Prepare this assignment according to the guidelines found in the APA Style Guide

ORIGINAL PAPER

The ‘Fears’ of Disclosing HIV Status to Sexual Partners: A Mixed Methods Study in a Counseling Setting in Ghana

D. Obiri-Yeboah • D. Amoako-Sakyi •

I. Baidoo • A. Adu-Oppong • T. Rheinländer

Published online: 26 February 2015

� Springer Science+Business Media New York 2015

Abstract Encouraging disclosure within a trusting and

supportive environment is imperative in dealing with HIV/

AIDS related stigma. However, disclosure rates and the

factors that influence it are vaguely understood in African

societies. This study aimed at determining the disclosure

rate and factors that influence disclosure in Cape Coast,

Ghana. In-depth interviews of 15 peer educators and a

survey of 510 PLHIV were used in a mixed methods study

design. Majority of the study participants (78.6 %) had

disclosed their HIV positive status to their sexual partners.

Although peer educators in this study portrayed the overall

outcome of disclosure to be negative, 84.0 % of disclosers

were accepted by their partners without negative conse-

quences after disclosure. This study suggests that the

existing support services ill prepares newly diagnosed HIV

positive clients and hampers disclosure initiatives. Pro-

viding comprehensive support services and re-training peer

educators may be crucial in creating a safe disclosure en-

vironment in Ghana.

Keywords HIV � Disclosure � Sexual partners � Ghana

Introduction

While the overall global incidence of HIV seem to have

stabilized in recent years, the incidence of HIV among

married or cohabiting heterosexual couples has remained

high in many parts of Africa [1–3]. The estimated adult

national HIV prevalence in Ghana was 1.37 % in 2012

with an estimated 235,982 persons living with HIV and

AIDS. Among adults, 7,139 new infections are estimated to

have occurred in Ghana in 2012 [4]. A central factor in-

fluencing the incidence of HIV among married and co-

habiting couples mentioned in studies in the African setting

is HIV disclosure status, defined as the readiness of people

living with HIV (PLHIV) to inform their sexual partners of

their HIV positive status.

A study in Ghana showed that the issue of disclosure

within a trusting and supportive environment may be an

important strategy in dealing with AIDS related stigma [5].

In another study in Ghana, the sexual risk behavior of

adults living with HIV was found to be affected by whether

they had disclosed to their sexual partners or not [6]. In-

creasingly, disclosure of HIV status to sexual partners by

PLHIV is being recognized as a crucial part of HIV pre-

vention. The benefits of disclosure are several. First, the

infected partner will be able to adhere to schedules given

for clinical care and antiretroviral therapy (ART) with

This article is about the issues of disclosure of positive HIV status to

sexual partners. This is discussed in the context of the Ghanaian

socio-cultural setting and the issues of navigating intimate

relationships by people living with HIV. The discussion helps reveal

possible strategies to help made disclosure of HIV positive status to

sexual partners more likely to occur in a safe manner and thus lead to

the potential benefits stated in literature.

D. Obiri-Yeboah (&) � D. Amoako-Sakyi Department of Microbiology, School of Medical Sciences,

University of Cape Coast, PMB, Cape Coast, Ghana

e-mail: [email protected]

I. Baidoo

ART Center, Cape Coast Teaching Hospital,

P.O. Box CT 1363, Cape Coast, Ghana

A. Adu-Oppong

Department of Community Medicine, School of Medical

Sciences, University of Cape Coast, Cape Coast, Ghana

T. Rheinländer

Department of Public Health, University of Copenhagen,

Copenhagen, Denmark

123

AIDS Behav (2016) 20:126–136

DOI 10.1007/s10461-015-1022-1

support from the partner as shown in studies in Uganda,

Zambia and China [7–9]. Also, the infected partner can

better deal with the initial confusion and despair with the

emotional and practical support received from the partner

as demonstrated in studies from San Francisco, and Uganda

[10, 11]. In situations where discordant couples decide to

have a child, they can be supported to achieve a pregnancy

with reduced risk to the uninfected partner if disclosure of

the positive status has occurred [12]. In addition, if found

to be infected, the partner can know his or her HIV status in

the early asymptomatic phase, which is a strong correlate

for slow disease progression and better prognosis compared

with people diagnosed in the symptomatic phase. This has

been shown in studies across diverse settings such as

Nigeria, South Korea and Georgia [13–15]. Finally, pre-

vention of mother to child transmission (PMTCT) of HIV

also has a better chance of succeeding when partners dis-

close their HIV status. Many studies in developing African

countries including Ghana have indicated that when men

are aware of the status of their HIV positive pregnant

women, they are often supportive and encourage adherence

to ART and other PMTCT interventions [16–19]. However

disclosing HIV status to an intimate partner, presents with

many moral, emotional and relational challenges. Fear of

domestic violence, economic and emotional repercussions

from partners etc. have been documented in studies in

various settings including South Africa and Nigeria [20–

22].

