Factors Influencing Disclosure of HIV ST PDF

FACTORS INFLUENCING DISCLOSURE OF HIV
STATUS TO SEXUAL PARTNERS IN BOTSWANA
by
TINY KELEBOGILE MASUPE
Submitted in accordance with the requirements
for the degree of
MASTER OF PUBLIC HEALTH
at the
UNIVERSITY OF SOUTH AFRICA
SUPERVISOR: PROF GH VAN RENSBURG
JOINT SUPERVISOR: PROF SP HUMAN
JUNE 2011
Student number: 34887393
DECLARATION
I declare that FACTORS INFLUENCING DISCLOSURE OF HIV STATUS TO SEXUAL

PARTNERS IN BOTSWANA is my own work and that all the sources that I have used
or quoted have been indicated and acknowledged by means of complete references
and that this work has not been submitted before for any other degree at any other
institution.
28 February 2011
…………….................. ...............................
SIGNATURE DATE
Tiny Kelebogile Masupe
FACTORS INFLUENCING DISCLOSURE OF HIV STATUS TO
SEXUAL PARTNERS IN BOTSWANA
STUDENT NUMBER: 34887393

STUDENT: TK MASUPE
DEGREE: MASTERS IN PUBLIC HEALTH
SUPERVISOR: PROF GH VAN RENSBURG
JOINT SUPERVISOR: PROF SP HUMAN
ABSTRACT
The study aimed to explore and describe the factors influencing disclosure of Human
Immunodeficiency Virus (HIV) status to sexual partners by people infected with HIV in
Botswana, by undertaking an exploratory and descriptive qualitative study. Data was
collected through in-depth interviews with people infected with HIV who had disclosed
their HIV status to their partners.
The major findings of the study confirmed disclosure as a multi-stage process. People
infected with HIV experienced mainly positive and some negative outcomes following
disclosure. Disclosure was associated with the discloser’s motivations, personal and
cultural beliefs, risk-benefit assessment, individual circumstances (context), previous
experiences, and perceived degree of control over private information.
The communication privacy management (CPM) theory helped explain the findings. The
key factor influencing disclosure was protecting others. Non-disclosers had also
seriously considered disclosing to partners.
Key concepts
Communication; disclosure; HIV status; HIV testing; communication privacy

management theory; privacy; private information; reactions; sexual partner.
ACKNOWLEDGEMENTS
I am grateful to The Lord for giving me the opportunity and strength to complete this
study. I give him all the glory and praise as He alone deserves it.
I would also like to give thanks to the following persons for their incredible support and
unending encouragement:
• Prof Gisela Van Rensburg and Prof Sarie Human, my supervisors at Unisa, for
all they taught me
• The Unisa librarians for all the literature sources you helped find for me
• My husband, who never stopped believing in me and put up with my highs and
lows
• My children, who understood that mummy had to work all the time and knew they
had to have fun with me for short periods of time before I had to work again
• My family and friends, who encouraged me and never gave up supporting and
believing in me
• GMT Surgery, for allowing me to do the research at the clinic
• Dr Tsie of GMT Surgery, for facilitating access to the research population
• Edwin Nzimande, for co-coding my work
• Gape Motswaledi, for helping and checking that my translations of interviews

from Setswana to English were up to standard
• Marion Marchand, for editing the dissertation
• Rina Coetzer, for all the hard work she did to facilitate final submission of the
dissertation
To you all my sincere thanks and love, I wish you all strength in your endeavours. May
God richly bless you all.
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Table of contents Page
CHAPTER 1
ORIENTATION TO THE STUDY
1.1 INTRODUCTION .......................................................................................................................................... 1
1.2 BACKGROUND INFORMATION ABOUT THE RESEARCH PROBLEM ..................................................... 2
1.2.1 The source of the research problem ............................................................................................................. 2

1.2.2 Background to the research problem............................................................................................................ 3
1.3 STATEMENT OF THE RESEARCH PROBLEM .......................................................................................... 4
1.4 PURPOSE AND OBJECTIVES OF THE STUDY ......................................................................................... 5
1.4.1 Purpose of the study..................................................................................................................................... 5

1.4.2 Study objectives ........................................................................................................................................... 5
1.5 SIGNIFICANCE OF STUDY ......................................................................................................................... 6
1.6 DEFINITIONS OF KEY CONCEPTS ............................................................................................................ 6
1.6.1 Disclosure: Theoretical definition ................................................................................................................. 6

1.6.2 Disclosure: Operational definition ................................................................................................................ 7
1.6.3 Sexual partner .............................................................................................................................................. 7
1.7 FOUNDATIONS OF THE STUDY ................................................................................................................ 7
1.7.1 Theoretical framework .................................................................................................................................. 7
1.7.1.1 Theory of disease progression ..................................................................................................................... 7

1.7.1.2 Theory of competing consequences ............................................................................................................. 8
1.7.1.3 Communication privacy management theory ............................................................................................... 8
1.8 THE RESEARCH METHODOLOGY ............................................................................................................ 8
1.8.1 Research design........................................................................................................................................... 8

1.8.2 Study population ........................................................................................................................................... 8
1.8.3 Sample and sampling technique................................................................................................................... 9
1.8.4 Method of data collection.............................................................................................................................. 9
1.8.4.1 The interview schedule ................................................................................................................................. 9

1.8.4.2 Field notes .................................................................................................................................................... 9
1.8.5 Method of data analysis ................................................................................................................................ 9

1.8.6 Ethical considerations................................................................................................................................. 10
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1.9 STRUCTURE OF THE DISSERTATION .................................................................................................... 10
1.10 CONCLUSION............................................................................................................................................ 11
CHAPTER 2
RESEARCH METHODOLOGY
2.1 INTRODUCTION ........................................................................................................................................ 12
2.2 PURPOSE AND OBJECTIVES OF THE STUDY ....................................................................................... 12
2.3 RESEARCH CONTEXT ............................................................................................................................. 12
2.3.1 The context ................................................................................................................................................. 13

2.3.2 The setting of the study .............................................................................................................................. 13
2.4 RESEARCH DESIGN ................................................................................................................................. 14
2.4.1 Qualitative approach................................................................................................................................... 14

2.4.2 Phenomenology.......................................................................................................................................... 14
2.4.3 Exploratory design ...................................................................................................................................... 15
2.4.4 Descriptive design ...................................................................................................................................... 15
2.5 POPULATION ............................................................................................................................................ 15
2.6 SAMPLE AND SAMPLING ......................................................................................................................... 16
2.6.1 Sample size ................................................................................................................................................ 16

2.6.2 Sampling..................................................................................................................................................... 16
2.6.2.1 Purposeful sampling technique................................................................................................................... 17

2.6.2.2 Eligibility criteria .......................................................................................................................................... 17
2.7 DATA COLLECTION .................................................................................................................................. 18
2.7.1 Data collection approach ............................................................................................................................ 18
2.7.1.1 Unstructured in-depth interview .................................................................................................................. 18

2.7.1.2 Pilot interview ............................................................................................................................................. 19
2.7.1.3 Field notes .................................................................................................................................................. 19
2.7.2 Data collection process .............................................................................................................................. 20
2.8 DATA ANALYSIS ....................................................................................................................................... 21
2.8.1 Familiarisation with the data ....................................................................................................................... 22

2.8.2 Transcription ............................................................................................................................................... 23
2.8.3 Organising data .......................................................................................................................................... 23
2.8.4 Coding ........................................................................................................................................................ 24
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2.8.4.1 Open coding and delineation of emergent concepts .................................................................................. 25

2.8.4.2 Conceptual coding and refinement of conceptual coding schemes ............................................................ 25
2.8.4.3 Categories and subcategories .................................................................................................................... 26
2.8.4.4 Identifying themes ...................................................................................................................................... 26
2.8.4.5 Literature control......................................................................................................................................... 27
2.9 TRUSTWORTHINESS OF THE STUDY .................................................................................................... 27
2.9.1 Credibility .................................................................................................................................................... 27

2.9.2 Dependability .............................................................................................................................................. 28
2.9.3 Confirmability .............................................................................................................................................. 29
2.9.4 Transferability ............................................................................................................................................. 29
2.9.5 Authenticity ................................................................................................................................................. 30
2.10 ETHICAL CONSIDERATIONS ................................................................................................................... 30
2.10.1 Voluntary participation ................................................................................................................................ 30

2.10.2 Informed consent to participation................................................................................................................ 31
2.10.3 Anonymity and confidentiality ..................................................................................................................... 31
2.10.4 Deception ................................................................................................................................................... 32
2.10.5 Analysis and reporting of data .................................................................................................................... 32
2.10.6 The Medical Research Council (MRC) ethics ............................................................................................. 32
2.10.6.1 Autonomy ................................................................................................................................................... 33

2.10.6.2 Beneficence ................................................................................................................................................ 33
2.10.6.3 Non-maleficence......................................................................................................................................... 33
2.10.6.4 Justice ........................................................................................................................................................ 34
2.11 CONCLUSION............................................................................................................................................ 34
CHAPTER 3
DATA ANALYSIS AND PRESENTATION OF RESULTS

3.1 INTRODUCTION ........................................................................................................................................ 35
3.2 DATA ANALYSIS PROCESS ..................................................................................................................... 35
3.3 BIOGRAPHICAL DATA .............................................................................................................................. 36
3.4 OVERVIEW OF THEMES AND CATEGORIES FROM INTERVIEWS ...................................................... 37
3.4.1 Theme 1: Reasons for HIV testing.............................................................................................................. 37

3.4.2 Theme 2: Pre-disclosure deliberations ....................................................................................................... 39
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3.4.2.1 Negative thoughts....................................................................................................................................... 40

3.4.2.2 Positive thoughts ........................................................................................................................................ 40
3.4.2.3 Indifference ................................................................................................................................................. 41
3.4.3 Theme 3: Process of disclosure ................................................................................................................. 42
3.4.3.1 Pre-disclosure clues ................................................................................................................................... 42

3.4.3.2 Time taken from knowing results to disclosing results ................................................................................ 44
3.4.3.3 Mode of communication ............................................................................................................................. 44
3.4.4 Theme 4: Reasons for disclosing HIV status .............................................................................................. 46
3.4.4.1 Others-focused factors ............................................................................................................................... 46

3.4.4.2 Self focused ................................................................................................................................................ 47
3.4.5 Theme 5: Reasons against disclosing HIV status ...................................................................................... 50
3.4.5.1 Discloser perceptions ................................................................................................................................. 50

3.4.5.2 Partner perceptions .................................................................................................................................... 50
3.4.5.3 Other perceptions ....................................................................................................................................... 51
3.4.6 Theme 6: Initial reactions to disclosure ...................................................................................................... 52
3.4.6.1 Self ............................................................................................................................................................. 52

3.4.6.2 Partner ........................................................................................................................................................ 53
3.4.7 Theme 7: Consequences of disclosure ...................................................................................................... 54
3.4.7.1 Positive effects ........................................................................................................................................... 55

3.4.7.2 Negative effects .......................................................................................................................................... 55
3.4.8 Theme 8: Participants’ recommendations .................................................................................................. 57
3.4.8.1 Supportive measures.................................................................................................................................. 58

3.4.8.2 Punitive measures ...................................................................................................................................... 59
3.5 CONCLUSION............................................................................................................................................ 60
CHAPTER 4
DISCUSSION OF FINDINGS AND LITERATURE REVIEW

4.1 INTRODUCTION ........................................................................................................................................ 62
4.2 DISCUSSION OF THEMES AND LITERATURE CONTROL ..................................................................... 62
4.2.1 Reasons for HIV testing.............................................................................................................................. 63

4.2.2 Pre-disclosure deliberations ....................................................................................................................... 64
4.2.3 Process of disclosure ................................................................................................................................. 65
4.2.4 Reasons for disclosing HIV status .............................................................................................................. 68
4.2.5 Reasons against disclosing HIV status....................................................................................................... 70
4.2.6 Initial reactions to disclosure....................................................................................................................... 71
4.2.7 Consequences of disclosure....................................................................................................................... 72
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4.2.8 Participants recommendations ................................................................................................................... 72
4.3 THEORIES OF HIV DISCLOSURE ............................................................................................................ 73
4.3.1 Disease progression ................................................................................................................................... 73

4.3.2 Theory of competing consequences ........................................................................................................... 74
4.3.3 Communication privacy management (CPM) theory .................................................................................. 74
4.4 COMMUNICATION PRIVACY MANAGEMENT (CPM) THEORY AND DISCLOSURE OF HIV

STATUS IN DISCLOSURE TO SEXUAL PARTNERS ............................................................................... 79
4.5 CONCLUSION............................................................................................................................................ 80
CHAPTER 5
CONCLUSIONS, RECOMMENDATIONS AND LIMITATIONS

5.1 INTRODUCTION ........................................................................................................................................ 81
5.2 MAIN FINDINGS ........................................................................................................................................ 81
5.2.1 Factors which relate to disclosure of HIV status to sexual partners ........................................................... 82
5.2.1.1 Impact of demographic characteristics ....................................................................................................... 82

5.2.1.2 HIV testing and its impact on disclosure ..................................................................................................... 83
5.2.1.3 Influence of pre-disclosure deliberations on disclosure .............................................................................. 84
5.2.1.4 The process of disclosure........................................................................................................................... 85
5.2.2 Factors influencing disclosure of HIV status to partners ............................................................................. 87
5.2.2.1 Reasons for disclosing HIV status .............................................................................................................. 87

5.2.2.2 Others focused ........................................................................................................................................... 88
5.2.2.3 Self-focussed .............................................................................................................................................. 88
5.2.3 Barriers to disclosing HIV status ................................................................................................................. 91
5.3 FINDINGS AND CONCLUSIONS IN RELATION TO THE CPM THEORY ................................................ 92
5.4 STUDY LIMITATIONS ................................................................................................................................ 97
5.5 RECOMMENDATIONS .............................................................................................................................. 97
5.5.1 Recommendations for evidence-based guidelines to enhance disclosure ................................................. 97
5.5.1.1 Recommendations from CPM theory privacy rule management criteria..................................................... 98

5.5.1.2 Recommendations for practice and health education............................................................................... 101
5.5.2 Recommendations for further research .................................................................................................... 101
5.6 CONCLUSON........................................................................................................................................... 102
LIST OF REFERENCES ........................................................................................................................................... 104

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List of tables Page
Table 3.1 Demographic data of the participants ................................................................................................... 36
Table 3.2 Summary of Theme 1: Reasons for HIV testing................................................................................... 39
Table 3.3 Summary of pre-disclosure deliberations .............................................................................................. 42
Table 3.4 Process of disclosure ............................................................................................................................ 45
Table 3.5 Factors influencing disclosure of HIV status ......................................................................................... 49
Table 3.6 Reasons against disclosing HIV status ................................................................................................. 51
Table 3.7 Initial reactions to disclosure ................................................................................................................. 54
Table 3.8 Consequences of disclosure ................................................................................................................. 56
Table 5.1 Findings based on CPM theory ............................................................................................................. 96
Table 5.2 Recommendations based on CPM theory .......................................................................................... 100

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List of abbreviations
AIDS Acquired Immune Deficiency Syndrome
ART Antiretroviral treatment
BAIS Botswana Aids Impact Survey
BBC British Broadcasting Corporation
CPM Communication privacy management
HAART Highly active antiretroviral treatment
HIV Human Immunodeficiency Virus
MRC Medical Research Council
NACA National Aids Coordinating Agency
PPP Public-Private-Partnership
SAT Southern African Aids Trust
UNISA University of South Africa
USA United States of America
WHO World Health Organization
1Y Yellow
2O Orange
3LG Light Green
4LB Light Blue
5DB Dark Blue
6DG Dark Green
7R Red
8P Purple
viii
List of annexures
Annexure A Research clearance certificate from UNISA Ethics Committee
Annexure B Permission letter from Ministry of Health, Botswana
Annexure C Permission letter from GMT Surgery
Annexure D Interview schedule
Annexure E Reflective diary
Annexure F Consent form – Setswana
Annexure G Consent form – English
Annexure H Field notes: an example
Annexure I Setswana interview script
Annexure J English interview script
Annexure K Data analysis illustration of interview script

CHAPTER 1
ORIENTATION TO THE STUDY
1.1 INTRODUCTION
This study aims to gain a deeper understanding of the reasons why Human
Immunodeficiency Virus (HIV) infected people in Botswana choose whether to tell or not
to tell their partners that they are HIV positive. Secrets exist because people decide to
keep private certain information about them. Disclosure of private information is likely to
be complex, and even more so in the context of disclosing one’s HIV status, which
involves sensitive, potentially life-threatening information and the stigma that can be
associated with the condition.
Disclosure of HIV status to sexual partners has increasingly gained prominence in

management of Human Immunodeficiency Virus/Acquired Immune Deficiency
Syndrome (HIV/AIDS). According to Simoni and Pantalone (2004:109), many public
health officials have shifted their HIV prevention methods from targeting populations at
risk of HIV infection to those infected with HIV. The thinking behind this policy is based
on the premise that if those infected with HIV disclose their status, then safer sex will
occur and lead to reduced HIV transmission. Norman, Chopra and Kadiyala (2005:1)
also observe that in some resource-limited settings, disclosure of HIV status is one of
the prerequisites for enrolment into national HIV programmes. In Botswana, the
National Aids Coordinating Agency (NACA) operates a “buddy system” whereby each
patient is encouraged to form a special bond with someone close, to enhance
adherence to HIV treatment. The patients therefore are urged to disclose their HIV
status to the buddy (Botswana’s high-stakes assault on AIDS 2002:4). Such a buddy
could be the partner of the HIV infected person.
In the past 8 to 10 years, there has been a lot of research on the concept of disclosing
HIV sero-positive status to sexual partners. There are, however, no recent qualitative
studies investigating disclosure of HIV status to sexual partners in Botswana.
1
This study therefore aimed to determine specific factors which could influence
disclosure or non-disclosure of HIV status to sexual partners among those infected with
HIV in Botswana. The study was prompted by the scarcity of qualitative studies
examining factors which influence disclosure of HIV status among people infected with
HIV, especially in Botswana.
1.2 BACKGROUND INFORMATION ABOUT THE RESEARCH PROBLEM
1.2.1 The source of the research problem
The ideas about the research problem have come from a variety of sources, including
personal experiences, working with young people in a religious establishment and
academic discussions with other health care professionals at the Botswana branch of
the Southern African HIV Clinicians Society, who also faced challenges of dealing with
problems arising from non-disclosure of HIV status to sexual partners. According to
Zuiderduin and Melville (2000:3), the concept of shared confidentiality was introduced
as part of the law in Botswana in 1999 through the Statutory Instrument number 77 of
1999. The authors indicate that the Botswana Medical Council (professional conduct)
regulations 1988 were amended in 1999 by inserting a new sub-regulation which
provides that “a person taking care of, living with or otherwise coming into regular close
contact with the patient shall be informed (by medical professionals) of such patient’s
medical condition where the said patient is suffering from a communicable disease or
has an infection which may be passed to such person if appropriate precautions are not
taken”. A person coming into regular close contact with an HIV infected person could be
their partner. This amendment has caused concern among human rights groups in
Botswana, who argue that the number of persons falling in “the close contact” category
could be unlimited and that this regulation might lead to abuse. There is also a concern
that the law, as it is, might reduce voluntary HIV testing, because if one does not go for
the test, then there is no requirement for one’s private information to be disclosed to
others.
2
1.2.2 Background to the research problem
In 2007, the Botswana government undertook the Botswana Aids Impact Survey III
(BAIS III), a study aimed at providing up-to-date information about the HIV/AIDS
pandemic in the country with respect to prevalence, incidence, knowledge, care and
support for people living with HIV/AIDS. Prevalence and incidence rates in the survey
were estimated by actually taking blood samples from more than 8 000 households. The
study (BAIS III 2008:3) estimated a country HIV prevalence rate of 17.6% and an
incidence rate of 2.89%, equating to an estimated total of 10 587 new HIV cases in
Botswana in 2008. The incidence rate of more than 10 000 new cases in a country with
a population of 1.6 million is a cause for concern which calls for measures to strengthen
the public health efforts to prevent HIV transmission.
This research is important for several reasons. The first HIV positive case in Botswana
was diagnosed in 1985 (WHO 2005:1). Twenty years later Botswana had the second
highest prevalence rate of HIV in the world, according to the (WHO 2005:1).New cases
of HIV infection are still high, as estimated by the BAIS III study. It is also interesting to
note that disclosure issues or rates were not even included as part of the outcomes of
the BAIS III study.
The Botswana government launched the MASA (meaning new dawn) national HIV
programme in 2002. This is a programme whereby a cocktail of antiretroviral drugs,
called the highly active antiretroviral treatment (HAART), is provided by the government
to treat those with HIV/AIDS. HAART suppresses HIV but does not eradicate it. This
form of therapy has been shown to increase life expectancy of AIDS patients (Crum,
Riffenburgh & Wegner 2006:196). Statistics compiled by the WHO (2005:1) show that
by October 2005, 55 829 people were receiving HAART in Botswana. While these
patients live longer and do not show the common signs and symptoms of AIDS, they
are still able to transmit the virus and can infect others. Kalichman and Nachimson
(1999:281-287) found in their study in America that men and women who did not
disclose their HIV status were also more likely to engage in unsafe sex.
Only one study on disclosure of HIV status to others done in Botswana was found in the
published literature. Wolfe, Weiser, Bangsbeng, Thior, Makhema, Dickinson, Mompati
3
and Marlink (2006:932) investigated disclosure of HIV status in 112 patients receiving
antiretroviral treatment (ART) in private clinics. The study respondents had to be over
the age of 18. Out of the 112 respondents, only 10 were under 30 years old. In this
study 94% of respondents reported keeping their HIV status secret from their
community; 69% withheld this information even from their family, while 12% had told no
one. This was a quantitative study.
Simoni and Pantalone (2004:110) reviewed 15 published studies which tried to find an
association between disclosure of HIV status and practising of safe sex. The evidence
they found was contradictory, with some studies suggesting that disclosure of HIV
status does not always lead to practice of safe sex (Serovich & Mosack 2003:78). Other
studies suggested that non-disclosure does not necessarily lead to unsafe sex, as some
HIV infected people may practise uninformed protection. (This is when they take
stringent precautionary measures to practise safe sex without telling their partners that
they are HIV positive) (Crepaz & Marks 2003:379). In some developed countries such
as the United States and some European countries, the law requires disclosure of HIV
status before engaging in sexual activities. Recently a German pop star was in court
charged with knowingly engaging in sexual practices with various partners without
disclosing her status to them (BBC One. 2010. The Ten o’clock News. 26 August 2010,
22:00).
The above background information shows that disclosure of HIV status is not an issue
in Botswana alone, but it is also a problem in developed countries.
Effective prevention efforts ought to involve and engage HIV infected people in a way
that they understand and closely identify with. Such efforts could bear fruit if they are at
a suitably tailored level. Therefore identifying the factors which those infected with HIV
consider important in their decision on whether to disclose their HIV status to others,
and incorporating such factors into HIV prevention policies and messages, could
reasonably be expected to help in HIV prevention efforts.
1.3 STATEMENT OF THE RESEARCH PROBLEM
The Botswana government introduced HIV treatment for all in 2002. With the availability
of free HIV treating drugs, more people will live longer and risk transmitting the virus to
4
others. This statement appears to be validated by findings from the Botswana Aids
Impact Survey III carried out in 2007 (BAIS III 2008:3), which estimates a national HIV
prevalence rate of 17.6% that was shown to peak among the 30-45 year age group at
around 40%. The survey also estimates an incidence rate of nearly 3%, which equates
to more than 10 000 new cases of HIV infection in 2008. Such a high incidence rate of
HIV infections in a developing country with limited resources is a cause for concern and
requires further urgent public health interventions to bring it down. Given that disclosure
of HIV status by HIV infected people is increasingly being adopted as one of the public
health strategies to reduce HIV transmission, it becomes critical to understand the
factors promoting or discouraging disclosure of HIV status if this strategy is to have an
impact on reducing HIV transmission.
1.4 PURPOSE AND OBJECTIVES OF THE STUDY
In order to gain more insight into the lived experiences of participants associated with
disclosure of HIV status to sexual partners, the following purpose and objectives were
stated:
1.4.1 Purpose of the study
The purpose of this study was to explore and describe the factors influencing disclosure
of HIV status to sexual partners by people infected with HIV in Botswana.
1.4.2 Study objectives
The objectives of the study were to
• explore and describe positive and negative factors which relate to the disclosure
of one’s HIV status to sexual partners
• provide evidence-based recommendations which could assist HIV infected

people in disclosing their HIV status to their sexual partners
5
1.5 SIGNIFICANCE OF THE STUDY
The expected benefits of this study can be divided into policy enhancement, practice
improvement and additional knowledge for scholarly research. Data from this research
will be locally generated and therefore more relevant to the setting of HIV prevention in
Botswana. It is also expected that it will improve use of resources by coming up with
relevant, evidence-based recommendations for addressing issues surrounding
disclosure of HIV status among those infected with the virus. It will also help inform
policy makers regarding the probable impact of adopting the strategy of HIV disclosure
as a public health measure when planning HIV prevention programmes. Information
from the study could help towards developing counselling tools to identify those likely to
encounter difficulties when faced with disclosing their HIV status, as part of both pre-
and post-HIV testing and counselling. The information could also be of help to those
responsible for setting curricula at institutions which train health care workers, especially
those working with vulnerable people in community-based health care services. The
research is also expected to highlight gaps in this area of research and add to the
existing body of knowledge by stimulating further research in this area.
1.6 DEFINITIONS OF KEY CONCEPTS
1.6.1 Disclosure: Theoretical definition
Greene, Derlega, Yep and Petronio (2003:5) define self-disclosure as a process which
consists of voluntary sharing of personal information between two individuals involved in
a social interaction, each with their own feelings, beliefs, attitudes and values.
The Southern African Aids Trust (SAT) identifies five types of disclosure. These are:
involuntary disclosure; voluntary disclosure; full disclosure; partial disclosure; and non-
disclosure. Involuntary disclosure happens when someone else reveals someone’s HIV
status without their approval or even their knowledge. Voluntary disclosure defines
disclosure which occurs when clients share information about their HIV status with
others; it may be full or partial. Full disclosure is defined as a type of voluntary
disclosure whereby the client reveals their HIV status to a person or organisation such
as a family member, support organisation or the media. Partial disclosure is defined as
6
disclosure which occurs when the client will only tell certain people, such as a partner or
spouse, about the HIV status. Non-disclosure occurs when the client does not reveal
the HIV status to anyone (SAT 2004:1).
1.6.2 Disclosure: Operational definition
For purposes of this study, the concept of disclosure was used to describe voluntary,
partial disclosure whereby the HIV infected individual voluntarily reveals their HIV status
to their sexual partner after sexual contact has occurred.
1.6.3 Sexual partner
Sexual partner (also referred to as partner in this study) is taken to mean a person with
whom there is engagement in acts of sexual nature including voluntary sexual
intercourse within or outside of a committed relationship.
1.7 FOUNDATIONS OF THE STUDY
1.7.1 Theoretical framework
Three theories which have been advanced to explain the behaviour involved in
disclosure of HIV status have been identified in the literature. These theories and their
applicability will be discussed in more detail in chapter 4.
1.7.1.1 Theory of disease progression
Serovich (2001:356) cites Babcock and Kalichman, who indicate that the premise of this
theory is that individuals disclose their HIV diagnosis as they become ill because as the
illness progresses they can no longer keep it a secret.
7
1.7.1.2 Theory of competing consequences
According to the consequences theory, the relationship between disclosure and disease
progression is moderated by the consequences one anticipates resulting from
disclosure (Serovich 2001:356). It postulates that as the disease progresses,
evaluations of likely outcomes of disclosure take place; disclosure then occurs once
rewards outweigh costs.
1.7.1.3 Communication privacy management (CPM) theory
This is a theory initially postulated by Petronio in 2004, which examines why people
make decisions about revealing or not revealing private information about themselves.
Petronio (2004:196) first thought of privacy as the key to understanding disclosure and
looked at disclosure from two aspects: content and process. The theory assumes a
mutually exclusive relationship between disclosure and privacy, whereby one cannot
exist without the other.
1.8 THE RESEARCH METHODOLOGY
1.8.1 Research design
Babbie (2007:87) defines research design as a plan which details and determines how
the research is going to be carried out. This study will be in the form of an exploratory
and descriptive qualitative design, which will be described in more detail in chapter 2.
1.8.2 Study population
Population is defined as the entire aggregation of cases in which the researcher is

interested (Polit & Beck 2008:237). The study population is made up of people infected
with HIV attending the selected private medical clinic in Gaborone, Botswana.
8
1.8.3 Sample and sampling technique
Polit and Beck (2008:338) define sampling as the process of selecting a portion of the
population to represent the entire population so that inferences can be drawn.
The sampling technique used in this study was a non-probability, purposive sampling
technique based on the eligibility criteria set for the study (see chapter 2).
1.8.4 Method of data collection
Burns and Grove (2005:539) describe data collection as a precise and systematic
gathering of information which is relevant to the research purpose, objectives and
questions. Data collection can therefore be seen as a means to achieve the objectives
of the study and fulfil the purpose of the study. Data may be structured or unstructured.
In this study, unstructured interviews were used as the main method of data collection.
This was augmented by field notes (see annexures H) and a reflective diary (see
annexure E).
1.8.4.1 The interview schedule
The interview schedule contained a grand tour question to the participant and the study
objectives (see annexure D). There were no further pre-set questions. The researcher
used probing questions as the discussion evolved. The responses and conversation
that followed were all tape recorded.
1.8.4.2 Field notes
Data collected during interviews were augmented by field notes, which were also used
as part of the data analysis (see annexure K).
1.8.5 Method of data analysis
Qualitative data analysis, which involves the non-numerical examination and

interpretation of observations for the purpose of discovering underlying meanings and
9
patterns of relationships was undertaken (Babbie 2007:378). Detailed description of
data analysis will be provided in chapter 3.
1.8.6 Ethical considerations
This research collected information about people’s backgrounds, knowledge, attitudes

and behaviour. The researcher was interacting with human subjects whose human
rights and privacy had to be protected. The Medical Research Council (MRC) of South
Africa promotes the four main principles of biomedical ethics. These are:
• Autonomy (respect for the person – a notion of human dignity)

