The Experiences of HIV Status Disclosure among Pregnant and

Postpartum Women: A Systematic Review of Qualitative Evidence

Ira Rahmawati

and Ratna Dewi

Poltekkes Kemenkes Malang. Kota Malang, Jawa Timur 65119, Indonesia

Department of Nursing, Esa Unggul University, Arjuna Utara no. 9, West Jakarta, Indonesia

Keywords: HIV/AIDS, Disclosure, Experience, Pregnant Women, Postpartum Women, PMTCT, Systematic Review.

Abstract: Disclosure of HIV status among HIV-positive pregnant and postpartum women may significantly improve

their uptake and adherence in the prevention of mother-to-child transmission of HIV programs. However,

many women choose not to disclose their status because of several factors. This review aimed to understand

the experiences of HIV-positive women on HIV-status disclosure during pregnancy and postpartum period.

Five databases were searched to identify relevant qualitative studies published in English language from 2000

to 2017. A three-step search strategy was utilized in this review. An initial limited search of CINAHL and

PubMed was undertaken followed by analysis of the text words contained in the title and abstract, and the

index terms used to describe article. A second search using all identified keywords and index terms was

conducted across all included databases. Thirdly, the reference list of all identified articles was searched for

additional studies. Studies that met inclusion criteria were considered, which include qualitative studies,

participants of the study were HIV positive pregnant or postpartum women and studies that aimed to

understand the experiences of HIV-positive women on HIV-status disclosure in the context of pregnancy and

post-partum period. Qualitative papers selected for retrieval were assessed by two independent reviewers for

methodological validity prior to inclusion in this review using the standardized critical appraisal instruments

from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Data extraction

was also conducted using the JBI-QARI. Three qualitative studies were included in this review. Twenty

themes were extracted, which were then aggregated into six categories and three synthesized findings. The

six categories namely reasons for disclosure and non-disclosure HIV-positive status to the partner, family,

and friends, positive and negative experiences of disclosure and pattern of disclosure. The reasons for

disclosure and non-disclosure of HIV-positive status among women during pregnancy and the postpartum

period are different depending on to whom they disclose. Some of the women experienced negative outcomes

of disclosure such as violence, which may negatively influence their decision to disclose in the future. Lastly,

HIV-positive women need continuing support and counselling to cope with the outcomes of disclosure

practice.

1 INTRODUCTION

About 2. 6 million children under the age of 15 were

living with HIV globally in 2015, with 150. 000

children were newly infected in 2015 (The Joint

United Nations Program on HIV/AIDS [UNAIDS],

2015). Mother-to-child transmission of HIV is

correlated with 90% of HIV infection in children at

the age of 0-6 years old (Sendo, Cherie, & Erku

2013). The transmission of HIV from an HIV-

positive mother to her child can occur during

pregnancy, delivery and breastfeeding. Prevention of

mother-to-child transmission (PMTCT) of HIV

programmes which involve the use of antiretroviral

drugs for the HIV-positive pregnant and breast-

feeding women and a short course of antiretroviral

drugs for the infant have been reported to reduce the

rate of HIV transmission among children to nearly

zero (World Health Organization [WHO], 2013;

Sendo, Cherie, & Erku, 2013). However, the success

of the PMTCT program is dependent upon disclosure

of HIV-seropositive to partners, families and others

in the community (Tam, Amzel, & Phelps, 2015).

Disclosure of HIV status is essential for

preventing HIV transmission and early intervention.

In the context of pregnancy and perinatal particularly,

Rahmawati, I. and Dewi, R.

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence.

DOI: 10.5220/0008199900310041

In Proceedings of the 1st International Conference of Indonesian National Nurses Association (ICINNA 2018), pages 31-41

ISBN: 978-989-758-406-0

disclosure of HIV status by women to their sexual

partners is crucial for the prevention of HIV from

mother to child during pregnancy, birth and through

breast-feeding (Rujumba et al., 2012; Visser,

Neufeld, de Villiers, Makin, & Forsyth, 2008).

Indeed, several studies revealed that women who had

disclosed to their partners were found to be more

likely to bottle-feed their infants and more likely to

participate in PMTCT programmes than women who

had not disclosed (Farquhar et al., 2001; Rujumba et

al., 2012). However, disclosure of HIV status remains

a challenge for pregnant and postpartum women

(Tam, Amzel, & Phelps, 2015). Studies have

documented that the rate of HIV-status disclosure is

low, especially among women in developing

countries, which ranged from 16. 7% to 86%, with the

lowest rate of HIV serostatus disclosure occurred

among women in antenatal care

(Medley, Garcia-

Moreno, McGill, & Maman, 2004).

HIV-related stigma, fear of partner violence, loss

of financial support and blame for bringing the HIV

infection into family prevent many women from

disclosing their HIV-status (Bwirire et al., 2008;

Rujumba et al., 2012). Studies have revealed that non-

disclosure of the HIV status may contribute to non-

adherence to ART, as women do not want to be seen

taking the ART drugs (Madiba & Letsoalo, 2013).