The policy on disclosure in Ghana requires that all

newly diagnosed clients receive counseling on disclosure

and partner notification. The clients are encouraged and

allowed to disclose either by themselves at home or in the

presence of the counselor to their sexual partners. The

policy does not allow counselors to disclose a client’s

HIV status to partner(s) without consent from the positive

client. Hence, counselors need to be better informed on

the factors that influence client’s willingness to disclose

their HIV status. However, literature on the rate of dis-

closure to sexual partners, disclosure outcomes and fac-

tors influencing disclosure in the Ghanaian socio-cultural

context are scarce. An important first-step in encouraging

disclosure is to establish the disclosure rate in a Ghanaian

setting and adequately understand what informs the de-

cision to disclose or not and the implications this can have

on disclosure support initiatives in Ghana. This study

therefore aimed at determining the disclosure rate and

factors that influence disclosure in Cape Coast, Ghana.

This is done in order to suggest ways to help HIV positive

clients to disclose their HIV status in safe ways to ulti-

mately improve their social, reproductive and health

prospects. Findings from this study may provide fresh

insights on how HIV positive clients can be counseled to

increase disclosure rates in Ghana. Increased disclosure

rates may in turn improve their prognosis, social and re-

productive health.

Methods

This study was a mixed method study among HIV positive

clients receiving care in the Cape Coast Teaching Hospital

(CCTH) in the Cape Coast Metropolis of Ghana. This facility

has a well-established HIV clinic with about 3,000 registered

clients. In 2011 the Central region recorded the highest HIV

prevalence of 4.7 % and the Cape Coast metropolis had the

highest HIV prevalence across the country of 9.6 %. This

was a significant rise from the 2010 regional prevalence of

1.7 and 2.2 % for Cape Coast Metropolis and these influ-

enced the choice of this as an important study site.

The proposal for this study was first reviewed by the

ethical review committee of the School of Medical Sci-

ences of the University of Cape Coast, Ghana. Final ethical

approval was obtained from the institutional review board

of the University of Cape Coast, Ghana. Semi- structured

in-depth interviews were conducted with 15 purposively

selected key-informants (Ten females, five males, aged

between 28 and 48 years). Initially five peer educators at

the ART center who are themselves leaders in various as-

sociations supporting PLHIV in the region were recruited

and interviewed. Through snowball sampling [23] ten ad-

ditional leaders were identified and recruited from the

various associations of PLHIV across the region. These

participants, by their positions had in-depth knowledge of

the situation of a larger number of PLHIV and hence could

offer an insider perspective on the challenges of disclosure

to sexual partners. The interviews were of a narrative na-

ture [24, 25] with clients allowed to respond to four open

ended questions and sharing their stories and experiences:

1. From your own experience and that of members of

your association, what can you tell me about the issue

of disclosure of HIV positive status to sexual partners?

2. Tellmesome ofthestoriesyouhearabouttheexperiences

of people when they disclose their HIV status

3. Do you think it is good to tell your sexual partner about

your HIV status?

4. What do you think could be done to make it possible

for people to disclose to their sexual partners?

Each interview lasted between 45 and 60 min and was

conducted in the mother tongue of Fante, or English as pre-

ferred by the informants. Written informed consent was ob-

tained from all respondents before the interviews were

conducted. The responses were transcribed ad verbatim into

English and analyzed using a thematic approach [24, 26] in

which text was thoroughly read through several times, coded

and organized into main themes. The themes which are

AIDS Behav (2016) 20:126–136 127

123

presented in this paper include the perceptions of real or

imagined ‘fears’ associated with disclosure strategies, expe-

riences with managing intimate relationships when disclosing

and health care implications of disclosure and non-disclosure.

All the interviews were conducted by the first author, a

female doctor who has an extensive knowledge in supporting

PLHIV and has been actively engaged in diagnosis and

treatment of HIV clients in the region and the specific clinic

since 2006. The authorknewall 15key-informants prior tothe

interviews and could therefore relate to their experiences and

build rapport for the interviewees to express themselves

freely. Based on the findings from interviews, a structured

questionnaire in English was developed and used to gather

information from a total of 510 respondents on factors influ-

encing disclosure. The maximum sample size required at

95 % confidence interval and 50 % response distribution and

a population size of 20,000 was 377. Adjusting for non-re-

sponse or incomplete responses a total of 510 clients were

surveyed. Respondents were systematically recruited among

PLHIV visiting the clinic for their routine management on

each clinic day between November 2012 and March 2013.