• Beneficence (benefit to the research participant)
• Non-maleficence (absence of harm to the research participant)
• Justice, which refers to equal distribution of risks and benefits between
communities (South Africa (Republic) 2000:para 1.3.1)
Throughout the study these ethical principles were observed. In addition, scientific
honesty was held in the highest esteem, with unexpected or negative results given the
same priority in data analysis and interpretation as positive results.
1.9 STRUCTURE OF THE DISSERTATION
This section gives an outline of the organisation of the report.
Chapter 1
Chapter 1 introduced and gave an overview of the study.
Chapter 2
Chapter 2 will discuss the methodology to be followed in the study.
Chapter 3
In this chapter a presentation of results and analysis of data from the study will be
undertaken.
10
Chapter 4
This chapter discusses and reviews the literature on the concept of disclosure based on
previous studies exploring this concept.
Chapter 5
The final chapter will discuss the results, come up with conclusions, identify study
limitations and suggest further areas of research on disclosure of HIV status.
1.10 CONCLUSION
Disclosure of HIV status has been put at the forefront of the fight against transmission of
HIV. Public health specialists have switched prevention measures from targeting those
at risk to those who are already infected. This is due to the belief that increasing rates of
disclosure of HIV status will result in safer sexual behaviour and reduction in HIV
transmission rates. Any studies exploring reasons why people disclose or do not
disclose their HIV status have mainly been done among adults in developed countries.
No qualitative studies directly exploring reasons for disclosure and non-disclosure to
sexual partners by people infected with HIV in Botswana have been identified. This
chapter has introduced the study by looking at the purpose, objectives and significance
of such a qualitative study. The next chapter will discuss the methodological aspects of
the study.
11
CHAPTER 2
RESEARCH METHODOLOGY
2.1 INTRODUCTION
This chapter introduces and elaborates on the methodological aspects which were used
to conduct the study in order to meet the research objectives. Aspects of the
methodology such as research design, sampling technique used, data collection
methods and proposed methods of data analysis are discussed, as well as ethical
considerations undertaken during the research.
2.2 PURPOSE AND OBJECTIVES OF THE STUDY
The purpose of this study was to explore and describe the factors influencing disclosure
of HIV status to sexual partners by people infected with HIV in Botswana.
The objectives of the study were to

2.3 RESEARCH CONTEXT
This section describes the research setting and the context within which the study took
place.
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2.3.1 The context
Botswana is a landlocked country in sub-Saharan Africa with an estimated population of

1 882 000 in 2007 (UNAIDS/WHO 2008:4). The capital city is Gaborone, where the
study was conducted. The country has an estimated HIV prevalence rate of 23.9%; 280
000 adults 15 years and over and 15 000 children under the age of 15 are infected with
HIV/AIDS (UNAIDS/WHO 2008:4-16).
2.3.2 The setting of the study
The study was conducted among a population of people infected with HIV attending a
selected private clinic in Gaborone, Botswana. The clinic was chosen as a population
base for several reasons. The research topic was first conceived while the researcher
worked at the clinic. The researcher and other clinicians in the area had experienced
ethical dilemmas resulting from non-disclosure of HIV status to sexual partners.
Observations were made which indicated that older, married HIV-infected men were
fathering children with younger girls who were unaware of the men’s HIV status. The
clinic was also chosen because it provides health care services to a wide area of the
city and to patients from varied social backgrounds and therefore provides the
opportunity for collection of the kind of rich information that the study aimed to obtain.
Some of the participants in this study belong to the Public-Private-Partnership (PPP).

The partnership came about as a government initiative to relieve congestion in the
government facilities and to reduce waiting times for access to HIV treatment and care.
The public patients have all their HIV care needs paid for privately by the government.
Most of the patients are either unemployed or in low-paid jobs and could not otherwise
afford the HIV treatment and care.
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2.4 RESEARCH DESIGN
Babbie (2007:87) defines a research design as a plan which details and determines
how research is going to be carried out. This study was in the form of an exploratory
and descriptive qualitative design.
2.4.1 Qualitative approach
According to Burns and Grove (2005:747), qualitative research is a systematic,

interactive subjective approach used to describe and give meaning to life experiences.
Being diagnosed with HIV infection is a traumatic event which dictates that some life-
changing decisions have to be made. One of those decisions is whether to disclose
one’s HIV status to others.
The qualitative approach is the one most suited to studying the phenomenon of
disclosure, because, as mentioned by Polit and Beck (2008:56), the information
gathered in qualitative studies is in the form of narrative descriptions which may help to
gain deep understanding of human experiences. The qualitative approach enabled
participants to describe their experiences in real terms and in great detail. It also
enabled the researcher to interact with, probe and observe participants in a setting
familiar to them.
There are several qualitative research traditions, including grounded theory,

phenomenology and ethnography. The phenomenological approach was used in this
study.
2.4.2 Phenomenology
Polit and Beck (2008:64) describe phenomenology as a qualitative research approach

used to gain an understanding of what life experiences of people are like and the
meaning of a phenomenon to those who experience it. Burns and Grove (2009:54)
reinforce this definition by indicating that the purpose of phenomenological research is
to capture the lived experiences of participants. The researcher considered this the
most suitable approach because it allowed people infected with HIV to describe their
14
experiences associated with the phenomenon of disclosure of their HIV status in detail.
Some of the experiences described and the emotions associated with the descriptions
left a lasting impression in the researcher’s mind. Burns and Grove (2009:55) go on to
argue that phenomena occur only when there is a person who personally experiences
the phenomenon and that the language used by people in a phenomenological
approach study helps to illuminate the nature of the phenomenon of interest.
2.4.3 Exploratory design
Exploratory studies are used to gain insight into situations, phenomena, communities or
persons (De Vos, Strydom, Fouche & Delport 2005:134). Babbie (2007:88) describes
exploratory studies as those which researchers can use to familiarise themselves with
the topic, or to develop a new interest in a topic. Exploratory studies also give
approximate answers to questions about persistent phenomena by finding out why
things occur the way they do. By adopting an exploratory approach the researcher was
able to gain more insight into the lived experiences of HIV infected participants asso-
ciated with disclosure of their HIV status.
2.4.4 Descriptive design
According to Babbie (2007:89), descriptive studies are those used to describe situations
and events. Descriptive studies tend to use small samples, which help in examining
research situations in more depth (Burns & Grove 2005:356). A descriptive study was
therefore suitable for this research because the study aimed to understand and describe
the experiences of people infected with HIV associated with disclosure of their HIV
status to their sexual partners. The participants voluntarily described their experiences
following disclosure in detail during the interviews.
2.5 POPULATION
A population is defined as the entire aggregation of cases in which the researcher is

interested; it may be as narrow as possible or may be broadly defined (Polit & Beck
2008:237). This study population was made up of patients infected with HIV attending a
private medical clinic in Gaborone, Botswana.
15
2.6 SAMPLE AND SAMPLING
This section describes the process of sampling as undertaken in this study including
sample size, sampling technique and the eligibility criteria used to select the sample.
2.6.1 Sample size
According to Patton (2002) in De Vos et al (2005:328), there are no rules for sample
size in qualitative studies. Qualitative research involves looking deeply at a few things
rather than looking at the surface of many things. It therefore involves studying and
looking at few individuals, sometimes just one person (Litchman 2009:17).
Burns and Grove (2009:361) assert that the number of participants in a qualitative study
is adequate when saturation of information is achieved in a study area. Saturation of
data occurs when additional sampling provides no new information. The sample size in
this study was therefore determined by saturation of data collected. A total of nine
interviews from participants who met the eligibility criteria were completed successfully
during the study.
2.6.2 Sampling
Polit and Beck (2008:338) define sampling as the process of selecting a portion of the
population to represent the entire population so that inferences can be drawn. However
in qualitative studies, sampling occurs subsequent to clearly establishing the
circumstances of the study, according to De Vos et al (2005:328).
There are two main approaches to sampling: probability and non-probability

approaches. The non-probability approach is used in qualitative studies, as it does not
aim to produce a statistically representative sample or draw statistical inferences
(Wilmot 2007:2). This approach also tends to rely on availability of subjects (Babbie
2007:183). The non-probability approach was used to select participants for this study,
using the purposive sampling technique.
16
2.6.2.1 Purposive sampling technique
This is a sampling technique whereby the units to be observed are selected on the
basis of the researcher’s knowledge of the population, its elements and the purpose of
the study (Babbie 2007:184). This sampling technique was chosen because the
researcher had a good working knowledge of the population under study and
anticipated that the study participants would be able to provide the type of information
required to meet the study objectives. Purposive sampling is used when researchers
want to obtain in-depth understanding of a complex experience or event (Burns & Grove
2009:355).
Disclosure of HIV status by HIV infected people to their sexual partners is considered a
complex experience, the depth of which could be more appreciated and understood by
interviewing those who have lived it. Participants in this study were therefore
purposefully selected.
2.6.2.2 Eligibility criteria
Eligibility criteria are the criteria designating the specific attributes of the target
population by which people are selected for inclusion in a study (Fink 2003:35). To be
included in this study the participants had to meet the following eligibility criteria:
• Aged between 18 and 39

• Male or female
• Being in a relationship with at least one sexual partner
• Having disclosed their HIV status to their sexual partners
• Regularly utilising the index private clinic from which the population was taken as
the health facility providing their HIV treatment
In this study the senior doctor in the clinic facilitated entry to the research setting and
access to the population. Once access was gained to the population, the process of
collecting data was embarked upon.
17
2.7 DATA COLLECTION
This section will give a detailed description of the approach and processes used to
collect information relevant for the study purposes from participants who met the
eligibility criteria. Burns and Grove (2005:539) describe data collection as a precise and
systematic gathering of information which is relevant to the research purpose,
objectives and questions.
2.7.1 Data collection approach
In research studies, information can be collected in structured or unstructured form. An

unstructured in-depth interview approach was used to collect the information in this
study. The in-depth interviews were complemented by field notes (see annexure H).
This study did not utilise a specific data collection instrument because, according to
Litchman (2009:16), the researcher in qualitative research is the primary instrument of
data collection and analysis. The researcher was therefore the primary data collection
instrument in this study. A tape recorder was used to capture the content of the in-depth
interviews.
2.7.1.1 Unstructured in-depth interview
Polit and Beck (2008:392) describe a completely unstructured approach to data

collection, whereby the researcher begins by asking a broad question, called the grand
tour question, relating to the topic. Subsequent probing questions are then more
focused and guided by the responses to the broad question. An interview schedule was
used which contained the grand tour question and study objectives to help the
researcher to explore all relevant information without losing focus on the study
objectives (see annexure D).
In-depth interviews are research techniques used to elicit a vivid picture of the
participant’s perspective on the research topic (Mack, Woodsong, MacQueen, Guest &
Namey 2005:29). In-depth interviews are also effective for getting people to talk about
their personal feelings and experiences as well as addressing sensitive topics (Mack et
al 2005:30). An unstructured in-depth interview therefore combines the openness and
18
freedom afforded by the unstructured approach with talking to the participant and
delving deeper into the issues being researched, which enhances a fuller understanding
of the issues. The in-depth interviews conducted by the researcher in this study enabled
her to gain a deeper understanding of the experiences lived by HIV infected participants
following disclosure of their HIV status to their partners. In-depth interviews with the
study participants were preceded by a pilot interview.
2.7.1.2 Pilot interview
The researcher conducted one pilot interview before commencing the actual study
interviews. A person infected with HIV but not within the study sample was interviewed
at her home. This helped the researcher to identify deficiencies in the researcher's
interviewing skills; check that the tape recorder to be used during in-depth interviews
was in working order; estimate the probable length of interview; and pre-empt any
logistical problems that could potentially arise during the main interviews. The pilot
interview highlighted the difficulties of conducting interviews at home. There were
several disruptions including a baby crying, neighbours passing by to say hello and a
mobile phone ringing several times. Following the pilot interview, the researcher
welcomed participants’ choice of attending the interviews away from their homes. No
problems were identified with the equipment.
2.7.1.3 Field notes
Data collected during interviews was augmented by field notes, which were also used
as part of the data analysis (see annexures H and K). The field notes represent the
researchers’ efforts to record information synthesise and understand the data that they
have collected (Burns & Grove 2009:405) The field notes helped the researcher to
capture and describe the non-verbal cues observed during the interview and use the
information to give a complete representation of each interview. The field notes were
written down as soon as possible following completion of the in-depth interviews
because, as observed by Burns and Grove (2009:408), delays in recording field notes
could result in some of the information being forgotten or distorted, which could affect
the internal validity of the study. Very little writing was done during the interview
recording in order to maintain eye contact and observe non-verbal cues as much as
19
possible, but it was done soon afterwards.
2.7.2 Data collection process
The data collection process describes the various steps followed by the researcher in
the field, which enabled data collection to take place. Data was collected at a private
medical clinic in Gaborone, Botswana, from 20 July to 31 July 2009. This was a location
chosen by participants as they felt it afforded them privacy, familiarity and comfort,
given the nature of the research topic to be discussed.
A total of two working weeks were required to complete data collection. The first week
was spent gaining access to the population, making initial contact by telephone and
conducting the pilot interview. During each contact via telephone, issues relating to
purpose of the study, informed consent and ethical considerations such as voluntary
participation were discussed. Twenty-five participants were initially contacted by phone.
Seventeen initially agreed to participate; however, when dates for interviews were set,
four participants indicated that they could not participate, giving various reasons
including family bereavements, unforeseen travel plans and change of heart. Three
participants indicated that they would be willing to take part at a later stage if needed.
The researcher therefore decided to proceed, with the provision that she could contact
more potential participants as the study progressed if the need arose.
Participants were given the opportunity to ask questions regarding the study at each
contact. The second week consisted mainly of recording in-depth interviews and
completing field notes. Following the initial telephone contact, the participants were
contacted by the researcher the day before the interview and on the morning of the
interview by phone to check that they were still available, and also to obtain further
verbal consent. Only one participant became unavailable on the day, owing to
unforeseen work commitments.
Each participant arrived at the clinic a few minutes before the agreed time on the
scheduled day of their interview. They were shown to the interview room by the
researcher. Face-to-face introductions and pleasantries were exchanged to make
participants relax and feel welcome. The researcher then introduced the topic by briefly
20
summarising the aim and objectives of the study to ensure that the participant
understood these and was still willing to participate in the study. Participants were also
informed of the availability of a counsellor should they find interviews provoked feelings
of anxiety or distress.
Written consent was then obtained at the start of the interview. Participants were given
time to read the consent form and ask questions first. Consent forms could not be sent
to participants earlier because most participants preferred their home addresses to
remain anonymous for purposes of the study. Their confidentiality was therefore further
protected. Consent was completed by participants signing the consent form. Once
written consent had been obtained, the tape recorder was switched on, signalling the
formal beginning of the interview (see annexures F and G).
The grand tour question was introduced, which was as follows: Tell me about your
experiences, feelings and thoughts about disclosing your HIV status to your
partner. The responses and conversation that followed were all tape recorded. Where
necessary, responses were followed up with probing questions for clarification and
further exploration of the issues raised by participants. Non-verbal cues were observed
and later noted as field notes. The duration of the interviews ranged from thirty minutes
to one and a half hours. Water, tea or coffee and comfort breaks were provided to the
participants as required.
2.8 DATA ANALYSIS
Lacey and Luff (2007:6) describe data analysis as a process by which researchers
describe and summarise accumulated information generated by interviews or
observations to look for relationships between various themes identified; relate
behaviour or ideas to specific characteristics of participants; and even develop trends
and patterns from the analysis. The process begins while still in the field through
emergence of ideas for making sense of the data (De Vos et al 2005:336).
21
Lacey and Luff (2007:3-4) describe several stages of data analysis in qualitative
research, some of which were used to guide data analysis in this study, as follows:
• Familiarisation with data through reading, review and listening

• Transcription of tape-recorded material
• Organisation and indexing of data for easy retrieval and identification
• Making sensitive data anonymous
• Coding
• Identifying themes
• Re-coding
• Development of provisional categories
• Exploration of relationship between categories
• Refinement of themes and categories
• Development of theory and incorporation of pre-existing knowledge
• Testing of theory against data
• Report writing, including excerpts from original data if appropriate
The data analysis in this study was guided by following the relevant steps as described
by Lacey and Luff (2007:3-4) above.
2.8.1 Familiarisation with the data
Familiarisation with the data occurs through review, reading and re-reading of
transcripts and listening to tapes of recorded material, making memos and summaries
before the data is coded (Lacey & Luff 2007:23). This process began during data
collection by listening to tape-recorded interviews and reading the field notes after each
interview. In this study the familiarisation process continued during and after
transcription and translation of recorded interviews. All the nine eligible interviews in
Setswana and English were read in conjunction with listening to the corresponding tape-
recorded interviews and then reread several times until the researcher felt familiar with
each interview.
22
2.8.2 Transcription
This involved the researcher transcribing recorded interviews verbatim into written text
to prepare the data for analysis. The interviews were conducted and recorded in
Setswana, the language spoken by all the participants and the researcher. Although
participants preferred the English version of the consent form, they spoke in their native
language during interviews. This was not entirely surprising to the researcher, as
participants felt comfortable expressing themselves in their own language.
The interviews were transcribed directly in Setswana, which was the language used in
the recordings. Then they were translated from Setswana to English by the researcher.
This was aimed at reducing transcription errors, which can take the form of deliberate
alterations of data; accidental alterations of data and unavoidable alterations (Polit &
Beck 2008:509). The translation also had to take into account the context in which the
words were spoken and the non-verbal cues from the field notes accompanying them in
order to maintain an accurate representation of the interview.
Each interview was therefore made up of three sets of data, each given a descriptive
label, such as Interview number one, then 1Es for Setswana and English version and
1E for English-only version. For quality control purposes, two Setswana interviews were
also sent off to a Setswana-speaking secondary school teacher who was very
experienced in translating between Setswana and English. There were no significant
differences between his translation and the researcher’s translation. The process of
transcription and subsequent translation took several months to complete due to the
volume of data involved, identifying of the second translator and getting feedback from
him.
2.8.3 Organising data
This is a method of classifying and indexing the data to enable easy access to parts of
the data when required. Polit and Beck (2008:509-510) describe the process as
essentially reducing the data to more manageable units so that data can be retrieved
and reviewed. After transcription and translation of interviews, an inventory of the data
available was undertaken. Three computer file folders were then created. One folder
23
contained Setswana interview transcripts, the second folder contained interview
transcripts in both Setswana and English; and the third folder contained English-only
transcripts.
The English transcripts were printed out and attached to each corresponding set of
handwritten field notes. This paved the way for easy retrieval of transcripts and
familiarisation with the data. Burns and Grove (2009:206) advise that all raw data
collected for the study should be coded so that the participant’s identity is not revealed.
The study participant’s details should also not be revealed when the study is reported or
published, and all data collected should be stored securely and not shared with any
other person without permission being given by the study participant.
In this study the original interview tapes were stored securely and would be destroyed
once the study was fully completed. Once the researcher became well acquainted with
the interview transcriptions, only English transcriptions were focused on. Notes of ideas
that occurred to the researcher while reading the transcripts were made in the margins
of the printed transcriptions. Each interview was also correlated with the accompanying
field notes.
2.8.4 Coding
Marshall and Rossman (1999) in De Vos et al (2005:338) describe coding data as the
formal representation of analytic thinking. Babbie (2007:385-386) identifies three types
of coding: open coding, axial coding and selective coding. During open coding, data is
broken down into discrete parts, closely examined, then compared for similarities and
differences (Babbie 2007:385). The following coding steps described by Lacey and Luff
(2007:7) were adapted and used for coding interviews from this study:
• Open coding
• Delineation of emergent concepts
• Conceptual coding (using emergent concepts)
• Refinement of conceptual coding schemes
• Clustering of concepts to form analytical categories
24
• Core categories leading to identification of major themes
• Testing of emerging themes by reference to other research (literature control)
2.8.4.1 Open coding and delineation of emergent concepts
Common concepts of everyday life were identified and examined in relation to context,
meanings and circumstances surrounding disclosure of HIV status to partners by those
infected with HIV. Open coding allowed for breaking up of the data into meaning units.
From reading the interviews it became clear that participants started their interviews by
narrating circumstances leading to their finding out that they were infected with HIV.
They all seemed to want to lay a background to the circumstances leading up to
disclosure. One of the initial codes was therefore the concept of prelude. Words,
phrases and paragraphs describing this concept (meaning units) were colour coded the
same in all the interviews where this was expressed.
Participants also used a variety of words and phrases to describe their varying
experiences during disclosure to their partners. The concept of disclosure as a process
emerged. The participants went on to give vivid narratives of their experiences after
disclosing to partners. The idea of a post-mortem as a concept, describing experiences
after disclosure, also emerged. During coding, the researcher considered the people
involved in each participant’s narrative; the events; language used; the quotations;
expressed emotions and non-verbal cues from field notes. The concepts which
emerged were very general and therefore needed further exploration.
2.8.4.2 Conceptual coding and refinement of conceptual coding schemes
The concepts identified during open coding as well as the words describing them were
explored and analysed further to look for more insight into their meanings. For example,
analysing the concept of prelude above showed that there were matters of concern to
participants which made them think of going for the HIV test and therefore coming to
know that they were infected. Such matters included health concerns; family planning
issues and information available to participants. Exploration, reflection and comparison
of similarities and differences within the initial concepts resulted in breaking down of the
general concepts, recoding and refining them, then organising them into similar clusters,
25
leading to emergence of broad categories. The categories therefore comprised
concepts with similar meanings. Conceptual saturation was deemed to be reached
when no new categories could be generated.
2.8.4.3 Categories and subcategories
Further analysis and comparison of the categories indicated that the categories
contained further meanings within themselves. Within these categories, convergence
and divergence of opinions, beliefs and experiences between participants were
identified. The categories were therefore re-coded, leading to emergence of
subcategories. Similar categories and their subcategories were then grouped together
to form major themes.
2.8.4.4 Identifying themes
A theme is an abstract entity that brings identity to a current experience and its variant
manifestations (Polit & Beck 2008:515). Eight themes emerged following data analysis
and coding as described in the preceding section. Each theme was allocated a number
and letter code. Themes identified were: reasons for HIV testing (1Y); pre-disclosure
deliberations (2O); process of disclosure (3LG); reasons for disclosing (4LB); reasons
against disclosing (5DB); initial reactions to disclosure (6DG); consequences of
disclosure (7R); participants’ recommendations (8P). The letters in brackets denote
colour codes given to these themes.
A discussion of the main themes, categories and sub-categories that were obtained
during data analysis will be presented in chapter 3.
The stages of data analysis described above did not proceed in a linear fashion but
involved frequent revisiting of raw data in the light of new emerging ideas. To enhance
the trustworthiness of the study, the services of a co-coder were employed. He is a
researcher experienced and qualified in the field of qualitative and quantitative research.
Themes were then used to provide a full description of the experiences and factors
influencing disclosure of HIV status to sexual partners by those infected with HIV.
Validation of themes which emerged from the data was done by making comparisons
26
with data from existing literature through a literature control.
2.8.4.5 Literature control
The timing and purpose of the literature review depends on the type of study. Burns and
Grove (2009:91) indicate that literature review in phenomenological studies is best done
after data collection and analysis so that it does not affect the researcher’s openness.
The literature control for this study was done after data analysis. It was used to inform
the study conclusions and to compare findings from this study with those from the
literature regarding the phenomenon of disclosure of HIV status to sexual partners.
2.9 TRUSTWORTHINESS OF THE STUDY
The essence of soundness of qualitative research is captured by Marshall and

Rossman (1999) in De Vos et al (2005:345), who identify canons which stand as criteria
that qualitative research must meet if it is to be deemed trustworthy. Polit and Beck
(2008:540) suggest five criteria for developing trustworthiness (validity and reliability) of
qualitative research, based on a Lincoln and Guba framework (1985). These are
credibility, dependability, confirmability, transferability and authenticity.
2.9.1 Credibility
The goal of credibility is to demonstrate that the study was conducted in a manner
which ensures that the subject was accurately identified and described (De Vos et al
2005:346). In this study, which aimed to explore and describe factors influencing
disclosure of HIV status, the researcher stated and described the parameters of the
study setting clearly, including population; social groupings; process of data collection
and analysis; and also undertook a literature control to enhance credibility of the study
findings. The researcher also established a relationship with participants before the day
of the interview by talking to them telephonically about the study and also about general
issues before the day of the interview.
On the day of the interview, the researcher allowed each participant to accompany her
to the kitchen to make refreshments before the interview began if they wished. The
27
interview recording was only started when the participants felt ready, as some of them
could be put off by the recording. The researcher also spent time with participants after
the interview if they were not in a hurry to go, talking about general matters such as the
weather. This was to show participants that they were not just a number in a research
study, but were regarded as respected members of society who could have opinions
about other issues outside the world of HIV.
Participants were also patients at the clinic where the researcher had worked
previously. These factors helped establish prolonged engagement with the study
participants. During interviews, the researcher carried out meaning checks by reflecting
statements back to participants and asking for clarification where necessary to ensure
correct understanding of the meaning of the statements.
2.9.2 Dependability
Dependability refers to stability or reliability of the data over time and over conditions
(Polit & Beck 2008:539).Their observation is that credibility cannot be achieved without
dependability, just as validity in quantitative research cannot be achieved without
reliability. In this study, data was collected under neutral settings without manipulation
by the researcher. Other authors, however, raise concerns about the assumption of an
unchanging world that seems to be at odds with the interpretative/qualitative
assumption that the social world is always being constructed (De Vos et al. 2005:346-
347).
In the context of HIV disclosure it is possible that perceptions and experiences of people
infected with HIV will change over time, depending on advances in areas such as
treatments and diagnostics. Dependability would therefore have to be defined taking
into consideration such changes. In this study the advent of antiretroviral treatment with
improved life expectancy appears to have impacted on participants’ experiences and
decision to tell their partners. In this study, the researcher ensured dependability by
collecting, recording, transcribing and translating information as accurately as possible.
28
2.9.3 Confirmability
According to Polit and Beck (2008:539), this concept is concerned with establishing that
the information participants provided and the interpretations of those data are not
figments of the researcher’s imagination. It is a test of traditional objectivity (De Vos et
al 2005:347). To enhance objectivity to external readers, the researcher’s perspective in
terms of views, perceptions and assumptions that could influence the research findings
were acknowledged and included in the form of a reflective diary in reporting of results.
In her study on the influences on the data of the multiple identities occupied by a career
researcher in qualitative interviews, Gunasekara (2007:464) concludes that researchers
may assume multiple identities in the field which are fluid and changing and may
influence what data is collected and how.
In this study participants were aware of the researcher’s occupation. The researcher
was now wearing identities of a student, a researcher and doctor. It is possible that
these identities may have interacted with one another to influence the data collected.
The researcher used the practice of bracketing to reduce the influence of any prior
experiences or perceptions regarding disclosure of HIV status. The raw data is available
on tape, as are the original transcripts in both Setswana and English, so that they are
accessible for confirmation. The input from academic supervisors also added to the
study’s confirmability. The study limitations have also been recognised and
acknowledged in the final chapter.
2.9.4 Transferability
Transferability refers to ability to generalise research findings to other settings or groups