Another study reported that pregnant women choose

to deliver at home to prevent stigma that may arise

following disclosure to the health care providers

(Ujiji et al., 2011). Lastly, feeding counselling and

post-delivery infant prophylaxis may be less likely to

occur in the context of non-disclosure (Kasenga,

Hurtig, & Emmelin, 2010).

Disclosure is defined as the willingness of an

HIV-infected person to reveal their status to another

person, which can be their spouse, family, health

providers or friends (Adeoye-Agboola et al. 2016). It

involves a process of decision-making, which is

influenced by numerous factors including motivation,

communication skills, psychological state and

anticipated reactions (Visser et al., 2008). Disclosure

of HIV status is a complex process involving multiple

and continuing decisions about who to tell, how to tell

and how much to tell (Makin et al., 2008; Moses &

Tomlinson, 2013).

A systematic review on HIV-status disclosure

among pregnant and postpartum women in sub-

Saharan Africa found that individual characteristics

associated with greater chances of disclosure include

first pregnancy, lower level of internalized stigma,

younger age and knowing someone with HIV. Other

factors that positively correlated with disclosure of

HIV status include characteristics of the household

such as living without extended family or co-spouses.

Lastly, characteristics of the partner associated with

higher disclosure rate include higher level of

educations, no history of domestic violence and

financial independence (Tam, Amzel, & Phelps,

2015).

Understanding women’s experiences on

disclosure of HIV status during pregnancy and

postpartum period could provide inputs on how to

improve the uptake and adherence of PMTCT

programs.

To our knowledge, no systematic reviews have

synthesized the experiences of HIV disclosure among

HIV-positive pregnant and postpartum women. A

preliminary search for systematic reviews on this

topic was carried out in Cochrane Library, Joanna

Briggs Institute Database of Systematic reviews &

Implementation Reports, PubMed, CINAHL and

PROSPERO. No existing systematic reviews were

found in these databases that synthesize the

experiences of HIV-positive women on HIV-status

disclosure in the context of pregnancy and postpartum

period. Aware of this fact, this review aims to

synthesize the findings from studies that explore the

experiences of HIV-positive pregnant and postpartum

women on HIV-status disclosure.

2 METHODS

2.1 Inclusion Criteria

2.1.1 Type of Participants

This review included studies that involve HIV-

infected women who are pregnant or in the post-

partum period and 18 years old and above.

2.1.2 Phenomena of Interest

This review sought to understand the views and

experiences of HIV-positive women on HIV-status

disclosure in the context of pregnancy and post-

partum period.

2.1.3 Context

This review included studies that explore the HIV-

positive women’s experiences on HIV-status

disclosure during pregnancy and in the context of

vertical transmission. This review included studies

that conducted in all health care settings (HIV/AIDS

clinics, in-patients, out-patients, rural and urban

community) and all countries. This review considered

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

all studies that investigate the views and experiences

of HIV-positive pregnant women on HIV disclosure

to the partner, family members, and friends.

2.1.4 Types of Studies

This review considered all forms of qualitative study

designs such as grounded theory, phenomenology,

ethnography, action research and other descriptive

qualitative study published in English language.

2.2 Search Strategy

The search strategy aimed to find both published and

unpublished studies. A three-step search strategy

following the Joanna Briggs Institute (JBI) guidelines

was utilized in this review. An initial limited search

of CINAHL and PubMed was undertaken followed

by analysis of the text words contained in the title and

abstract, and of the index terms used to describe

article. A second search using all identified keywords

and index terms was conducted across all included

databases. Thirdly, the reference list of all identified

reports and articles was searched for additional

studies. Studies published in the English language

were considered in this review.

The databases searched included CINAHL,

PubMed, EMBASE, PsycINFO and Scopus. The

search for unpublished studies included reports and

guidelines from professional organizations

(UNAIDS, WHO) and ProQuest.

Initial keywords used were: experiences, views,

perception, HIV, AIDS, disclosure, HIV disclosure,

HIV-positive women, HIV-positive pregnant women,

pregnancy and PMTCT (prevention of mother-to-

child transmission of HIV).

2.3 Method of Review

Qualitative papers selected for retrieval were assessed

by two independent reviewers for methodological

validity prior to inclusion in this review, using the

standardized critical appraisal instruments from the

Joanna Briggs Institute Qualitative Assessment and

Review Instrument (JBI-QARI). Any disagreement

that arose between the two reviewers were resolved

through discussion, or with a third reviewer.

2.4 Data Collection

Qualitative data were extracted from studies included

in this review using the standardized data extraction

tool from JBI-QARI. The extracted data which

include specific details about participants,

phenomenon of interest, study methods, and

outcomes of significance to the review question and

specific objectives. Information regarding the cultural

and geographical settings, method of data analysis

used in the primary studies and the author’s

conclusions were also extracted. Findings were

extracted from the papers by two reviewers working

independently. The two reviewers then discussed and

reached consensus on the levels of credibility of the

findings and the final construction of the findings

were aggregated.

2.5 Data Synthesis

Qualitative research findings were, where possible

pooled using JBI-QARI. This involved the

aggregation or synthesis of the findings to generate a

set of statements that represent that aggregation,

through assembling the findings rated according to

their quality, and categorizing these findings on the

basis of similarity in meaning. These categories were

then subjected to a meta-synthesis in order to generate

a single

comprehensive set of synthesized findings

that could be used as a basis for evidence-based

practice. Where textual pooling was not possible, the

findings were presented in narrative form.