Inclusion criteria were: being HIV positive, being 18 years or

above and being sexually active. After obtaining written in-

formed consent, respondents who spoke English answered the

questionnaire themselves. Those who could not read English

wereassistedbythreeresearchassistants,whohadallreceived

training by the first author in confidentially, explaining and

obtaining written informed consent, administering the ques-

tionnaire in the local language of Fante and managing the data

collected. The themes of the questionnaire included: socio-

demographic characteristics, how and why they disclosed or

not disclose their HIV status to sexual partner(s), the effect

disclosure or lack of it on their lives and their intimate rela-

tionships, and their views on the current disclosure policy in

Ghana and suggestions to help PLHIV disclosure.

Questionnaire data was entered into STATA statistical

software without patient identifiers and analyzed (Release10;

Stata Corporation, College Station, TX, USA). Descriptive

analyses were conducted to generate frequencies and per-

centages. Person Chi square test was done for some catego-

rical data to determine statistical significance among groups.

A p value of B0.05 was deemed significant. Univariate and

multivariate analysis were conducted to test for associations

between demographic characteristics and disclosure.

Results

Demographic Characteristic of Study Participants

and Disclosure Status

Table 1 shows the demographic characteristics of the par-

ticipants, the circumstance of HIV diagnosis and partners’

HIV status. The mean age of the 510 total participants from

the quantitative data was 41.26 years with majority being

women (82.5 %), and the majority belonging to the

Christian faith (92.1 %). Most participants were either

living together with a partner in a legal marriage (49.8 %)

or cohabiting with a sexual partner without being legally

married (30.2 %). The rest lived alone and reported having

occasional sexual partners.

Most respondents reported being diagnosed with HIV as

part of a health provider initiated testing at a health facility

due to symptoms suggestive of HIV/AIDS (n = 383,

75.1 %). This was followed by women who were tested at

antenatal clinics as part of routine HIV testing for pregnant

women (n = 65, 12.7 %).

Whiles 78.6 % (n = 401) of respondents had disclosed

their HIV positive status to their sexual partners, only 48.2 %

(n = 246) of them knew of the HIV status of their sexual

partners. Twenty-three percent of respondents did not know

if their partners had tested for HIV and 22.4 % reported that

their partners had out rightly refused to be tested.

Factors Associated with Disclosure and Disclosure

Process

Out of 510 respondents, 78.6 % (n = 401) had disclosed their

HIV status to partners at the time of the survey, while 21.4 %

(n = 109) had still not disclosed. Table 2 shows the asso-

ciations between demographic and socio-economic factors

with the odds of disclosing HIV status to partners. The results

shows that those who conceal their HIV status from partners

are significantly younger (median age = 38.11 years.) than

those who disclose (median age = 42.11 years)

(p \ 0.0001). Those living alone with occasional sexual partners were less likely to disclose their HIV status compared

to those who are married (p \ 0.05; OR = 0.52; CI (0.30–0.92)). Interestingly, cohabiting individuals were more

likely to disclose their HIV status to partners compared to

married (p\ 0.0001; OR 2.39 (1.34–4.35)). The results also revealed some important challenges

relating to disclosure and relationships: those who had not

disclosed their own HIV status to their partners had a

higher likelihood of having partners who refused to test

(p \ 0.0001 OR = 0.01 CI (0.00–0.05)). In addition, the odds of having their partners disclose their HIV status was

greatly reduced for those who had not disclosed themselves

(p \ 0.0001 OR = 0.01 CI (0.00–0.05)). These findings point towards some crucial barriers for disclosure related to

relationship dynamics, which will be further investigated in

the qualitative data.

Next stage of the analysis concentrated on investigating

the process of disclosure including the motivating factors

leading to a decision to disclose and the responses of sexual

partners (See Table 3). In total, 84.0 % (n = 337) of

128 AIDS Behav (2016) 20:126–136

123

disclosers experienced a positive outcome as their partners

accepted their HIV test results without any negative reac-

tions while 16.0 % (n = 64) of disclosers reported a

negative reaction. As many as 82 % (n = 329) disclosed

within the first week after diagnosis. When asked what

influenced them to disclose, the majority said it was per-

sonal meaning they disclosed on their own initiative be-

cause they felt it was important to share the results with

their sexual partners (n = 210. 52.4 %). This was followed

by those who decided to disclose mainly due to the coun-

seling they received on disclosure and partner notification

by the health personnel (n = 172, 42.9 %).

The preferred place for disclosure was at home alone

with the partner (n = 206, 51.4 %) followed by disclosing

in the presence of a counselor in the health facility

(n = 181, 45.1 %). Most participants, 84.4 % (n = 339)

did not regret their decision to disclose irrespective of the

outcome and 85.5 % (n = 343) found their partners to be

supportive of their clinical care.

