D (2001). Illness and other assaults on self: The relative impact of HIV/AIDS on women’s lives. Sociology of Health and Illness, 23, 517–540. [Google Scholar]
  9. Conrad P (1990). Qualitative research on chronic illness: A commentary on method and conceptual development. Social Science and Medicine, 30, 1257–1263. [DOI] [PubMed] [Google Scholar]
  10. Creswell J (1998). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage Publications. [Google Scholar]
  11. Datta D, & Njuguna J (2008). Microcredit for people affected by HIV and AIDS: Insights from Kenya. Journal of Social Aspects of HIV/AIDS Research Alliance, 5(2), 94–102. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Denzin N (2000). Handbook of qualitative research (2nd ed.). Thousand Oaks, CA: Sage Publications. [Google Scholar]
  13. Dlamini PS, Kohi TW, Uys LR, Phetlhu RD, Chirwa ML, Naidoo JR,…Makoae LM (2007). Verbal and physical abuse and neglect as manifestations of HIV/AIDS stigma in five African countries. Public Health Nursing, 24, 389–399. [DOI] [PubMed] [Google Scholar]
  14. Fonck K, Leye E, Kidula N, Ndinya-Achola J, & Temmerman M (2005). Increased risk of HIV in women experiencing physical partner violence in Nairobi, Kenya. AIDS and Behavior, 9, 335–339. [DOI] [PubMed] [Google Scholar]
  15. Greeff M, Phetlhu DR, Makoae LN, Dlamini PS, Holzemer WL, Naidoo J, … Chirwa ML (2008). Disclosure of HIV status: Experiences and perceptions of persons living with HIV/AIDS and nurses involved in their care in five Africa countries. Qualitative Health Research, 8, 311–324. [DOI] [PubMed] [Google Scholar]
  16. Grinstead OA, Van Der Straten A, & Voluntary HIV-1 Counseling and Testing Efficacy Study Group. (2000). Counselors’ perspectives on the experience of providing HIV counseling in Kenya and Tanzania: The Voluntary HIV-1 Counseling and Testing Efficacy Study. AIDS Care, 12, 625–642. [DOI] [PubMed] [Google Scholar]
  17. Hall J, & Stevens PE (1991). Rigor in feminist research. Advances in Nursing Science, 13(3), 16–29. [DOI] [PubMed] [Google Scholar]
  18. Heckman BD (2006). Psychosocial differences between whites and African Americans living with HIV/AIDS in rural areas of 13 US states. Journal of Rural Health, 22, 131–139. [DOI] [PubMed] [Google Scholar]
  19. Hunter S (2003). Black death: AIDS in Africa. New York, NY: Palgrave Macmillan. [Google Scholar]
  20. Ikorok MM, & Akpabio II (2007). Women’s choice of strategies for improving utilization of HIV/AIDS screening services. Health Care for Women International, 28, 700–711. [DOI] [PubMed] [Google Scholar]
  21. Kako PM, Stevens PE, Mkandawire-Valhmu L, Karani A, & Banda A (2011). Critical use of Narrative Inquiry to thwart pitfalls of late HIV diagnosis: Insights from the stories of women living with HIV in Kenya. Unpublished manuscript.
  22. Krishnan S, Dunbar M, Minnis AM, Medlin C, Gerdts CE, & Padian NS (2008). Poverty, gender inequities, and women’s risk of human immunodeficiency virus/AIDS. Annals of the New York Academy of Sciences, 1136, 101–110. [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Lincoln YS, & Guba EG (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. [Google Scholar]
  24. Luginaah I, Elkins D, Maticka-Tyndale E, Landry T, & Mathui M (2005). Challenges of a pandemic: HIV/AIDS-related problems affecting Kenyan widows. Social Science and Medicine, 61, 1219–1228. [DOI] [PubMed] [Google Scholar]
  25. Mabunda G (2004). HIV knowledge and practices among rural South Africans. Journal of Nursing Scholarship, 36, 300–304. [DOI] [PubMed] [Google Scholar]
  26. Makin JD, Forsyth BW, Visser M, Sikkema K, Neufeld S, & Jeffery B (2008). Factors affecting disclosure in South African HIV-positive pregnant women. AIDS Patient Care and STDs, 22, 907–916. [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Makoae L, Greeff M, Phethlu R, Uys LR, Naidoo JR, Kohi T, … Holzemer WL (2008). Coping strategies for HIV and AIDS: A multinational African study. Journal of the Association of Nurses in AIDS Care, 19, 137–146. [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Maman S, Mbwambo JK, Hogan NM, Kilonzo GP, Campbell JC, Weiss E, & Sweat MD (2002). HIV-positive women report more lifetime partner violence: Findings from a voluntary counseling and testing clinic in Dar es-salaam, Tanzania. American Journal of Public Health, 92, 1331–1337. [DOI] [PMC free article] [PubMed] [Google Scholar]