3 RESULTS

3.1 Description of Studies

Following a comprehensive search, 316 articles were

identified (Figure 1). A total of 119 duplicates were

removed leaving 197 articles to be assessed. A total

of 182 article were excluded on reviewing the titles

and abstracts, leaving 15 articles for full text review.

Of these, 12 papers were excluded for not meeting the

inclusion criteria such as included multiple

participants (participants were both HIV-positive and

HIV-negative pregnant women or participants were

HIV-positive pregnant women and their partners) and

the results were not presented as qualitative findings.

This left three studies eligible for critical appraisal.

After assessing the quality of these papers the three

papers were included in this review.

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence

Figure 1: Flow chart of the search and study selection

process.

This review included three qualitative studies

conducted mainly in a South African setting. All the

studies were published within the past 11 years, i.e.

from 2005 to 2013. The three included studies are

described below.

The study by Visser et al.

was conducted in four

antenatal clinics that provide health services to an

urban population in Tshwane, South Africa. 293 HIV-

positive pregnant women were interviewed during

pregnancy (mean gestational age of 28 weeks) with

open-ended questions. These women were referred by

HIV counsellors from the antenatal clinics. The

Interviews were conducted by trained research

assistants in the participants’ language: IsiZulu,

Tswana or Sepedi. Content analysis from Stemler

2002, were performed and two researchers interpreted

the data independently. The reasons for HIV-

disclosure and non-disclosure and also the reactions

after disclosure experienced by the participants are

identified.

Varga, Sherman & Jones’s

study was conducted

in the antenatal clinic of Coronation Women and

Children’s Hospital (CWCH) in Johannesburg, South

Africa. The study carried out using a grounded theory

approach, thus the data collection used a series in-

depth interview and fieldwork. A total of 31 positive

mothers who have been tested for HIV for the first

time during their pregnancy were interviewed at the

clinic by a female interviewer in the participants’

language of choice. Each participant was interviewed

at least twice. The fieldwork was conducted between

December 2003 and August 2003. Qualitative data

from the interviews and observations were

transcribed and translated. Thematic analysis was

performed using QSR NUD*IST (1997) qualitative

data analysis package, and a regular meeting between

the researchers was scheduled to discuss experiences

and observations during data collection.

Moses & Tomlinson’s study

was conducted in an

urban community about 20 kilometers outside Cape

Town in the Western Cape province of South Africa.

The study used a longitudinal ethnographic approach

to trace women’s experiences from late pregnancy

until the end of the first year of motherhood. Hence,

the fieldwork was conducted for 24 months, started in

November 2008. Ten HIV-positive women were

recruited via HIV counsellors during their antenatal

clinic visits. Data collections used in the study are in-

depth interviews with the participants, informal visits

to participants’ homes, infant observations and clinic-

visit observations. The research team includes two

researchers who conducted all the interviews and two

fieldworkers who conducted the observations

together with the two researchers. The interview

topics evolved on the individual basis over the course

of the fieldwork and thus, not all women were asked

all questions. Data which include detailed field notes

and interview transcriptions was analyzed using a

critical interpretative phenomenological approach

(IPA) with ideographic perspectives. Thus, two of the

women’s experiences are then chosen to be explored

in more details as they highlight the range of

complexity and fluidity of disclosure experiences

across the group.

3.2 Methodological Quality

All papers assessed for quality were included in the

review (Table 1). Two papers indicated the

methodological approaches used which include a

grounded theory and ethnographic approach.

Meanwhile, the last study did not clearly indicate the

methodological approach used in the study. In

qualitative studies, the researchers face ethical

challenges in all phases of the research, from

designing to reporting. One of the ethical challenges

that should be acknowledged and addressed is the

researchers’ potential impact on the participants and

vice versa. However, all included studies did not

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

clearly indicate the influence of the researcher on the

research and participants. Therefore, the extent to

which the findings may have been influenced by the

researcher is unclear.

Table 1: Assessment of methodological quality.

Citation 1 2 3 %

Q1 U Y U 33,3

Q2 Y Y Y 100

Q3 Y Y Y 100

Q4 Y U U 33,3

Q5 U Y Y 66,6

Q6 Y Y Y 100

Q7 N N N 0

Q8 N Y N 33,3

Q9 Y Y Y 100

Q10 Y U Y 66,6

*1: Visser MJ, Neufeld S, de Villiers A, Makin JD & Forsyth

BWC (2008), 2: Varga CA, Sherman GG & Jones SA (2005), 3:

Moses S & Tomlinson M (2013);

*Q1-Q10 arethe Joanna Briggs Institute(JBI) Critical Appraisal

Checklist for Qualitative Research; Y:yes, U:unclear, N:no.

3.3 Findings of the Review

A meta-synthesis was carried out according to the

framework provided by JBI. There were 20 findings,

which were rated as unequivocal (U: 11) and credible

(C: 9) (Appendix V). The findings were aggregated

into six categories based on the similarity in meaning.