A separate analysis was conducted for those 109 re-

spondents who had not disclosed their HIV status yet, to

identify reasons for and the effects of not disclosing (see

Table 4). The main reason given for not disclosing was the

fear that disclosure would lead to the partner ending the

Table 1 General characteristics of study population

Characteristics N = 510 (%) [range]

Mean age (years) 40 (20–75)

Sex

Male 89 (17.5)

Female 421 (82.5)

Disclosure status

Disclosed 401 (78.6)

Undisclosed 109 (21.4)

Level of education

No education 143 (28.0)

Primary school 79 (15.5)

Junior secondary school 228 (44.7)

Secondary and above 60 (11.8)

Religion

Christian 470 (92.1)

Moslem 32 (6.3)

Traditional 8 (1.6)

Relationship type

Single (with occasional sexual partners) 16 (3.1)

Married 254 (49.8)

Cohabiting (lives with a partner but not legally married) 154 (30.2)

Divorced (with occasional sexual partners) 47 (9.2)

Widowed (with occasional sexual partners) 39 (7.6)

Employment status

Employed 424 (83.1)

Unemployed 86 (16.9)

HIV diagnosis

Health provider initiated test 383 (75.1)

Client initiated walk-in test in a health facility 44 (8.6)

During a community testing and counseling campaign 18 (3.5)

Routine testing and counseling at antenatal clinic 65 (12.7)

Partner’s HIV status

Positive 115 (22.5)

Negative 131 (25.7)

I do not know if my partner tested 119 (23.3)

Partner tested but has not disclosed to me 31 (6.1)

Partner refuses to be tested 114 (22.4)

AIDS Behav (2016) 20:126–136 129

123

relationship (n = 39, 35.8 %). Also, 21.1 % feared that

their partners would make their HIV positive status public

while 13.8 % said they had not disclosed because they

were not counseled to do so by the health personnel. For

11.9 % it was the fear of abuse, be it physical or verbal by

their partners that had kept them from disclosing. A total of

43.1 % (n = 47) reported that non-disclosure led to serious

problems with negotiating condom use resulting in un-

protected sex with partners on occasions. Regardless of

these consequences of non-disclosure, it is worrying to see

that 48.8 % (n = 53) of non-disclosed respondents still felt

that they were still not ready to disclose their HIV status to

their partners.

The ‘Fears’ Associated with Disclosure; Real

or Imagined?

Analysis of qualitative data offered further insights and

provided context for the quantitative data represented in

Table 3. The key informant interviews revealed lots of

sentiments and fears about negative reactions and effects

on relationships associated with disclosure. A collective

narrative of emotional distress seemed to be shared and

generally accepted among peer educators who verbalized

many negative stories with dreadful outcomes for the dis-

closers during interviews: ‘‘I know many at the beginning

who were sacked, many could not get proper food to eat

Table 2 Factors associated with disclosure or non-disclosure

Factor Disclosure status P value OR (95 % CI)

Disclosed [N (%)] Not disclosed (%)

Age: median 42.11 38.11 \0.0001 Sex

Male (ref) 76 (19) 13 (11.9) –

Female 325 (81) 96 (88.1) 0.815 1.09 (0.54–2.20)

Marital status

Married (ref) 225 (56.1) 29 (26.6)

Co-habiting 97 (24.2) 57 (52.3) 0.004 2.39 (1.31–4.35)

Lives alone with occasional sexual partners 79 (19.7) 23 (21.1) 0.024 0.52 (0.30–0.92)

Educational level

No education (ref) 112 (27.9) 31 (28.4) –

Primary 62 (15.5) 17 (15.6) 0.611 1.20 (0.59–2.43)

J.S.S 182 (45.4) 46 (42.2) 0.511 1.20 (0.61–2.09)

Secondary and above 45 (11.2) 15 (13.8) 0.581 0.80 (0.37–1.74)

Employment status

Employed (ref) 338 (84.3) 86 (78.9) 0.253 0.72 (0.40–1.27)

Unemployed 63 (15.7) 23 (21.1)

Religion

Christian (ref) 371 (92.5) 99 (91.0) –

Moslem 24 (6.0) 8 (7.3) 0.787 1.25 (0.25–6.28)

Traditional 6 (1.5) 2 (1.8) 1.000 1.00 (0.17–5.96)

HIV diagnosis

Health provider initiated (ref) 297 (74.1) 86 (78.9) 0.360

Client initiated walk-in testing in a health facility 38 (9.5) 6 (5.5) 0.232 0.38 (0.08–1.85)