  29. Matovu JK, & Makumbi FE (2007). Expanding access to voluntary HIV counseling and testing in sub-Saharan Africa: Alternative approaches for improving uptake. Topical Medicine and International Health, 12, 1315–1322. [DOI] [PubMed] [Google Scholar]
  30. Medley AM, Kennedy CE, Lunyolo S, & Sweat M (2009). Disclosure outcomes, coping strategies, arid life changes among women living with HIV in Uganda. Qualitative Health Research, 19, 1744–1754. [DOI] [PubMed] [Google Scholar]
  31. Meiberg AE, Boss AE, Onya HE, & Schaalma HP (2008). Fear of stigmatization as barrier to voluntary HIV counselling and testing. East African Journal of Public Health, 5(2), 49–54. [PubMed] [Google Scholar]
  32. Miller AN, & Rubin DL (2007). Factors leading to self-disclosure of a positive HIV diagnosis, Nairobi, Kenya: People living with HIV/AIDS in the Sub-Saharan. Qualitative Health Research, 17, 586–598. [DOI] [PubMed] [Google Scholar]
  33. Nachega JB, Knowlton AR, Deluca A, Schoeman JH, Watkinson L, Efron A, … Maartens G (2006). Treatment supporter to improve adherence to antiretroviral therapy in HIV-infected South African adults. A qualitative study. Journal of Acquired Immune Deficiency Syndrome, 43(suppl. 1), S127–S133. [DOI] [PubMed] [Google Scholar]
  34. Nam SL, Fielding K, Avalos A, Dickinson D, Gaolathe T, & Geissler W (2008). The relationship of acceptance or denial of HIV-status to antiretroviral adherence among adult HIV patients in urban Botswana. Social Science & Medicine, 67, 301–310. [DOI] [PubMed] [Google Scholar]
  35. National AIDS STI Control Programme & Ministry of Health Kenya (NASCOP). (2008). Kenya AIDS indicator survey-KAIS-2007: Preliminary report. Nairobi, Kenya: Author. [Google Scholar]
  36. Ndetei D, Khasakhala L, Kuria M, Mutiso V, Ongecha-Owuor F, & Kokonya D (2009). The prevalence of mental disorders in adults in different level general medical facilities in Kenya: A cross-sectional study. Annals of General Psychiatry, 8(1), 1. [DOI] [PMC free article] [PubMed] [Google Scholar]
  37. Ngugi EN, Chakkalacka M, Sharma A, Bukusi E, Njoroge B, & Kimani J, … Kibera HIV Study Group. (2007). Sustained changes in sexual behavior by female sex workers after completion of randomized HIV prevention trial. Journal of Acquired Immune Deficiency Syndrome, 45, 588–594. [DOI] [PubMed] [Google Scholar]
  38. Nthomang R, Phaladze N, Oagile N, Ngwenya B, Seboni N, Gobotswang K, & Kubani R (2009). People living with HIV and AIDS on the brink: Stigma—A complex socialcultural impediment in the fight against HIV and AIDS in Botswana. Health Care for Women International, 30, 233–234. [DOI] [PubMed] [Google Scholar]
  39. Nzioka C (2000). The social meanings of death from HIV/AIDS: An African interpretative view. Culture, Health, & Sexuality, 2(1), 1–14. [Google Scholar]
  40. Obermeyer CM, Sankara A, Bastien V, & Parsons M (2009). Gender and HIV testing in Burkina Faso: An exploratory study. Social Science & Medicine, 69, 877–884. [DOI] [PMC free article] [PubMed] [Google Scholar]
  41. Olesen V (1994). Feminisms and models of qualitative research. In Denzin NK & Lincoln Y (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage Publishing. [Google Scholar]
  42. Palin FL, Armistead L, Clayton A, Ketchen B, Lindner G, Kokot-Louw P, et al. (2008). Disclosure of maternal HIV-infection in South Africa: Description and relationship to child functioning. AIDS and Behavior, 13, 1241–1252. [DOI] [PubMed] [Google Scholar]
  43. Pitchford E, & Teijlingen E (2005). International public health research involving interpreters: A case study from Bangladash. BMC Public Health, 5(71), 1–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Reece M, Shacham E, Monahan P, Yebei V, Ong’or WO, Omollo O, & & Ojwang C (2007). Psychological distress symptoms of individuals seeking HIV-related psychosocial support in western Kenya. AIDS Care, 19, 1194–1200. [DOI] [PubMed] [Google Scholar]