The six categories were then meta-aggregated into

three synthesized findings are illustrated in more

detail in Appendix (VI).

Synthesized finding one:

The reasons for disclosure and non-disclosure of

HIV-positive status among women during pregnancy

and the postpartum period are different depending on

to whom they disclose. Appropriate support

mechanisms should be offered to help these women

to deal with the outcomes of disclosure their fear and

violence when it really occurs. Health worker

mediated disclosure, couple counselling or

collaboration with support groups for women living

with HIV may be utilized to support these women.

This synthesized finding consists of three categories:

1. Reasons for disclosure and non-disclosure to the

partner

The most common reason given by the HIV-

positive women for disclosing to their partners

was to inform them of the risk of HIV

transmission. Another significant reason included

a sense of responsibility given the relationship.

The example of women’s expression:

“He has the right to know as the father of the

expected child. I had the responsibility to

disclose” (U) (Visser et al. P.1140).

Some women chose to not disclose the HIV status to

their partners because they fear of being abandoned

and blamed, and afraid that their partners will become

violent towards them.

“I do not know how to tell him. He often says he

would kill me if I told him that I’m infected

because he does not have HIV” (C)

(Visser et al.

P. 1141).

2. Reasons for disclosure and non-disclosure to the

family

HIV-positive women disclosed to the family

because they need support from people they trust.

These women have also disclosed their status to

solicit care for their baby and to ensure breast-

feeding avoidance. The following statements

were example of the women’s expressions:

“I told them [family members] exactly why [the

baby] is using a bottle. As soon as I found out

about my result I told them I have been tested and

that I am HIV-positive so I will have to give the

bottle and I am not supposed to breast-feed. After

that, they stopped pressuring me. My mother [is

now] supportive and helps me to make bottles and

feed [the baby] properly” (C) (Varga, Sherman &

Jones. 2006. P. 957).

In contrast to the reasons for non-disclosure to the

partner, a common reason

for non-disclosure to the

family is to protect them from the stigma:

“My mother is sick. She had a stroke. I can’t tell

her because it will affect her health” (U) (Visser

et al. 2008., P. 1141).

3. Reasons for disclosure and non-disclosure to

friends

Some of these women chose to disclose to their

friends, especially the close one to garner

emotional support as they experienced the

relationship as supportive and trusting. The

following statement was expressed by one of the

participants:

“I told… when I came back from the clinic

because I was so hurt and wanted someone to

share the pain with me” (U) (Visser et al.,

2008P.1140).

Meanwhile, the most common reasons given by the

participants for not disclosing to their friends was the

lack of trusting relationship. One of the women said:

“I am not close to them and don’t know what they

will say behind my back"

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence

Synthesized finding two:

HIV-positive women need continued support and

counselling to cope with disclosure practice as they

may experience negative outcomes of disclosure that

can negatively affect their lives and the wellbeing of

the infant.

This synthesized finding comprises two

categories:

1. Positive outcomes of disclosure

Some of the participants have reported positive

responses of disclosure from their partner or family.

The following statement was example of a woman’s

experience when disclosing the HIV-status to her

mother:

“She was very hurt, she cried but she accepted

and was supportive. I felt better after telling her”

(U) (P. 1141).

An example of a women’s positive experience of

disclosure to her partner:

“It was a shock at first but [now] we support each

other all the way. When one is down the other lifts

that one up … [after I told him] …we slept holding

each other as though we knew death [was] coming

…our love became stronger [after I disclosed]”

(U)

(Varga, Sherman & Jones, 2006, P. 957).

2. Negative outcomes of disclosure

Negative consequences of HIV-status disclosure

described by some of the percipients include

emotional rejection and indifferent reactions. The

women’s expressions describing negative outcomes

of disclosure included:

“[My husband’s family] started separating out

my things from the rest … they would lay

everything out for me, saying they wanted make

sure I had everything [I need]. I had my own

plates and cups and the would say ‘here use this.

Just use it and wash it right away’. They tried to

be polite and caring but I could see it [my HIV

status] made them uncomfortable ...” (C)

(Varga,

Sherman & Jones. 2006, P. 958).

Synthesized finding three:

Disclosure of HIV status is a complex process

comprising varied modes and patterns. Women may

also experience disclosure as fluid rather than

absolute, which means they could shift from being

ready to disclose to not being ready. Therefore,

counsellors or health care providers should continue

to engage the HIV- positive women around how

ready they feel to share their status, and keep the

clients’ status confidential to prevent involuntary

disclosure.

One category namely disclosure patterns support

this synthesized finding

Several women disclosed voluntarily to the

primary target and did it in a simple and direct

manner:

“I just went home and told him” (U)

(Varga,

Sherman & Jones. 2006, P. 955).

“I just said it straight out, I am [HIV]-positive”

(U)

(Varga, Sherman & Jones. 2006, P. 955).

In contrast, some of the women chose to disclose

indirectly to avoid a conversation about death or

blame of infection:

“My sister used to dislike people [infected] with

HIV. We were listening to this radio program

[about people living with HIV] and I said I didn’t

like the way she was talking about the people they

were interviewing. I said, ‘don’t speak badly

about these people. You yourself don’t know

where you stand [you yourself could be infected].