(Polit & Beck 2008:539). De Vos et al (2005:346), however, argue that this could be
problematic for the qualitative researcher. They suggest that the researcher can counter
this by providing as much information as possible about the context of the research so
that other people can evaluate it and decide whether it applies to their contexts.
Triangulation is suggested as another method of enhancing transferability. Triangulation
means gathering and analysing data from more than one source to gain a fuller
understanding of the situation under investigation (Lacey & Luff 2007:27).
29
Campbell and Fisk (1959) in Burns and Grove (2009:231) indicate that triangulation can
be said to be present if two or more of the following methods have been used: theories,
data collection methods, data sources, investigators or data analysis methods during
the study of a phenomenon. In this study the following were undertaken to achieve
triangulation: two data collection methods using in-depth interviews and field notes, two
coders, a reflective diary and literature control.
2.9.5 Authenticity
Authenticity refers to the extent to which researchers fairly and faithfully show a range of
realities by conveying the feeling and tone of participant’s lives as they are lived (Polit &
Beck 2008:540). To demonstrate this criterion, the researcher has included some direct
quotations from participants’ interviews, accompanied by background information such
as time of the day, facial expressions and other non-verbal cues during data analysis
and results presentation.
The trustworthiness of this study has therefore been enhanced by paying attention to
factors which influence credibility, transferability, dependability, confirmability and
authenticity as these are recognised building blocks of trustworthiness of a qualitative
study
2.10 ETHICAL CONSIDERATIONS
According to Babbie (2007:62), Webster’s New World Dictionary defines ethics as

conforming to the standards of conduct of a given professional group. Five main ethical
agreements in social research are identified. These are voluntary participation, informed
consent, anonymity and confidentiality, deception, analysis and interpretation of data.
2.10.1 Voluntary participation
Voluntary participation occurs when research participants take part in the research of
their own free will, knowing the potential risks and benefits of participation. According to
this principle, participants should be informed of their right to opt out of participating in a
30
study should they wish to do so. This is particularly pertinent in this research, as it
potentially involves patients who attend the clinic for their HIV-related care and may feel
they have to take part in the research so that their care is not adversely affected by non-
participation. None of the participants expressed this concern. Those who opted out
cited other reasons such as busy schedules as reason for not participating.
2.10.2 Informed consent to participate
The participants were given a written informed consent form which explained the nature
of the research, risks and benefits to them, reasons for the study and how the
information collected would be used (see annexures F and G).
Participants were also afforded the opportunity to ask questions about any issues they
were not clear about concerning the study, at the initial telephone contact, during the
interview itself and following the interview. This ensured that participants gave informed,
understanding consent. They were provided with the researcher’s contact details to
facilitate informed written consent.
2.10.3 Anonymity and confidentiality
Anonymity is guaranteed when both the researcher and the people who read the
research cannot link a given response to a particular respondent (Babbie 2007:64). In
this study, participants have been identified by codes and no personal details other than
general demographic data such as age and relationship status were included in the
study.
Confidentiality occurs when the researcher can identify a given person’s responses but
promises not to do so publicly (Babbie 2007:65). It was unlikely that this would be
necessary in this study, as no names or addresses were collected during the study, but
if the need should arise then participant’s confidential details would remain protected.
Although the senior doctor at the clinic facilitated initial access to the population, he did
not know which of the patients eventually became the study participants.
31
Confidentiality and anonymity were maintained by coding data collected from
participants to protect their identity. There will be no sharing of data beyond the purpose
of the study. The participants’ identity will not be revealed while the study is being
conducted, reported and published.
2.10.4 Deception
Babbie (2007:67) describes deception as occurring when researchers do not say why
they are doing the research and for whom. He argues that lying about research
purposes raises serious ethical questions. In this study the informed consent form
covered the purpose of this research and why it was being done. Further clarification
was provided at the start and at the end of the interviews. Providing clarification at the
end of the study gave participants who had disclosed sensitive information to the
researcher the opportunity to withdraw consent even at that stage.
2.10.5 Analysis and reporting of data
Babbie (2007:69) contends that researchers should be familiar with the technical
limitations of the study and report these to the readers. Unexpected and negative
findings should also be reported. Limitations of this study will be discussed in detail in
section 5.4.
2.10.6 The Medical Research Council (MRC) ethics
This research involves patients in a medical setting for purposes of completing a

master’s dissertation which will be awarded by the University of South Africa (UNISA).
The research is therefore approved by UNISA Research Ethics Committee (see
annexure A) and governed by the South African MRC code of conduct and ethical
guidance. Permission to conduct the study in a particular clinic was granted by the
Ministry of Health, Botswana (see annexure B) and the manager of the clinic (see
annexure C).
All medical doctors practising in South Africa are required to register with this body. As
a medical doctor, the researcher was required to register with this body when practising
32
in South Africa, hence the use of the body’s ethical guidance in this study. The MRC of
South Africa (South Africa (Republic). MRC 2000:para 1.3.1) promotes the following
ethical principles: autonomy, beneficence, non-maleficence and justice. These
principles will also be abided by during the research.
2.10.6.1 Autonomy
This principle holds that people have a right to self-determination and this should be
respected at all times. In the study context, it means participants have the right to refuse
or to participate in the research being undertaken, and their decision either way will be
respected.
2.10.6.2 Beneficence
This principle requires the researcher to endeavour to do good. The study should
directly or indirectly aim to benefit research participants or communities. Participants in
this study were aware of the anticipated community benefits of the study as opposed to
individual benefits. Some participants reported benefiting by just being able to tell their
story.
2.10.6.3 Non-maleficence
The researcher should aim to do no harm to the study participants. This was achieved
in this study by respecting participants’ autonomy, by voluntary participation and by
maintaining their confidentiality. Participants may have had concerns with regard to
possible unforeseen negative emotional outcomes following reliving their experiences
during the interviews.
A counsellor was made available to support participants if this situation was to arise.
Only one participant was deemed to need this provision, which he was offered. He did
not take it up. Provision for the researcher to access emotional support was also in
place should the need arise.
33
Participants were allowed breaks and refreshments during interviews when required.
Those who require feedback from the study once it is concluded will be provided with
grouped anonymous results.
2.10.6.4 Justice
This principle refers to equal distribution of risks and benefits between communities and
fair treatment for all. This study did not involve vulnerable minorities who could be
harmed by participation in the study. Participants were adults who were competent to
make decisions and had an awareness of risks and danger.
2.11 CONCLUSION
This chapter described in detail the methodology employed during this study. The
chapter described the type of research design used for the study, sampling methods,
data collection methods, pilot interview, study population, ethical issues around data
collection and proposed data analysis methods. It concluded by discussing ways of
establishing validity or trustworthiness of the study as well as ethical considerations.
The next chapter will discuss the data analysis and presentation of results.
34
CHAPTER 3
DATA ANALYSIS AND PRESENTATION OF RESULTS
3.1 INTRODUCTION
This chapter presents the findings from the study. The chapter begins by presenting the
biographical details of the participants. This will be followed by analysis and tabulation
of main themes, identification of categories and sub-categories, following verbatim
transcriptions and coding of phenomenological in-depth interviews conducted in the
study.
3.2 DATA ANALYSIS PROCESS
The interview transcripts were organised into three computer folders, one folder
containing Setswana transcripts (see annexure I), a second folder containing transcripts
in both Setswana and English, and the third folder containing English-only transcripts
(see annexure J). The process of coding, guided by the steps identified by Lacey and
Luff (2007:7), was then undertaken. Open coding was used, which involved reducing
information from the English transcripts by looking for meaning units in each interview.
Words, sentences or paragraphs used by the participant to convey a particular meaning
or concept were highlighted and colour coded. The colour-coded words were
transferred on to a table and used as the units of analysis. The general concepts which
emerged from the units of analysis were then analysed further by exploration, reflection
and comparison of similarities and differences within them. This led to breakdown of the
general concepts, re-coding and refining, then reorganising the concepts into similar
clusters. This process resulted in the emergence of broad categories from the data (see
annexure K). Within these categories, divergence and convergence of opinions,
experiences, beliefs and conclusions among participants were looked for. The
categories were therefore further broken down into subcategories. To gain a bigger
picture which would address study objectives, similar categories and their subcategories
were grouped together to form major themes. Eight themes emerged from the data. The
35
main themes were then validated through a literature control based on information from
a review of literature. The themes identified were:
(1) Reasons for HIV testing (1Y)

(2) Pre-disclosure deliberations (2O)
(3) Process of disclosure (3LG)
(4) Reasons for disclosing HIV status (4LB)
(5) Reasons against disclosing HIV status (5DB)
(6) Initial reactions to disclosure (6DG)
(7) Consequences of disclosure (7R)
(8) Participants’ recommendations (8P)
3.3 BIOGRAPHICAL DATA
This section describes the characteristics of the participants who took part in this study.
A full description of the attributes which made the participants best suited for the study
is given. The demographic information collected includes age, gender, marital status
and employment status. All the participants were HIV infected.
Table 3.1 Demographic data of the participants
Characteristic Value Frequency Percentage

Age 18-20 0 0
21-25 0 0
26-30 4 45
31-35 2 22
35-39 3 33
Gender Male 2 22
female 7 78
Marital status Married 3 33
Co-habiting 4 45
Casual relationship 2 22
Divorced 0 0
Widowed 0 0
Employment status Full-time employee 8 89
Part-time employee 0 0
Self-employed 0 0
Unemployed 1 11
36
The participants’ age range was between 26 and 39 years. This age range fell well
within the age criteria for inclusion into the study. There were more females than males,
with two out of nine participants being male. Nearly half of the total number of
participants were not married but were co-habiting. There were two who considered
themselves as being in casual relationships. There were no divorcees or widowers.
Only one out of nine participants was unemployed. All participants had at least one child
with their current partner or from a previous relationship. None of the participants was in
a same-sex relationship. The participants’ demographic variables are summarised in
table 3.1.
3.4 OVERVIEW OF THEMES AND CATEGORIES FROM INTERVIEWS
Main themes emerged after the participants were enabled to narrate their stories during
in-depth interviews. The narratives included describing the circumstances that were
prevailing in their lives at the time; the places where they were; the people in their lives
and, crucially, the experiences, thoughts, and feelings they went through as a result of
telling their partners or finding out about their partner’s HIV status. Categories and
subcategories emerged from initial data analysis, which were then clustered together to
form the main themes, which will be presented below.
3.4.1 Theme 1: Reasons for HIV testing
During narration of their lived experiences, the participants were keen to give as
complete a picture as possible of that chapter of their lives. One of the ways they did
this was to tell the story of how they came to find out that they were infected with HIV,
thus laying a background to the narratives. This was a recurring theme amongst the
participants. The participants’ narratives when analysed revealed that there were
several factors which led to participants going for the HIV test. These included health
concerns for either themselves or their partners. Testing because of ill health was
reported as one of the most important factors influencing the decision to undergo HIV
testing. Some of the participants tested because health care professionals treating them
for recurring illnesses advised them to do so, while others decided to test on their own
initiative, taking into consideration their health or their partner’s health-related problems.
One of the participants related that she knew that her husband had been running
37
around with younger girls, and his health was slowly declining for no apparent reason.
She suggested to him that he should go for the test, which he did and later disclosed his
results to her. This is part of her narrative: “things started off with my husband ... He
was the one who became ill. The results showed that he had the virus ... (Short pause,
clears her voice) following the results, it occurred to me that as I have been sleeping
with my husband ...”.
Another category describing reasons leading to HIV testing included those to do with
family planning. The subcategories which emerged indicated that HIV testing was done
when participants and their partners were either planning to start a family, increase their
family or during pregnancy. This was the second most important factor influencing the
decision to go for an HIV test. One participant described how she persuaded her partner
that they should go for the test because his health had not been good and yet he
wanted them to have a second child. Another participant underwent the HIV test
because she was already pregnant and this was part of routine antenatal care. She was
not expecting to find she was HIV positive and had therefore not prepared herself for
the shock of a positive test.
Another category which emerged was HIV testing as a result of public health campaign
messages. This category, however, was not reported as important by all participants.
One participant described how she tried to persuade her first partner to go for the test,
citing public health campaigns. Her partner refused until he eventually died from,
presumably, AIDS-related illness. Another participant told that her husband had
shingles. She said to him: “I heard that shingles can be associated with HIV so … let’s
test first”.
From these descriptions the researcher identified how important the participants felt it
was to convey as complete a picture as possible, possibly to also make the point that
there was a reasoned, well-thought-out pattern to their subsequent actions when they
were faced with disclosing to their partners.
The main reasons why participants went to have their HIV test done are summarised in
the table below:
38
Table 3.2 Summary of Theme 1: Reasons for HIV testing
Main Categories Subcategories Meaning units

theme
Reasons Health Own illness I had been having recurring illnesses for some
for HIV time. I decided that I needed to know what
testing was causing this.
Partner illness Things started off with my husband. He was

the one who became ill.
Family Pregnancy Then I became pregnant in 1997 because my
planning son was born in 1998. That’s when it became
apparent that I was also ill. I was generally
unwell, feeling weak all the time. I was then
investigated and asked if I would agree to
have an HIV test. So I agreed to the test.
The first issue was that we wanted to try for

More children
another baby.
My husband was very keen to have a second

Partner needs
child. I proposed that we have the tests first.
Public health Media Yes, they kept telling us about this illness and
campaign suggesting people should know their status.
I said to him, I heard that shingles can be

associated with HIV so let’s go for a test first.
3.4.2 Theme 2: Pre-disclosure deliberations
In this theme, thoughts, concerns, debates and deliberations that went through the
minds of each participant after finding out their HIV status and before disclosing their
status to their partner were identified. The participants described how they tried to
prepare themselves for the reaction they could potentially get from their partner by
either remaining positive, worrying about it or feeling indifferent. The categories which
informed this theme were negative thoughts, positive thoughts and those who were not
concerned either way. The general feeling among participants was dominated by
positive thoughts of hope and acceptance from their partner.
39
3.4.2.1 Negative thoughts
The participants described the fear, anxiety and worry that went through their minds in
anticipation of their partner’s reaction. One woman even went as far as leaving her
marital home to live with her brother and his children while thinking of how she would
break the news to her husband, who was away on a trip at the time when she found out
her results. It is interesting to note that she declared herself as someone who had a
negative perception about those infected with HIV and therefore expected a similar
negative reaction from her husband. Her preconceived ideas and beliefs appear to have
influenced her subsequent reaction to her positive test. She describes her feeling of
relief when her husband simply accepted her disclosure positively by saying “we hear
about this illness on the radio quite a lot ... So don’t worry ... just get the treatment”.
Another participant, a male, described his fear of telling his partner, given their already
strained relationship. His fears appear to have been realised when she ended the
relationship.
3.4.2.2 Positive thoughts
An overwhelming degree of the positivity of the human spirit in the midst of turmoil was
reported by participants. A recurring expression was that of self-counselling to prepare
themselves for the results or after the results. Participants described sitting down and
thinking about the positives because the first step they took before learning of their
status was to make a conscious decision to accept themselves first, as no one could
accept them if they didn’t accept themselves. One participant said: “I kept asking
myself, “How will I react if I am found to be positive?” ... This was before I went for my
test. So I… em … decided to counsel myself and to prepare myself in case … em ...
my results came back positive”. This feeling was captured across the board during the
interviews. When this participant and others made statements like this, they had a
striking expression on their faces, of an inner peace and calm, almost unimaginable
given their situation. The researcher was left with a lump on her throat at such a deep,
calm and positive outlook as these participants had displayed. Another positive outcome
was described by one participant who indicated that after she found out about her HIV
status, she immediately made a conscious decision that she would change her lifestyle
40
for the better, regardless of her partner’s reaction. Her partner’s reaction was a positive
one, which reinforced her positive attitude for the future.
3.4.2.3 Indifference
A feeling of indifference and lack of any concern was also described. On closer
exploration it emerged that the participants experiencing this feeling had either been
aware of their partner’s positive HIV status or had a strong suspicion about it. There
were also those who felt indifferent because it had not occurred to them that they could
be positive and therefore they had not thought ahead about the implications of an HIV
positive test, such as disclosing the results to partners. One participant said that in her
opinion “HIV was like any other illness and should therefore be treated as such”. The
participants who had no concerns also had a partner who had already been ill, or went
for the test accompanied by the partner, and therefore knew of the results at the same
time as their partner.
The pre-disclosure deliberations as described by participants also appeared to play an

important role in setting a background to let the researcher in on their real lives and
make sure that the picture of what they went through during the disclosure process was
as complete as possible. Their narratives projected a sense of the experience of
disclosure as a process rather than a one-stop decision.
The findings in this theme are summarised in table 3.3.
41
Table 3.3 Summary of pre-disclosure deliberations
Main theme Category Subcategory Meaning units

Pre- Negative Fear and I was scared that ... eh ... as soon as I tell him
disclosure thoughts anxiety he might leave me ... I was also unsure as to
deliberations what he would do.
Positive Self- I kept asking myself, “How will I react if I am
thoughts counselling found to be positive”? ... This was before I went
for my test. So I em … decided to counsel
myself and to prepare myself in case my
results came back positive.
Life style I also decided that if I am negative, I will review
changes my lifestyle accordingly.
Indifference Resignation to I: At the time, did you have any ...?
fate
P: No, not at all ..., I was clueless. I was so
blank I had no idea that I could have the virus. I
didn’t even think about what I would do or what
effect it would have on me if I was told I was
positive.
No concerns I didn’t have problems when it came for me to
tell him, I am a married woman ...
I had no concerns at all.
3.4.3 Theme 3: Process of disclosure
In this theme, participants described the actual steps and actions they took immediately
before and during disclosure to partners, highlighting how they went about telling their
partner. These actions and deliberations were geared at preparing the partner
emotionally and psychologically for receiving “bad news”; there was some detective
work and information gathering to aid decisions regarding when HIV infected partners
should tell their partner; how they would communicate the information to them and
under what circumstances the disclosure would occur.
3.4.3.1 Pre-disclosure clues
The interviews reveal that the process of disclosure started even before the HIV test
results were known. Participants first decided how they would deal with a positive test
42
result by accepting their status and dealing with it positively before telling others. This
appeared to be one of the major decisions they felt they had to make before the actual
act of disclosing. This would suggest that the infected persons felt they needed to feel
ready in their own minds before they told their partner and perhaps anyone else. This
would appear congruent with any major decisions that anyone in life has to make.
Participants then prepared themselves for a positive or negative partner reaction
accordingly. Before they got the test results they also undertook a fact-finding mission to
discover what prejudices, if any, their partners had about HIV. This was done by priming
their partners through clues and discussions about ill-health or discussions related to
HIV testing in general. One participant reported that she initiated a general conversation
about the issues to see what her partner’s reaction was likely to be. She said: “You
listen to him … yes … when you have general conversation about the public health
messages about the disease”.
Another participant described how she gave her children clues by introducing the
concept of long-term medication, then finally telling her children what the medication
was for. This is what she said: “What I did was introduce the subject gradually. First I …
em … told them I had tablets that I needed to take in the mornings and evenings every
day … yes … and asked them to remind me if I forgot a dose. So they got used to the
idea that I take medication first. Later on I told them what the medication was for”.
Another experience involved telling the partner that they (the HIV infected partner) were
going for the HIV test, and then informing the partner that they were going to get the
results, which they would need to talk about afterwards. This could be likened to a
running commentary before a big football game such as the World Cup, where
commentators share the amassed knowledge about teams, but then pass it on to the
viewers bit by bit till kick-off time. The more information viewers get, the more prepared
they become for a probable outcome. Such preparation appears to have helped prepare
both partners for the actual act of giving the news and receiving the news during direct
disclosure.
43
3.4.3.2 Time taken from knowing results to disclosing results
Following receipt of their HIV test results, participants reported a sense of urgency to tell
someone and therefore disclosed their HIV status to their partners shortly after they
received their test results. Disclosure occurred either on the same day or within a few
days. Participants expressed the feeling that delaying the disclosure would be
detrimental to their psychological well-being. Disclosure shortly after getting the result
also appears to have been influenced by the pre-disclosure considerations already
described in the preceding section. Expectations of a positive outcome before
disclosure were described by participants as giving them the courage to disclose as
soon as practically possible. One participant reported fear of disclosing to subsequent
partners. She had disclosed her status to her first partner, and received a very negative
response, which she interpreted as “blaming me for bringing the disease into the
household”. She never found the courage to disclose to her second partner, who
subsequently died from a road traffic accident without knowing her HIV status. She
eventually disclosed to her third partner only after he had disclosed to her first. She felt
reassured that the likelihood of rejection was significantly reduced if the partner was
also positive and was the type who had accepted his condition and lived with it
positively. She had been together with the third partner for over two years before she
told him.
3.4.3.3 Mode of communication
This sub-category relates to the actual news delivery method used by participants to
disclose to their partners. All the participants who had to disclose reported using either
telephone or a face-to-face discussion as a mode of communication. In all cases
disclosure was direct. This is to say that the participants told their partner without using
a third party such as a health care professional, friend or relative. The feeling was that
non-verbal communication was important to the discloser, to see their partner’s facial
expressions and body language at the precise moment of disclosure. The participants
strongly felt that such an observation would enable them to judge whether the partner’s
non-verbal communication was congruent with the verbal communication. One woman
who had attempted to commit suicide after she found out her HIV status described how
her then partner remained emotionless, unconcerned, not in shock like her, when she
44
disclosed her status to him. As she was later to find out, her partner had known his own
status for more than a year and, as she put it, “he must have known he had given it to
me”. When she describes her experience, she becomes motionless, moves her hands
less. She stares into space, then shakes her head in disbelief and obvious anguish,
even though this experience occurred nearly five years ago.
The table below summarises the process of disclosure of HIV status to partners as
described by participants.
Table 3.4 Process of disclosure
Main Category Subcategory Meaning units

theme
The Pre-disclosure HIV What I did was introduce the subject gradually ...
process clues discussions First I told them I had tablets that I needed to take
of in the mornings and evenings every day ... and ...
disclosure asked them to remind me if I forgot a dose. So
they got used to the idea that I take medication
first ...
You listen to him when you have general

conversation about the public health messages
about the disease.
The HIV test For me it was easy because we both went for the
result test at the same time, so there were no issues of
disclosure to deal with.
Ill health It was easy for me to explain to him by just saying
“as you know I have not been very well recently. I
therefore decided to go for HIV testing at
Tebelopele. The results came back showing that I
am HIV positive.
Time scale Immediately Immediately after I came back from Tebelopele, I
called him and asked him to go to the hospital for
his test because I had done mine and I was
positive.
Days I told her my results the next day.
Never I didn’t tell him at all.
Mode of Phone I called his land line to make sure he was in the
communication office. He didn’t share his office. So i went ahead
and told him.
Face-to-face I got to her place and told her everything.
You have to be direct with him and go straight to

the point. All I said to him was “I went to
Tebelopele today, they told me I have HIV and
this is my plan going forward”.
45
3.4.4 Theme 4: Reasons for disclosing HIV status
In this theme, factors influencing the disclosure of HIV status as reported and
experienced by HIV infected persons are described and explored. Categories describing
reasons why disclosure occurred emerged under this theme. The main categories
describing the factors which influenced participants to tell their partners that they were
HIV positive were coded by the researcher as others-focused and self-focused. Deeper
exploration of the categories yielded subcategories including reasons to do with
responsibility; living together; current perceptions about HIV; relationship and safer sex;
financial support; emotional support; treatment availability; freedom and dealing with the
physical aspects of the illness. These will now be discussed in detail.
3.4.4.1 Others-focused factors
There was a strong feeling from participants that they had to disclose their status to
protect others close to them from getting HIV. It became very important to the disclosers
that they needed to protect their loved ones by reducing the risk of HIV transmission
from them to loved ones. One participant described feeling a need to even take it to a
higher level by going public with her status to protect everyone who could potentially
come into contact with her such as paramedics who might need to attend her in case of
an emergency. Another participant wanted to tell her family so that she could educate
them about measures to protect themselves from catching HIV, including the use of
gloves to handle her when she became very ill “to avoid killing them with the virus which
would be killing me at the time”. She needed them to stay healthy for her children when
she was gone. A strong sense of responsibility came across as a very important factor
that participants considered in their deliberations about whether to tell or not to tell.
Participants also felt that they could not continue living in the same household with
someone they had not disclosed to. Keeping such a secret was considered too heavy
and possibly selfish if others were not provided with the necessary information to make
informed choices, even if such information sharing could result in negative
consequences. This is how eloquently one participant described this sense of
responsibility:
46
“It will be a terrible thing to em ... em ... sleep with your partner without a condom
especially if he is used to sleeping with you without one ... yes … when you know your
status and you haven’t told him. You could pass the virus on to him, which em ... will be
a bad thing to do” ...
This subcategory scored very high in participants’ motivation to disclose to partners.
Another sentiment expressed by participants was that if the partner knew, they would be
more inclined to use condoms than if they did not know. The feeling among some
participants was that disclosing could actually help in those relationships where males
were domineering and against condom use. However, one of the participants whose
first partner died from presumed AIDS-related illnesses reported that even towards the
end, her partner still refused to use a condom despite knowing her status.
The researcher got a very strong feeling from participants who described how their
concern for others was the prime factor driving them towards disclosure. It seemed that
potential negative outcomes were regarded as less important in their quest to protect
others from HIV transmission.
3.4.4.2 Self-focused
Self-focused reasons revolved around what the participant hoped to gain by going
through the process of disclosing to the partner. The universal feeling from participants
was the hope of gaining acceptance and emotional support from their partners following
the disclosure of their HIV status. Emotional support was flagged as much more
important than any other support, such as monetary support or support in dealing with
the physical effects of the illness. This conviction seemed to suggest that in the
participants’ hierarchy of needs, emotional well-being was a much higher need than
physical well-being.
The emotional freedom that would come with not keeping such a big secret from their
partners was also rated very highly by participants as a key factor when decisions to
disclose were made. The participant who could not bring herself to disclose to her third
successive partner described an overwhelming feeling of freedom when she finally
47
managed to tell him. The difficulties which she had to overcome due to having to take
medication in secret all disappeared.
The participants also anticipated and hoped for help and support they would get from
their partner. Such help could be in the form of assistance when participants who had
disclosed had to deal with the physical aspects of the illness, including side-effects from
the antiretroviral medication, or financial support. One participant described how she
demanded money from her partner to enable her to travel to get her HIV treatment after
she had disclosed her status to him. She expected her partner to provide the financial
support. In her words: “I told him unless you give me money to go seek treatment, I
won’t leave you alone all night”.
Availability of ART also appeared to influence disclosure. One participant expressed the
view that in the pre-antiretroviral treatment era a positive HIV test was considered a
death sentence. The implications socially, occupationally and emotionally took a toll on
the infected individuals and probably killed them before the disease itself. With HIV
treatment, this sentence was removed somewhat; participants therefore felt strongly
that there was more to be gained from disclosing than not doing so.
The factors influencing participants to disclose their HIV status to their partners as
described in this section appear to have been aimed at helping those who were HIV
infected to accept themselves, to gain acceptance from others; to achieve a sense of
emotional inner peace and freedom while also feeling supported physically and
financially.
The table below gives a summary of the main factors that participants reported as
influencing their decision to disclose their HIV status to their partners.
48
Table 3.5 Factors influencing disclosure of HIV status

