Research article

‘‘Telling my husband I have HIV is too heavy to come out of my

mouth’’: pregnant women’s disclosure experiences and support

needs following antenatal HIV testing in eastern Uganda

Joseph Rujumba§,1,2, Stella Neema3, Robert Byamugisha2,4, Thorkild Tylleskär2, James K Tumwine1 and

Harald K Heggenhougen2

§Corresponding author: Joseph Rujumba, Department of Paediatrics and Child Health, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala,

Uganda. Tel: �256 772 493 078. (jrujumba@yahoo.com)

Abstract

Introduction: Disclosure of HIV serostatus by women to their sexual partners is critical for the success of the prevention

of mother-to-child transmission of HIV (PMTCT) programme as an integrated service in antenatal care. We explored pregnant

HIV-positive and HIV-negative women’s partner disclosure experiences and support needs in eastern Uganda.

Methods: This was a qualitative study conducted at Mbale Regional Referral Hospital in eastern Uganda between January

and May 2010. Data collection was through in-depth interviews with 15 HIV-positive and 15 HIV-negative pregnant women

attending a follow up antenatal clinic (ANC) at Mbale Hospital, and six key informant interviews with health workers at the clinic.

Data management was done using NVivo version 9, and a content thematic approach was used for analysis.

Results: All HIV-negative women had disclosed their HIV status to their sexual partners but expressed need for support to

convince their partners to also undergo HIV testing. Women reported that their partners often assumed that they were equally

HIV-negative and generally perceived HIV testing in the ANC as a preserve for women. Most of the HIV-positive women had not

disclosed their HIV status to sexual partners for fear of abandonment, violence and accusation of bringing HIV infection into the

family. Most HIV-positive women deferred disclosure and requested health workers’ support in disclosure. Those who disclosed

their positive status generally experienced positive responses from their partners.

Conclusions:Within the context of routine HIV testing as part of the PMTCT programme, most women who test HIV-positive find

disclosure of their status to partners extremely difficult. Their fear of disclosure was influenced by the intersection of gender

norms, economic dependency, women’s roles as mothers and young age. Pregnant HIV-negative women and their unborn babies

remained at risk of HIV infection owing to the resistance of their partners to go for HIV testing. These findings depict a glaring

need to strengthen support for both HIV-positive and HIV-negative women to maximize opportunities for HIV prevention.

Keywords: pregnant women; HIV disclosure to partner; HIV testing by proxy; support needs; intersectionality.

Received 27 April 2012; Revised 8 May 2012; Accepted 11 July 2012; Published 14 August 2012

Copyright: – 2012 Rujumba J et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons

Attribution License (http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the

original work is properly cited.

Introduction
In Uganda, prevention of mother-to-child transmission of HIV

(PMTCT) programme was initiated in 2000, originally using

the voluntary counselling and testing (VCT) approach. Since

2006, HIV testing for PMTCT in Uganda has been provided

routinely, integrated within the antenatal, child birth and

post-partum healthcare clinics [1,2]. Routine HIV counselling

and testing, though relatively new in most low-income

settings, has been part of the standard of care in many

high-income countries since the late 1980s and early 1990s

[3�5]. In line with WHO recommendations, the main pillars

of Uganda’s PMTCT programme are (1) preventing HIV

infection in women of child-bearing age, (2) preventing

unwanted pregnancies among women living with HIV, (3)

reducing HIV transmission from women living with HIV to

their infants and (4) providing care and support for women

living with HIV, their children and families [2,6]. Disclosure of

HIV status by women to their sexual partners is critical for the

success of each of the four pillars of the PMTCT programme.

Therefore, disclosure is encouraged and promoted during

pre- and post-test HIV counselling, but it could be a challenge

for many women. Studies done in the African setting have

documented fear of stigma [7], loss of economic security and

accusations of infidelity [8], violence [9] as well as the desire

to retain moral integrity and status [10] as some barriers

to HIV status disclosure among pregnant women. In Uganda,

HIV-related stigma remains a challenge for women in

accessing HIV prevention and care services including PMTCT

[11]. Stigma also hinders early initiation of antiretroviral

therapy (ART) [12]. Rates of disclosure ranging from 17 to

86% have been documented among women in different

African settings, with those tested at VCT clinics more

likely to disclose their HIV status to their sexual partners

than women tested in the context of antenatal care [8].

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However, most studies on disclosure have focused on people

who test HIV-positive [13,14] than those who test HIV-

negative, more so HIV-negative women may have unique

experiences and support needs. Besides, women’s disclosure

experiences could vary by HIV status or even within each

of these sub-groups depending on the varied social groups

women belong to.

In this paper, we draw upon intersectionality theory as an

analytical framework to underscore the relationships be-

tween women’s disclosure, or lack of disclosure, and the

influence of various social categories assigned to women.