Some of us have had to face this [issue of living

with HIV] already’. I think she realized after that

[that I am HIV-positive]” (C)

(Varga, Sherman &

Jones. 2006, P. 956).

Interestingly, some of the women in these studies

have experienced disclosure of HIV status as a fluid

and non-linear process. This means that a dichotomy

of disclosure as having either took place or not, did

not always fit with women’s experiences.

“No I did not tell him …because he lives with my

friend, they live in the same yard; they talked

about it over there. So when he had already heard

about it over there, I said ‘yes I have it, you must

decide what you are going to do’. I just agreed.

He came to ask me, and I told him” (Moses &

Tomlinson, 2013, P. 672).

4 DISCUSSION

The synthesized findings formulated in this review

provide insights into factors that can influence the

women’s decision to disclose or not disclose their

HIV-status. This review also depicts the complexity

of HIV-status disclosure process experienced by the

women during their pregnancy and early motherhood.

This review has identified a range of reasons and

motivations for disclosure or nondisclosure of HIV

status among pregnant and postpartum women. The

women shared their HIV status to their partner

mainly because of a sense of responsibility to their

partner and to raise awareness of the risk of HIV

transmission. In contrast, the women choose to

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

disclose to close family members or friends to seek

emotional and practical supports. These women have

also disclosed to their family to garner support and

care for the infant as well as to ensure breast-feeding

avoidance as HIV can be vertically transmitted

through breast milk.

Meanwhile, the key factors identified as playing

role in unwillingness to disclose included fear of

violence and abandoned. Fear of abandoned was

correlated with intense fear of losing financial

support for the infant (Rujumba et al. 2012). Other

factors that negatively associated

with disclosure

included previous history

of domestic violence,

financial dependency and living with an extended

family (Tam M, Amzel A, & Phelps BR 2015).

The

implication here is that counsellors or heath care

providers should consider varying personal and

social contexts in preparing women for disclosure.

For example, women who are not working and highly

dependent on their partner may need more

counselling and help for disclosure and persuading

their partner to undertake HIV testing.

Disclosure of HIV status, especially among

pregnant women, has been found to be correlated with

lower HIV transmission rates from mother to infants

and increased maternal and infant adherence to ARV

therapy (Torpey et al. 2012; Kirsten et al., 2011).

These underline the importance of encouraging HIV

disclosure in PMTCT programmes. However,

Interventions to facilitate a safe disclosure should be

provided to minimize the risk of negative outcomes

from disclosure. The interventions may include

strategies to increase communication and relationship

building skills and working with the women to create

an individualized disclosure plan (Tam M, Amzel A,

& Phelps BR 2015; Walcott 2013).

This review reveals that discourse of HIV status

is a complex and continues process comprising

varied patterns and types. Social circumstances,

cultural norms, HIV-related media and personal

characteristics shaped how these women disclosed

(Varga, Sherman & Jones 2006). Some women chose

to disclose in a simple and direct manner, while

others disclosed indirectly to avoid conversations

that may lead to a discussion about death or blame

for infection.

Some women have experienced

involuntary disclosure caused by the media that

created a public association between particular

perinatal health practices and HIV infection. For

example advertising a particular brand of milk for

HIV-pregnant women (Varga, Sherman & Jones

2006)

Confidentially breach by the primary target

has also been identified as a cause of involuntary

disclosure in this review. Strategies should be

employed to prevent involuntary disclosure as it was

frequently reported to cause negative consequences

including emotional rejection and withdrawal of

material supports.

Strategies that may be utilized to reduce the

incidence of involuntary disclosure include a

promotion or branding the PMTCT programmes as a

general pregnancy health, training of the health

workers and involvement of the community in HIV

education.

An active participation of the community

in HIV education may also help to reduce HIV-

related stigma, one of the significant barriers to HIV

disclosure (Walcott et al. 2013; Arrey et al. 2015).

This review has also captured an interesting

phenomenon, that is women may experience HIV

disclosure as a non-linear and non-absolute process.

This means that the women’s experiences on HIV

disclosure not always moving from non-disclosure to

disclosure, but could change from being ready to

disclose to not being ready. Therefore, an ongoing

counselling should be provided for HIV-positive

women to engage them around how ready they feel

to disclose their status. The health workers should

also understand that the non-linear and non-absolute

process of disclosure may serve protective functions

for these women and should be respected.

As previously mentioned, after disclosing the

HIV status, women experienced varying reactions.

Although some women reported a supportive and

strengthened partner relationship as a result of the

disclosure, negative reactions were not also

uncommon. Some women expressed a guilty and

isolated feeling following their partner and family’s

reactions to the disclosure. Previous systematic

reviews have reported the similar negative outcomes

of HIV disclosure experienced by the women which

included violence, blame abandonment and disbelief

(

in order to reduce these negative outcomes, the

PMTCT education should also targets the family

members, partners and broader community rather

than merely focus on women (Medley et al. 2004;

Tam, Amzel & Phelps 2015).In cases where the

women did

experienced a violent reaction from their

partners and family, the health workers should be

ready to help with resources that can be accessed

such as the involvement of the domestic violence

agency.