theme
Reasons Others Responsibility It will be a terrible thing to sleep with your partner without
for focused a condom especially if he is used to sleeping with you
disclosing without one ... when you know your status and you
HIV status haven’t told him ... You could pass the virus on to him,
which will not be em …a good thing to do.
Living together My first thought was that I had to tell those who lived in
the same household as me.
Tell your partner so that you don’t feel guilty keeping a

secret from them. It is not nice to keep a secret like that
from a person that you live with.
Current Nowadays we take the illness as similar to any other
perceptions diseases ... I am not afraid to tell my friends that I am
about HIV positive ...
Relationship When you are in a relationship with someone you have
to tell them everything ...
Safe sex Yes ... it’s better you tell him ... so that he cannot be
tempted to ask you to have sex with him without
protection.
Self- Financial support I told him unless he gave me money to go seek
focussed treatment, I wouldn’t leave him alone all night.
Emotional Because we were close.
support
She made me feel free to talk about my feelings, which I
did. It transpired later on that actually this woman didn’t
have any sympathy for me.
Your partner will still love you and will appreciate that
you have been honest with him.
Treatment These days the treatment is so much better.
availability
Freedom The main benefit of disclosing to your partner is that you
feel … free afterwards. If you don’t tell him ... you cannot
be free.
Dealing with the If you tell the partner they may be able to advise you
physical aspects about how to look after yourself.
of the illness
You need someone close during such a time ... so I was
telling her these things because I felt that while there
was a close relative who knew… she also had to know
as she was someone I was going to live within the future.
So when I found myself in that situation where I had

started treatment and was experiencing some problems
...
49
3.4.5 Theme 5: Reasons against disclosing HIV status
This theme describes reasons advanced by participants which explained why they felt
they could not disclose their HIV status to their partners. The three main categories
forming the theme were coded as those relating to the HIV infected person’s
perceptions about themselves, their perceptions about their partner and about other
people such as family members, friends and colleagues at work.
3.4.5.1 Discloser perceptions
This category describes how the HIV infected persons felt and perceived themselves in
the light of knowing themselves to be HIV infected. The infected person’s beliefs about
HIV/AIDS as a disease appear to have been a key factor influencing disclosure to
others. One participant described her feeling of low self-esteem, almost a sense of self-
loathing after she realised she was infected. During the interview her body language
projected a feeling of disbelief that she could have this illness, which she had all along
associated with promiscuity and prostitution. She looked the researcher in the eye,
hesitated for only a split second and uttered the words: “I felt like a prostitute”.
Another reason for non-disclosure was the perception of lack of readiness to disclose by
the participants. There was a strong message coming from participants that to be able
to divulge such sensitive information to others, including their partners, they had to be
ready to do it. Disclosure only occurred when they felt ready to do so.
3.4.5.2 Partner perceptions
This relates to how the HIV infected person thought their partner would react to the
disclosure. Negative perceptions of possible rejection, non-acceptance, blame, lack of
support from partner all contributed to non-disclosure. One participant cited a past
negative experience with disclosing to her first partner as the reason that deterred her
from telling her second and third partners. She was, however, able to tell the third
partner only after she formed the opinion that he would not react negatively. Non-
disclosure due to concern for others related to disclosure to family rather than partners
in this study. In this sub-category participants indicated that they didn’t tell their family in
50
order to protect them from the negative connotations associated with being HIV positive.
The overall message coming out appeared to be that even though they had not
disclosed, this was done with good intentions.
3.4.5.3 Other perceptions
This category of attributes relates to disclosing to partners as well as family. Some

participants viewed disclosure to partners as inherently related to disclosing to relatives.
Negative public perceptions about HIV in general were also raised as contributory
factors to non-disclosure.
The table below summarises the reasons influencing non-disclosure of HIV status to
partners by the participants.
Table 3.6 Reasons against disclosing HIV status

theme
Reasons Discloser Self-respect I felt like a prostitute ... I always associated
for non- perceptions having the virus (stressing the word) with a
disclosure person who slept around.
Fear I was too scared to tell him.
Readiness He still doesn’t seem ready to disclose.
Partner Rejection This means if he had not told me first, I was
perceptions going to keep it quiet (eyes wide open) I was
going to wait and see what type of person he was
and whether he was likely to accept my status or
whether he would reject me.
Relationship I even thought he would end the relationship.
end
Blame Whether he will say that I will pass the virus to
him.
Lack of I also told them that if he becomes ill and he still
support hasn’t told me his status, I will not be able to give
him all the care that he needs.
Worry others The reason we have not told them is because in
our experience when you tell adults that you
have the virus ... and you are HIV positive ... they
immediately assume that you are about to die.
Then they become … frustrated and in some
cases they can even worry and develop
51
theme
conditions such as high blood pressure.
Past At the moment I do not feel that a new partner
experiences will be any different from my old partner. I do not
believe that things will be any different.
Non- I didn’t know whether he would accept my
acceptance situation.
You work out his feelings and decide whether he

is the type who will accept you or not.
Other Stigma I also feel that it would have a negative impact on
perceptions their lives especially at work. One of my brothers
is a doctor; I think he would be discriminated
against. There is an English word called STIGMA
(laughing). I don’t want my relatives to be
stigmatised because of my public disclosure.
Views on HIV Yes, they were valid because the reason why
you fear to tell a person is because of the way
they talk about the issue.
3.4.6 Theme 6: Initial reactions to disclosure
This theme describes the initial reactions by both the HIV infected participant and the
partner being disclosed to, following disclosure. Participants described their own
feelings rather than actions, but described how their partners reacted to the news rather
than the partner’s feelings. There were descriptions of both positive and negative
feelings, which appeared driven by the partner’s reaction or actions.
3.4.6.1 Self
This category describes how the participants actually felt following disclosure by their
partners or to their partners. Feelings varied from relief to sadness, disappointment,
deflation and emotional trauma. One participant attempted suicide with a clear intention
of taking her life, as opposed to a cry for help. This participant described her initial
reaction as follows:
52
“Heyish ... I have bad memories about that you know … (shaking her head) ... (Long
pause) for me it was very traumatic ...”.
“It was traumatic to me … heyish… my family and relatives ... even though people
couldn’t tell how I was really feeling ...”.
Later on during the interview she talks about her suicide attempt, and this is what she
said:
“(laughs) I was sorry I didn’t die. I really wanted to die that day because I was in so
much pain”.
Another male participant described how he had noticed that he was emotionally weaker
ever since his experience following disclosure to his partner, as shown below:
“Not really .... all I can say is … the only problem I have seems to be with controlling my
emotions. I seem to lose my patience easily these days … em ... especially when I am
supposed to sit and discuss something ... em ... I realised in the end that my
experiences with that lady did affect me. I now avoid discussions etc ... I am aware that
I could easily start being emotional and em ... end up not putting my point across. I
believe the kind of life that I lived did significantly affect me emotionally”.
3.4.6.2 Partner
This category describes the emotional reaction which was displayed by partners
following disclosure to them by their HIV infected partners. The spectrum ranged from
acceptance and supportiveness to denial, lack of support and outright display of anger.
The support was varied both emotionally and materially, as described by one participant
who said: “This man took his time to look after me. He spoilt me with anything I
wanted”.
Another participant described how her partner “went absolutely mad on the phone”.
The table below gives a summary of initial reactions to disclosure by both partners.
53
Table 3.7 Initial reactions to disclosure

Initial Self Deflation This was followed by a feeling of defeat.
reactions to
disclosure
Disappointment It really made me feel sad, very sad. I
Sadness felt sad because as you know when one
is married … my husband did a lot of
running around.
Emotional trauma I actually tried to commit suicide but
was unfortunate because I was rushed
to hospital where they managed to save
me.
Relief Then I started to relax.
Partner Acceptance/supportive He said don’t worry, we are always told
that this virus attacks everyone. There
is nothing to be scared of.
My partner accepted the news when I

told him without any difficulty.
Anger I called him and asked him to go to the
hospital for his test because I had done
mine and I was positive. Still on the
phone, he went mad.
Unsupportive She seemed intent on showing me that
she didn’t want to be in the relationship
any more.
Disbelief/denial As you know what men are like, he
became very difficult.
3.4.7 Theme 7: Consequences of disclosure
In this theme the effects of disclosure on the participants and their relationships with
their partner subsequent to disclosure are described. The preceding section gave a
glimpse of the emotions, reactions and experiences which occurred on initial disclosure
of sensitive information. This section looks at how those initial reactions shaped the
relationship in the longer term. Categories describing both positive and negative
consequences of disclosing their sero-status to partners emerged. The subcategories
emerging under these categories include emotional support; good mental well-being;
increased condom use; financial support and relationship strengthening or breakdown.
54
3.4.7.1 Positive effects
Results from the interviews indicate that there were significant positive experiences
among participants following their disclosure. They experienced emotional and financial
support from both partners and families. Condom use was mentioned by two
participants as a positive outcome because of the perceived public health benefits.
Disclosure to partners also had a positive impact on some of relationships, which were
further strengthened following disclosure. One of the participants who described this
outcome was the one who had attempted suicide when she found out about her
partner’s status. They went on to get married and remain so up to this day. The
researcher could not have envisaged such an outcome based on the experience
undergone by this participant. Other participants described how their partners and
relatives stepped up their support measures once they knew of their status.
3.4.7.2 Negative effects
Negative outcomes following disclosure of HIV status did not score high among
participants’ experiences. Two out of the nine participants had negative experiences,
mainly affecting their psychological well-being. One participant’s partner openly had an
affair after her partner disclosed to her, and even became pregnant by the other man
while still in a relationship with the participant. This participant reported undergoing
emotional suffering which continues to affect him to date. Another participant
experienced blame and rejection, which influenced her decisions regarding disclosure to
future partners. Despite being in a new relationship, she still had not come to terms with
the rejection by her first partner.
Table 3.8 summarises the effects of disclosure on participant’s relationships.
55
Table 3.8 Consequences of disclosure

Consequences of Positive Emotional He said we are always told that this virus
disclosure effects support attacks everyone. There is nothing to be
scared of.
.
He never even suggested we stop sleeping
together just because I have the virus. He
still treats me very well.
Mental well- Disclosing your status to your partner gives
being you freedom. You don’t live in fear of....and
if something happens ... You would feel
guilty just because you never told him in
the first place ... that there is such and
such issue ...
Condom use Disclosure can encourage safer practices.
We have agreed to use condoms. He has

no problems with that.
Financial They even give me money to travel for my
support checkups if I don’t have the money.
He encourages me to adhere to treatment.

He even buys me fruit and milk.
Relationship Yes, he is the only issue. We have plans to
strengthening marry in the future. His family is aware of
our plans. They also know my HIV status.
Right now we live together in harmony. We

don’t have fights about his previous life
style of running around.
Negative Psychological These things made my life miserable.
effects abuse
The only problem seems to be with
controlling my emotions. I seem to lose my
patience easily these days. I realise that in
the end my experiences with that woman
did affect me. i believe the kind of life i lived
did significantly affect me emotionally.
Physical abuse In the meantime, my partner not only
refused to do the test but also refused to
use condoms. It became such an abusive
relationship.
Relationship Our relationship was not perfect at the time
breakdown but after I told her things seemed to get
worse.
56
I also told him that when he returns the
relationship will not continue. I told him it
was over because of my status.
Rejection May be counselling may help because I
was rejected by my partner when I told
him. He kept saying “not me, I am not ill”
and he didn’t want anything to do with me
after that.
3.4.8 Theme 8: Participants’ recommendations
This theme deals with recommendations based on participants’ views following the
experiences they went through. This theme is very important because essentially
participants are making recommendations based on evidence. They have lived the
experience; they have not read somewhere about it and formed unfounded opinions.
Overall participants were able to recommend that disclosing to partners is the right thing
to do, regardless of their individual experiences, whether positive or negative. Here are
some of the comments participants made:
“Just disclose ... You never know what a human being will do ... .it’s only em ... 2 or 3
who may leave but most will just accept it ... yes”.
“All we can do is encourage them not to fear … and to be brave ... em ... If they are
afraid they could ask another close friend who knows their status to tell their partner on
their behalf ... yes”.
Two main categories were identified within in this theme, describing how those infected
with HIV could be encouraged to tell their partners. Participants suggested measures
which were supportive and other measures which were punitive. Further analysis of the
categories yielded the subcategories which included counselling, legislation and
withdrawal of services.
57
3.4.8.1 Supportive measures
♦ Professional counselling
There were diverse views on the likely impact of professional counselling and
education, focusing on issues relating specifically to disclosure, being provided to HIV
infected people as part of pre-test counselling. Participants expressed varied opinions
on this issue. There was support for such an intervention, as in the view expressed by
one participant who said: “may be counselling may help because I was rejected by my
partner ... when I told him .... He kept saying “not me, I am not ill” and he didn’t want
anything to do with me after that. That leaves you with a question mark about why he
reacted that way, so counselling may help hurt feelings. She goes on to say, “I think
they should include it as part of ongoing counselling. People should be advised on what
to do in case they are positive and how to approach the issue of disclosing to partners”.
She did not, however, hold the view that disclosing through a third party such as a
health care professional, close friend or relative would be beneficial. There were two
participants who did not think counselling would help. This is the view expressed by one
of those participants:
“For me counselling was not relevant because I had counselled myself before going for
the test”.
“I swear by my God ... ok … I went for the test fully prepared for any outcome and ready
to accept whatever the result was ... ok ... I don’t think there is anything that another
person can tell me which would have changed the way I felt about the process or my
intentions ... I do appreciate that other people may find it beneficial ... but it is not for
me. I am one person who has self counselled ... ok”.
Although this participant does not believe in counselling, she gives good reasons why.
Essentially she is saying that professional counselling is not for everyone, which would
appear a reasonable conclusion, as with emotional issues there is no one-size-fits-all
solution.
58
♦ Couple HIV testing at the same time
This subcategory describes a situation where both partners go for their HIV testing
together. One participant expressed the sentiment that simultaneous HIV testing of
partners could also reduce the likelihood of blame.
♦ Third party mediation
Another subcategory which emerged described a provision whereby those who are HIV
infected and are afraid to disclose to others could be helped to do so through third
parties acting as mediators. Such third parties would be health care professionals,
friends or close relatives. This provision did not have strong support from participants.
3.4.8.2 Punitive measures
This category describes opinions expressed by participants with regard to whether any
kind of forceful measures would make those infected with HIV think harder about their
actions. Strong opinions were expressed both in support of and against punitive
measures to force people to disclose their status to others. It was interesting that
participants who supported punitive measures were those who held positions of
responsibility in the workplace.
♦ Legislation
This subcategory describes the use of the rule of law to effectively punish those found
intentionally transmitting HIV by not informing those with whom they were having sexual
contact. Some participants expressed very strong opinions regarding legislation. One
participant said:
“Not really ... (long pause) there is nothing the government can do if I am not prepared
to tell my partners even though I should ... do you understand?”
59
“It all depends on what the person wants to do ... It also has to come from deep down
the person’s heart. If as an individual I am not prepared to tell my partner ... There is
nothing the government can do about it”.
Other participants felt strongly that the government needs to get involved, as
exemplified by one participant’s views “I am not sure.. if … em … serious measures
have to be taken against them ... yes ... because they help to spread the virus. At least
a person who doesn’t know their status has an excuse ... yes ...”.
♦ Withdrawal of services
In this subcategory, participants expressed the view that those accessing HIV-related
treatment services such as the government antiretroviral programme should have
measures taken against them if they are found to be practising behaviour deemed likely
to spread HIV. Some views were particularly strong, especially those advocating
withdrawal of services from those judged to be behaving irresponsibly. Here are some
of the views:
“I would like the government to reconsider the situation where by a person is on the
program and becomes pregnant outside wedlock, even those who are married …”.
“Those people who know their status and fall pregnant should be taken to the side by
the nurses when they register and be talked to sternly. May be that will reduce the
spread of the virus”.
The views described in this subcategory were not expressed by all participants but
those who expressed them appeared to hold them very strongly.
3.5 CONCLUSION
This chapter analysed and presented findings from the research study. Demographic
data of the participants was presented first. This was followed by presentation and
analysis of interview findings using content analysis. Paragraphs communicating a
meaning were identified using colour codes from the coded interviews. These then
60
informed the categories and subcategories. Main themes were then built from
categories and subcategories. The data was presented in tables for ease of clarity. The
next chapter will present the literature review, which will be used to contextualise and
validate the research findings and to inform the discussions and conclusions in the final
chapter.
61
CHAPTER 4
DISCUSSION OF FINDINGS AND LITERATURE CONTROL
4.1 INTRODUCTION
This chapter discusses the findings from the study with reference to the existing body of
knowledge on the concept of disclosure of HIV status to partners and elaborates on the
theoretical framework informing the study conclusions. Burns and Grove (2009:91)
define a literature review as consisting of all written sources relevant to the topic
selected for study. These authors go on to state that the purpose of a literature review is
to convey what is currently known about the topic of interest. According to Flick
(2009:48), Glasser and Strauss (1967) suggested in their grounded theory that
qualitative data should be collected before searching for existing literature. Flick
(2009:49) then suggests various types of literature review in qualitative studies, which
include theoretical literature about the topic, methodological literature about how to do
the research and theoretical and empirical literature to contextualise, compare and
generate findings. Other authors argue for a review of literature as part of the initiation
of a qualitative study to identify the significance of the study and inform methodological
aspects (Marshall & Rossman 1999:46). The literature review in the current study was
undertaken and used for quality control purposes to contextualise, compare and inform
conclusions from the current study, as suggested by Flick (2009:49). The literature
review will therefore be guided by discussion of the main themes identified from the
data analysis and the CPM theory of disclosure of private information.
4.2 DISCUSSION OF THEMES AND LITERATURE CONTROL
Eight themes which emerged following analysis of data obtained during participant
interviews in the preceding chapter were identified. These were:
(1) Reasons for HIV testing

(2) Pre-disclosure deliberations
(3) Process of disclosure
62
(4) Reasons for disclosing HIV status
(5) Reasons against disclosing HIV status
(6) Initial reactions to disclosure
(7) Consequences of disclosure
(8) Participants’ recommendations
4.2.1 Reasons for HIV testing
Participants in this study identified three main reasons why they went for the HIV test.
They reported going for the test due to health concerns, usually because of illness
affecting them or their partners. They also reported undergoing the HIV test for reasons
related to family planning, such as an existing pregnancy or when planning to increase
the family size. HIV testing due to public health campaigns was also reported in this
study (see section 3.4.1). In a study done in Botswana to assess reasons for HIV testing
following introduction of routine HIV testing in Botswana from 2004, Steen, Seipone, De
la Hoz Gomez, Anderson, Kejelepula, Keapoletswe and Moffat (2007:486) reported that
the main reasons given by respondents for undergoing routine HIV testing were due to
the patient’s wish (50.1%); pregnancy (24.7%); medical examination (6.5%); with the
rest of the figures being due to other reasons. Other reasons identified in the literature
for HIV testing included being required to have the test by, for example, health provider-
initiated HIV testing, as reported by Mugisha (2008:93). This was not one of the reasons
for undergoing the HIV test among participants in the current study. Weiser, Heisler,
Leiter, Percy De Korte, Tlou, DeMonner, Phaladze, Bangsbeng and Lacopino
(2006:1017) conducted a cross-sectional study based on 1268 adults in Botswana to
assess knowledge of and attitudes towards routine HIV testing, correlates of HIV
testing, and barriers and facilitators to testing 11 months after introduction of the policy
of routine HIV testing. They found that factors associated with HIV testing included older
age, female gender, higher education, higher income, self reported excellent health
status, access to good health care, access to HIV testing and respect from health care
professionals. There are several significant differences in the factors influencing HIV
testing in this study compared with the current study. In the current study, health status
was a significant factor associated with HIV testing but not in the positive sense
reported by the cross-sectional study above. Access to HIV tests and respect from
63
health care professionals was also not reported as important factors influencing HIV
testing among participants in the current study.
4.2.2 Pre-disclosure deliberations
Participants described their feelings, thoughts and concerns before disclosing their HIV
status to their partners (see section 3.4.2). The participants thought about themselves,
how prepared they were; how they would actually deliver the news and how the news
could be received by their partners. These deliberations are reflected in the findings by
Greene (2006:14), who describes a situation where the disclosers (HIV positive
partners) battle to reconcile their need for personal autonomy by having control over
their private information against their loyalty to their partners by not keeping a secret
such as their HIV status from the partner. Another study reported feelings of worry,
doubt about whether to disclose or not, hurt, acceptance and courage (Greeff, Phetlhu,
Makoae, Dlamini, Holzemer, Naidoo, Kohi, Uys & Chirwa 2008:319). Their study, which
was done among people living with HIV/AIDS in five African countries, did not report
deliberations regarding mode of news delivery. This is in contrast to the current study,
which found that a significant part of pre-disclosure deliberations was occupied by
disclosers preparing themselves for the process, by, for example, self counselling or
making positive decisions about lifestyle changes. The authors (Greeff et al 2008)
reported denial as a significant pre-disclosure concern leading to non-disclosure. In the
current study, although denial was reported, it did not lead to non-disclosure. Sheon and
Crosby (2004:2111) reported an interesting glimpse of the diversity of pre-disclosure
considerations in their study on men having sex with men in San Francisco. One of the
participants in their study narrated that he hoped to be told he was HIV positive when he
went for his test results, just so that he could stop worrying about possible infection and
also be able to tell his sexual partners that he too was HIV positive, so they could stop
excluding him. It seems that when he had these thoughts before getting his HIV results,
a sense of belonging and hope for acceptance by the gay community he lived in were
overriding factors in his deliberations, rather than concern for his health.
64
4.2.3 Process of disclosure
This theme emerged as a result of the descriptions given by participants of how they
actually went about revealing their HIV status to partners (see section 3.4.3). It soon
became clear that there was a build-up of thoughts, deliberations and actions leading to
the actual moment of “telling”. In the narratives, participants related their story by first
getting the researcher to understand how they found themselves in a situation where
they had to disclose. They described the preparations they made such as holding
general discussions about HIV issues with partners to work out what their views were;
informing partners that they were going for the HIV test and when they were going to
collect the results to try and prepare partners for the actual disclosure of bad news.
They also describe pre-test result self-counselling, and self-acceptance, which had to
be achieved before they could feel ready to break the news. They then had to decide
how and when disclosure would occur. The narratives would seem to reflect the findings
according to Maman and Medley (2004:4), where they describe disclosure as a process
rather than a one-off decision and also suggest a framework to describe the decision-
making process during disclosure. Six steps are identified which include:
♦ Adjustment to the diagnosis, characterised by a need by the individual to

adjust and reach a level of acceptance
One of the participants gives a very good example of this when she says: “So I … em
… decided to counsel myself and to prepare myself in case … em ... my results came
back positive”.
♦ Evaluation of personal disclosure skills
The individuals undertake a self evaluation to see if they have the necessary skills to
enable them to disclose their status to others. “I kept asking myself, how will I react if I
am found to be positive ... This was before I went for my test”.
65
♦ Evaluation of the appropriateness of disclosing to a potential recipient
Decisions regarding who can be told are formed at this stage. Rutledge (2007:1046)
observed in his study on enacting personal HIV disclosure policies by gay men that if a
romantic relationship is deemed likely then the individual will be more inclined to tell. In
the current study the participant who was afraid to tell her subsequent partners was able
to disclose to her third partner until after he disclosed to her first. Armed with the
information about his status, she calculated that a positive outcome was now more likely
to result from her disclosure to this partner compared with the experience she had had
with her previous partners.
♦ Evaluation of circumstances for disclosure
In this step, the individual decides on the circumstances which prohibit disclosure to
others. Moskowitz and Roloff (2007:6) assert that HIV infected people will carry out a
cost/benefit analysis before a decision to disclose is made. If the analysis suggests that
friendships could be negatively affected, then disclosure does not occur. One of the
participants had experienced a negative outcome after disclosing to her first partner. As
a consequence she was not able to disclose to her second partner. She only managed
to tell her third partner when she had information which led her to conclude that the
circumstances prevailing were now right for her to tell the partner she had not told for
two years. Negative outcomes following disclosure to others by a group of pregnant
women in South Africa were reported by Visser, Neufeld, De Villiers, Makin and Forsyth
(2008:1142). These outcomes included being physically hurt, abandoned and even
given death threats. This was, however, reported in less than 10% of the sample, with
the rest reporting positive outcomes. Medley, Garcia-Moreno, McGill and Maman
(2004:302), following their synthesis of literature on barriers, rates and outcomes of
disclosure, concluded that perceived negative outcomes were often not realised in
practice, with disclosers receiving more support than rejection.
66
♦ Anticipation of reactions by potential recipients whereby anticipated
benefits are weighed against potential negative outcomes of disclosure
Rutledge (2007:1044) describes the process of disclosure as experienced by gay men

in his study, which starts with the discloser applying his personal disclosure policy to the
sex environment, then assessing the prospective sexual partner to try and gauge his
potential reaction to disclosure. This is followed by evaluation of reactions and
consequences of disclosing. Rutledge (2007:1044) also describes a three-stage
process of timing, staging and enacting disclosure. In this study, one participant
described how she introduced the subject to her children in a step-wise manner. First
she introduced the issue of her having to take some pills and asking the children to
remind her daily. When they were comfortable with the knowledge and arrangement,
she then told her eldest daughter what the pills were for first, telling the younger ones as
they also grew older. She felt she had to tell them when the time was right, when they
were mature enough to understand and accept her situation.
♦ Identification of the motivators for disclosure occurs in the final step
Perceived risks and benefits of disclosing one’s HIV status are likely to be formed at this
stage. A falling CD4 count has been described as instilling a sense of urgency to
disclose in certain circumstances (Moskowitz & Roloff 2007:18). This was exemplified
by the description of one participant in this study who said that she told her partner, who
was trying to avoid the subject, insisting that they needed to talk about it because she
needed him to give her some money towards the travel costs to attend the antiretroviral
clinic. Another participant decided to tell her family so that they could look after her
children when she was gone.
This framework highlights the complex nature of decisions regarding disclosure of one’s
HIV status. It confirms the interaction of different factors influencing this process. The
process is also clearly unique for each individual.
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4.2.4 Reasons for disclosing HIV status
The main factors described by participants as having influenced them to tell their
partners that they were HIV positive were divided into others-focused and self-focused
(see section 3.4.4). The others-focused reasons included a sense of responsibility to
protect loved ones against HIV transmission; because they lived together, a reluctance
to keep a secret of such importance from a partner; and probable improvement in
practising safer sex. The self-focused reasons were mainly in relation to what the
discloser hoped to gain by disclosing to the partner. The perceived benefits of
disclosure to partners were hope of acceptance and the emotional and financial support
that comes with it; a sense of freedom from the burden that comes with living and
keeping such a secret; conviction that the relationship was strong enough to withstand
such an issue; and anticipated support in dealing with the physical aspects of the
illness. Participants also reported being influenced by the current perceptions about
HIV. They felt there was a better understanding of the disease and it was starting to be
seen like any other chronic illness. The availability of HIV treatment meant that they
would get help if they told someone.
These findings appear to be in keeping with studies from the literature. Kebede,
Woldemichael, Wondafrash, Haile and Amberbit (2008:81) found that disclosure of HIV
status to sexual partners is more likely if the partner’s status is known; the discloser has
high self-esteem; partners are living in the same house; the disease is at an advanced
stage; and if there have been prior discussions about HIV testing before the test.
Advanced stage of disease was not reported as a factor influencing disclosure in the
current study. This could be because the participants in this study were all on ART and
therefore not at the advanced stage of HIV infection. Norman et al (2005:8) have
identified readiness as a contributory factor to disclosure of HIV status. Other positive
experiences such as feelings of unburdening and freedom resulting from disclosure
were also described in their study based in two villages in South Africa.
Similar factors contributing to disclosure were identified by Serovich and Mosack