Intersectionality was advanced by ‘‘feminists’’ to challenge

the unitary concept of ‘‘women’’. For example, feminists have

argued that race and gender interacted to shape the multiple

dimensions of black women’s employment experiences

[15], and to speak of ‘‘women’’ as a homogeneous group

who faced the same issues, marginalized other categories of

oppression [15,16]. Intersectionality relates to the multi-

dimensional nature of identity [15,16], focuses on differences

among groups and seeks to illuminate various interacting

social factors that affect human lives [17]. The basis for

intersectionality is that various dimensions of social stratifi-

cation including socio-economic status, gender and age,

among others, can add up to great disadvantage for some

people or advantage for others [17,18]. Intersectionality

theory strives to elucidate and interpret multiple and

intersecting systems of oppression and privilege [19]. The

concept of intersectionality is particularly relevant in our

study of women’s disclosure experiences of their HIV status

to sexual partners, as it aids an in-depth examination of how

women’s experiences are linked to their social identities like

age, women’s care giving roles as mothers, type of marital

relationship, women’s degree of dependency on men, among

other social factors operating within the social context

where women lead their lives. Indeed Gita and Ostlin [20]

argued that an understanding of how gender intersects with

economic inequality or a number of other social markers is

important for awareness of how gender power relations work

to produce health inequality, in our case how gender power

relations influence women’s disclosure experiences as a key

determinant of access to HIV prevention, care and support

services.

Within the context of the ongoing expansion of HIV

counselling and testing services, integrated in the antenatal

clinic (ANC) in Uganda [21], understanding women’s ex-

periences of HIV status disclosure to their partners and

the support women require before and/or after disclosure

could provide insights for how best to enhance programme

success. This study explored pregnant HIV-positive and HIV-

negative women’s partner disclosure experiences and sup-

port needs at Mbale Regional Referral Hospital, eastern

Uganda.

Methods
Study area

The study was conducted in the ANC at Mbale Regional

Referral Hospital, eastern Uganda, between January and May

2010. Mbale Regional Referral Hospital is located in Mbale

District, about 245 km east of Kampala, the capital city of

Uganda. The district has a population of 428,800 people [22],

the majority being rural dwellers [23]. Mbale Regional

Referral Hospital serves an estimated catchment population

of 1.9 million people [24] from 13 districts in eastern Uganda.

In Uganda, 94% of the women attend antenatal care at least

once, while 47% of the women make at least four ANC visits

[22]. In 2005, overall HIV prevalence in eastern Uganda,

where Mbale District is located, was estimated at 5.3% while

prevalence was 6.3% among women aged 15 to 49 years [25]

in the same period.

The ANC at the hospital operates daily on weekdays and

serves about 60 pregnant women per clinic day. All antenatal

attendees are given HIV education, which doubles as pre-

test HIV counselling in line with the Uganda national HIV

counselling and testing guidelines [1]. The pre-test health

education covers the general maternal and child healthcare,

as well as HIV-specific issues including HIV prevention,

transmission, testing and care. Since 2006, all women who

attend ANC at Mbale Hospital are tested for HIV, unless they

opt not to be tested, and they are encouraged to disclose

their HIV status to their sexual partners. A previous study

conducted at the Mbale Hospital ANC in 2009 documented a

high, almost universal, HIV testing rate among pregnant

women [26]. Mbale Hospital was chosen for being one of the

oldest PMTCT sites in Uganda and for serving largely rural

residents like the vast majority of Uganda’s population [22].

Study design

We conducted a qualitative study to explore pregnant

women’s experiences of routine HIV counselling and testing

as part of antenatal care, including women’s experiences as

in disclosure of their HIV status to their sexual partners.

In this paper, we focus on the disclosure aspects of the study.

A qualitative research design was deemed appropriate to

obtain an in-depth understanding of pregnant HIV-positive

and HIV-negative women’s partner disclosure experiences as

well as the support that women feel they required before

and after disclosure [27]. In addition, a qualitative design

facilitated an in-depth examination of the influence of

factors, such as gender, age, economic status and women’s

roles as mothers, on women’s HIV status disclosure to their

sexual partners.

Study participants and sampling

Thirty pregnant women (15 HIV-positive and 15 HIV-negative)

participated in the study during their follow up ANC visit at

Mbale Regional Referral Hospital. Study participants were

selected purposively from women who had gone through

routine HIV counselling and testing in their previous ANC

visit during the current pregnancy. Study participants who

provided written consent to participate in the study, were

pregnant, had taken an HIV test on a previous ANC visit and

were 18 years old or more were eligible. Variation in age,

parity and education level were considered in selection of

study participants. Only women who came back for subse-

quent ANC visits after HIV testing were included in the study.

Tracing pregnant women who had tested for HIV as part of

ANC at community level was not feasible in our case, given

the challenges of HIV stigma, especially, for those who tested

HIV-positive. Eligible women who agreed to participate in

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the study were identified through health workers at the ANC

who served as gatekeepers (people who can allow and

facilitate access to study participants) [28] and referred to

members of the study team stationed at the ANC. The

researchers obtained consent and enrolled study participants

consecutively after undergoing their routine consultation

and assessment. After interviewing 15 women in each of the

two groups, we felt that the information generated by later

interviews did not vary from earlier interviews, and thus no

further interviews were conducted.