The WHO has endorsed four approaches to

prevent HIV transmission in mothers and their

infants. These include the prevention of HIV

transmission to potential mothers, the prevention of

unintended pregnancy among HIV-positive women,

the prevention of mother-to-child transmission of

HIV and the provision of support, care and treatment

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence

for mothers, and their infants, families and partners

(Medley et al. 2014). The success of each element of

the four PMTCT approaches will depend on

disclosure of HIV status by the women to their

partners and family members.

Studies have identified several strategies to

facilitate a safe disclosure in the context of antenatal

care. Partner’s involvement in PMTCT programmes

is reported to be associated with increased women’s

adherence to the PMTCT recommendations

including ART therapy and non-breastfeeding

practice (Medley et al. 2014; Tam, Amzel & Phelps

2015). Couple counselling and testing during

antenatal care is one of the most favoured approaches

to increase partner involvement in

PMTCT programmes. This approach will also

eliminate the burden of HIV-status disclosure as the

couple will be tested for HIV at the same time and

thus, no one can be blamed for infecting the other

(Medley et al. 2014; Tam, Amzel & Phelps 2015).

Furthermore, home-based couple counselling and

testing can be an alternative way to increase partner

involvement and safe disclosure during ANC.

Providing HIV testing and counselling at homes was

reported to be feasible and acceptable to the health

care workers, pregnant women and their partners

(Walcott et al., 2013).

5 CONCLUSIONS

This review highlights the complexity of HIV

disclosure experienced by HIV-positive pregnant and

post-partum women. The motivations for disclosure

or non-disclosure and how these women disclosed the

status were moderated by several factors which

include personal circumstances, social contexts, and

environmental situations. The counsellors or health

workers should understand the different process

involved in disclosure to family and partners. This

review also shows that women may experience

disclosure as a fluid and non-linear process and

therefore, it important that the health workers

continuingly explore the women’s readiness to share

their status with the others.

REFERENCES

Adeoye-Agboola, D. I., Evans, H., Hewson, D., & Pappas,

Y., (2016), Factors influencing HIV disclosure among

people living with HIV/AIDS in Nigeria: a systematic

review using narrative synthesis and meta-analysis,

Public Health, vol. 136, pp. 13-28, doi:

10.1016/j.puhe.2016.02.021.

Arrey, AE, Bilsen, J., Lacor, P., Deschepper, R., (2015),

“It’s My Secret”: Fear of Disclosure among

SubSaharan African Migrant Women Living with

HIV/AIDS in Belgium, PLoS ONE, vol.10, no. 3,

:e0119653.

Bwirire, L. D., Fitzgerald, M., Zachariah, R., Chikafa, V.,

Massaquoi, M., Moens, M., Schouten, E. J., (2008),

Reasons for loss to follow-up among mothers registered

in a prevention-of-mother-to-child transmission

program in rural Malawi, Transactions of the Royal

Society of Tropical Medicine and Hygiene, vol. 102, no.

12, 1195-1200. doi: 10.1016/j.trstmh.2008.04.002.

Farquhar, C., Mbori-Ngacha, D. A., Bosire, R. K., Nduati,

R. W., Kreiss, J. K., & John, G. C., (2001), Partner

notification by HIV-1 seropositive pregnant women:

Association with infant feeding decisions, AIDS, vol.

15, no. 6, 815-817. doi: 10.1097/00002030-200104130-

00027.

Kasenga, F., Hurtig, A.-K., & Emmelin, M., (2010), HIV-

positive women's experiences of a PMTCT programme

in rural Malawi, Midwifery, vol. 26, no. 1, pp. 27-37.

doi: http://dx.doi.org/10.1016/j.midw.2008.04.007.

Madiba, S., & Letsoalo, R., (2013), HIV Disclosure to

Partners and Family among Women Enrolled in

Prevention of Mother to Child Transmission of HIV

Program: Implications for Infant Feeding in Poor

Resourced Communities in South Africa, Global

Journal of Health Science, 5(4), 1-13. doi:

10.5539/gjhs.v5n4p1

Makin, J. D., Forsyth, B. W., Visser, M. J., Sikkema, K. J.,

Neufeld, S., & Jeffery, B., (2008), Factors affecting

disclosure in South African HIV-positive pregnant

women. AIDS Patient Care STDS, vol. 22, no. 11, pp.

907-916. doi: 10.1089/apc.2007.0194

Medley, A., Garcia-Moreno, C., McGill, S., & Maman, S.,

(2004), Rates, barriers and outcomes of HIV serostatus

disclosure among women in developing countries:

Implications for prevention of mother-to-child

transmission programmes. Bulletin of the World Health

Organization, vol. 82, no. 4, pp. 299-307.

Moses, S., & Tomlinson, M., (2013), The fluidity of

disclosure: A longitudinal exploration of women's

experience and understanding of HIV disclosure in the

context of pregnancy and early motherhood. AIDS Care

- Psychological and Socio-Medical Aspects of

AIDS/HIV, vol. 25, no. 6, pp. 667-675, doi:

10.1080/09540121.2012.736606.

Rujumba, J., Neema, S., Byamugisha, R., Tylleskär, T.,

Tumwine, J. K., & Heggenhougen, H. K., (2012).