(2003:70-80). They came up with a four-factor set of reasons for disclosing. These
were:
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• Responsibility and sense of duty
• Instruction which involved teaching others about HIV
• Relationship consequences
• Emotional release
They indicate that safe sex as a reason for disclosure was not loaded as significant in
their study. Serovich and Mosack’s (2003) study was a quantitative study. In the current
study, participants considered safer sex an important reason for disclosing. They
believed that disclosure would encourage condom use, especially in male-dominated
relationships. Disclosure to partners has also been found to result in increased social
support for people living with HIV/AIDS (Zea, Reisen, Poppen, Bianchi & Echeverry
2005:20). These authors (Zea et al 2005:20) also noted in their study among gay Latino
men that disclosure was related to increase in self-esteem. Increased levels of social
support and reduced levels of depression were also reported. This is a helpful finding,
because the participants in the current study were hoping to experience increased
partner and social support by putting themselves through this process. Maman and
Medley (2004:3) also identify both public health and personal benefits of HIV status
disclosure to sexual partners. The public health benefits include expanded awareness
of risk which may lead to reduced sexual risk taking. It is presumed that this would in
turn lead to decreased transmission of HIV. In the United States of America (USA),
young people were found more likely to disclose to another HIV positive partner than a
sero negative one (Rice, Batterham & Rotheram-Borus 2005:281). Being on HAART,
being Caucasian, time having elapsed since diagnosis and having a non-casual partner
were also identified as positive predictors of disclosure among men having sex with
men in the same study.
Menon, Glazebrook, Campain and Ngoma (2007:349) carried out a study to investigate
the relationship between mental health and disclosure of HIV status in Zambian
adolescents. They reported positive mental health outcomes among those who
disclosed their status. This would be in keeping with findings from the current study,
where participants reported a sense of relief and freedom following disclosure to
partners.
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4.2.5 Reasons against disclosing HIV status
This study identified factors acting as barriers against HIV disclosure to partners; these
were motivated by perceptions of the risk involved in undertaking such an action.
Participants took into consideration their perceptions about themselves and about their
partners regarding the issue of HIV when considering whether to tell or not. Negative
preconceptions about who gets HIV seemed to act as an important barrier towards
disclosure. A participant who associated HIV with promiscuity and prostitution could not
face telling her partner. She described feeling “dirty”. Feeling a lack of readiness to
disclose, fear of rejection, loss of self respect, being blamed for bringing the virus into
the home and possible relationship breakdown were all reported as factors leading to
non-disclosure in this study. The way participants thought about their partners’ views
about HIV also significantly influenced whether disclosure would occur or not. If a
partner’s views on HIV related issues were perceived as negative, then disclosure was
unlikely to occur. Past negative experience with disclosing HIV status to previous
partners and not wanting to worry loved ones were also reported as a reason
influencing non-disclosure in this study.
Studies from the literature would appear to identify similar factors acting as barriers
towards disclosure. The individual risks identified in women who disclosed to their
partners, according to Maman and Medley (2004:3), include loss of economic support;
blame; abandonment; abuse; discrimination and disruption of family relationships. The
study also reports that lovers are likely to become angry and withdraw following
disclosure. One participant reported emotional abuse following disclosure in the current
study. Physical abuse, loss of economic support and discrimination were, however, not
reported by the participants in the current study. Fear of rejection and abandonment and
concern for others were also identified as factors resulting in non-disclosure (Norman et
al 2005:6). Another study reported fear of loss of employment as a major factor causing
non-disclosure among HIV patients receiving ART in private clinics in Botswana (Wolfe
et al 2006: 932). These authors reported that 27% of 112 HIV sero-positive adults they
studied on antiretroviral medication had not disclosed for fear of loss of employment.
Participants in the current study did not describe specific concerns about loss of
employment if they disclosed. However, disclosure in the context of the study by Wolfe
et al (2006) was to others, not necessarily partners, which could explain the difference
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in terms of concern for loss of employment. According to Circcarone, Kanouse, Collins,
Miu, Chan, Morton and Stall (2003:949), legal and ethical considerations have also
been postulated as contributors to non-disclosure. They indicate that from 1999, 31
states in the USA had statutes making sexual contact without disclosure a criminal
offence, which could contribute to non-disclosure.
In the context of this study, no concerns were voiced about legal implications being
considered a barrier to disclosure. The fact that there is a Public Health Act in Botswana
which can be used to prosecute those thought to be knowingly infecting others by not
disclosing their status did not seem of particular concern to the participants in this study.
It may be that awareness of legal implications of non-disclosure was lacking among
participants in this study.
4.2.6 Initial reactions to disclosure
Emotional reactions by the participants to their own disclosure and to the way their
partners received the information were described (see section 3.4.6). Feelings of
defeat, disappointment, emotional trauma, sadness and relief were among those
reported by participants. Partner reactions to disclosure were also described, including
acceptance, supportiveness, anger, denial and outright lack of support. Similar
reactions were identified by Visser et al (2008:1145) in their study of disclosure during
pregnancy by South African women. They also found that some disclosing partners
received no reaction from their partners following disclosure. Lack of reaction was not
reported by participants in the current study. Greeff et al (2008:317) reported reactions
including negative perception of self, loss of self-esteem and social withdrawal, name
calling and blame for promiscuity. Caughlin, Brashers, Ramey, Kosenko, Donovan-
Kicken and Bute (2008:656) argue that understanding how others will respond to
disclosure is important for disclosers, who may feel prevented from disclosing by
uncertainty regarding reactions to disclosure by recipients. Disclosers may also have
hopes and expectations of how recipients of disclosure will react and may be very
disappointed if reactions do not meet expectations. This was certainly important in the
current study, because participants indicated uncertainties regarding potential partner
reactions, which in some cases were better than hoped for but in others not so positive.
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4.2.7 Consequences of disclosure
Following disclosure of HIV status to their partners, participants in this study reported
mainly positive and to a lesser degree negative outcomes, as described in section 3.4.7.
The positive outcomes can be summarised as emotional and financial support;
improved emotional well-being, strengthening of relationships and anticipated increase
in safer sexual practices through condom use. The negative effects following disclosure
as reported by participants in this study were rejection, emotional trauma and abuse
and relationship breakdown. The relationship breakdown occurred on the back of an
already troubled relationship. Similar outcomes were described in the literature by
Medley et al (2004:303). These authors identified and synthesised data from 17 studies
investigating disclosure rates, barriers and outcomes among HIV infected women in
developing countries. Fifteen of the studies they identified were done in sub-Saharan
Africa. Positive consequences of disclosure reported in their paper include encouraging
attitudes, acceptance, understanding, kindness and relationship preservation. The
negative consequences reported were physical abuse, disputes, violence and
relationship breakdown. The number of studies reporting relationship breakdown was
reported to be in the minority. While their findings were similar to those from the current
study, there are some differences. Participants in the current study did not report any
overt physical violence. Disputes following disclosure were also not reported as
significant in the current study. One participant even described reduction in disputes
about her partner’s involvement with other women after they found out he was HIV
positive.
4.2.8 Participants’ recommendations
In this theme, participants gave their views, advice and words of wisdom in relation to
the pitfalls of disclosure, usefulness of disclosure in controlling HIV transmission, and
methods that should be considered to encourage disclosure and also make the process
easier for disclosers (see section 3.4.8). There were diverse views but all participants
agreed that disclosing HIV status to others should be encouraged. Reflecting on this,
the researcher holds the view that while disclosure should be encouraged; there have to
be appropriate safeguards and support systems in place to enable disclosure. Ideally an
individual risk assessment should be carried out by suitably qualified health care
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professionals so that potential disclosers are well equipped for this process. The
researcher’s view is that disclosure is so personal that when faced with it, even the
participants giving this advice might find it hard to follow it themselves. Methods to help
disclosers prepare for disclosure and through the process of disclosure were suggested,
including professional counselling and simultaneous HIV testing of partners. Other
participants suggested punitive measures to deter non-disclosure, such as withdrawal of
access to HIV treatment services and use of the law. Studies in which HIV infected
people have suggested punitive measures as a way of enhancing disclosure have not
been identified in the literature. In their study exploring reasons for disclosure of HIV
status among people living with HIV/AIDS in care in Uganda, Ssali, Atuyambe,
Tumwine, Segujja, Nekesa, Nannungi, Ryan and Wagner (2010:7), recommend
measures which could empower those considering whether to disclose their HIV status
to make the right decisions at the right time by analysing their personal circumstances
carefully. The recommended measures include tailoring of intervention strategies to
address concerns about disclosure that vary depending on the target. They also
suggest making material provision available for those living with HIV, which will secure
their livelihoods and independence, given that some of the barriers to disclosure are
related to material dependence on others and therefore loss of livelihood if the discloser
was rejected by the partner. Professional counselling with emphasis on disclosure
issues: possibly trauma-focused cognitive behavioural therapy, would be one
intervention which could be used to empower those wishing to disclose their status to
others.
4.3 THEORIES OF HIV DISCLOSURE
Given the varying outcomes from the literature regarding positive and negative
outcomes and predictors of disclosure of HIV status, researchers have tried to theorise
and gain better understanding of reasons behind the process of disclosure. Three such
theories will be considered in the next section.
4.3.1 Disease progression
According to Serovich (2001:356), Babcock and Kalichman argue that the premise of
this theory is that individuals disclose their HIV diagnosis as they become ill because as
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the illness progresses they can no longer keep it a secret. With the advent of highly
active antiretroviral therapy, most of the overt clinical signs of HIV occur less frequently.
There was no evidence from the current study that disclosure was motivated by disease
progression. It is for this reason that this theory will not be used as the main basis for
the current study. Serovich, Lim and Mason (2008:28) re-tested the theory of disease
progression and consequences theory. Their findings supported a revised
consequences theory but concluded that disease progression may not be a direct
predictor of HIV disclosure.
4.3.2 Theory of competing consequences
According to the consequences theory, the relationship between disclosure and disease
progression is moderated by the consequences one anticipates resulting from
disclosure (Serovich 2001:356). It postulates that as disease progresses, evaluations of
likely outcomes of disclosure occur once rewards outweigh costs of disclosure. The
rewards could include social, physical, psychological and emotional dividends. The
negative consequences suggested include anxiety, threat to personal well-being,
ostracism and degradation, rejection, fear of loss of employment, insurance, medical
services, child custody and right to education (Serovich & Mosack 2005:257). Other
authors have expanded on the consequences theory in their CPM theory, which is
discussed in the next section (Greene et al 2003:17).
4.3.3 Communication privacy management (CPM) theory
This is a theory initially postulated by Petronio in 2004 which examines why people
make decisions about revealing or not revealing private information about themselves.
Petronio (2004:196) first thought of privacy as the key to understanding disclosure and
looked at disclosure from two aspects: content and process. The content is described
as the private information to be disclosed. The private information to be disclosed in the
current study is HIV positive status. The process refers to how the information is
disclosed. The process is demonstrated in the current study by identification of initial
reasons for HIV testing, pre-disclosure deliberations following receipt of the test results,
initial reactions to disclosure and outcomes of disclosure. Petronio (2004:196)
concluded that it was difficult to understand disclosing of private information without
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really defining the dialectical tension between disclosure and privacy. This dialectical
tension was experienced by the HIV infected participants during pre-disclosure
deliberations in the current study. They had to deal with self-preservation versus a
sense of duty to others when considering whether or not to disclose their HIV status.
Petronio also argued that the confidant or recipient of information is an integral yet
unique part of the communicative process. At its inception the theory focused on
married couples, because they engaged in extensive interactions deemed private. This
helped with the understanding of how people are able to regulate the dialectical tension
of privacy and disclosure through decision criteria that generate privacy rules.
Ownership and control are seen as critical in understanding the way people define and
handle private information (Petronio 2004:198).
According to Greene et al (2003:20), the CPM theory is described as consisting of

privacy boundaries which shift throughout life, depending on the sensitivity of the
information to be revealed. The theory assumes a mutually exclusive relationship
between disclosure and privacy whereby one cannot exist without the other. The theory
would therefore seem to suggest that as long as private information exists, disclosure
remains an issue that needs to be addressed. The participant who went through two
relationships without disclosing to her partners in the current study eventually found
peace and experienced freedom after she told her third successive partner. This would
indicate that there was always an inner tension related to withholding private information
from her partners. The tension was released when there was no longer a secret to
keep. The theory describes a rule management system which governs disclosure of
information. The rule management system determines whether full access to private
information is allowed (full disclosure) or partial access (selective disclosure) or
restricted access, which leads to non-disclosure. It also proposes five criteria used to
develop privacy rules in order to decide whether to disclose or conceal private
information. The criteria are: culture, motivation, gender, context and risk benefit. The
researcher’s reflections before the study debated whether some of the disclosure issues
could be determined by the situation between individual partners and perhaps their
views on moral issues as well. Cultural perspectives can certainly encompass moral
issues.
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Culture
The theory argues that culture is paramount to development of privacy rules. Cultural
expectations may influence disclosure decisions. An illustration of this cultural influence
is given by Raganya (2003:12), who reports the observation of Lerc-Madlala, that when
a person who is HIV positive dies in the African culture, the death is blamed on
witchcraft. Witchcraft is considered a specialist African practice. One participant and her
partner in the current study were treated by a traditional healer with a mixture of coke
and traditional tea. Her ailment was thought to be a consequence of her sexual
relationship with a widower. She remembered that her partner had lost a wife and
suspected it was related to HIV infection, despite her partner never having told her so.
This narrative by the participant sounded very familiar. On several occasions, the
researcher had treated patients infected with HIV at the brink of death because they had
spent time receiving this very kind of treatment from traditional healers. The narrative
aroused mixed emotions in the researcher’s mind because of personal experiences of
similar nature involving relatives who had lost their lives due to delays in accessing
conventional HIV treatment. The emotions were mixed because at least this participant
had lived to tell the story. The researcher had to consciously make sure that her
response to this particular part of the conversation remained neutral and did not
jeopardise the rest of the interview. The culture criterion was also demonstrated by the
participants who decided to disclose hoping that their partners, who were male and
dominant in the relationship, would be convinced to practise safer sex by use of
condoms.
Motivation
Motivations people have concerning privacy have a significant influence on whether

they will disclose their private information. This criterion is used to explain how personal
needs, achievements and goals influence privacy rule making. This is exemplified in
issues such as preservation of a relationship. The partner of one of the participants in
the current study was reported to have known his HIV status and started treatment but
never told his partner. She discovered his status from her parents, who literally forced
him into disclosing. He said he was afraid that the relationship would end. The interview
with this participant was heart wrenching; yet while at the time of the interview even the
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researcher may have felt that his motivations had been dishonourable and selfish, on
reflection he was also probably terrified not only for his life but also for possible
relationship breakdown. Under the circumstances, there was no motivation for him to
reveal his HIV status to his partner.
Gender
Gender and sexual orientation is also deemed a powerful influence in decisions to

disclose. In men having sex with men, the added stigma is alleged to contribute to non-
disclosure. However, Rice et al (2005:164) found in their study of predictors of sero-
status disclosure in young people aged 13-24 that Caucasian gay men were more likely
to disclose their status to sexual partners. There were no gay or bisexual participants in
the current study. There were two male and seven female participants. The numbers
involved are such that no specific conclusions can be drawn about the impact of gender
on disclosure in this study. One of the male participants gave the shortest interview,
while the other male participant gave the longest interview. The difference was due to
their very different experiences in relation to disclosing their status to partners.
Context
The contextual criterion indicates decision making based on the prevailing situation.
This takes into account situational changes such as the timing for revealing status, and
a place where one is unlikely to be overheard. Raganya (2003:15) suggests that
situations such as geographical separation or having to use a telephone to break the
news may create a less favourable context for disclosure to occur. During pre-
disclosure deliberations (see section 3.4.2) participants considered how they would
reveal the news, including the mode of communication. Mode of communication varied,
depending on the individual participant’s situation. One participant called her partner at
his workplace; another used email to communicate the news to her outside-wedlock
partner, who lived abroad. Even the distance could not stop her, which goes to show
that if an individual is determined to disclose it will happen regardless of the distance.
Another participant knew that her partner was always busy, so she waited for him to
come home to talk to him while he was having his meal, as she knew that this was the
best time to catch his attention.
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Risk benefit
The risk-benefit criterion describes perceived outcomes of such an exercise. If the risk
of rejection is too high, for example, disclosure may be withheld. The researcher has the
view that this criterion can be contentious. In the background to the study (see chapter
1), the researcher observed that some older men were having sexual relationships with
younger girls without disclosing their status to them. It may well be that on evaluation,
the risk of rejection because of their HIV status was deemed too high. Issues
surrounding legal and ethical considerations as well as confidentiality may also fall
under this criterion. This may be true to some extent, but the experience from the
current study would lead to the conclusion that disclosure can still occur despite real or
perceived risk. An argument can be made that this could be a risk stratification situation
whereby, even though there is perceived risk of adverse outcome following disclosure,
adverse outcome carries less risk than not disclosing. It is still not a straightforward,
easy assessment.
The theory also argues that as information is disclosed to others, they become drawn
into a collective privacy boundary which needs to be coordinated. According to Petronio
(2004:203), the disclosers then have certain expectations from the confidants, who are
now shareholders of the private information. The degree of disclosed information within
each boundary may vary (Greene et al 2003:20). Turbulence may arise within
boundaries due to factors such as using wrong rules, misunderstanding expectations,
intentional rule violations, fuzzy boundary lines or being caught in privacy dilemmas
(Petronio 2004:204). As a result the more risky the private information is, the greater the
need to control the boundaries. Greene et al (2003:20) also observe that the boundaries
can shift over a lifetime. This would suggest that different rules and boundaries could
apply at various stages in life from childhood, adolescence, teen years, mid life and later
in life.
Findings from a recent survey carried out countrywide by the Botswana government
indicate that people were more likely to undergo HIV testing if they had assurance that
the knowledge regarding their HIV status remained under their control. They were also
in the same survey indications that fear of exposure of HIV status could cause
individuals not to reveal their status. The survey concludes that while individuals have
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the responsibility to protect others from HIV, it is important for the individuals to feel that
they are in control of their HIV status information, whom to disclose to, and when and
how (Botswana Parliament 2007:11). In the current study, participants demonstrated
that disclosure as a process required careful planning and execution. Following receipt
of their HIV test results, they needed time to reflect on how they would deal with the
issue of telling others about their status. Self-acceptance and readiness were reported
as important prevailing factors that had to be present before disclosure occurred. It can
be inferred, therefore, that to achieve acceptance and readiness to share information
participants would have needed to deal with the sensitive information privately, away
from the prying eyes of others, which can only occur if they are in control of the private
information.
4.4 COMMUNICATION PRIVACY MANAGEMENT (CPM) AND DISCLOSURE OF

HIV STATUS IN DISCLOSURE TO SEXUAL PARTNERS
This theory has been chosen as the most suitable theory on which to base the
theoretical framework of the current study for several reasons. The CPM theory was
initially conceived after studying married couples engaged in highly intimate
relationships. This study explores issues of HIV status disclosure to sexual partners
who were also involved in intimate relationships. The CPM theory is conducive to
understanding disclosure of private information because it also identifies two key
aspects which significantly aid understanding of the concept of disclosure of private
information. These are content and process. The content aspect addresses the nature
(what) of the private information to be shared and the process aspect deals with the
methodology of sharing the information: the how, why, where, when, to whom and by
whom of disclosure. Within these key components, the CPM theory also identifies
privacy rules governing control of private information. Five key criteria used to formulate
the privacy rules are described, which are: culture, gender, motivations, context and
risk-benefit. The theory also puts emphasis on personal and collective boundaries,
which recognises that while private information is personal, those infected with HIV
have to operate within a community and collective boundaries are bound to play a
significant part in their decisions relating to sharing of their private, sensitive information.
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The CPM theory therefore allows for a multi-dimensional approach to understanding
how decisions to share private and sensitive information such as one’s HIV status are
reached. The theory will therefore be utilised to inform study conclusions and
recommendations in the next chapter.
4.5 CONCLUSION
This chapter reviewed the literature on the concept of disclosure of HIV status to sexual
partners and compared findings from this study with the available body of knowledge
from the literature. There were several similarities and some differences identified
between findings from this study and those from studies described in the literature.
Three theories which have been applied in studies on disclosure of HIV status were
then discussed. The CPM theory was chosen for the theoretical framework of the study
and integrated into the findings of this study. The theory of disease progression was
deemed less relevant to the current study, while the theory of consequences was
viewed as encompassed within the CPM theory currently favoured by disclosure
theorists. Reasons why CPM theory was deemed more relevant to the current study
were expounded on. In the next chapter conclusions and recommendations from the
study are made. Limitations of the study are also discussed.
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CHAPTER 5
CONCLUSIONS, RECOMMENDATIONS AND LIMITATIONS
5.1 INTRODUCTION
This chapter will focus on discussion of the main themes in the context of the study
objectives. The study objectives were to