Data collection

Individual interviews with pregnant women

A pre-tested interview guide [29,30] was used to explore

study concerns. The interview guide was pre-tested by the

research team at the ANC at Mbale Hospital. Data from this

phase were not included in the final analysis. Semi-structured

individual interviews [31] rather than focus group discussions

were conducted to allow free and confidential interaction

between researchers and women as HIV is still a sensitive

condition in the study setting. The interview guide consisted

of structured questions on women’s background charac-

teristics as well as open-ended qualitative questions with

probes, to allow an in-depth understanding of women’s

disclosure experiences. The key issues explored were:

whether women had disclosed their HIV status to their

partners or not, how women found the process of disclosure,

anticipated benefits and fear of disclosure, partners’ reaction

to disclosure as well as the support required by women

before and after disclosure. The interviews lasted for about

40 to 45 minutes, and most interviews (27) were audio

recorded, with exception of three women (one HIV-positive

and two HIV-negative) who did not consent for audio

recording. For all interviews, interviewers were paired up

(one asked questions and the other took notes). We made

this provision after the pre-test, where we realized that if

one person were to interview and take notes the interview

would become stilted and would take longer. Interviews were

conducted in Lumasaba, Luganda (main languages in the

study area) and a few in English. JR conducted interviews

in Luganda, and English and was assisted by three female

research assistants (university graduates, experienced in

qualitative research and conversant with the three lan-

guages). Audio-recorded interviews were transcribed and

translated into English. JR, together with one research

assistant, cross-checked the transcripts. While it was possible

that the male gender of one researcher (JR) could have

influenced women’s responses, this influence might have

been minimal. Being a social scientist with extensive training

and experience in conducting qualitative interviews involv-

ing women might have helped to neutralize this likely bias. In

all interviews, JR paired up with a female research assistant

and took time to build rapport with study participants before

commencing interviews. Besides, the findings that were

obtained from interviews conducted by female researchers

did not vary from those conducted by JR. The study also

benefited from peer briefing sessions involving multi-

disciplinary male and female investigators, which we believe

improved the credibility of study results.

Key informant interviews

Six health workers (one doctor, two counsellors and three

nurse midwives), involved in the antenatal care clinic,

participated in key informant interviews. These were in-

tended to contribute to a better understanding of women’s

disclosure experiences as well as providing an opportunity for

data triangulation involving comparing results from women

and healthcare providers [28]. A key informant interview

guide was used to conduct the interviews. Interviews ex-

plored whether women tested for HIV as part of antenatal

care services, disclosed their HIV status to partners, women’s

experiences, fears and support required before and after

disclosure.

Data analysis

Interim data analysis occurred concurrently with data collec-

tion through daily research team meetings, where emerging

issues and further data collection needs were identified. This

process was important in keeping track of the number of

interviews that were conducted and in identifying emerging

issues as well as those that required further probing. For

instance, the fears of HIV-positive women of disclosure and

men assuming similar HIV status as that of their partners

were probed further in interviews with health workers.

In addition, JR, who supervised data collection, briefed all

co-authors on preliminary insights and emerging issues of

the study. Further analysis was conducted by JR in close

collaboration with HKH using a content thematic approach

[32]. The English version of transcripts were imported into

NVivo version 9.0 [33] for coding and analysis. The analysis

was guided by the themes already contained in the interview

guide, which were further refined following multiple readings

of interview scripts to better understand the data, identify

sub-themes and to group the data according to themes for

analysis and interpretation. Quotations reflecting pregnant

women’s HIV disclosure experiences and support needs were

identified and have been used in the presentation of study

findings. The identities of study participants were masked;

for women we use ‘‘marital status, age and HIV status’’ as

key identifiers. The term ‘‘married’’ in this regard is used for

women who are formally married and those in informal

unions (cohabiting). A similar categorization was used in

the Uganda HIV/AIDS sero-behavioural survey [25] and is a

common practice for collecting routine health information at

health facilities in Uganda. For health workers we use ‘‘health

worker’’.

Concurrent triangulation was conducted in analysis of

data from pregnant women and those of key informants. This

enabled us to have an in-depth understanding of HIV-positive

and HIV-negative women’s disclosure experiences, response

from partners and the support women require before and

after disclosure. In addition, we conducted sub-group analy-

sis for similarities and differences in disclosure experiences of

HIV-positive and HIV-negative women.

Ethical considerations

Ethical approval for the study was obtained from the Uganda

National Council for Science and Technology, Makerere

University, College of Health Sciences, Research and Ethics

Committee and Mbale Regional Referral Hospital Institutional

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Review Committee. Permission was also obtained from

management of Mbale Hospital and the Mbale District

administration. All study participants provided written con-

sent to participate in the study. Ink pads for thumb print

were provided for those who could not read or write.

Research assistants were trained on the approach to data

collection and the ethical issues involved in HIV research.

Study participants were assured of confidentiality, and each

interview was conducted in a separate room provided by the

ANC management.

Results
Characteristics of study participants

The age of women ranged between 18 and 43 years, most

of them (25/30) were married and (26/30) depended on

agriculture for survival, and half of them had attained

primary education (Table 1).

The women’s experiences of disclosing their HIV status to

sexual partners are organized on the basis of major themes

that emerged from the interviews. These were (1) the

divergent and complex path to disclosure, which denotes

the difference in disclosure among pregnant HIV-negative

and HIV-positive women; (2) anticipated benefits and losses

of disclosure; (3) partner reaction to disclosure; and (4) the

support needed before and after disclosure (Table 2).