“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. Journal of the International

AIDS Society, vol. 15, no. 2, p. 17429. doi:

10.7448/IAS.15.2.17429.

Sendo, E. G., Cherie, A., & Erku, T. A., (2013), Disclosure

experience to partner and its effect on intention to

utilize prevention of mother to child transmission

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

service among HIV positive pregnant women attending

antenatal care in Addis Ababa, Ethiopia. BMC Public

Health, vol. 13, pp. 765-765, doi: 10.1186/1471-2458-

13-765.

Tam, M., Amzel, A., & Phelps, B. R., (2015), Disclosure of

HIV serostatus among pregnant and postpartum women

in sub-Saharan Africa: a systematic review, AIDS Care,

vol. 27, no. 4, pp. 436-450. doi:

10.1080/09540121.2014.997662.

The Joint United Nations Programme on HIV/AIDS,

(2015), Fact sheet 2016, Retrieved from:

http://www.unaids.org/sites/default/files/media_asset/

UNAIDS_FactSheet_en.pdf.

The World Health Organization, (2013), HIV/AIDS:

Mother-to-child transmission of HIV [online].

Retrieved from:

http://www.who.int/hiv/topics/mtct/about/en/.

Torpey K., Mandala J., Kasonde P., Bryan-Mofya G.,

Bweupe M., Mukundu J., et al, (2012), Analysis of HIV

Early Infant Diagnosis Data to Estimate Rates of

Perinatal HIV Transmission in Zambia. PLoS ONE.

vol. 7, no. 8.

Ujiji, O. A., Ekström, A. M., Ilako, F., Indalo, D.,

Wamalwa, D., & Rubenson, B., (2011), Reasoning and

deciding PMTCT-adherence during pregnancy among

women living with HIV in Kenya, Culture, Health and

Sexuality, vol. 13, no. 7, pp. 829-840, doi:

10.1080/13691058.2011.583682

Varga, C. A., Sherman, G. G., & Jones, S. A., (2006), HIV-

disclosure in the context of vertical transmission: HIV-

positive mothers in Johannesburg, South Africa. AIDS

Care, vol. 18, no. 8, pp. 952-960. doi:

10.1080/09540120500356906.

Visser, M. J., Neufeld, S., de Villiers, A., Makin, J. D., &

Forsyth, B. W. C., (2008), To tell or not to tell: South

African women's disclosure of HIV status during

pregnancy, AIDS Care, vol. 20, no. 9, pp. 1138-1145.

doi: 10.1080/09540120701842779.

Walcott MM, Hatcher AM, Kwena Z, Turan JM., (2013),

Facilitating HIV status disclosure for pregnant women

and partners in rural Kenya: a qualitative study, BMC

Public Health, vol. 13, no. 1, pp. 1-25.

APPENDIX

Extracted Findings

Extracted

themes

Illustrative quotes

Level of

credibility

Visser et al.

(2008)

Disclosing HIV

status to raise

risk

awareness for

changes in

lifestyles

Responsibility/

obligation

given the

relationship

Being in

supportive

and trusting

relationships

Explanation of

behaviour,

illness and

death

“I told him to inform

him that we are both

HIV positive and

that we need to

change our life

styles” Visser et al.

(P. 1140).

“He has the right to

know as the father

of the expected

child. I had the

responsibility to

disclose” Visser et

al. (P. 1140).

“There is no other

person but my

mother I could tell,

knowing that she’d

help me. She

understands. A

mother is a mother”

Visser et al. (P.

1140).

“I wanted them to know

what killed me and

ask them to look

after my children

when I am dead”

Visser et al. (P.

1140).

Unequivocal

Credible

Fear of violence

Protect others

from the

results

Lack of trusting

relationships

Experiencing

supportive

and accepting

reactions of

HIV-status

disclosure

“I don’t know how to tell

him, he often says

he would kill me if I

told him that I am

infected because he

does not have HIV”

Visser et al. (P.

1141).

“My mother is sick. She

had a stroke. I can’t

tell her because it

will affect her

health” Visser et al.

(P. 1141).

“I am not close to them

and don’t know

what they will say

behind my back”

Visser et al. (P.

1141).

“She was very hurt, she

cried but she

accepted and was

supportive. I felt

better after telling

her” Visser et al. (P.

1141).

Credible

Unequivocal

Credible

Unequivocal

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence

Experiencing

indifferent

reaction

when

disclosing

HIV status

to the

partner

“He just looked at me and

turned the other way

without saying a

word. He acts as if I

did not tell him a

serious thing” Visser

et al. (P. 1141).

Credible

Extracted

themes

Illustrative quotes

Level of

credibility

Varga,

Sherman, Jones

(2006) 

Voluntary

direct

disclosure

Voluntary

indirect

disclosure



Involuntary

disclosure of

HIV status



“I just went home and told

him”, “I just said it

straight out” Varga,

Sherman, Jones (P. 955). 