The CPM theory, which was used as the theoretical framework for the study, will be
applied to inform the conclusions and recommendations.
5.2 MAIN FINDINGS
Following in-depth interviews and verbatim transcriptions of these interviews, eight main
themes were identified. The themes were informed by narratives from the participants
as they took the researcher through their personal experiences relating to disclosing
their HIV status to their sexual partners.
The themes will be discussed relative to the objectives of the study and integrated into
the CPM theory. This will be followed by recommendations as a result of the study
findings.
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5.2.1 Factors which relate to disclosure of HIV status to sexual partners
5.2.1.1 Impact of demographic characteristics
The age of the participants in the current study ranged from 26 to 39. There were two
males and seven females. Of the males, one gave the longest interview, while the other
male gave the shortest interview. Their willingness to volunteer information and their
experiences following disclosure appear to have influenced the length of their
interviews. The male participant who gave the shortest interview reported no negative
outcomes, while the male participant who gave the longest interview reported significant
negative experiences. One of the criteria described in the CPM theory is gender. There
were more females than males in this study. The sample was, however, not selected
randomly.
There were three participants who were married, two in casual relationships and four
co-habiting. This was surprising data, as the culture in Botswana tends to encourage
marriage and discourage co-habitation. This may be a reflection of the changing times
in the society. It is unclear as to whether the era of HIV that we live in has resulted in
people deciding to half commit rather than commit fully to the marriage institution.
Hattori and Dodoo (2007:1068), prompted by the idea that marriage offers sexual
exclusivity and by implication should therefore reduce the risk of HIV transmission to
married women, undertook a quantitative study to explore whether marriage indeed
offers protection from risky sexual behaviour. Hattori and Dodoo (2007:1074) found that
unmarried co-habiting women in Kenya were 9.5 times more likely to report multiple
partners than married women living with their husbands. They also found that 11% of
cohabiting women reported two or more partners compared with 2% of married women
living away from their husbands and 1% of married women living with husbands. Their
findings would seem to suggest that marriage remains protective of HIV transmission by
virtue of its sexual exclusivity. Another study done in Uganda a decade ago at the
height of high HIV prevalence in Uganda, however, concluded that while marriage had
been considered desirable by most people in the past, this was not the case currently.
Young people were avoiding commitment to marriage because of the fear of not
knowing the potential spouse’s HIV status, the promiscuity that they had seen occurring
within modern marriages and associated increased risk of HIV, as well as society’s
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condoning cohabitation (Mukiza-Gapere & Ntozi 1995:203). No clear conclusion can
therefore be drawn with regard to what the impact of marital status is likely to be on
disclosure of HIV status to partners. This could be an avenue to explore through future
studies.
5.2.1.2 HIV testing and its impact on disclosure
Health-related concerns were described as the main reason for undertaking an HIV test.
The illness usually involved either the participant or their partner. Exploring the reasons
why people go for testing has a direct bearing on disclosing of HIV status, because
those infected have to face this issue once they know their sero-positive results. It can
therefore be argued that factors which influence an individual to undergo an HIV test
would indirectly influence disclosure of HIV status. It can also be argued that perhaps
some people may not go for their HIV testing for fear of having to deal with the
consequences of a positive HIV test, one of which will be telling others about their
status. Fear of having to deal with issues of disclosure was not directly reported as a
barrier to HIV testing in the current study, however. Greeff et al (2008:312) observe that
while most people have disclosed in the past, with both negative and positive
experiences, HIV infected people will still have concerns about HIV-related stigma,
which could result in people being less willing to undergo HIV testing. Further qualitative
studies exploring whether there is a direct relationship between reduced HIV testing
uptake and perceived disclosure issues could help define this relationship. The CPM
theory sheds light on this subject if it is analysed in terms of the content and process
components of the CPM theory. Going for an HIV test leads to knowledge of one’s HIV
status. This knowledge forms private information and therefore the content. The CPM
theory also indicates that privacy cannot exist without disclosure. Once a result is
received which shows HIV infection is present, the infected person now has to deal with
decisions regarding disclosure or non-disclosure of such information. This situation now
describes the process component as described by the CPM theory and it deals with
how disclosure will be carried out. It is therefore possible that an individual who does
not wish to have to deal with the “process” aspect of disclosure may avoid a situation
which creates information to be disclosed (content), by not undergoing an HIV test.
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It is also interesting to see that despite intense media campaigns encouraging people to
visit voluntary counselling and testing centres, the most important reason why
participants in this study had the HIV test was that their health was under threat, as
opposed to being influenced by public health messages. Boyd, Murad, O’Shea, De
Ruiter, Watson and Easterbrook (2005:65) indicate that Fenton et al (2002) concluded
from their study of black Africans resident in the UK that the black Africans did not
access HIV testing despite prevailing education campaigns on HIV testing and
availability of ART. The CPM theory helps to explain this through the context criterion of
privacy management rules. The education campaigns, which under the CPM theory
would fall under the content aspect, may not be relevant to the prevailing individual
circumstances (context) and therefore lack a positive impact on encouraging access to
appropriate services (process). Some of the reported reasons for not undergoing an HIV
test included not knowing where to go for the test and uncertainty over entitlement.
There was no association with length of period of residence in the UK and uptake of HIV
testing. HIV prevention messages (content) perhaps need to be much more targeted
(process) than they currently are if they are to reach the intended audience.
5.2.1.3 Influence of pre-disclosure deliberations on disclosure
Participants reported both positive and negative thoughts when considering whether or
not they should disclose their HIV status to their partners. The driving force appears to
have been the prevailing situation at the time or the context, which is another criterion
identified by CPM theory as informing rules for disclosure of private information. Those
participants who were in a relationship and knew their partners’ HIV status reported no
concerns prior to disclosing to their partners. It can be surmised that because they knew
they were in the same situation as their partners, the risk of negative outcomes
following disclosure were perceived as minimal. Knowing a partner’s HIV status is
therefore described as an important factor when it comes to decision making about
disclosing to partners in this study. This correlates with findings by Kebede,
Woldemichael, Njau, Yakob, Biadgilign and Amberbir (2010:34) and by Dave,
Stephenson, Mercey, Panahmand and Jungman (2006:119). The risk-benefit criterion of
the CPM theory indicates that people will weigh risks against benefits to disclosing
private information. Disclosure will occur if benefit outweighs risk.
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Another key consideration reported by participants was self-counselling, aimed at self-
acceptance, before asking others to accept them and readiness to disclose. This is what
one participant said, which seemed to echo what others were also thinking before
disclosin : “I kept asking myself, “How will I react if I am found to be positive? This was
before I went for my test. So I decided to counsel myself and to prepare myself in case
my results came back positive”. One participant went so far as to say she couldn’t face
telling her husband who was away on a trip or her children, because she couldn’t accept
that she had a disease which has historically been associated with promiscuity. This
would appear to be supported by Maile (2003:79) in his study of legal aspects of
disclosure among teachers in Cape Town, South Africa. He concluded that teachers did
not disclose their HIV status because HIV positive status was associated with
promiscuity and a feeling that those who were positive got what they deserved. This
belief was also echoed by a Muslim AIDS support group based in Cape Town, who
were quoted as expressing the sentiment that “the idea that HIV and AIDS is a
punishment from God runs in all religions and people who are HIV positive are being
punished for leading a promiscuous or immoral life (Cloete, Strebel, Simbayi, Van Wyk,
Henda & Nqueto 2010:3). Cultural beliefs are described by the CPM theory as
influencing disclosure of private information. It is unlikely that such beliefs will help move
the issue of disclosing HIV forward in a positive direction, especially that they are still
being expressed in 2010 when there have been further developments in HIV treatment
and management.
The pre-disclosure deliberations carried out by the participants in this study illustrate the
dialectical tension between privacy and disclosure as described in the CPM theory. The
tension is created by HIV infected participants’ need to protect their privacy while taking
into consideration the needs of others, in this case their partners. The tension ceases to
exist when disclosure has occurred, as evidenced by the feeling of relief and freedom
described by some of the participants.
5.2.1.4 The process of disclosure
This theme describes how the participants went about the process of disclosing their
HIV status to their partners. Findings from the study show that there were at least four
stages to self-preparation to disclose, and only when these were satisfied would
85
disclosure be more likely to occur. The initial stage involved the participants going
through a self-counselling process to make sure they were mentally fit to cope with
disclosure; this was then followed by a partner-priming fact-finding mission to test the
waters, to try to gauge the likely reaction and to gently lead them towards the actual
moment of disclosure; considering modes of delivering the news; and finally delivering
the news. The participants in this study delivered their news either in person through
face-to-face conversation, by telephone or email. It is interesting that none of the
participants reported giving their partners silent clues as a way of communicating their
HIV status, such as leaving antiretroviral medication and test results where partners
could see them. This form of silent indirect disclosure was reported by Rutledge
(2007:1045). It is likely that any factors which disrupt this preparation stage could
negatively influence disclosure. Factors which give support to the preparation stage
could be expected to enhance disclosure and lead to execution of the disclosure plan.
The CPM theory aids the understanding of these actions. The actions clearly fall under
the “process” aspect of the CPM theory. In this theme participants are describing the
how, when, why and to whom of disclosure of private information in the light of their HIV
status (the “what” or content).
The preparation stage was completed when the news was then communicated to the
partner when the study participant deemed circumstances to be conducive to doing so.
The time scale varied from immediately to several days later. All but two participants
reported that they disclosed immediately after they got their test results, which is
encouraging in terms of prevention of HIV transmission. Of the two who did not disclose
immediately, one disclosed several days later while the other disclosed after years in a
relationship. Even the participant who had an extramarital relationship was able to tell
that partner within a few days of finding out, despite the fact that he lived abroad and
she had to send him an email. Lack of proximity to him did not appear to deter her from
telling him. She told him because she had made a decision to break the relationship “I
also told him that when he returns the relationship will not continue. I told him it was
over because of my status”. This would be in contrast to findings by Raganya (2003:12),
who concludes that being far away from the partner could prevent disclosure. It may be
that if this participant had wanted to continue with the relationship, she might have
delayed or never told him, especially as he was living far away from her. Her actions
would suggest that once the discloser has gone through the deliberations for and
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against disclosing and has come to their own conclusion regarding what needs to
happen next, then disclosure is enabled. This would be in keeping with the context,
motivations and risk-benefit criteria of the CPM theory regarding ownership and control
of information to be shared. The theory suggests that ownership and control are critical
to understanding the way people define and handle private information (Petronio
2004:198). The findings from this study confirm that disclosure is a process rather than
an event. The CPM theory helps to explain this process, taking into consideration the
nature of information to be disclosed (content) and individual circumstances (context,
cultural beliefs, motivations, and gender and risk-benefit assessments).
5.2.2 Factors influencing disclosure of HIV status to partners
These have been classified in two groups, reasons for disclosing and barriers to
disclosure.
5.2.2.1 Reasons for disclosing HIV status
The common reasons why the participants decided to tell their partners about their HIV
status included others-focused motivation, such as a sense of responsibility or living in
the same household with the partner; and self-focused, such as a need for emotional
support, not wanting to keep a secret and needing financial support. The “self focus”
versus the “others focus” is the key to understanding and appreciating the dialectical
tension that exists between privacy and disclosure as described by the CPM theory.
While non-disclosure may be beneficial to the person infected with HIV by virtue of
allowing them to maintain control over their private sensitive information, there also
exists the fear of being found out while keeping such a secret. As long as these two are
out of balance, the dialectical tension will prevail. The findings from the current study
correlate with those by Kebedi et al (2008:81) and Chandra, Deepthivarma and Manjula
(2003:207). Other factors leading to disclosure which were not reported in the current
study were advanced disease stage, fear of murder and fear of breach of confidentiality
(Kebede et al 2008:87) Rutledge (2007:1042) linked an individual’s history before and
after HIV infection with the likelihood of disclosure, which was also not reported by
participants in the current study. Kebede et al (2010:33), in their study based in Ethiopia
to assess the effect of gender on disclosure, found fear of legal accusation motivated
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disclosure in both men and women. Legal implications were not reported as having
influenced decisions to disclose to partners in the current study. The above findings
from various studies add to the notion that factors influencing disclosure are very varied
and made up of multiple permutations. The CPM theory helps make sense of these
permutations through its classification of private information in terms of content, process
and its five criteria used to enact privacy rules for managing private information
5.2.2.2 Others focused
The level of commitment to the relationship was described as the most important reason
for disclosure if partners lived together. One participant summed it up when she said:
“When you are in a relationship with someone you have to tell them everything ...”. This
is encouraging, because even if the relationship ends then at least both partners will be
aware of their status and would hopefully disclose to the next partner that they decide to
co-habit with. This sentiment was expressed by one of the participants when she
concluded that disclosure encompasses the sense of responsibility felt towards the
partner by the discloser. Responsibility towards others’ health was also a very
significant factor which influenced disclosure among the participants. The participants’
interviews revealed that actually sense of responsibility to other people, especially those
close to the participant, was the overwhelming reason for disclosing. Disclosure due to
living together was also an important consideration by participants. There is no obvious
reason to conclude that this was as a direct result of participants being in a marriage or
co-habiting relationship. Although participants went for their HIV test because of illness,
it is interesting to see that illness was not one of the major factors influencing
disclosure. The theory of disease progression was discounted as a key factor
influencing disclosure decisions by Serovich et al (2008:28), who retested the theory of
disease progression and consequences theory and concluded that disease progression
may not be a direct predictor of HIV disclosure. The findings from this study would
appear to concur with that.
5.2.2.3 Self-focused
The perception of the probable reactions following HIV disclosure has been shown to
influence disclosure of HIV status. Perceived positive outcomes have been shown to
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encouraging disclosure. Norman et al (2005:8) have identified expectations of socio-
economic support as the major reason for differences in disclosure rates. The same
study also identified readiness to disclose as a contributory factor to disclosure of HIV
status. Other positive outcomes such as feelings of unburdening and freedom resulting
from disclosure were also described. In this study the following perceived reactions to
disclosure were found to influence disclosure of HIV status:
♦ Emotional support and mental well-being
This was eloquently expressed by one participant who said: “Disclosing your status to
your partner gives you freedom. You don’t live in fear of ... and if something happens
you would feel guilty just because you never told him in the first place that there is such
and such issue”. Living with any secret is hard, as described above by the participant.
Her experience captures the essence of the dialectical tension which exists between
privacy and disclosure as described by the CPM theory. According to Petronio
(2004:203), the CPM theory also suggests rules which govern disclosure and which
confidants are expected to abide by. After sharing the information, the disclosers then
have certain expectations from the confidants, who are now shareholders of the private
information. The expectation among others is that partners will respect these rules and
boundaries once they know the private information and not take actions which would
lead to emotional trauma, regrets and the loss of that freedom to the disclosers.
♦ Adopting safer sex through condom use
One participant was very pleased that her disclosure led to both her and the partner
adopting safer sex practices by using condoms. This is what she said: “We have agreed
to use condoms. He has no problems with that”. Such findings are encouraging, but
disclosure was also found to result in continued refusal to practise safer sex by using
condoms, as was the experience of one of the participants who said: “In the mean time,
my partner not only refused to do the test but also refused to use condoms, it became
such an abusive relationship”. Evidence from the literature regarding the relationship
between disclosure and safe sex remains inconclusive. Simoni and Pantalone
(2004:109) found in their study that up to one-third of HIV positive people continue to
have unprotected sex, sometimes without informing partners who may be of unknown
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status. Parsons, Schrimshaw, Bimbi, Woltski, Gomez and Haltikis (2005:S88) on the
other hand, found that increased disclosure is associated with reduced sexual risk
behaviour.
♦ Financial support from the partner
The participant who attempted suicide when she found out that her partner had
contracted HIV long before her and never told her, ended up marrying him. One of the
key reasons for the relationship surviving was her realisation that although she still felt
betrayed by this man, he had made many financial sacrifices towards the cost of her
health care which she might not have had if she had left him or had been infected by
someone else. She described several ways in which he provided material support,
including providing healthy food, taking her to private doctors so that she could access
the best possible care, and spending a lot of his money in the process. Applying the
CPM theory in this case, this participant found out new information about her partner’s
HIV status (content) through her parents (context, process). She decided to stay with
him because of what she had already gained from him (motivation) and what she
expected to gain in the future (risk-benefit, motivation).
♦ Strengthening of the relationship
Fear of a relationship’s ending can be a significant factor in decisions to disclose. While

it was deemed so by participants, the actual outcome after disclosure by the participants
was mainly strengthening of the relationship. Some participants described it as follows:
“Right now we live together in harmony. We don’t have fights about his previous life
style of running around”. Another participant said: “We have plans to marry in the future.
His family is aware of our plans. They also know my HIV status”.
The outcomes from this study show that relationship strengthening can occur after
disclosure and that perceived negative outcomes are not always realised in practice.
This is in keeping with findings from the literature, as evidenced by the findings from a
study done by Parsons, VanOra, Missildine, Purcell and Gomez (2004:462), who found
that disclosure resulted in increased intimacy with partners among a group of HIV
positive drug users. Sheon and Crosby (2004:2112) reported gay men in San Francisco
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who perceived that disclosure would negatively affect intimacy by ruining the
spontaneity of the sexual encounter, which could in turn lead to a short relationship
lifespan.
♦ Reactions to disclosure
This outcome can be explored in relation to reactions by the discloser and reactions by
the partner to the disclosure. This is a dynamic situation because the discloser will be
reacting to the partner’s reaction and the experience can be negative or positive.
Reactions to disclosure were overwhelmingly positive, with participants reporting

acceptance and support by their partners and families. While the scope of the study is
limited and the findings cannot be generalised to other situations, these findings are
encouraging for the local community from which the sample was taken, as they indicate
that more often than not those who disclose will be given support and be accepted by
others close to them. As one participant put it: “Just disclose; you never know what a
human being will do ... it’s only 2 or 3 who may leave but most will just accept it”. The
CPM theory explains this through the risk-benefit and motivation criteria as
considerations regarding disclosure of private, sensitive information. According to the
theory, perceived positive outcome of disclosing private information such as HIV status
would be enhanced by findings such as those from this study.
5.2.3 Barriers to disclosing HIV status
The main reason contributing to non-disclosure as reported by the participants in this

study appears to be the fear of a negative outcome.
The most significant negative perceptions leading to non-disclosure among the

participants in this study before disclosing, or when thinking about disclosing, their HIV
status to their respective partners and/or family members and friends, include fear of
rejection and being considered an outcast; marriage/relationship breakdown; financial
loss; worrying others and infecting others.
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The barriers to disclosing HIV status to partners can be considered as being driven by
perceived outcomes following disclosure. Perceived negative reactions were very
significant during the initial stages of the disclosure process. It is interesting to note that
while participants reported fear of negative outcomes, they still went ahead and told
their partners. The question is why this happened. Studies looking specifically at how
many HIV infected people who reported fear of disclosing to their partners went on to
disclose anyway and why they did so have not been identified in the literature search.
The CPM theory could also help explain this conundrum, as will be discussed in the
next section.
5.3 FINDINGS AND CONCLUSIONS IN RELATION TO THE CPM THEORY
According to this theory, the confidant or recipient of the private and sensitive
information is considered an integral yet unique part of the communicative process.
According to Greene et al (2003:20), the theory also describes a rule management
system which governs disclosure of information. The rule management system
determines whether full access to private information is allowed (full disclosure) or
partial access (selective disclosure) or restricted access (non-disclosure). Greene et al
(2003:20) add that to understand how people with HIV handle the management of
concealing or revealing their private information, it is useful to know and understand the
privacy rule foundations which are the criteria upon which the rule management system
is based. The five criteria described under this theory are: culture; motivation; gender;
context and risk-benefit ratio.
♦ Culture
The cultural norms and beliefs prevailing within the discloser’s world at the time they are
dealing with disclosure of private information can influence the subsequent course of
action. Issues such as whether they believe in the traditional explanations of HIV
infection and treatments used or in the modern explanation and use of antiretroviral
medicines have an influence. One participant was treated with a combination of
Setswana herbs and coffee by a traditional healer, as she was made to believe that her
ill-health was as a result of sleeping with a widower who had not received treatment
from traditional healers to release the curse of death, but she eventually gave up and
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commenced ART. Based on the researcher’s own personal experience, adults in
Botswana tend to avoid discussions of a sexual nature. This conclusion seems to be
echoed by Maile (2003:79), who observes that talking about sex is probably taboo in
most African countries. HIV is sexually transmitted and to reach the stage of disclosure,
acts of a sexual nature would have to be admitted. Strongly held cultural beliefs about
discussing sex could therefore negatively affect disclosure of HIV status, in keeping with
the premise of the CPM theory.
♦ Motivation
The motivators can be viewed in terms of what the disclosers believe they will gain from
disclosing. In the context of this study these were the perceived positive outcomes,
including emotional and financial support; a feeling of freedom and mental well-being;
safer sexual practices and strengthening of the relationship. If these are identified early,
then counselling could help target and positively reinforce these. Health-care
professionals could also assist their HIV infected patients to achieve some of the
motivators as part of ongoing HIV treatment support and counselling. Counselling
should not end at the VCT (voluntary counselling and testing centre), but there should
be ongoing reinforcement.
♦ Gender
This criterion refers to the whether the individual is male or female, and their sexual
orientation. This study sample is too small to make any conclusions about the
applicability of this criterion. Kebede et al (2010:33), in their study based in Ethiopia to
assess the effect of gender on disclosure, found that disclosure rates were the same
between women and men in their sample, at 94.6% for men and 94.3% for women.
Their study sample size was 705, half of which was male and the other half female.
Fear of legal accusation was reported as a motivator for disclosure in this study.
Reasons for non-disclosure were, however, varied, with men being more concerned
about the partner’s anger and not wanting to worry her, while women were more worried
about relationship breakdown and physical attacks, including murder. Sexual
behaviours were found to differ between men and women recently diagnosed with HIV
in South Africa, according to Olley, Seedat and Steine (2004:72). Their findings showed
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that non-disclosers were more likely to be male and were associated with not having
used a condom in their last sexual encounter. Counselling methods will therefore clearly
need to address such gender differences.
♦ Context
The context in which disclosure occurs, such as the appropriateness and availability of
opportunities and means to communicate; being on ART; pre-disclosure counselling;
prevailing beliefs about HIV; personal beliefs about HIV; relationship strength and
proximity of partners, all influenced disclosure in this study.
♦ Risk-benefit ratio
Weighing the benefits and risks of disclosing, which consist mainly of perceived positive
and negative outcomes following disclosure of private information, was also found to
have influenced disclosure among participants in the current study. Perceived and
experienced negative outcomes included fear of rejection; stigma; not being ready to
disclose; loss of financial and emotional support; past negative experiences following
disclosure; relationship breakdown and loss of self-respect. The CPM theory argues
that the outcome of risk-benefit assessments is likely to influence the rules of privacy
management which the person may use when making decisions on whether to disclose
or not. Greene et al (2003:25) illustrate this observation by relating it to the first-date
rule enacted by a gay man. He had one rule, which was to disclose his status to all his
first dates to avoid wasting time on a relationship that was not going to progress
because of his HIV status.
♦ Uniqueness of recipient of information
The CPM theory also argues that the uniqueness of the recipient of private information
is another important factor which influences whether disclosure will occur or not. It is
possible to conclude, given the findings of the study, that the uniqueness of the recipient
becomes the major overriding factor in deciding whether to tell or not when outcomes of
disclosure are perceived rather than experienced. Perhaps the discloser considers the
partner so unique that he or she can be trusted to abide by the rules governing the
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privacy boundaries of managing private information, and therefore in the main deserves
the honour of being told the private, privileged information, even if not all the rules and
criteria are satisfied. Medical practitioners who treat HIV infected patients are likely to
be their family doctors as well. They are therefore in a position to work with the partner
who wishes to disclose, to identify whether those characteristics perceived as meeting
the criteria for uniqueness do exist in the proposed recipient. This would help avoid
disappointments if these have not been objectively assessed by the HIV infected
partner.
One participant could not bring herself to disclose to two of her consecutive partners,
following negative experiences after disclosing to her first partner. She only disclosed to
the third partner after he told her he was also HIV infected and on treatment. This
participant made the decision not to disclose based on actual negative experiences
following disclosure to her first partner, rather than perceived outcomes/experiences.
Another participant whose relationship broke down after his disclosing his status to his
partner indicated that he would find it difficult to disclose in the future as a result of his
experiences. In these two situations, it appears that even the uniqueness of the partner
can be insufficient to override all the other rules and criteria under CPM theory and
enable opening the privacy boundaries. The significance of previous negative
experiences regarding disclosure of HIV status should therefore not be underestimated
and should be addressed as part of ongoing HIV management and care.
The recent survey carried out countrywide by the Botswana government (Botswana
Parliament 2007:11) concluded that people were more likely to undergo HIV testing if
they had assurances that the knowledge regarding their HIV status remained under
their control. In the same survey there were indications that fear of the consequences of
revealing HIV status could cause individuals not to reveal their status. The survey
findings also conclude that while individuals have the responsibility to protect others
from HIV, it is important for the individuals to feel that they are in control of their HIV
status information and whom to disclose to, when and how (Botswana. Parliament
2007:11). These findings would be in keeping with findings from this study.
The findings from the study in relation to the CPM theory are summarised in table 5.1.
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Table 5.1 Findings based on CPM theory
CPM Content (What) Process (How)

Criteria
Positive Negative Positive Negative factors’
factors/impact factors/impact factors’ impact on disclosure
on disclosure on disclosure impact on
disclosure
Culture Sex education Traditional beliefs Financial Accepting traditional
about causes of support of treatments for HIV
Female HIV females
independence
from males Sex discussions Rejecting
being taboo traditional
beliefs
Motivation Financial Loss of financial Positive pre- Negative partner
support support disclosure reaction
deliberations
Emotional Lack of emotional Negative pre-disclosure
support support Successful deliberations
partner priming
Relationship Relationship
strengthening breakdown
Gender Liberal laws Laws against Societal Societal exclusion
gays and lesbians acceptance &
understanding
Perceived double
stigma
Context Health under Fear of a positive Relationship Relationship
HIV testing threat test strengthening breakdown
Personal gain HIV-related Opportunity for Partner unavailable

stigma face-to-face
Know what is I communication
wrong with them ndividual beliefs
about HIV, e.g.
Access to ART association with
promiscuity
Risk/ Knowing Negative Readiness to Not ready to disclose
benefit partner’s HIV outcome of pre- disclose
status disclosure Ready but partner not
deliberations Self- available at the right
Positive pre- counselling is time
disclosure completed
deliberations Negative partner
Positive reaction
partner
reaction
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5.4 STUDY LIMITATIONS
Participants were aware that the researcher was a health-care professional. This may
have influenced the information captured, depending on whether participants thought it
was deemed appropriate or not for them to share some of the information. The
researcher tried to reduce this by allowing participants to talk freely and not making
statements which participants could deem judgemental. A reflective diary of thoughts
and feelings which occurred to the researcher was kept. The diary helped contextualise
the issues raised by the study participants, allowed for bracketing and maintaining
neutral objectivity during interviews. The researcher also made sure that participants
understood the purpose of the study very clearly, with emphasis on collective benefit
rather than individual gain from the study. The narratives provided by the participants in
this study were not corroborated with those of their partners. Their narratives were
taken at face value. The field notes were used to make observations of congruency
between what was being described and non-verbal cues being displayed. The use of
field notes therefore helped to reduce but not eliminate possible “lack of sincerity”.
5.5 RECOMMENDATIONS
Recommendations based on the study findings are divided into those based on the
second objective of the study, which was to develop evidence-based recommendations
which could assist HIV infected people in disclosing their HIV status to their sexual
partners, and recommendations relating to further research.
5.5.1 Recommendations for evidence-based guidelines to enhance disclosure
These recommendations will be based on both the main components of content and
process of the CPM theory as well as the rule management criteria described under the
CPM theory.
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5.5.1.1 Recommendations from CPM theory privacy rule management criteria
(1) Culture
Public health messages should tailor their content towards the cultural sensitivities
prevailing in the communities they are aimed at. The language used should be such that
it conveys the appropriate message without being offensive. For example, in Botswana
there are two types of marriages, legal and traditional. Some messages aimed at legal
marriages may not be positively received in traditional marriages.
(2) Motivators
The study has demonstrated the very personal nature of factors influencing disclosure
of one’s HIV status to one’s partner. Efforts to encourage disclosure should attempt to
personalise disclosure-related messages from public health specialists. This can be
achieved to some degree by involving the patients’ family doctors, who have the
opportunity for one-to-one regular consultations for health-related reasons with those
who are HIV infected, such as medication reviews.
(3) Gender
Counsellors should receive, as part of their training, literature from research regarding
the effect of gender and sexuality on disclosure of HIV status. This would help them
provide better targeted, more acceptable counselling.
Although homosexuality is outlawed in Botswana, it is inevitable that homosexuals will

access health care services. Health care professionals and counsellors should be
considered less as the enemy and should be bound by their professional code of
conduct. Familiarisation with some of the sexual issues pertaining to homosexual
practices would help health care professionals and counsellors to deliver relevant
counselling services to homosexual people. Such practices may contribute to positive
uptake of disclosure-based HIV prevention messages.
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(4) Context
HIV prevention messages advocating disclosure should be tailored to suit the target in
the right place at the right time. For example, TV messages may not reach those in the
villages even though they would easily reach those living in cities. Use of text
messaging to distribute HIV prevention messages may well be better received by
younger generation, compared with the older generation.
Pre-HIV testing and counselling should also aim to address issues related to disclosure
of HIV status in more depth. Initial introduction of the subject could be done at the VCT.
Further discussion to address concerns relating to disclosure of HIV status could then
be continued during subsequent access to medical services by those who are HIV
infected.
(6) Risk-benefit
HIV infected individuals should be empowered on how to recognise their own individual
situations, such that they know when it is right to tell and when it is not. This way
negative experiences following disclosure could be minimised.
The above recommendations are summarised in table 5.2.
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Table 5.2 Recommendations based on CPM theory
CPM criteria Content (What) Process (How)

Enhances Prevents Enhances Prevents disclosure
disclosure disclosure disclosure
Culture Culture-sensitive Culture-insensitive Being sensitive to Incorrect mode of HIV
HIV prevention HIV prevention cultural practices prevention message
messages messages e.g. traditional delivery e.g. tone and
marriages language
compared with
modern Insensitivity to cultural
marriages norms
Motivation Personalised Very generalised Identifying Delivering “one-size-
public health public health individual fits-all” messages
messages for messages motivating factors
age, sex, marital
status, Identifying and
employment targeting right
status, financial audience -
situations cohabitation,
singles or married
Closer
collaboration
between VCTs
and family
doctors
Context Contextualise HIV prevention Target village Delivering “one-size-
HIV disclosure- messages meetings, fits-all” messages
related inappropriate for schools, health
messages e.g. the occasion or posts for villagers
married couples, individual groups
cohabiting TV, text
couples and messaging, bill
traditional boards for
marriages town/city dwellers
and younger
generation
Gender Health care Sexual differences Appropriately Ill-equipped
service provision trained counsellors/health
and counselling Other sexualities counsellors care professionals
services which (e.g. homosexuals)
are gender carrying double Providing for Neglecting sexual
sensitive stigma other sexualities differences/orientation
Risk-benefit Individual Financial/emotional Empowerment of Failure to recognise
circumstances; dependence those infected individual
financial and with HIV to risk- circumstances and
emotional Abusive assess their put appropriate
dependence; relationships situation correctly provisions in place
nature of before disclosure
relationships occurs.
Involve family
doctors
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5.5.1.2 Recommendations for practice and health education
(1) One of the recommendations is that, where appropriate, sexual partners could be
offered same-time HIV testing. Partners will need to be counselled first,
especially in cases of sero-discordance.
(2) Disclosure considerations have been shown to have the capacity to indirectly
influence uptake of HIV testing services. There is a significant need for HIV
disclosure issues to be given increased prominence during HIV test counselling,
because telling people to go for the test while not addressing the emotional
burden resulting from knowing their status and dealing with issues such as
disclosure is unlikely to be effective in encouraging effective use of the voluntary
counselling and testing centres.
(3) There is a need to set up personalised local support systems for those dealing
with the consequences of both disclosure and non-disclosure. Such systems
could include a confidential help-line accessible 24 hours a day most days of the
week, and local support groups made up of those who have experienced
negative outcomes from disclosure of their HIV status.
(4) A statistically validated screening tool which captures factors identified as

influencing disclosure of HIV could be produced and administered as part of the
pre-HIV test to identify those at risk of negative outcomes following disclosure,
because it is a given that after the test results are out, disclosure issues become
pertinent.
5.5.3 Recommendations for further research
(1) While it may be tempting to advise those infected with HIV who are afraid to
disclose that disclosure could contribute to reducing HIV transmission through
adopting safe sex, caution will need to be exercised, as the current evidence
remains inconclusive. Further research is therefore recommended in this area,
through a quantitative study to investigate the rates of condom use following
101
disclosure of HIV status to partners among sexually active HIV infected
individuals in Botswana.
(2) A qualitative study to explore the effect of the HIV epidemic on the institution of
marriage in Botswana is suggested. The study could help inform researchers and
others whether the values attached to marriage have changed as a result of the
HIV epidemic and, if so, what the probable impact of such a change has been on
disclosure of HIV status to partners.
(3) Quantitative studies are suggested for comparing rates of disclosure among
married couples with those of co-habiting partners and to understand whether
such differences have implications for public health efforts to encourage
disclosure of HIV status as a means of reducing HIV transmission. The study
findings could also be used to inform a need to review current disclosure
messages.
(4) A qualitative study is recommended to investigate whether increased material

provision to enhance financial security of people living with HIV could promote
efforts to reduce HIV transmission by removing the fear of loss of financial
security as a barrier to disclosing to their partners.
(5) Some participants suggested punitive measures to be taken against those who
do not disclose to partners. Further studies to assess the understanding by those
infected with HIV of the legal implications of non-disclosure in the Botswana
setting would shed more light on how likely it is that such punitive measures
would be acceptable to those infected and what effect the measures would have
on disclosure rates.
5.6 CONCLUSION
HIV infected people have to deal with the issue of disclosing sensitive personal
information as soon as they take that first step: to have an HIV test. Disclosure is
therefore a process which begins much earlier than the actual moment of telling.
Findings from the study reveal that disclosure is a process which begins before the HIV
102
test and probably continues beyond the moment of disclosure. It is fluid in nature and
does not follow rigid steps. HIV infected people think about it and take it very seriously,
so that if they do not disclose, it is because of several layers of deliberations and
experiences and not purely because of selfishness or irresponsibility. The most
important factor influencing disclosure, based on the findings from this study, remains a
sense of responsibility to others, followed by personal emotional and financial gain. The
CPM theory goes a long way to clarify and help explain decisions regarding sharing
sensitive personal private information such as disclosure of HIV status.
The study began as a journey to explore and understand the first-hand experiences of
those infected by HIV following disclosure of sensitive private information to partners
regarding their HIV status. The study has provided insight and illumination of those
experiences and a better understanding of the factors that influence decisions to
disclose HIV status. The study findings have enabled recommendations to be made
which could enhance disclosure of HIV status.
103
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Botswana. 7th AIDS Conference. Durban.
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ANNEXURE A
Research clearance certificate from UNISA Ethics Committee