The divergent and complex path to disclosure of HIV status

to sexual partner

Different and complex paths to disclosure of HIV status to

sexual partners emerged for HIV-positive and HIV-negative

pregnant women. All pregnant women who had tested HIV-

negative reported that they had disclosed their HIV status to

their sexual partners and found the process easy, as one

woman explained:

Since I was HIV-negative, I was excited. When

I reached home I told my husband that when

I went for pregnancy check up, health workers

tested my blood and found I do not have HIV . . .
I felt happy because I was safe from HIV and I could

not hide this from my husband. I wanted him to

know so that he can remain faithful to me . . . if

I was positive it would have been difficult for me to

tell him. HIV-positive! . . . the man can say you gave

him HIV and he can chase you away or beat you . . ..
(Married, 24 years old, HIV-negative)

The common terminologies that run through HIV-negative

women’s disclosure narratives included ‘‘. . . I don’t have HIV,

I am negative, . . . we are safe, . . . I don’t have the virus, . . .

I know you are faithful to me, we should remain faithful to

each other’’ among others. As indicated in the quotation

above, HIV-negative women acknowledged that disclosure

would have been difficult if they had tested HIV-positive, for

fear of being accused of infecting their partners with HIV,

being sent away from home or being beaten.

On the contrary, most of the HIV-positive women (11/15)

had not disclosed their HIV status to their sexual partners.

They described the process of disclosure to their sexual

partners as ‘‘very difficult and too heavy’’ for them to

undertake; some did not know how to go about it, while

many preferred to defer it:

No, I have not told anyone since I tested, not even

my sister! The nurses advised me to tell my

husband, but every time I think about it I find

myself crying . . . I don’t know how to start or how

he will take it. He may think I have been cheating on

him. No, not now! I feel telling my husband I have

HIV is too heavy to come out of my mouth. I do not

even want to think about it. Not now. May be after

giving birth we will go together and test so that

health workers can tell us when we are together.

(Married, aged 22 years, HIV-positive)

Many HIV-positive women found disclosure very difficult,

especially when women thought that their partners would

react negatively or interpret women’s HIV status to mean

women have been unfaithful. Only four of the fifteen HIV-

positive women interviewed had disclosed to their sexual

partners. Analysis of disclosure narratives indicated that fear

Table 1. Characteristics of study participants

Characteristic

HIV-negative

women (n�15)

HIV-positive

women (n�15)

Frequency

(n�30) (%)

Age (years)

18 to 20 4 2 06 (20)

21 to 25 6 5 11 (37)

26 to 30 1 3 04 (13)

31 to 39 4 3 07 (23)

40 to 43 0 2 02 (07)

Education attained

None 1 1 02 (07)

Primary 7 8 15 (50)

Secondary 4 5 09 (30)

Tertiary 3 1 04 (13)

Main source of income

Agriculture 12 14 26 (87)

Formal

employment

3 1 04 (13)

Marital status

Single 2 3 05 (17)

Married/

cohabiting

13 12 25 (83)

Type of marriage (N�25)

Monogamy 10 7 17 (68)

Polygamy 3 5 08 (32)

Number of children ever given birth to

None 1 3 04 (13)

1 to 2 7 6 13 (43)

Three and

more

7 6 13 (43)

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and stress underlie the complexities of HIV disclosure to

sexual partners:

I did not tell any one immediately when I went

home, but later in the night, I had many thoughts,

I could not sleep so I had to tell my husband on

phone (husband had travelled). It was not easy but

my heart pushed me to tell him. I was feeling bad

and I said to myself if I don’t tell him, I might die of

stress. I told him with a lot of fear that when I went

for antenatal they found me with the HIV virus

(akawuka ka silimu). He first kept quiet and later told

me we shall help each other. I felt some relief

because I had told him, but I did not sleep that

night, I prayed to God that my husband does not

react badly because of what I had told him . . ..
(Married, 36 years, HIV-positive)

Interviews with health workers confirmed that indeed

most HIV-negative women find disclosure to their partners

easy while those who test HIV-positive encountered disclo-

sure as a difficult process: ‘‘Most, if not all, women who

test HIV negative tell their husbands but those who test

HIV positive, many don’t tell their partners, women fear that

their husbands will abandon them or beat them for bringing

HIV . . .’’ (Health worker).

Anticipated benefits and losses of disclosure

Pregnant women were always involved in appraising the

anticipated benefits and losses of their HIV status disclosure

to their sexual partners. All HIV-negative women anticipated

that their partners would be happy with the negative test

results, accept to go for HIV testing and be faithful once they

had disclosed to them. These anticipated benefits were major

drivers of disclosure for such women: ‘‘I told my husband

because I felt he should know that I do not have HIV, I think

it can help him to remain faithful to me and we avoid

HIV in our marriage’’ (Married, 25 years, HIV-negative).

Another woman noted that: ‘‘. . . I told my husband because

I wanted him to go and also get the test’’ (Married, 24 years,

HIV-negative).

Narratives of most HIV-positive women who had not

disclosed revealed profound fear of abandonment, violence

and accusation of bringing HIV infection into the family as

key anticipated losses, which made disclosure risky for them.