Community testing and counseling Campaign 16 (4.0) 2 (1.8) 0.788 0.79 (0.14–4.35)

Routine HIV testing and counseling at ANC 50 (12.5) 15 (13.8) 0.269 0.43 (0.10–1.91)

Partner’s HIV status

Positive (ref) 113 (28.7) 2 (1.8) –

Negative 125 (31.2) 6 (5.5) 0.972 0.97 (0.13–6.97)

Do not know if partner has tested 117 (29.2) 2 (1.8) 0.212 0.36 (0.07–1.80)

Partner has tested but has not disclosed to me 11 (2.7) 20 (18.3) \0.0001 0.01 (0.00–0.05) Partner refuses to be tested 35 (8.7) 79 (72.5) \0.0001 0.01 (0.00–0.05)

ANC antenatal clinic

130 AIDS Behav (2016) 20:126–136

123

and many died. It was sad. I can think of many people at

the time that died and I think not from HIV but hunger - all

because they told (about their HIV status)….’’ (Female, 48 years, not disclosed).

It is worth noting that of the 15 peer educators inter-

viewed, 10 had disclosed and of these 4 personally expe-

rienced negative reactions mainly in the form of emotional

and verbal abuse. One person had the relationship ending

as a direct result of disclosing. None of the interviewees

were physically abused and yet, all 15 of them narrated

many stories of negative consequences of disclosure to

sexual partners. It thus appeared as if among the leaders

and peer educators interviewed, there was a persistent

construction of the idea that disclosure was very likely to

lead to a negative consequence. One male peer educator

who had disclosed his HIV status said: ‘‘Every day they are

talking (at the association meetings) about what happened

to them when they told their husbands or boyfriends’’

(Male, 35 years, Disclosed).A women who had not dis-

closed added: ‘‘Some of the women (at the meeting) say

they were insulted and some were even beaten….’’ (Female 43, not disclosed).

Among the key informants, there also seem to be a

perception that gender was influencing decisions to dis-

close or not. Thus, male and female informants, disclosers

and non-disclosers alike, said that disclosure was more

complex for women. A woman who had disclosed said:

‘‘This is very difficult especially for us women. We are

always worried about what the men will do to us’’ (Female,

45 years, Disclosed). Men seemed to agree with the idea

that women have more to fear when disclosing. A married

man who had disclosed and still lived with his wife said:

‘‘In fact the women are suffering more than the men. When

the men go home (and disclose to their partners) their

women don’t fight them too much’’ (Male, 46 years,

Disclosed).

Strategies and Procedures for Disclosing

With these fears in mind, many seemed to think that the

place and procedure of disclosure was key to the outcome

of disclosure. Both disclosures and non-disclosures offered

personal suggestions on locations and strategies to disclose

in ways that would address some of these feared outcomes.

Suggestions mainly referred to using health facilities as

settings and peer counselors as semi-professional inter-

mediates in the disclosure process. One male who had been

through disclosure process explained: ‘‘I think it is better

when the nurse is there and we tell at the hospital than

those who do it alone in the house’’ (Male, 44 years,

Married, Disclosed in health facility, Partner HIV nega-

tive, still living together). A peer educator further stated: ‘‘I

think you should use those of us who are leaders in our

associations (HIV support networks) to find those who have

not told their partners and let’s help them and see how it

can be done without causing so much trouble’’ (Male,

48 years, Married, Disclosed at home alone to partner.

Partner also HIV positive, still together).

Concrete strategies as to how to convey the feared

message were also needed: ‘‘I think some people get into

trouble when they tell because of how they say it. Some go

and say (to their partner) that you have given me AIDS so

come with me (to the hospital), and then the partner gets

very angry especially the men. So I think if we bring them

(to the health facility), you (the health staff) should do the

telling. If we want to tell them at home then teach us better

how to tell them’’ (Female, 64 years, Widowed, Disclosed

at home to partner and lead to separation).

Table 3 Disclosure process and outcome

Variables (total respondents = 401) N (%)

How long did it take you to disclose?

\1 week 329 (82.0) 1–3 weeks 32 (8.0)

1–6 months 26 (6.5)

7–12 months 8 (2.0)

[1 year 6 (1.5) Who or what influenced your decision to disclose?

I did it on my own initiative 210 (52.4)

The counselor 172 (42.9)

Advice from another positive client 5 (1.2)

My partner insisted on knowing my results 14 (3.5)

Where and how was disclosure done

At home alone with my partner 206 (51.4)

At the hospital in presence of counselor 181 (45.1)

My partner accidentally found out 1 (0.2)

By phone 7 (1.7)

Asked a trusted friend/relative to disclose 6 (1.5)

Response of partner after disclosure

Accepted it without a problem 337 (84.0)

Became verbally abusive 28 (7.0)

Became physically abusive 7 (1.7)

It led to divorce/separation 28 (7.0)

Disclosed to other people 1 (0.2)

Partners attitude towards your clinical care

Supportive 343 (85.5)

Not supportive 58 (14.5)

In hindsight, would you disclose your HIV status?