ANNEXURE B
Permission letter from Ministry of Health, Botswana

ANNEXURE C
Permission letter from GMT Surgery

ANNEXURE D
Interview schedule
ANNEXURE E
Reflective diary
ANNEXURE F
Consent form – Setswana

ANNEXURE G
Consent form – English

ANNEXURE H
Field notes: an example

ANNEXURE I
Setswana interview script

ANNEXURE J
English interview script

ANNEXURE K
Data analysis illustration of interview script

UNIVERSITY OF SOUTH AFRICA
Health Studies Research & Ethics Committee
(HSREC)
College of Human Sciences
CLEARANCE CERTIFICATE
22 June 2009 3488 7393

Date of meeting: ……………………………… Project No: …………………………
Project Title: FACTORS INFLUENCING DISCLOSURE OF HIV STATUS

AMONGST THE YOUTH IN BOTSWANA
Researcher: Dr T Masupe
Supervisor/Promoter: Dr GH van Rensburg
Joint Supervisor/Joint Promoter: Prof SP Human
Department: Health Studies
Degree: MPH
DECISION OF COMMITTEE
Approved √ Conditionally Approved
Date: …22 June 2009……………………………
Prof VJ EHLERS
RESEARCH COORDINATOR: DEPARTMENT OF HEALTH STUDIES
Prof MC Bezuidenhout
ACADEMIC CHAIRPERSON: DEPARTMENT OF HEALTH STUDIES
PLEASE QUOTE THE PROJECT NUMBER IN ALL ENQUIRES

The interview schedule
Grand tour question:
Tell me about your experiences, feelings and thoughts about disclosing your
HIV status to your partner.
Study objectives
 To identify, explore and describe positive and negative factors which

relate to the disclosure of the sero-status to sexual partners.
 To develop evidence based guidelines which can assist HIV infected

people in disclosing their HIV sero-status to their sexual partners
Researcher’s reflective diary
Preconceptions
- Disclosing to partners should be a good thing to do

- May depend on other issues between individuals
- Is it morally right or wrong? - Probably right but depends on
perceptions of morality. Who defines morality anyway?
- Is it really going to help reduce HIV transmission?-it’s better than
nothing I think…
- The problem of human rights- I am all for protecting those infected with
HIV (hey I was after all vice chairperson of BONELA (Botswana
Network of People living with HIV/AIDS) but if they don’t behave
responsibly then may be they don’t deserve such protection???
- If I had HIV I would do the right thing, just tell regardless but that’s me!
During interviews
- After day 1, interviews (1) and (2) these people were treated so bad I
am wondering if it is worth it, but there are always two sides to a story.
Too early to judge really, not a good start though. I’m pleased there
were only two interviews to do today!
- is this turning out to be blame and vent exercise
- need to keep an open mind
- After interview (3, 4 and 5) - disclosure may not be such a bad thing
- I am not so sure now. Mixed emotions
- After interview (8), this lady is concerned about older men and younger
women relationships just as I am. As a parent I am for disclosure in this
situation. I feel it is not right for older men who have enjoyed life to do
this to young girls. These young girls also need to stop chasing after
the money
- Parental responsibility and upbringing? May be we wouldn’t be here if
these were adequate or am I being judgmental. I feel strongly about
this though
1
After completion of interviews
- My views seemed to fluctuate (yo-yo would describe me ha ha ha ha I
laugh at myself) depending on participant’s experiences and how well I
connected with them during interviews (I am getting soft in my old age
maybe…..)
- One day I feel disclosure has to occur regardless but after interviews
with participants with bad experiences I am not so sure. This is why I
did this study…..to become a bit surer….
2
TUMALANO YA GAGO YA TSAYA KAROLO
KETAPELE
Leina la me ke ngaka Tiny Masupe. Ke modiri bo bongakeng ja sekgoa mme
gape ke mo di thutong tse dikgolwane tsa go tlamela botsogo js sechaba.
Dithuto tse ke di ithutela le sekole se se golo sa Afrika Borwa. Nngwe ya tse
di tlhgokahalang gore ke wetse dithuto tse ke mokwalo wa bukana e e
tsamaelalng le se ke se ithutang. Gore ke kgone go kwlala bukana e, ke dira
patlisiso maikutlo ka go seka seka le go leka go tlhaloganya tsela e e neng ya
tsewa ke bao ba ba tshelang le mogare wa HIV ha ba leka go bolelela ba ba
tshelang le bone ka seemo sa bone sa HIV.
Maikaelelo a mokwalo o ke gomgo neela tshedimosetso e e lekaneng go go
thusa ha o dira tshwetso ya gore a o dumela go tsaya karolo mo patlisiso
maikutlo e. Ke gakolola gore tshedimosetso e, e ka tswa e sa tshola tlhaloso
yotlhe e o e tlhokang. Ka jalo ke go rotloetsa gore o nkitsise ka ape
matshwenyego a o ka tswang o na le one mabapi le tlhaloso e gore ke leke
go araba tsotlhe dipotso tsa gago ka bophara. Sesupo sa ka ka ha o ka
ntshwarang ka teng ka mokwalo le mo megaleng ke seno ha tlase ha:
1
Tiny Masupe
P O Box 45445
Riverwalk
Gaborone
Botswana
Phone: 3937601 mobile: 71812082 email: taezor@hotmail.com
SETLHOGO SA DITHUTO TITLE OF THE STUDY
Ke a he mabaka a a ka dirang gore motho yo o tshelang ka mogare a kgone
go kgosta a seka a kgona go itsesi mokapelo wa gagwe ka seemo sa gagwe
sa gore o na le mogare wa HIV?
DIELO TSA DITHUTO
Dielo tsa dithuto tse ke di dirang ke gore ke tle ke kgone go rarabolola le go
tlhalosa mabaka one a a ka rotloetsang kgotsa a tshabisa ba ba tshelang le
mogare wa HIV go bolelela bakapelo ba bone ka seemo se. Maikaelelo ke
gore ko bokhutlong jwa patlisiso maikutlo le le dithuto tse, ke kgone go ntsha
dikgakololo tse disupang ka ha ba ba tshelang le mogare ba ka thusiwang
kgang e e matswakabele e ka teng.
2
KE MANG YO O KA TSAYANG KAROLO MO PATLISISO MAIKUTLO E?
Mongwe le mongwe yo o nang le mogare wa HIV wa dingwaga tse di
tshwanetseng, yo gape a tsamayang bongaka jwa go amana le kalafi ya HIV
mo kokelwaneng e e tlhophilweng mo Gaborone. Batsaya karolo gape ba
tshwanetse ba bo ba na le bakapelo mme e bile ba kile ba tshwanelwa ke go
itsise bakapelo bao ka seemo sa bone sa mogare wa HIV.
DITSAMAISO
Patlo maikutlo e tla a bo e le ya mothale wa puisano e e tseneletseng
magareng ga moithuti le mo tsaya karolo yo o tshelang le mogare wa HIV.
Bokopano jo bo tla diragala hela ka nako le ko lehelong le le siametng
motsela le mogare go netehatsa gore sephiri sa gagwe se sireletsegegile ka
nako tsotle. Puisano e e tla a bo e gatisiwa ka setsaya mantswe. Ba tsaya
karolo bat la a bob a itsiwe hela ka dinomoro tse moithuti a tla di ba hang go
itsa gore maina a bone kgotsa sepe hela se se ka lemotshang motho ope
gore motsaya karolo ke mang se se ka sa nna teng.go tsaya karolo mo
patkisiso maikutlo e, go tla a bo go sa patelediwe. Motshela le mogare yo o
tlhophilweng o na le tshwanelo e e tletseng ya go seka a dumela go tsaya
karolo. Ga sepe se se bosula se se ka mo diragalelang ha a sa dumele go
tsaya karolo. Thebolo le tumalano ya go tsaya karolo le yone e kgona go
hetogelwa dipatlisiso di ntse ditsweletse. Go ka nna ga tlhokahala gore
moithuti a eletse go tshwara puisano ya bobedi le mo tsaya karolo. Ha se se
3
ka diragala, mo tsaya karolo o tla neelwa sebaka se se lekaneng go re a
ikakanye a ba a itsise moithuti gore a se se ka kgonega.
DITUELO LE DITLAMORAGO TSA PUISANO E MO MOTSAYA
KAROLONG
Jaaka mo tsaya karolo, ga go na madi ape a o tlhokang go a duela. Se se
tlhokwang hela ke nako ya gago go nna ha hatshe mo puisanyong le moithuti.
Botsogo ja gag obo na go tlhoka tshireletsego ka ntlha ya puisano e. Ha
mowa wag ago o ka amega ke go gakologela tse di bosula tse di di
diragetseng ka ntlha ya puisano e, o tla a neelwa leina le megala ya mokaedi
yo o thusang ba mewa e e amegileng ka epe hela tsela gore a go he thuso e
o e tlhokang. O tla a neelwa megala le leina la gagwe ka yone nako ya
puisano..
DITLA MORAGO TSE DI MOLEMO MO GO WENA
Go tsaya karolo ga ga gago go solohetswe gore go tla a thusa sechaba ka
kakaretso go lebilwe dikgakololo tse di tla a tlang morago ga puisano e le ba
ba tshelang le mogare jaaka wena. Ga go na dituelo tsa madi. O tla sielwa
metsenyana.
4
SEPHIRI
Mekwalo le megatiso ya puisano e tla a tshwarwa le go bewa ka mo go
sirelesegileng thata. Morago ga dithuto di sena go wela, tse tsotlhe di tla a
nyelediwa. Bangwe ba ba berekang le moithuti jaaka bathatheledi ba gagwe
ba ka nna le gone go batla go bona mekawlo e go nna sesupo sa gore e le
ruri moithuti o dirile tiro e e tlhokwang. Mme le ha go ka nna jalo, ga bake ba
kgona go lemoga gore mokwalo ke wag a mang ka e tla a bo e le dinomoro
hela e seng maina a batho.
DIPOTSO LE MATSHWENYEGO
Dipotso le dikakgelo le ape hela matshwenyego di a amogelelsega mme e
bile di tla a reeediwa di be di arabiwa ka ha go tshwanetseng.
THEBOLO E E SEDIMOGILENG
Nna ke le mo tsaya karolo ke dumalana gore ke badile mokwalo o, e bile ke o
tlhalogantse sentle. Morago ga go o bala ke dumela go tsaya karolo mo
patlisisong maikutlo e. Ke tlhaloganya gore key a go tshwara puisano le
moithuti e e batlisisang maikutlo a me mabapi le kgang ya go bolela semo sa
HIV. Se ke thebolo ya me ya gore ke dumela go tsaya karolo. Ke tlhaloganya
gore ken a le tshwanelo ya go seka ke dumela go ntsha thebolo kgotsa go
fetogela thebolo e ka nako nngwe le nngwe.
5
LEINA:
SAENA:
LETSATSI
6
INFORMED CONSENT FORM
INTRODUCTION
My name is Dr. Tiny Masupe; I am a medical doctor studying for a master’s
degree in public health with the University of South Africa. As part of my
degree program, I am required to complete a research project. For this
project, I am interested in exploring and describing experiences that people
infected with HIV have had in relation to disclosing their HIV status to
partners. The aim of this consent form is to provide you with enough
information about the study, so as to enable you to make an informed
decision about participating in the study before you do so. The information
provided here may not be exhaustive. You are encouraged to raise any
concerns or to seek any further clarifications you may have with the
researcher. The researcher’ contact details are as follows:
Tiny Masupe
P O Box 45445
Riverwalk
Gaborone
Botswana
Phone: 3937601 mobile: 71812082 email: taezor@hotmail.com
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TITLE OF THE STUDY
Factors influencing disclosure of HIV status to sexual partners in Botswana
STUDY OBJECTIVE
The objective is to explore and describe the factors which influence decisions
by HIV infected people to disclose their HIV sero-status to their partners, so
that recommendation may be drawn form the study conclusions on how they
can be supported though this complex process.
WHO IS ELIGIBLE FOR INCLUSION IN THE STUDY?
All HIV infected patients falling within the chosen age, who attend the
identified health care facility in Gaborone for their HIV care and treatment.
They also have to be in sexual relationships and have should have disclosed
their HIV sero-status to their partners.
PROCEDURES
Information from identified eligible participants will be collected in the form of
in-depth interviews. The researcher will conduct the interviews at an agreed
time and location which ensures privacy and confidentiality are maintained at
all times. The interviews will be recorded. Participants will be identified by
codes to protect their personal details and confidentiality. Participation will be
voluntary. Consent and participation can be withdrawn at any time during the
study. There may be a need for more than one interview, but the participants
will be given ample notice if this becomes necessary.
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COSTS AND RISKS
There will be no monetary cost to you only your time. Your health will not be
harmed by participating in this study. If your psychological well being has
been affected by the issues that came up during the interview, you will be
provided with contact details of a counsellor to help you.
POSSIBLE BENEFITS
Your participation will help to achieve the study objectives and possible
recommendations from the study results. The benefit may be collective rather
than individual. There will be no monetary compensation for participating in
the study. Refreshments where required will be mad available.
CONFIDENTIALITY
Records will be coded and stored securely. They will be destroyed once the
study is complete. Some members of the research team may require viewing
some of the records as part of assessing the quality of the study. There will be
no details in the records that could make you identifiable.
QUESTIONS, CONCERNS
These will be welcome and will be given the appropriate attention.
INFORMED CONSENT
I have read and understood the above information. I agree to take part in the
above named study. I understand I will be asked to undergo an interview that
asks for my views about disclosure of HIV status. I consent to taking part in
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this study. I understand that I am entitled to decline to take part in the study or
to withdraw at anytime.
NAME
SIGNATURE:
DATE:
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Field notes-an example
Interview 1
38yrs
Diagnosed 2003
First partner died 2005
Second partner 2006-2008 died RTA
Third partner 2009
Setting: office at GMT surgery
Appearance: smartly dressed lady carrying an expensive looking hand bag
Behaviour: pleasant, smiles a lot, seems rushed as well
She avoids eye contact when discussing non disclosure to her
2nd partner. She briefly looks at the recording device as if to say
pause it please.
Looks distracted when talking about death of her second partner
and looks away momentarily. She still feels the pain. She looks
at her glass of water but does not drink form it.
Eyes light up as she describes the feeling of relieve after
disclosing to her third partner. She puts her handbag on the floor
beside her chair as if she now feels safe to relax. This is the first
time she has looked relax since the interview started.
More relaxation and a suppressed sigh as the tape recorder is
switched off. She stands by the door to wave as she leaves the
clinic.
Communication: slow, soft voice but becomes pitchy when she talks about his
anger and denial after she told him. Clutches hand bad tightly when she
mentions abusive relationship.
Interview no 1
Interviewer: E mma jaaka ke sa tswa go bolela ke mo patlisisong maikutlo o

ne a o. so wena hela o ka mpolelela ka gore e rile o sena go
nna o utlwa seemo sa gaggo ga diragala jang gore o bolelele
yoo bogolo jang yo o tshelang le ene e le partner ya gago
Participant: ee gone ke itestile ka 2003, ha ke itesta ke ha ke le positive.
Interviewer: hm
Participant: Ha ke le positive go bo go raya gore ke ya go bolelela partner

yo ke nnang le ene. Ene e le ene rraagwe ngwana. Ha ke
mmolelela, A ke re o itse gore banna ba dingalo jang? A ba a re
nna e bile ga ke kake ka ba ka nna positive”.nna ke siame”
Interviewer: hm.
Participant: Ga ke kake ka ba ka nna positive.A ba a gana a ba a gana le go

ya sepatela. Ke bo ke boela gape ko ngakeng ke mmolelela,
ngaka a ba a re “a ha motho a gana ga gona gore o ka mo reng”
Interviewer: hm
Participant: nna o mo leke hela gongwe o ta dumela go itesta. Ngaka go

tswa ha a ba re mme go ray a gore re dire CD count re bone
gore CD e tsamaya ha kae. Ke bo keya go dira CD count e bo e
wela ha go,e E ne le 200. he le 200 a ba a adviser gore mme ha
e le 200 go raya gore o simolole medication gore o seka wa
dropela below 200. gone that same year 2003 ke bo ke simolola
medication, ke simolola go tsaya treatment. Rre ke ha ke
mmoleletse o a gana go ya testing, ha a gana go tsaya test
….(pause) ka na go raya gore le di condom o gana go di dirisa.
E ne e le mo gotweng go abusiwa hela, go abusiwa, ha o re o
bua se o molato. Ga a bate go dumela se o se buang
Interviewer: hm
Participant: e be go rata gore ga re utwane, go helela e ke te re a kgaogana.

A nna koo ke nna koo
Interviewer: E le yone kgang ya teng
Participant: E le kgang ya teng re lwela yone. Gore at least ha a sa bate go

ya sepatela re dirise di condom. Ene a sa bate go di dirisa. Go
raya gore 2004 a ba a simolola a nna a lwala. A tswa dikaku. A
tshewnyega mme a ntse a gana go itestsa. 2005 go bo go raya
gore bolwetse bo a gakala, o a hupela… (long pause) a ba a
helela a thokahetse. O ne a thokahala
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Interviewer: a ntse a gana
Participant: a ntse a gana go itesta. O thokahetse a ntse a gana go itesta E

be go raya gore ke nna ke le nosi jaanong a kere o thokahetse.
2006 ….(long pause) ke bo ke bona relationship e ncha. Mme
mo relationshiping e ncha e le kene ke tsaba go re ke bolelele
rre yo ken nang le ene gore ka na nna ke tsaya medication.
Interviewer: mhm
Participant: Ke di nwela mo sephiring ee mo e reng motho a emelela,

(cough)Ha ka emelea ke gone ke bonang chance ya go tsaya
dipilisi ke e nwa, ke tshaba go mmolelela.
Interviewer: O ne o tshaba eng thatathata?
Participant: Gore a o ta accepta situation e ke mo go yone. Ee, a ga a na

gore ke ta mo tsenya bolwetse.
Interviewer: ee
Participant: Ke ne ke santse ke le ko Orapa ka 2006, e be go raya gore ka

2006 December ke be ke movilea mo Gaborone.
Interviewer: Le ene o ne a le ko Orapa?
Participant: ene a ba a sala kwa e be e le gore because of distance ga re

bonane thata. A ba a helela a le koo. Le ene nna ga ke itse gore
ke dilo tsa eng, 2008 le ene a ba a thokahala mme e ne e le car
accident. Go bo go raya gore o a thokahala
Interviewer: mh, go ray a gore a sa itse
Participant: A sa itse, ene o thokahetse a sa itse gore ke mo treatment ke

nwa dipilisi. Ke n eke dinwela he la mo sephiring ke tshaba go
mmolelela. E be e le gore this year 2008 February ke bo ke
bona relationship e ncha. Fortunately motho yo ke neng ke
kopane le ene, ke be ke hithela le ene a le mo medication. Ene
o kgonne go mplolelela gore “I am positive ke tsaya medication”
go bo go raya gore le nna jaanong ke kgona go open up ke bo
ke mmolelela gore le nna kana go raya gore we are singing the
same song. Go raya gore re tshela hela jalo.
Interviewer: botshelo bo bo bo tswelela
Participant: Ee Jaanong botsehlo bo botoka thata.
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Interviewer: ee mma. Mme ke bata o boela ko ya 2006 ya ga rraagwe
ngwana.
Participant: E ne e le ene wa ntha yo ke simolotseng hela le ene ke hetsa

sekole ke nna le ene
Interviewer: ee, yo le neng le kopane ka 2003
Participant: en eke sale ke kopana le ene ka bo 90’s. Re tshotse nwgana ka

1992. affair ya rona je ya bo 90
Interviewer: ok ee
Participant: re hetsa sekole. Ke ntse ke nna le ene hela, ke nna le ene. Go

ne go na ;e distance mo go rona, a nna ko Serowe ke nna ko
Orapa, re ntse re meeta. 2003 ke gone ke be ketsaya tshwetso
ya gore key a go itesta. Kene ke ya go itestsa hela ke sa lwale,
ke sa tshwenyege gope hele
Interviewer: Ok
Participant: Ee
Interviewer: O ne o utule hela melaetsa ya bo tebelopele
Participant: Ee gontse go twe ka na go na le bolwetsi, go a ichekiwa. Ke be

key a go itesta
Participant: Ee . Ha ke itestsa ke bo ke hithela ke le positive
Interviewer: hm
Participant:: ee
Interviewer: So o new a di tsaya jang dikgang tsa teng? O ne wa ikutwa jang
Participant: Ah… ha e sena go nna ngaka e mplolelela, Ke ne ka accepta

situation, ka bolelela cousin ya me. Ke ene a ne a le close le
nna.Ke be ke mmolelela gore kana situation ke ye A ba a re
nnyaya mme ga se bohelelo ja botshelo, gab o helele gone ha.
Tsaya medication hela o ta siama.
Interviewer: And then rrabo ene ga tsaya nako e e kae gore o mmolelele?
Participant: Ha ke tswa sepatela hela ke sena go nna ke bolelelwa gore

kana “o positive” kene ka mo founela. Ke ka tshooletsa mogala
hela ke be ke re ke kopa gore o ye sepatela o ye go icheka.Ke
tswa go icheka maduo ga a nna sente. Mo mogaleng hela a ba
a kelema.
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Interviewer: A reng?
Participant: Nna ga nkake ka nna positive! Nna ke siame.
Interviewer: So a akanya gore wean o ka tswa o o tsere kae?Go raya gore o

ne a akanyetsa gore nna ke o tsayaya kae.
Participant: go raya gore ene o ne a akanyetsa gore ke o tsere koo, ko ke

nnang teng ka gore o ne a le ko Serowe wean o le ko Orapa A
ba a re nnyaya nna ke siame mma, go raya gore mogare ke wa
gago
Interviewer: Mabaka a mangwe a a neng a go tshabisa go mmolelea , le ga

le ka ene o new a mmolelela immediately ka phone. O new a
mmotsa gore o ha kae pele o sa tseye gore kana o toga a
idibala kana….
Participant: Ee nnyaya Kene ke mo tshwere ka landline ya mo tirong a ke re

ke utwa gore o mo ofising. O ne a theogela a le nosi mo ofising.
Nnya ke bo ke tswelela hela ke mmolelela.
Interviewer: A ba a ta a go leletsa later kana ga bo go diragala jang after
wards.
Participant: nya a ba re nna ke siame hela, ga go kake ga nna jalo. A ba

adididmala hela after few days a aba re kante wa re golo hale
wa re o positive? Ke be ke re ee, maduo a re a positive. A ba a
re nnyaya nna mma ke siame
Interviewer: And then ha re yak o 2008 ,ka 2006 a ke re go raya gore o newa
simoloa relationship e ncha?
Participant: Ee, e ncha,
Interviewer: yone eo ke gone o neng o tshaba
Participant: A ke re mo go ele ya ntha motho o ne a nkgaphela kgakala ke

mmolelea. E ya bobedi ke saitse gore tota jaanong key a go
simolola ke reng. A motho yo o ta accepta se ke se buang? A ga
a na gore ke ta mo tsenya bolwetsi?
Ke n eke akanya gore o toga a re nnyaya mma a re togele.
Interviewer: Ok, hm, so it never happened?
Participant: Ga ke a mmolelela hela gothelele
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Interviewer; Jaanong wa gompieno ene le simolotse jang?
Participant: Wa gompieno ene o napprochiitse hela a mpata.nnya hela re bo

re dumalana. Ha re sena go nna re dumala, Ke ene a
simolotseng a ithalosa gore nna ke ntse jaana.Ke enema
simolotseng hela a ithalosa. Ke bo ke re nnya le nna ke ntse
jalo. Go ray a gore ha a ne a sa ithalosa pele ken e eke ya go
ddidimala(eyes wide open) ken e key a go lebelela pele gore
motho yo o ntse jang. A e ta re ke bua o ta accepta se ke se
buang. A ga a na go nrejecta.ee
Interviewer: Fortunately ga go a nna jalo.
Participant: Ga go a nna jalo.
Interviewer: So ha o compare ka ha o neng o tshela ka teng mo sephiring

seo ka partner ya bobedi le gompieno, o se mo sephiring le
itsane gore le ntse jang mmogo, ha o compare botsehlo jag ago
go harologana jang?
Participant: Hey (big smile) nnya Ha le ke ne ke sa tshele sente, go ne go

le bokete. ken e ke bona hela le nna ke le mmolai. Ke gore ke
ipotsa gore ha a ka lemoga, go ya go nna jang? O ne a ya go
bona ke le motho yo o ntseng jang? But gompieno ke bona ke
tshela sente hela, ka gore le yo ke gona gore nako e cjaile a re
new. Gompieno ke nako ya check up, a re ye check up.
Gompieno ke siame hela botshelo bo free.
Interviewer: Ga go sa thola go le bokeke
Participant: Ga go bokete. La ntha mma, ee go ne go le dingalo. Thata. Le

nako ya gore ke tseye medication ken e ke tshaba go tsaya ke
tshabe gore o ta mpotsa gore tse ke tsa eng jaanong tse o di
nwabg?
Interviewer: Go raya gore o ne o sa di tseye ka nako e e beilweng.
Participant: Ee, ha gongwe ken e ke eta ke skipa
Interviewer: Malatsi?
Participant: Nnya, ke raya dinako, ke kgona go hitisa ka di houranyana.
Interviewer: Hey nnya mme o thusegile
Participant: Thata
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Interviewer: Jaanong ha o akanaya hela dikakyo tse o ne o nale tsone
before o bolelela motho leha o sena go mmolelea e be botshelo
botswelela, a din e di le valid. Ke raya dilo tse di neg di go
tshabisa go ka bolelelela motho yo mongwe?
Participant: Ee Tsone ke ta re divalid ka gore kana gore o tshabe go bolelela

motho, a ke re o tab o o utwa dipuo tsa gagwe tse a di buang. o
utwa maikutlo a gagwe gore motho a e ta re ke molelela, a o ta
go accepata kana o ta go rejecta. O utwa pele mo go bueng ga
gagwe, ha gongwe le tsere dikgang. Gore ha gontse gotwe kana
go na le bolwetse ke jo a re testing ene a reng.
Interviewer: So yole o ne o utwa gore dikgang tsa gagwe…
Participant: Ee yolew o ne a gogela go sele hela. Yo o reng nnyaya nna ga

ke ka ke ka nna le mogare; goraya gore ke loilwe kana o ta ka
one.
Interviewer: Ok. So ha o soboloka hela re labile gone go boloka nako, di

experience tsa gago in terms of gone go discloser to your
partners tse di positive le tse di negative, o ka re ke eng?
Participant: Gone mme tota re tshwanetse go discloser ka gore ha o

disclosiste le wean o utwa o nna… o nna free.Ke raya gore le
motho yo o nnang le ene o a thaloganyaa situation e o leng mo
go yone. Ga go nne bokete jaaka o le mo sephiring.
Interviewer: Go nna mothoho.
Participant: Go nna mothoho thata.
Interviewer: Go thohohatsa eng hela
Participant: O a thaloganya gore kana motho yo ke tshela le ene mme o

tshela jaana. Re tshwanertse go dira jaana gore re iphemele. Re
tshwabetse gore re je mo le mo le mo, gore mmle e nonohe. Ha
o re o seka way a bojalweng, le ene o thaloganya gore ke eng a
ka se new bojalwa. Where as yo mongwe yo mo lehihing ga a
na go thaloganya gore ke eng o rialo.
Interviewer: So O ka advise bae leng gore ba tshela le babagwe mme baise

bababolelelo, wean o ka ba advisa o reng hela ka kgang ya
teng? Especially ba ba tshabang
Participant: Ke gore hela o leke, o bone go re o ka mo tsena jang? Ka gore

that way go ne go botoka o mmoleleltse.
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Interviewer: Thuso e ba ka e boning ke eng especially ba e leng gore ba a
tshaba go bolelela ba bangwe? O bona ba ka thusiwa ka tsela e
e ntseng jang go bolelela ba bangwe
Participant: Gone gongwe counseling e ka thusa jaaka ke go raya ke re ken

e ke rejectilwe hela ke re ke bolelela motho, a ba a nkgaphela
kgakala. A re e seng nna, nna mma ke siame. Jaanong o sala o
na le di question mark tsa gore ka nte motho yo ke eng a riana.
Gongwe go sidila maikutlo go ka thusa.
Interviewer: A mme gone ha motho a ya go testa jaaka wean o new a

tsamaya hela o sa lwale, go na le couselling e e buang ka go
thusa batho gone go disclosa?
Participant: Nnya e ne e seo, more so ngaka ya me ene e re ga go

thokahale gore o ka bolelela your partner. E ta re wean o le
ready, o ta mmolelela ka nako e wean o leng ready ka yone. Go
raya gore re ne re sa hiwa counseling e e tseneletseng.
Interviewer: nnya mm eke lebogile. Any other last comments
Participant: Hey, (laughs nervously) go raya gore jaaka di counseling di

tsweletse go nne go tsenngwa mo teng. wa mo teng, gore in
case you are positive, o di re se le se le se gore o kgone go
bolelela your partner. Ka na ha e le gore go a kgonahala re
tsamae rothe re ye go itesta rothe nako e le nngwehela , gore le
ene a iponele ka nako yone eo ha maduo a tswa.
Interviewer: Go na le ba bareng ba ka bitsa mpngwe gore ke ene a te go
bolelela yo mongwe.gore gongwe wean ha o itse o ka bitsa
mongwe yo o mo tshepahng gongwe counselor, wean o e bona
jang?
Participant: Ee, (shaking head) A a ke fila gore go botoka le tsamaya lothe

ka nako e one, gore maduo a tswe ka nako e le one, le iponele
lothe, ka gore yole ha a direla kwa yole le ene a direla kwa go
nna di ngalo go bolela yo mongwe ha go sa nna sente
Interviewer: Nnya mm eke lebogile thata. Le ka moso
Participant: ee mma. (she laughs with relief)
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Interview no 1E
Interviewer: As I have indicated, I am doing a research on this issue of

disclosure to partners. So if you could just start by telling me
what happened and how you came to tell your partner about
your status.
Participant: Ok, I went for my test in 2003 and it came back positive
Interviewer: mm
Participant: after I found out that I was positive, I went to tell my partner. He
was the father of my child. When I told him…as you know what
men are like, he became very difficult. He told me that he could
not be positive too and he was well
Interviewer: really
Participant: he insisted that he could not be positive and refused to go for his
test. I went to see the doctor and told him what happened and
that my partner refused to test. The doctor told me that there
was really nothing I could do if he refused to test.
Interviewer: hm
Participant: he advised that I keep encouraging my partner to do the test.