HIV-positive women feared that their husbands would

abandon them if they told them that they had HIV, which

would mean loss of support for themselves and their children

because they largely depend on their husbands as bread

winners:

. . . It is now 2 months, I have never told any one

about my HIV status, not even to my husband . . .
I fear that if I tell him, he can desert me and I don’t

want my children to suffer. Men are very difficult, he

can decide to get another woman and then leave

me to suffer alone. (Married, 30 years, HIV-positive)

The fear to lose material and financial support emerged as a

key barrier to disclosure and was related to situations where

men were sole providers and women being pregnant, which

made it difficult for them to find jobs to support themselves

in case their partners discontinued support:

I have not told my boy friend, I fear if he knows he

can stop supporting me. Where will I go with this

Table 2. Thematic presentation of pregnant women’s experiences and fears of HIV disclosure to sexual partner

Sub-themes

HIV-negative women HIV-positive women Main themes

� All disclosed

� Process was easy

� Most not disclosed

� Very difficult

� Too heavy to tell

The divergent and complex path

to disclosure

� Expected partner to test for HIV

� Partner will be faithful

� Expected partner to test for HIV

� Fear of:

� Abandonment

� Violence

� Accusation of bringing infection in family

Anticipated benefits and losses

of disclosure

� Partner said he was also HIV-negative

� No need to test

� Partner assumed HIV-negative status based

on woman’s/women’s results

� Kept quiet

� Partner tested

� Partner disclosed own HIV status

� Partner supportive

� Partner denied HIV-positive results

Partners’ reaction to disclosure

� Guidance on convincing partner to go for

HIV testing

� Needed health workers to convince male

partners to go for HIV testing

� Guidance on convincing partner to go for HIV

testing

� Needed health workers to convince male partners

to go for HIV testing

� Needed health workers to assist with disclosure

Support needed before and after

disclosure

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pregnancy? I am not working and he is the only one

who gives me money for food, rent, . . . Maybe after

giving birth and the baby grows, I will tell him we go

and test together, if he accepts the counsellor will

tell him. If he stops giving me support, the child will

have grown I will look for a job, but now with this

pregnancy no one can give me a job. (Married, aged

19 years, HIV-positive)

The fear of abandonment by male partners was more

pronounced among HIV-positive women in polygamous

marital relationships and was compounded by the need to

ensure that the care that husbands provided for the women

and their children would remain uninterrupted:

If I tell him, he may never come back to my place

and shift forever to the second wife. How will I and

my children survive? He can even send me away or

say I brought HIV yet I have been faithful to him;

I feel bad that I have HIV yet I have not been having

other men. (Married, aged 28 years, HIV-positive)

Some HIV-positive women explained that their male partners

would interpret women’s HIV-positive results to mean that

they (women) have killed their husbands:

I cannot tell my husband, he will think I have been

sleeping with other men . . . he will say I have killed

him. Before I tested, I once talked to him about

the issue of going to test for HIV and he told me that

he will never test because that is one way of

knowing and die quickly . . .. (Married, 28 years

old, HIV-positive)

The above narrative reveals that some HIV-positive women

fear that their partners might interpret the HIV-positive

status to mean promiscuity by women as a source of HIV

infection and HIV is still understood as a fatal infection.

In consonance with the above, health workers at the

ANC revealed that some HIV-positive women opted not to

disclose their HIV status for fear of being accused of having

been promiscuous and thus infecting their husbands, which

would result in the breakdown of the marriage: ‘‘We got one

woman here who tested HIV positive, when she told the

man, he told her to go away and called her a prostitute . . .

those are the things that make women fear to tell their

husband . . .’’ (Health worker).

Although all HIV-negative women believed disclosure was

good for themselves and their sexual partners, some HIV-

positive women thought not disclosing protected their

partners from worry and was thus beneficial: ‘‘I don’t have

plans of telling my boyfriend. I don’t want him to know that

I have HIV. It is better for him not to know. He will worry a

lot. May be if he goes for testing himself . . .’’ (Married, 21

years, HIV-positive).

Partner reaction to women’s disclosure of HIV status

Most HIV-negative women expected their male partners to

go for HIV testing, but most women reported that their

partners instead assumed that they were equally HIV-

negative (HIV testing by proxy):

I told him that I did not have HIV; he said that it

was good, we are both safe from HIV. I told him

the nurse had said he should go and test, he

just laughed and asked me why? Since they tested

you . . . we both don’t have HIV. (Married, 24 years,

HIV-negative)

Narratives of women also revealed that men who had more

than one wife tended to use HIV-negative results of their

wives to confirm their assumed HIV-negative status: ‘‘When

I asked him to go and test for HIV, my husband told me that

since me and my co-wife had tested HIV negative, our family

is free from HIV, we should remain faithful to each other . . .’’
(Married, 32 years, HIV-negative).

Interviews with health workers also indicated that while

they did not have any statistics about men who assume they

are HIV-negative based on their female partner results, this

practice was common: ‘‘Men think that since their women

have tested HIV negative, they are also negative and so men

see no need to go for HIV testing’’ (Health worker).

Some women repeatedly mentioned that their partners

perceived HIV testing as part of antenatal care to be meant

only for pregnant women and not the men:

Yes, I told him but he said he cannot test because he

is not a woman and he is not pregnant. He said that

since both of his two wives were HIV negative there

is no need for him to test. (Married, 24 years, HIV-

negative)

When probed, women revealed that they often gave up

trying to persuade their male partners to go for HIV testing

whenever men showed unwillingness to go for the test.