“My sister used to dislike

people [infected] with

HIV. We were listening to

this radio program [about

people living with HIV]

and I said I didn’t like the

way she was talking about

the people they were

interviewing. I said,

‘don’t speak badly about

these people. You

yourself don’t know

where you stand [you

yourself could be

infected]. Some of us

have had to face this

[issue of living with HIV]

already’. I think she

realized after that [that I

am HIV-positive]” Varga,

Sherman, Jones (P. 956). 

“They show everything on

TV [quoting a

documentary on the

nevirapine controversy]

...’mothers who are

infected, they use this and

that [nevirapine and infant

formula]. They are

infected and they get this

Pelargon for free at the

hospital’ 10 o’clock in the

morning they are showing

this thing. We were

watching and [my family]

asked why I use that milk

[Pelargon] they show on

the TV to feed the baby.

Do I get it for free at the

hospital like they [the

HIVpositive women

featured in the

documentary] do? So I

lied to them. I told them

the hospital is selling this

milk, you pay for your

monthly supply. They

never said anything more



Unequivocal



Credible



Credible



Extracted

themes

Illustrative quotes

Level of

credibility



Disclosing

HIV-status to

ensure breast

feeding

avoidance

about it, but I couldn’t

stop wondering if now

they think I am [HIV]-

positive” Varga, Sherman,

Jones (p. 956).

“I told them [family

members] exactly why

[the baby] is using a

bottle. As soon as I found

out about my result, I told

them I have been tested

and that I am



Unequivocal

HIV-positive so I will

have to give the bottle

and I am not supposed to

breastfeed. After that,

they stopped pressuring

me. My mother [is now]

supportive and helps me

to make bottles and feed

[the baby] properly”

Varga, Sherman, Jones

(P. 957).

Disclosure is

necessary to

solicit care

and support

for the infant



Experiencing

strengthened

partner

relationship

after HIV

disclosure



“After I got very sick

…my boyfriend panicked.

It was better to cough it

up [disclose] in case

things got worse. So we

just told them. We needed

to support in case

something happens to me

…I think about [the

baby’s] future, if it

happens that I die. Now

her future is secure [there

will be someone to look

after her]” Varga,

Sherman, Jones (P. 957).

“It was a shock at first but

[now] we support each

other all the way. When

one is down the other lifts

that one up … [after I told

him] …we slept holding

each other as though we

knew death [was] coming

…our love became

stronger [after I

Unequivocal



Unequivocal



ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

Extracted

themes

Illustrative quotes

Level of

credibility



Feeling self-

conscious,

trapped and

isolated

following

family

reactions after

HIV-status

disclosure

disclosed]” Varga,

Sherman, Jones (P. 957).

“[My husband’s family]

started separating out my

things from the rest …

they would lay everything

out for me, saying they

wanted make sure I had

everything [I need]. I had

my own plates and cups

and the would say ‘here

use this. Just use it and

wash it right away’. They

tried to be polite and

caring but I could see it

[my HIV status] made

them uncomfortable …on

my side [of the family]

they are too [heavy

emphasis] supportive.

They are too concerned.

They are always asking

me ‘Are you okay? Are

you getting sick?’ so now

I have started feeling

guilty …they are too

focused on me. [I feel as

though] my life is longer

[my own] Varga,

Sherman & Jones (P.

958).



Credible

Extracted

themes

Illustrative quotes

Level of

credibility

Moses &

Tomlinson

(2013)

Experiencing

HIV-status

disclosure as a

non-absolute

and non-linear

process



Indirect

disclosure



“I’m not gonna tell [my

mother]. Maybe she’s

gonna find out. But my

mother, I don’t know but

if I remember it was,

maybe it was 2005 or

2006, I did tell my

mother, but like in a nice

way, it was like a joke.

No, she said to me, ‘oh

you’re sick but you are

drinking, smoking, what

about your life?’ it ends

there, we never talk

about it again, so I don’t

know maybe she still

remembers that or not”

Moses & Tomlinson (P.

672).

“No I did not tell him

…because he lives with

my friend, they live in the

same yard; they talked

about it over there. So

when he had already

heard about it over there,



Credible



Credible

Extracted

themes

Illustrative quotes

Level of

credibility



Disclosing

HIV status to

garner

emotional and

practical

support



Fear of being

blamed and

abandoned

I said ‘yes I have it, you

must decide what you are

going to do’. I just

agreed. He came to ask

me, and I told him”

“I asked him; ‘what if

you could go and get

tested? Or maybe I am

making an example: ‘if I

turned out positive, what

would you do?’ … I was

joking, I wanted to see

what he was going to do”

Moses & Tomlinson (P.

672).

“Pumla was very

stressed…she said to me

‘how are [my] children

going to grow without

their father?’… as Pumla

talking you could feel

her frustration anger,

saying that ‘if only I

hadn’t fallen pregnant’,

and ‘why did my

boyfriend ask for another

child only to find out that

he’s going to leave them.

Who’s going to look

after his children?’ but

she is happy that her

sister-in-law is

supporting her at all

times” Moses &

Tomlinson (P. 673).

“Because if I tell him, he

will leave me here with

this baby, because he will

say I am the one who

brought this to him”

Moses & Tomlinson (P.

670).



Credible



Unequivocal

The Experiences of HIV Status Disclosure among Pregnant and Postpartum Women: A Systematic Review of Qualitative Evidence