  45. Reissman CK (1993). Narrative analysis. Newbury Park, CA: Sage Publishing. [Google Scholar]
  46. Reissman CK (2008). Narrative methods for the human sciences. Los Angeles, CA: Sage. [Google Scholar]
  47. Richards L (2005). Handling qualitative data: A practical guide. Thousand Oaks, CA: Sage Publications. [Google Scholar]
  48. Richards T, & Richards L (2003). The way ahead in qualitative research. Journal of Modern Applied Statistical Methods, 2(1), 16–26. [Google Scholar]
  49. Rist R (2000). Influencing the policy process with qualitative research. In Denzin NK & Lincoln Y (Eds.), Handbook of qualitative research (2nd ed., pp. 1001–1017). Thousand Oaks, CA: Sage Publications. [Google Scholar]
  50. Rutledge SE (2009). Formation of personal HIV disclosure policies among HIV-positive men who have sex with men. AIDS Patient Care and STDs, 23, 531–543. [DOI] [PMC free article] [PubMed] [Google Scholar]
  51. Sambisa W, Curtis S, & Mishra V (2010). AIDS stigma as an obstacle to uptake of HIV testing: Evidence from a Zimbabwean national population-based survey. AIDS Care, 22, 170–186. [DOI] [PubMed] [Google Scholar]
  52. Sanjobo N, Frich J, & Frethe M (2008). Barriers and facilitators to patient’s adherence to antiretroviral treatment in Zambia: A qualitative study. Journal of Social Aspects of HIV/AIDS, 5, 136–143 [DOI] [PMC free article] [PubMed] [Google Scholar]
  53. Shacham E, Reece M, Ong’or WO, Omollo O, Monahan PO, & Ojwang C (2008). Characteristics of psychosocial support seeking during HIV-related treatment in Western Kenya. AIDS Patient Care & STDs, 22, 595–601. [DOI] [PMC free article] [PubMed] [Google Scholar]
  54. Silverman D (2000). Analyzing talk and text. In Denzin NK & Lincoln Y (Eds.), Handbook of qualitative research (2nd ed., pp. 821–834). Thousand Oaks, CA: Sage. [Google Scholar]
  55. Stevens PE (1993). Marginalized women’s access to health-care: A feminist narrative analysis. Advances in Nursing Science, 16(2), 39–45. [DOI] [PubMed] [Google Scholar]
  56. Stevens PE (1995). Structural and interpersonal impact of heterosexual assumptions on lesbian health care clients. Nursing Research, 44(1), 25–30. [PubMed] [Google Scholar]
  57. Stevens PE (1996). Struggles with symptoms: Women’s narratives of managing HIV illness. Journal of Holistic Nursing, 14, 142–160. [DOI] [PubMed] [Google Scholar]
  58. Stevens PE, & Hall J (1998). Participatory action research for sustaining individual and community change: A model of HIV prevention education. AIDS Education and Prevention, 10, 387–402. [PubMed] [Google Scholar]
  59. Stevens PE, & Hildebrandt E (2006). Life changing words: Women’s responses to being diagnosed with HIV infection. Advances in Nursing Science, 29, 207–221. [DOI] [PubMed] [Google Scholar]
  60. UNAIDS. (2004). 2004 Report on the global AIDS epidemic: 4th global report. Geneva, Switzerland: Author. [Google Scholar]
  61. UNAIDS. (2006). Report on the global AIDS epidemic. Geneva, Switzerland: Author. [Google Scholar]
  62. UNAIDS/World Health Organization (WHO). (2008). AIDS epidemic update. Geneva, Switzerland. [Google Scholar]
  63. Varga CA, Sherman GG, & Jones SA (2005). HIV-Disclosure in the context of vertical transmission: HIV-positive mothers in Johannesburg, South Africa. AIDS Care, 18, 952–960. [DOI] [PubMed] [Google Scholar]
  64. Viassova N, Angelino AF, & Treisman GJ (2009). Update on mental health issues in patients with HIV infection. Current Infectious Disease Reports, 11, 163–169. [DOI] [PubMed] [Google Scholar]
  65. Whetten K, Reif S, Whetten R, & Murphy-McMillan L (2008). Trauma, mental health, distrust, and stigma among HIV-positive persons: Implications for effective care. Psychosomatic Medicine, 70, 531–538. [DOI] [PubMed] [Google Scholar]
  66. World Health Organization (WHO). (2006). Towards universal access by 2010: How WHO is working with countries to scale-up HIVprevention, treatment, care, and support. Geneva, Switzerland: Author. [Google Scholar]
  67. Yebei V, Fortenberry J, & Oyuku D (2008). Felt stigma among people living with HIV/AIDS in rural and urban Kenya. African Health Sciences, 8(2), 97–102. [PMC free article] [PubMed] [Google Scholar]

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