Women also assumed and hoped that they and their male

partners were really HIV-negative:

I told him that the nurse had said he should also go

and test, he said why should he? The good thing

they tested me and I am negative. Even if he has not

tested I think we do not have HIV . . .. (HIV-negative
32 years old, married)

The four HIV-positive women who had disclosed encountered

varying outcomes from their partners. One woman, with

tremendous fear, disclosed her serostatus to her partner and

she discovered that he was already receiving HIV treatment

from The AIDS Support Organisation (TASO), which is one of

the major HIV and AIDS care organizations in Uganda:

I told my husband, but with a lot of fear, he first kept

quiet and later told me we shall help each other.

He then told me that he is a member of TASO. He

advised me to join TASO to get treatment, and that

I should be strong. I had a lot of fear but God was on

my side that he was also positive . . . When he told

me at first I felt bad and I was annoyed with him for

infecting me with HIV. These men, I asked myself

why he had kept it to himself. I remembered how he

used to go to Mbale town every end of month;

I knew that is when he was picking his drugs. As a

Christian I have forgiven him . . .. (Married, 36 years

old, HIV-positive)

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The discovery by this woman after disclosure that her

partner already knew his HIV status before the woman

tested elicited anger, but the profound fear and expectation

of negative reaction from the man, together with faith in

God, helped her to cope.

The second HIV-positive woman disclosed to the partner

out of anger, but she was surprised by her husband’s

response; he became supportive and went for HIV testing:

I had to tell him because anger was killing me. We

spent some days without talking. I would find myself

crying most of the time at home. Although, I was

annoyed, my husband kept encouraging me. He also

went and tested. They found him positive . . . he

started ARVs. (Married, 43 years, HIV-positive)

For the third HIV-positive woman, aged 18 years, who

disclosed, the partner denied her HIV-positive test results

and insisted that they both did not have HIV. The fourth HIV-

positive woman explained that her religious conviction

helped her in disclosure. The partner was angry but later

tested HIV-positive and encouraged his wife to go for

treatment so that they can care for their children:

I told my husband because I wanted him also to go

and test. When I told him, he was annoyed, but

I reminded him about the many women he has so

he kept quiet . . . he went to the field and stayed

longer than usual. Later, he came and told me that

he had also tested HIV positive, he said we should

start treatment and bring up our children. After

testing positive, he realized his mistake. What

helped me to disclose was my faith in God. I didn’t

want to stay with a lie in my heart . . .. (Married,

aged 40 years, HIV-positive)

What is emerging from the four narratives is that most of the

HIV-positive women who disclosed were between 36 and 43

years, while only one was 18 years old. This in part depicts

young age as a likely barrier to disclosure among women.

In addition, two of the women who disclosed had attained

secondary education. In view of age, healthcare providers

indicated that disclosure was more difficult for young

women:

What I have seen, it is more hard for young women

to disclose to their partners especially those in their

early 20s or younger. They have many fears and they

are not sure if the relationship will continue; for the

older women it is easier, for them they have children

and they are known in the family so they cannot

easily be chased away . . .. (Health worker)

Support needed before and after disclosure

Generally, most HIV-positive and HIV-negative women ex-

pressed need for support from health workers to convince

their male partners to undergo HIV testing:

Health workers need to find a way of telling men to

test. When we tell them they say they are also

negative others say they do not have time to come

to hospital. (Married, aged 24 years, HIV-negative)

Some women explained that their partners fear to test

thinking that if they are found HIV-positive they will die

quickly:

But I once talked to him about the issue of HIV

testing and he told me that he will never test

because that is one way of knowing and die quickly.

(Married, aged 28 years, HIV-positive)

HIV-positive women also felt that they should be provided

with more counselling after HIV testing to address fears

related to living with HIV and coping with the HIV-positive

diagnosis:

Even counsellors visiting people who have recently

tested may help, but they should not go with TASO

uniform. After being told you have HIV you get many

thoughts, you fail to sleep, you don’t know where

to begin from. More help is needed. (Married, aged

36 years, HIV-positive)

Discussion
The narratives of women in this study showed that disclosure

of HIV status to sexual partners was common and easy for

pregnant women who had tested HIV-negative. However,

disclosure of HIV status to partners was frightening for most

HIV-positive women. Thus, most HIV-positive women had not

disclosed their HIV status to sexual partners mainly due to

fear of abandonment, being sent away from home, domestic

violence and accusation of bringing HIV infection into

the family. Our findings on HIV-positive women’s fear of

serostatus disclosure to their partners support what have

been documented in other sub-Sahara African settings

[7�10,13].
Non-disclosure by HIV-positive women in our study for fear

of being accused by their partners for bringing HIV infection

into the family underpins HIV prevalence as a sexually

transmitted disease, which in this case would be interpreted

to mean HIV-positive women have been promiscuous or had

other sexual partners. Having other sexual partners among

women goes against the expected gender norms in the study

setting, where, for instance, it is acceptable for a man to have

more than one partner but a taboo for women to do so.