The doctor then advised me to check my CD4 count, which I did.
It was at 200 so he advised that I started medication so that it
doesn’t drop below 200. So I started medication that same year
in 2003. In the mean time, my partner not only refused to do the
test but also refused to use condoms. It became such an
abusive relationship. He found fault with anything I said or
suggested.
Interviewer: hm
Participant: in the end we couldn’t live together so we ended the

relationship. We then lived separately
Interviewer: so the relationship ended because of the issue of condoms?
Participant: that was the main issue. He didn’t want to use condoms at all. In
2004 he became ill with boils. He continued to have minor
illnesses but refused to do the test. His condition deteriorated in
2005. He developed breathing problems…….(long pause) he
ended up dying. He died
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Interviewer: even then he still refused to go for the test
Participant: he refused the test. He died before he did the test. So I was
single for a while after he died. 2006….(long pause) I started a
new relationship. In this new relationship I was afraid to tell my
new partner about my status and the fact that I was on
medication.
Interviewer: mhm
Participant: I used to take my medication in secrecy. I would wait until I was

alone before I took them. At times I would take them later than I
should because of the secrecy (coughs)
Interviewer: what were you really afraid of?
Participant: I didn’t know whether he would accept my situation or whether

he would say I will pass the virus to him.
Interviewer: ok
Participant: I was living in Orapa in 2006. Then I moved to Gaborone in

2006, December
Interviewer: was he also in Orapa?
Participant: He remained in Orapa. Because of long distance we didn’t see

each other much. He also…I don’t know if its bad luck, he also
died in 2008. He had a car accident
Interviewer: Mh so he never got to know
Participant: he never knew that I was on treatment. I continued to take them

in secrecy, afraid to tell him. Early in 2008 I found another
partner. Fortunately this person was also on medication. He was
upfront with me he just said “I am positive and on medication”
that’s when I was able to tell him that we were singing the same
song as I was also on medication. We lived together without any
problems.
Interviewer: so life continued
Participant: Yes, my life is so much better now
Interviewer: ok… let’s go back to year 2006 when you were with the father of
your child
Participant: He was my first love from high school
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Interviewer: Ok, the one you met in 2003?
Participant: we met in the 90’s our child was born in 1992
Interviewer: ok
Participant: we finished our high school together. He then lived in Serowe

while I lived in Orapa which put some distance between us. We
continued to meet from time to time. In 2003 I decided to go for
the test. I wasn’t ill or anything I just wanted to know my status
Interviewer: Ok
Participant: yes
Interviewer: was it because of the public health campaign messages from

Tebelopele?
Participant: yes they kept telling us about this illness and suggesting people
should know their status. I went for my test as result.
Participant: so when I took my test, that’s when I found out that I was
positive
Interviewer: hm
Participant:: yes
Interviewer: so how did you react to the news? How did you feel?
Participant: ah after the doctor told me, I just accepted my situation. I then
told my cousin because we were close. She said it was not the
end of the world and told me to take the medication and I will be
fine
Interviewer: so how long did it take you to tell your partner?
Participant: immediately after I came back from Tebelopele, I called him

and asked him to go to the hospital for his test because I had
done mine and I was positive. Still on the phone, he went mad!
Interviewer: what did he say?
Participant: “I can’t be positive. I am not ill”
Interviewer: so did he have any ideas as to where you could have got the
virus from?
Participant: I think he thought that I got it where I was in Serowe when he
was in Orapa. So he just said no I am not ill, you must be the
one bringing the virus into the relationship.
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Interviewer: what were the other reasons for you not telling him? Oh but then
you told him over the phone as you said. Did you find out where
he was first before you told him, just in case he fainted or…
Participant: yes, I called his work land line to make sure he was in the office.
He didn’t share his office. So I went ahead and told him
Interviewer: did he offer to call you back afterwards or what exactly

happened?
Participant: no he just told me he was fine and didn’t say much for a few
days. He then asked me again after a few days whether I said I
was positive. I told him yes, the test says I am positive. He just
said he could not be affected
Interviewer: if we now go to 2008, as I recall, you started a new relationship

in 2006?
Participant: yes a new relationship
Interviewer: is that the one where you were afraid to disclose your status?
Participant: yes, because in the first relationship, my partner dismissed me

when I told him my status. With the second one, I didn’t really
know where to begin. I was not sure if he would accept what I
said or whether he would think I would pass the illness to him. I
even thought that he would end the relationship.
Participant: I didn’t tell him at all
Interviewer; so how did you get on with the current one?
Participant: my current partner simply approached me and we agreed to

have a relationship. He initiated the disclosure by telling me his
status. Then I said to him I was also like him. This means if he
had not told me first, I was going to keep it quiet (eyes wide
open) I was going to wait and see what type of person he was
and whether he was likely to accept my status or whether he
would reject me.
Interviewer: Fortunately it worked out fine
Participant: he didn’t reject me.
4
Interviewer: so when you compare how your life was when you lived with the
secret when you were with your second partner and your life
now with the current partner who knows your status, what’s the
difference?
Participant: Hey (big smile) then my life was difficult. It was tough. I felt like a
murderer. I was scared all the time not knowing what he would
do if he found out. I didn’t know what sort of person he was
going to think I was if he found out. But right now, my life is
much better. He even reminds me to take the medication if I am
late for my dose. When it is time for check up he also reminds
me. Life is free now.
Interviewer: it is no longer difficult.
Participant: not at all. Life used to be very tough. When I had to take my
medication, I was afraid in case he asked me what it was
Interviewer: that means you must have taken them later than the allocated
times
Participant: Yes, at times I even missed doses
Interviewer: Days?
Participant: no I would miss doses by a few hours.
Interviewer: hey this is now a better situation for you
Participant: a lot
Interviewer: now when you look back and remember the thoughts you had
which prevented you from telling your partner, were they valid?
Participant: yes, they were valid because the reason why you fear to tell a
person is because of the way they talk about the issue. You
work out his feelings and decide whether he is the type who will
accept you or not. You listen to him when you have general
conversation about the public health messages about the
disease. You also work out what their views are on testing for
the disease.
Interviewer: So with your other partner his views were…
Participant: yes, that one had negative views including the fact that
someone would have put a curse on him or that he would never
have it or that I am the one who brought the disease into the
home
5
Interviewer: Ok. So in summary, bearing in mind your time constraints, what
was your positive and negative experiences following disclosure
to your partners?
Participant: I believe that we need to disclose to our partners because when

you have disclosed you feel…..you feel free. You feel free
because your partner will now understand your situation. Life is
not as difficult as when you kept your status a secret.
Interviewer: life becomes easier
Participant: it becomes much easier!
Interviewer: what makes it feel easier?
Participant: you begin to understand how the other person lives, what the
two of you need to do to protect yourselves, what foods to eat to
stay healthy etc. when you tell them not to drink alcohol they
understand why you say that whereas someone who doesn’t
know these things may not be so understanding
Interviewer: so what advice can you give those who are afraid to disclose
their status to their partners?
Participant: I would advise them to keep trying, find best ways to approach
the issue because you are better off telling them than not telling
them.
Interviewer: is there any kind of support that they can be given to assist them
with disclosure?
Participant: may be counselling may help because I was rejected by my

partner when I told him. He kept saying “not me, I am not ill” and
he didn’t want anything to do with me after that. That leaves you
with a question mark about why he reacted that way so
counselling may help hurt feelings.
Interviewer: is there a counselling facility to help those like you to disclose,

given you went for the test not because you were ill but just to
know your status?
Participant: no there was no provision like that., more so my doctor told me

that I didn’t need to tell my partner until I was ready. I don’t think
I was given adequate counselling
Interviewer: you have been very helpful, thank you so much. Do you have
any last comments?
Participant: Hey, (laughs nervously) I think they should include it as part of

ongoing counselling. People should be advised on what to do in
6
case they are positive and how to approach the issue of
disclosing to partners. Or better still advice partners to go for
their test together if possible, so both can get their results at the
same time.
Interviewer: what do you think of the suggestion that perhaps people can
involve a third party such as a trusted friend or a counselor to do
the disclosure on their behalf?
Participant: No (shaking head) I feel that it is best if partners go together at

the same time so they get the results and see the results
together there and then. This is because if people go for testing
at different times, it creates problems when the results are not
expected ones.
Interviewer: I am really thankful to you for this interview.
Participant: Yes madam, (laughs with relief)
7
Interview no 1E-ANALYSIS
Interviewer: As I have indicated, I am doing a research on this issue of

disclosure to partners. So if you could just start by telling me
what happened and how you came to tell your partner about
your status.
Participant: Ok, I went for my test in 2003 and it came back positive
Interviewer: mm
Participant: after I found out that I was positive, I went to tell my partner. He
was the father of my child. When I told him…as you know what
men are like, he became very difficult. He told me that he could
not be positive too and he was well
Interviewer: really
Participant: he insisted that he could not be positive and refused to go for his
test. I went to see the doctor and told him what happened and
that my partner refused to test. The doctor told me that there
was really nothing I could do if he refused to test.
Interviewer: hm
Participant: he advised that I keep encouraging my partner to do the test.

The doctor then advised me to check my CD4 count, which I did.
It was at 200 so he advised that I started medication so that it
doesn’t drop below 200. So I started medication that same year
in 2003. In the mean time, my partner not only refused to do the
test but also refused to use condoms. It became such an
abusive relationship. He found fault with anything I said or
suggested.
Interviewer: hm
Participant: in the end we couldn’t live together so we ended the

relationship. We then lived separately
Interviewer: so the relationship ended because of the issue of condoms?
Participant: that was the main issue. He didn’t want to use condoms at all. In
2004 he became ill with boils. He continued to have minor
illnesses but refused to do the test. His condition deteriorated in
2005. He developed breathing problems…….(long pause) he
ended up dying. He died
1
Interviewer: even then he still refused to go for the test
Participant: he refused the test. He died before he did the test. So I was
single for a while after he died. 2006….(long pause) I started a
new relationship. In this new relationship I was afraid to tell my
new partner about my status and the fact that I was on
medication.
Interviewer: mhm
Participant: I used to take my medication in secrecy. I would wait until I was

alone before I took them. At times I would take them later than I
should because of the secrecy (coughs)
Interviewer: what were you really afraid of?
Participant: I didn’t know whether he would accept my situation or whether

he would say I will pass the virus to him.
Interviewer: ok
Participant: I was living in Orapa in 2006. Then I moved to Gaborone in

2006, December
Interviewer: was he also in Orapa?
Participant: He remained in Orapa. Because of long distance we didn’t see

each other much. He also…I don’t know if its bad luck, he also
died in 2008. He had a car accident
Interviewer: Mh so he never got to know
Participant: he never knew that I was on treatment. I continued to take them

in secrecy, afraid to tell him. Early in 2008 I found another
partner. Fortunately this person was also on medication. He was
upfront with me he just said “I am positive and on medication”
that’s when I was able to tell him that we were singing the same
song as I was also on medication. We lived together without any
problems.
Interviewer: so life continued
Participant: Yes, my life is so much better now
Interviewer: ok… let’s go back to year 2006 when you were with the father of
your child
Participant: He was my first love from high school
2
Interviewer: Ok, the one you met in 2003?
Participant: we met in the 90’s our child was born in 1992

Interviewer: ok
Participant: we finished our high school together. He then lived in Serowe

while I lived in Orapa which put some distance between us. We
continued to meet from time to time. In 2003 I decided to go for
the test. I wasn’t ill or anything I just wanted to know my status
Interviewer: Ok
Participant: yes
Interviewer: was it because of the public health campaign messages from

Tebelopele?
Participant: yes they kept telling us about this illness and suggesting people
should know their status. I went for my test as result.
Participant: so when I took my test, that’s when I found out that I was
positive
Interviewer: hm
Participant:: yes
Interviewer: so how did you react to the news? How did you feel?
Participant: ah after the doctor told me, I just accepted my situation. I then
told my cousin because we were close. She said it was not the
end of the world and told me to take the medication and I will be
fine
Interviewer: so how long did it take you to tell your partner?
Participant: immediately after I came back from Tebelopele, I called him

and asked him to go to the hospital for his test because I had
done mine and I was positive. Still on the phone, he went mad!
Interviewer: what did he say?
Participant: “I can’t be positive. I am not ill”
Interviewer: so did he have any ideas as to where you could have got the
virus from?
Participant: I think he thought that I got it where I was in Serowe when he
was in Orapa. So he just said no I am not ill, you must be the
one bringing the virus into the relationship.
3
Interviewer: what were the other reasons for you not telling him? Oh but then
you told him over the phone as you said. Did you find out where
he was first before you told him, just in case he fainted or…
Participant: yes, I called his work land line to make sure he was in the office.
He didn’t share his office. So I went ahead and told him
Interviewer: did he offer to call you back afterwards or what exactly

happened?
Participant: no he just told me he was fine and didn’t say much for a few
days. He then asked me again after a few days whether I said I
was positive. I told him yes, the test says I am positive. He just
said he could not be affected
Interviewer: if we now go to 2008, as I recall, you started a new relationship

in 2006?
Participant: yes a new relationship
Interviewer: is that the one where you were afraid to disclose your status?
Participant: yes, because in the first relationship, my partner dismissed me

when I told him my status. With the second one, I didn’t really
know where to begin. I was not sure if he would accept what I
said or whether he would think I would pass the illness to him. I
even thought that he would end the relationship.
Participant: I didn’t tell him at all
Interviewer; so how did you get on with the current one?
Participant: my current partner simply approached me and we agreed to

have a relationship. He initiated the disclosure by telling me his
status. Then I said to him I was also like him. This means if he
had not told me first, I was going to keep it quiet (eyes wide
open) I was going to wait and see what type of person he was
and whether he was likely to accept my status or whether he
would reject me.
Interviewer: Fortunately it worked out fine
Participant: he didn’t reject me.
4
Interviewer: so when you compare how your life was when you lived with the
secret when you were with your second partner and your life
now with the current partner who knows your status, what’s the
difference?
Participant: Hey (big smile) then my life was difficult. It was tough. I felt like a
murderer. I was scared all the time not knowing what he would
do if he found out. I didn’t know what sort of person he was
going to think I was if he found out. But right now, my life is
much better. He even reminds me to take the medication if I am
late for my dose. When it is time for check up he also reminds
me. Life is free now.
Interviewer: it is no longer difficult.
Participant: not at all. Life used t be very tough. When I had to take my
medication, I was afraid in case he asked me what it was
Interviewer: that means you must have taken them later than the allocated
times
Participant: Yes, at times I even missed doses
Interviewer: Days?
Participant: no I would miss doses by a few hours.
Interviewer: hey this is now a better situation for you
Participant: a lot
Interviewer: now when you look back and remember the thoughts you had
which prevented you from telling your partner, were they valid?
Participant: yes, they were valid because the reason why you fear to tell a
person is because of the way they talk about the issue. You
work out his feelings and decide whether he is the type who will
accept you or not. You listen to him when you have general
conversation about the public health messages about the
disease. You also work out what their views are on testing for
the disease.
Interviewer: So with your other partner his views were…
Participant: yes, that one had negative views including the fact that
someone would have put a curse on him or that he would never
have it or that I am the one who brought the disease into the
home
5
Interviewer: Ok. So in summary, bearing in mind your time constraints, what
was your positive and negative experiences following disclosure
to your partners?
Participant: I believe that we need to disclose to our partners because when

you have disclosed you feel…..you feel free. You feel free
because your partner will now understand your situation. Life is
not as difficult as when you kept your status a secret.
Interviewer: life becomes easier
Participant: it becomes much easier!
Interviewer: what makes it feel easier?
Participant: you begin to understand how the other person lives, what the
two of you need to do to protect yourselves, what foods to eat to
stay healthy etc. when you tell them not to drink alcohol they
understand why you say that whereas someone who doesn’t
know these things may not be so understanding
Interviewer: so what advice can you give those who are afraid to disclose
their status to their partners?
Participant: I would advise them to keep trying, find best ways to approach
the issue because you are better off telling them than not telling
them.
Interviewer: is there any kind of support that they can be given to assist them
with disclosure?
Participant: maybe counselling may help because I was rejected by my

partner when I told him. He kept saying “not me, I am not ill” and
he didn’t want anything to do with me after that. That leaves you
with a question mark about why he reacted that way so
counselling may help hurt feelings.
Interviewer: is there a counselling facility to help those like you to disclose,

given you went for the test not because you were ill but just to
know your status?
Participant: no there was no provision like that., more so my doctor told me

that I didn’t need to tell my partner until I was ready. I don’t think
I was given adequate counselling
Interviewer: you have been very helpful, thank you so much. Do you have
any last comments?
Participant: Hey, (laughs nervously) I think they should include it as part of

ongoing counselling. People should be advised on what to do in
6
case they are positive and how to approach the issue of
disclosing to partners. Or better still advice partners to go for
their test together if possible, so both can get their results at the
same time.
Interviewer: what do you think of the suggestion that perhaps people can
involve a third party such as a trusted friend or a counsellor to
do the disclosure on their behalf?
Participant: No (shaking head) I feel that it is best if partners go together at

the same time so they get the results and see the results
together there and then. This is because if people go for testing
at different times, it creates problems when the results are not
expected ones.
Interviewer: I am really thankful to you for this interview.
Participant: Yes madam, (laughs with relief)
7
PROCESS OF ANALYSIS
Words expressing similar meanings were colour coded. For example, words
describing how the participant and her partner reacted to the disclosure were
highlighted as red. A concept of” reaction” was identified. More meaning
words describing “reaction” were identified and highlighted throughout the
interview transcript. The words were then grouped together as meaning units.
Further analysis of the meaning units lead to identification of categories of
partner reaction (PR) and her reaction (HR). Words describing each category
were grouped together under PR or HR. These were then further analysed to
look for new meanings within each category. These actions lead to
emergence of subcategories. The categories and subcategories were re-
analysed and combined together to develop a theme.
The process is illustrated below
Concept: reaction
Words describing reaction:

• He became very difficult. (PR)
• He told me that he could not be positive too and he was well (PR)
• I went to see the doctor and told him what happened and that my partner
refused to test. (HR)
• He refused to use condoms. (PR)
• He found fault with anything I said or suggested (PR)
• accept my situation (HR)
• say I will pass the virus to him (PR)
• Still on the phone, he went mad! (PR)
• No he just told me he was fine and didn’t say much for a few days. He
then asked me
• again after a few days whether I said I was positive (PR)
8
• You feel free. You feel free because your partner will now understand your
situation. (PR)
• Life is not as difficult as when you kept your status a secret. (HR)
• you begin to understand how the other person lives, what the two of you
need to do to protect yourselves, what foods to eat to stay healthy etc.
when you tell them not to drink alcohol they understand why you say that
whereas someone who doesn’t know these things may not be so
understanding (HR)
• He kept saying “not me, I am not ill” and he didn’t want anything to do with
me after That (PR)
CATEGORIES
Partner reaction (PR)

Positive
• No he just told me he was fine and didn’t say much for a few
days. (initial acceptance)
Negative
• He became very difficult. (rejection)
• He told me that he could not be positive too and he was well (denial)
• He refused to use condoms. (unsafe sex)
• He found fault with anything I said or suggested (PR) say I will pass the
virus to him (blame)
• Still on the phone, he went mad! (anger)
Her reaction (HR)
Positive reaction (HPR)
• I went to see the doctor and told him what happened and that my partner
refused to test. (seeks advice)
• You feel free. You feel free because your partner will now understand your
situation.
• accept my situation (self acceptance)
9
• Life is not as difficult as when you kept your status a secret. You begin to
understand how the other person lives, what the two of you need to do to
protect yourselves, what foods to eat to stay healthy etc. when you tell
them not to drink alcohol they understand why you say that whereas
someone who doesn’t know these things may not be so understanding
(unburdening, supportive)
Negative reaction (HNR)
• I even thought that he would end the relationship. (rejection)
• I didn’t tell him at all (non disclosure)
• Life used t be very tough. When I had to take my medication, I was

afraid (fear)
Subcategories
Unburdening
Advice
Anger
Blame
Unsafe sex
Acceptance
Support
Rejection
Fear
Non-disclosure
The above describes an overall reaction to the news of partner sero-positivity
Theme: initial reactions to disclosure
A similar analysis was undertaken for other concepts identified throughout this
interview to arrive at other themes. The process was repeated for the other
interview scripts
10

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FACTORS INFLUENCING DISCLOSURE OF HIV

STATUS TO SEXUAL PARTNERS IN BOTSWANA

TINY KELEBOGILE MASUPE

Submitted in accordance with the requirements

for the degree of

MASTER OF PUBLIC HEALTH

UNIVERSITY OF SOUTH AFRICA

SUPERVISOR: PROF GH VAN RENSBURG

JOINT SUPERVISOR: PROF SP HUMAN

I declare that FACTORS INFLUENCING DISCLOSURE OF HIV STATUS TO SEXUAL

STUDENT NUMBER: 34887393

Communication; disclosure; HIV status; HIV testing; communication privacy

• GMT Surgery, for allowing me to do the research at the clinic

• Dr Tsie of GMT Surgery, for facilitating access to the research population

• Edwin Nzimande, for co-coding my work

• Gape Motswaledi, for helping and checking that my translations of interviews

• Marion Marchand, for editing the dissertation

ORIENTATION TO THE STUDY

1.1 INTRODUCTION .......................................................................................................................................... 1

1.2 BACKGROUND INFORMATION ABOUT THE RESEARCH PROBLEM ..................................................... 2

1.2.1 The source of the research problem ............................................................................................................. 2

1.3 STATEMENT OF THE RESEARCH PROBLEM .......................................................................................... 4

1.4 PURPOSE AND OBJECTIVES OF THE STUDY ......................................................................................... 5

1.4.1 Purpose of the study..................................................................................................................................... 5

1.5 SIGNIFICANCE OF STUDY ......................................................................................................................... 6

1.6 DEFINITIONS OF KEY CONCEPTS ............................................................................................................ 6

1.6.1 Disclosure: Theoretical definition ................................................................................................................. 6

1.7 FOUNDATIONS OF THE STUDY ................................................................................................................ 7

1.7.1 Theoretical framework .................................................................................................................................. 7

1.7.1.1 Theory of disease progression ..................................................................................................................... 7

1.8 THE RESEARCH METHODOLOGY ............................................................................................................ 8

1.8.1 Research design........................................................................................................................................... 8

1.8.4.1 The interview schedule ................................................................................................................................. 9

1.8.5 Method of data analysis ................................................................................................................................ 9

1.9 STRUCTURE OF THE DISSERTATION .................................................................................................... 10

2.1 INTRODUCTION ........................................................................................................................................ 12

2.2 PURPOSE AND OBJECTIVES OF THE STUDY ....................................................................................... 12

2.3 RESEARCH CONTEXT ............................................................................................................................. 12

2.3.1 The context ................................................................................................................................................. 13

2.4 RESEARCH DESIGN ................................................................................................................................. 14

2.4.1 Qualitative approach................................................................................................................................... 14

2.5 POPULATION ............................................................................................................................................ 15

2.6 SAMPLE AND SAMPLING ......................................................................................................................... 16

2.6.1 Sample size ................................................................................................................................................ 16

2.6.2.1 Purposeful sampling technique................................................................................................................... 17

2.7 DATA COLLECTION .................................................................................................................................. 18

2.7.1 Data collection approach ............................................................................................................................ 18

2.7.1.1 Unstructured in-depth interview .................................................................................................................. 18

2.7.2 Data collection process .............................................................................................................................. 20

2.8 DATA ANALYSIS ....................................................................................................................................... 21

2.8.1 Familiarisation with the data ....................................................................................................................... 22

2.8.4.1 Open coding and delineation of emergent concepts .................................................................................. 25

2.9 TRUSTWORTHINESS OF THE STUDY .................................................................................................... 27

2.9.1 Credibility .................................................................................................................................................... 27

2.10 ETHICAL CONSIDERATIONS ................................................................................................................... 30

2.10.1 Voluntary participation ................................................................................................................................ 30

2.10.6.1 Autonomy ................................................................................................................................................... 33

DATA ANALYSIS AND PRESENTATION OF RESULTS

3.2 DATA ANALYSIS PROCESS ..................................................................................................................... 35