Yes 339 (84.4)

No 46 (11.6)

Not sure 16 (4)

AIDS Behav (2016) 20:126–136 131

123

Disclosing or not Disclosing; a Question of Managing

Intimate Relationships

The quantitative data identified several serious problems in

terms of knowing partner’s HIV status. Among those who

had disclosed 40.6 % (n = 163) did not have any idea of

their partners status either because the partner refused to

test, had tested but did not disclose or they did not know if

the partner had tested. Among those who had not disclosed,

an overwhelming majority, 92.6 % (n = 101) had no idea

of their partners HIV status. Many interview participants

made several references to the fact that both partners

knowing their status is key to navigating intimate relations

after HIV diagnosis. A participant who disclosed and still

live with an HIV positive partner said: ‘‘If you are the one

being positive, then you know how to protect the negative

one so she/he does not get it’’ (Male 46, Married, Dis-

closed, Partner also HIV positive). Informants who had

disclosed and were still living with their partners added that

disclosure was also necessary to maintain trust and sexual

activity in the relationship.

Another challenge identified in the survey in dealing

with an intimate relationship with or without disclosure

was the issue of condom use (Table 4). The qualitative data

collaborated the finding that negotiating condom use was a

major challenge particularly for non-disclosing females. A

married woman who had not disclosed and lived with her

husband explained the challenge: ‘‘All the time they (health

personnel) talk to us (people living with HIV) about con-

doms and sometimes you people (health staff) even give

some to us free (condoms) but it is very hard to use it if the

man does not agree. You, the woman, cannot force it….’’

(Female 43, Not disclosed, Married).Negotiating condom

use and the issue of having children while HIV positive

were indicated as two distinct problems in the question-

naire, but the qualitative data showed that these issues are

often interlinked. A peer educator expressed a similar

concern: ‘‘This is why (they cannot say no to having un-

protected sex) many of our women (HIV positive) are also

getting pregnant because they don’t know how to make

their men use condom all the time….’’ (Male 46, Married, Disclosed, Partner also HIV positive). A married male

participant explained how this challenge gets more com-

plex due to the strong social norms in Ghana which expect

women to agree with their husband’s demand for children:

‘‘And if the woman uses any family planning the man will

get very angry if he wants more children. Here (in Ghana)

the woman cannot just decide not to give birth. So for a

woman who does not say (why she doesn’t want to have

sex), it will be a big fight all the time in the house’’ (Male,

48 years, Married, Disclosed. Partner is also HIV

positive).

Impact on Health and Health Seeking Behavior

Many participants interviewed, particularly women, felt

that disclosure and non-disclosure had links with issues of

mental and emotional health as well as health seeking

behavior of the HIV positive person. A married participant

who had not disclosed explained it this way: ‘‘I think when

you are told you have HIV; it is so heavy for you to carry

alone. I think if you don’t tell anyone you will always feel

sad and guilty’’ (Female 43, Disclosed, Married). To an-

other peer educator, there was also a link to religious

Table 4 Reasons and effects of non-disclosure

Total respondents = 109 N, (%)

Reasons for non-disclosure

I was not counseled to do so 15 (13.8)

Fear of abuse (physical or verbal) 13 (11.9)

Fear of the relationship ending 39 (35.8)

Fear of him/her making it public 23 (21.1)

I plan to disclose at a later date 19 (17.4)

Effect of non-disclosure

I cannot insist on using condoms 47 (43.1)

I have to hide to attend clinic 31 (28.4)

I have to hide my medication 22 (20.2)

My partner wants a child and I can’t explain my reluctance to have a child 7 (6.4)

I have no problems 2 (1.8)

Current position on non-disclosure

I am ready to disclose 24 (22.0)

I am still not ready to disclose 53 (48.6)

My partner has not earned the right to know 16 (14.7)

I do not currently have a sexual partner 16 (14.7)

132 AIDS Behav (2016) 20:126–136

123

believes: ‘‘It is good to make peace with Allah and I believe

telling (about the diagnosis) will help to make that peace.

Allah will not forgive you if you do not’’ (Female 40,

Married, Disclosed, Partner HIV negative). A woman who

has lived with the diagnosis of HIV since 2006 shared this

experience: ‘‘With this disease, you need someone to talk

to. If not, you will be so sad. Sometimes you even think

death is better, but if you have someone, you may feel a

little better.’’ (Female, 64 years, Widowed, Disclosed).