Using the intersectionality framework [16,17,19,20], our

study adds to the understanding of how these barriers to

disclosure are compounded by the intersection of gender

and other social positions that women occupy. For instance,

the fear of abandonment among HIV-positive women was

associated with the profound fear to lose support for

the women and their children. This finding shows how

women’s economic dependency on men and women’s roles

as mothers caring for children intersect to act as a barrier

for HIV serostatus disclosure to partner. This finding is not

surprising given that within the study setting, like other parts

of Uganda, most women depend on their male partners for

their care and that of children. In eastern Uganda, 72% of the

households are headed by men, implying that men have

power and control over allocation of resources [34] and can

choose to withdraw such resources as a form of punishment.

Our findings also showed that young women and those

in polygamous relationships who tested HIV-positive found

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disclosure extremely difficult. Young women feared that

disclosure would mean an end to their relationships while

women in polygamous relationships feared that their part-

ners would abandon them and shift to co-wives, which would

lead to loss of support for the women and their children.

These findings reflect a real case in which gender intersects

and works in tandem with other social identities to shape the

lived experiences of women, in our case, non-disclosure of

HIV status to partners was influenced by women’s economic

dependency on men, women’s roles as mothers caring for

children and polygamy as a form of marital relationship.

Polygamy as a barrier to disclosure has also been documen-

ted in Ivory Cost [14]. In this regard, our findings are in

agreement with proponents of intersectionality theory who

argue that individual’s social identities profoundly influence

one’s experience of gender [16] and that the various social

stratifications like age, gender and socio-economic status

can lead to greater disadvantage or advantage [18,19]. In

our case, while all our study participants were women, their

varied identities in addition to being women worked to-

gether to hinder disclosure. The implication here is that

health workers should consider the varying social positions in

preparing and supporting women for disclosure, for instance,

young women, those in polygamous relationships and those

largely dependent on their male partners, may require more

counselling and support for disclosure and convincing men to

test for HIV.

Our finding that some HIV-positive women felt non-

disclosure helped to protect their sexual partners from stress

and worry was a surprise, but could in part be a reflection

that these women are aware of the risks of HIV disclosure to

their partners and re-echoes the need to facilitate disclosure

as a process. Some HIV-positive women reported that they

do not disclose to their partners because they (partners)

would associate HIV-positivity to quickening their death. In

this regard, the perception of HIV�related disease as fatal

seems to persist despite ARVs increasingly becoming avail-

able in Uganda [21].

Most of the HIV-positive women in our study deferred

disclosure of their HIV status to partners until after giving

birth or until their male partners would agree to go with

them for HIV counselling and testing. These findings depict

the challenges that HIV-positive women are confronted with

but also represent a threat to primary HIV prevention in case

of discordant relationships, which is a common reality in

Uganda [35,36]. Moreover, non-disclosure can prevent HIV-

positive women from adhering to PMTCT interventions, thus

increasing the risk of HIV transmission to the infants.

While all HIV-negative women in our study reported that

they had disclosed to their partners, most men did not go for

HIV testing, but instead many of them assumed that they

were HIV-negative like their female partners ‘‘testing by

proxy’’ [37]. The practice of ‘‘testing by proxy’’ among men is

a big problem indicating that disclosure support interven-

tions need to focus on women who test HIV-negative as well

as those who test HIV-positive to enable them convince their

male partners to test for HIV. Some HIV-negative women in

polygamous relationships reported that their husbands often

used HIV-negative test results of their wives as ‘‘confirmatory

tests’’ for men’s HIV-negativity. For such women, attempts to

convince their partners to go for HIV testing were more

problematic, again indicating how polygamous relationships

as a social classification kept women and their babies at risk

of HIV infection.

The practice of ‘‘testing by proxy’’ [37] by male partners of

women who tested HIV-negative is worrying, given that in

Uganda, an incidence modelling study indicated that 43% of

the new HIV infections among adults in the reproductive age

group in 2008 occurred in discordant, supposedly mono-

gamous, relationships [35]. While a recent community cohort

in Rakai District revealed that new HIV infections within

identifiable HIV-discordant couples were lower (18% in the

pre-ART and 14% in post-ART period) [38], studies in Uganda

have documented HIV sero-discodance among married or

cohabiting relationships of 5 to 65% [25,36,39]. The assump-

tion of HIV-negative status by men is a threat to the

effectiveness of the PMTCT programme and to the attain-

ment of the goal of eliminating new HIV infections in children

[6]. These findings question the effectiveness of the domi-

nant model of reaching men for HIV testing through their

female partners and provide further support for the need to

expand couple counselling and testing. Couple counselling

and testing provides opportunities to address the gender

imbalanced power relations including relieving women of the

burden of disclosure [40], and it is associated with increased

uptake of PMTCT interventions [41].

Women who tested HIV-negative generally gave up on

attempts to convince their male partners to go for HIV

testing, whenever the men refused, indicating how gender

and power relations come into play to shape the lived

experiences of women. Indeed, HIV-negative and HIV-positive

women alike expressed the need for support from health

workers to convince their male partners to go for HIV testing.

Male partner testing for HIV infection is key to preventing

new HIV infections among women [42] but remains a

challenge in many high HIV prevalent settings. Some

interventions with promising results on male partner HIV

testing include use of an invitation letter [43,44], home-

based VCT [45,46] and routine HIV counselling and testing

within the hospital setting [47].