The effects of non-disclosure on health seeking behavior

was highlighted in the quantitative data with 28.4 %

(n = 31) and 20.2 % (n = 22) of non-disclosers having to

hide medicines and clinic visits respectively (Table 4). The

narratives of the informants furthermore showed how se-

rious non-disclosure was for adherence to HIV treatment.

A male non-disclosed informant explained: ‘‘I hide my

medicine because she (the wife) can read, so if she sees it I

am sure she will know what it is. So when she is there and it

is time for me to take the drug then I am in trouble. So

sometimes I have to get her money and send her to buy

maybe a drink or something she will like, then I take it

when she goes. All this waste of money, hmm.’’ (Male,

28 years, not disclosed, cohabiting). A woman added:

‘‘Many of us (HIV positive) are hiding to come to the

clinic’’ (Female, 48 years, not disclosed). In contrast, those

informants who did not conceal their HIV status and

treatment, experienced that they could get support, practi-

cal as well as emotional, when attending to treatment. One

man who had disclosed to his partner said: ‘‘Look at me, I

come here freely, I don’t hide. At the beginning she was

bringing me because I was sick and could not travel alone.

I don’t hide my medicine and even if I am forgetting be-

cause I am doing something, she will bring it’’ (Male,

44 years, Married, Disclosed, partner HIV negative).

Discussions

Strengths and Limitations

The main strenght of this study is the mixed methods ap-

proach which included both survey data and in-depth

qualitative interview data [27–29].The qualitative approach

providedrich context and meaning behind the quantities

obtainedin the survey and was also instrumental in the first

phase of the study to design a culturally adjusted and

comprehensive disclosure questionaire informed by ‘ex-

pert-patients’ who had a deep insight into the disclosure

dilemmas of many PLHIV in the region. This study relied

on self-reported disclosure status and therefore liable to

social desirability bias, a type of response bias. This

limitation was mitigated by phrasing questions to be as

neutral as possible. In instances where respondents were

not literate and had to be assisted in completing the ques-

tionnaire, trained research assistants posed questions in a

neutral manner with a neutral demeanor. In addition, re-

spondents were desensitized to social desirability bias prior

to obtaining informed consent by assuring them that there

was no right or wrong answers.

Also the lack of insight into the perspective of coun-

sellors and other related heath professionals involved in the

disclosure process is a limitation.Their narratives would

have added more insight into the disclosure process and

helped identify specific potential health facility interven-

tions to address the issues from both the part of health

professionals and the clients. This study did not include

narratives of sexual partners of HIV positive clients who

disclosed. Hence we may not have identified all factors

influencing disclosure outcomes. The study design is also

liable to recall bias. For the quantitative study, sampling

was not stratefied by gender, hence analysis may not sta-

tistically represent gender differences.

Disclosure Rates and Disclosure Counseling

Disclosure and sexual partner notification is promoted as

an important HIV prevention strategy globally. Despite the

challenges associated with disclosure, many studies in

Africa including Cameroun, Nigeria, Malawi and Zim-

babwe have reported high disclosure rates around 80 %

[22, 30–32]. This study also found a similar disclosure rate

of 78.6 %.The high disclosure rate notwithstanding, dis-

closing is not without complicated emotional and relational

consequences.

The data reveals that the preferred place for disclosure

was alone with the partners at home or at the clinics in the

presence of the counselor. The qualitative data further

shows that there is a need for counselors to support clients

on how to disclose as this can reduce some of the negative

reactions of partners and families. Similar studies on dis-

closure have also concluded that disclosing is complex and

needs supportive counseling [33] including counseling on

when it is best and safe to disclose [11]. These findings

have implication for counselors as well as clients: while

existing counseling guidelines do include recommenda-

tions to clients and counselors on when and where to dis-

close, this could be further improved by including more

active ‘disclosure role playing’ in the counseling room.

This could enable clients to practice how to handle possible

reactions of partners supported by counselors [34].

Imagined Fears and Reconstructing Narratives

of Distress

This study revealed some important contrasts between the

high positive disclosure outcomes and a strong negative

AIDS Behav (2016) 20:126–136 133

123

constructed narrative of disclosure presented by peer

educators. The danger of this discrepancy is that, if peer

educators are the main source of information on disclosure

to newly diagnosed members, the ‘fears’ might overshad-

ow the many positive effects of disclosure and lead to

postponement or refusal to disclose.

Medley et al. in their review of articles on disclosure

among women in developing countries found that many of

these articles reported that a higher proportion of study

participants had positive outcomes following disclosure of

HIV positive status [17]. Seid et al. in a much recent study

conducted in Ethiopia also reported that whiles many non-

disclosers said they had not disclosed to their sexual part-

ners due to fear of abuse, relationship ending etc. 74.5 % of

those who disclosed actually were accepted by their sexual

partners [35]. This raises the suspicion that narratives of

adverse outcomes of disclosing are exaggerated and per-

ceived rather than real. It is imperative that counsellors

help peer educators to reconstruct their narratives of dis-

tress to make it more balance, objective and evidence-

based. Peer educators also need to be informed about the

effect of their narratives of distress including the unin-

tended negative effects of preventing clients from dis-

closing. It may be helpful to retrain peer educators to truly

and effectively advocate for disclosure to sexual partners,

thus supporting the national prevention strategy.

Security in Relationships

This study found that those living alone with occasional

sexual partners were less likely to disclose their HIV status

compared to those who are married. Many studies have

commented on the role of the type of relationship on dis-

closure. In their study on disclosure Patel et al. reported that

women who disclosed to current husband/partner were

more often currently married than women who did not

disclose (78 % vs. 17 %; p \ 0.0001) [32]. But the qualitative data from this study shows that this issue is more

complex and might also be related to gender norms in re-

lationships. Similar findings are reported from other places

showing that the decision to disclose or not might be more

related to how secure particularly women feel in the rela-

tionship than being legally married or not [20, 36]. Moses

and Tomlinson in their qualitative study on disclosure

among pregnant women also comment on the complexity of

the issue. They found that the narrative on disclosure was a

fluid one among these women and is affected by many

considerations than marital status [37]. This implies that all

newly diagnosed HIV clients must be supported equally in

dealing with this issue without assuming that being married

or not offered an easy way. The implication of the high

proportion of sera discordance among partners found in this

study is that disclosure is key to partner testing in the

Ghanaian setting and must be supported at the national level

as a key strategy to help reduce the HIV transmission rate

among couples whether married or not.

Reproductive Health and Disclosure

Another area where disclosure presented a challenge was in

the area of sexual and reproductive health decisions. This

study revealed that these issues are more challenging for

women than men, in cultural settings in Africa including

Ghana where women traditionally are not expected to be

actively involved in decisions such as condom usage and

having children [38–40]. Pettifor et al. in their study in

South Africa reported on the effect of this power dynamics

on the use of condoms by HIV positive women and the link

to HIV transmission. Other studies have thus made the

point that addressing issues of women’s reproductive rights

in a country will also contribute to dealing with the chal-

lenge of women being active in their reproductive health

decisions [21].This implies that disclosure counseling must

expand services to female clients to also include contra-

ceptive negotiation skills and education of sexual partners

[30]. Couple therapy and the involvement of male partners

in particular in the counseling process has been highlighted

as a specific strategy in reducing particularly mother to

child transmission of HIV (MTCT) [1, 16, 41]. This could

potentially be a fruitful strategy in Ghana to empower

women to discuss their reproductive rights including the

negotiation of contraceptives with their partners.

Conclusions

This study applied a mixed method appoach to investigate

disclosure rates, the disclosure process, and the experiences

of managing intimate relationships during disclosure coun-

selling in an urban regional hospital setting in Ghana. The

study found high rates of disclosure and identified home-

based or counsellor assisted disclosure as the preferred

strategies for safe disclosure. But the study also identified

important underlying challenges for disclosure including a

strong negative narrative of the ‘fears of disclosure’ held by

peer educators, the insecurities in relationsships, gender

norms, and a need for more support for disclosure process.

The study recommends that to strenghten disclosure iniatives

counsellors need to be equiped with the necessary skills with

emphasis on supporting newly diagnosed HIV positive cli-

ents, with special focus on counselling women on the dis-

closure process and dealing with partners possible reactions.

Couples must be counseled effectively on how to navigate

insecurities in relationsships whiles living with HIV. In ad-

dition, it is highly recommended that peer educators among

PLHIV be helped to change their negative narrative about

134 AIDS Behav (2016) 20:126–136

123

disclosure outcomes so they can have a positive impact on

their peers and support a safe disclosure process. Clearly,

counsellors have more to do in the Ghanaian setting to

strengthen and support disclosure efforts hence the funders

and administrative bodies governing the national HIV pre-

vention strategy must also realize this and give the necessary

attention to the work of counsellors and peer educators.

Acknowledgments We would like to acknowledge the contribu- tions of Mr. Ebenezer Aniakwa and Mr. Latif Adams, researchas-

sistants in the Department of Microbiology of UCCSMS and Miss

Anna Hayfron-Benjamine of the School of Nursing, UCC to this

study. In addition the staff of the public health unit of CCTH.

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