Generally, the few HIV-positive women, who had shoul-

dered the fear of disclosure, reported positive responses

from their partners. These included male partner going for

HIV testing, men already receiving HIV treatment disclosed

their own status, as well as encouragement and support

for the woman. The positive outcomes experienced by HIV-

positive women in our study concur with what has been

revealed by other scholars [13,14]. However, the fact that

most HIV-positive women in our study encountered enor-

mous fear of negative outcome for themselves and their

children as a barrier to disclosure raises concern about the

need for health workers to identify such women and develop

appropriate support mechanisms to deal with their fears and

negative outcomes when they really occur. Health worker

mediated disclosure and collaboration with support groups

of men and women living with HIV like those under the

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AIDS Support Organization (TASO) could be of help to such

women.

Strengths and limitations

The use of in-depth qualitative methods facilitated under-

standing of women’s disclosure experiences and the implica-

tions these have on HIV prevention including PMTCT. The

inclusion of HIV-positive and HIV-negative women in our

study provided an opportunity to uncover the unique ex-

periences and support needs for each of the two groups of

women. Indeed most studies on disclosure tend to focus only

on HIV-positive women. Our findings should be interpreted in

view of the following limitations: (1) our study involved only

women, thus we did not get firsthand information from men

on their reactions and feelings about serostatus disclosure by

their female partners. Women’s reports of disclosure may

have been affected by social desirability bias. Thus, future

studies should seek to capture perspectives of both men and

women. (2) Only women who came for their subsequent ANC

visit after HIV testing were included in the study, implying a

possible selection bias. Given the stigma that still surrounds

HIV and AIDS in Uganda, identifying women who have

recently tested for HIV infection at community level,

especially those who tested HIV-positive, would have been

difficult. However, the findings of our study on women’s

fear of disclosure are in consonance with what has been

documented in other African settings [7,8,10]. In addition,

findings from women were highly consistent with those of

health workers, suggesting that the influence of selection

bias on our findings might have been minimal. Although

conducting all interviews at the health facility might have

biased respondent’s responses, there was an attempt to

minimize this by the use of qualitative interviews with room

for probing, as well as triangulation of data from interviews

with women and those of health workers. This improved the

trustworthiness of our findings.

Conclusions
Within the context of routine HIV testing as part of the

PMTCT programme, women who tested HIV-positive found

disclosure of their HIV status to their sexual partners ex-

tremely difficult. The general fear of disclosure among HIV-

positive women was influenced by the intersection of gender

norms, women’s economic dependency on men, women’s

roles as mothers caring for children, being in polygamous

relationships and young age. Pregnant HIV-negative women

and their unborn babies remained at risk of HIV infection

owing to the reluctance of their partners to go for HIV

testing. These findings depict a glaring need to strengthen

the support for both HIV-positive and HIV-negative women to

maximize opportunities for HIV prevention. Pregnant women

who test HIV-positive should be supported to disclose and

those who test HIV-negative need support to get their

partners tested. Further research is needed to shed more

light on the prevalence of ‘‘testing by proxy’’ as well as how

HIV-positive and HIV-negative women accessing antenatal

care can be better supported.

Authors’ affiliations
1Department of Paediatrics and Child Health, College of Health Sciences,

Makerere University, Kampala, Uganda; 2Centre for International Health,

University of Bergen, Bergen, Norway; 3Department of Sociology and

Anthropology, College of Humanities and Social Sciences, Makerere University,

Kampala, Uganda; 4Department of Obstetrics and Gynaecology, Mbale

Regional Referral Hospital, Mbale, Uganda

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

JR conceived the study. JR, SN, JKT, TT, & HKH participated in the design of the

study. JR participated in data collection. JR, RB and HKH participated in data

analysis. JR wrote the initial draft of the manuscript. All authors (JR, SN, RB,

JKT, TT, & HKH) participated in the interpretation, revision of manuscript and

approved the final manuscript.

Abbreviations

AIDS, acquired immune deficiency syndrome; ANC, antenatal clinic; ART,

antiretroviral therapy; ARVs, antiretroviral drugs; CDC, Centers for Disease

Control and Prevention, USA; HIV, human immune-deficiency virus; IDC,

infectious diseases clinic; JCRC, Joint Clinic Research Centre; MTCT, mother-to-

child transmission; NVP, nevirapine; PMTCT, prevention of mother-to-child

transmission of HIV; RCT, routine HIV counselling and testing; TASO, The AIDS

Support Organisation; UAC, Uganda AIDS Commission; VCT, voluntary HIV

counselling and testing.

Acknowledgements

The study was funded by the Norwegian Programme for Development,

Research and Education (NUFU); grant number NUFU PRO-2007/10119, a

collaborative project between the Department of Paediatrics and Child Health,

Makerere University, and the Centre for International Health, University of

Bergen, Norway. We thank our research assistants Janepher Wabulyu, Emily

Wetaka, Racheal Namono and all the study participants. We are grateful to the

management and staff of Mbale Regional Referral Hospital for the valuable

support that they rendered to us during the data collection phase of the study.

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http://www.jiasociety.org/index.php/jias/article/view/17429
http://dx.doi.org/10.7448/IAS.15.2.17429