Perspectives of PLHIV
on HIV Prevention:
Opportunities and Challenges for
Strengthening the Response in Uganda
October 2012
Perspectives of PLHIV on HIV Prevention:
Opportunities and Challenges for Strengthening the
Response in Uganda
October 2012
By E. -Walakira, D. Kaawa-Mafigiri, J. B\amugisha, W. Parker, and S. Rogers
This report was made possible by the generous support of the American people through the United States
Agency for International Development (USAID) and the President’s Emergency Plan for AIDS Relief (PEPFAR)
through USAID under the terms of Agreement No. GPO-A-00-07-00004-00. The contents are the responsibility
of the C-Change project, managed by FHI 360, and do not necessarily reflect the views of USAID or the
United States Government.
Recommended Citation:
Walakira E.J., Kaawa-Mafigiri D., Byamugisha J., Parker W., and Rogers S. 2012.
HIV Perspectives of PLHIV on HIV Prevention: Opportunities and Challenges for Strengthening
the Response in Uganda. Washington DC: C-Change/FHI 360.
C-Change is a USAID-funded project implemented by FHI 360 and its
partners: CARE; Internews; Ohio University; IDEO; Center for Media
Studies, India; New Concept, India; Soul City, South Africa; Social
Surveys, South Africa; and Straight Talk, Uganda.
Contact Information:
C-Change
FHI 360
1825 Connecticut Avenue NW
Washington DC 20009
Phone: (202) 884-8000
Fax: (202) 464-3799
www.c-changeproject.org
Acknowledgments
Support and guidance for this study were provided by Shanti R. Conly, Team Leader, HIV Prevention,
USAID Office of HIV/AIDS; and Ugochukwu Amanyeiwe, Senior Technical Advisor, Community Care and
Prevention with PLHIV, USAID Office of HIV/AIDS. The study also benefited from the support of Uganda’s
Ministry of Health and the work of colleagues at Makerere University, notably Charles Bwana and David
Kyaddondo.
The report was prepared by Eddy Walakira, David Kaawa-Mafigiri, Jimrex Byamugisha, Warren Parker, and
Susan Rogers. James Mugisha and Ismail Ddumba, who supervised data collection, contributed to the
draft, as did Florence Ayebare, Lillian Mworeko Kyomuhangi, and Robert Mwesigwa. C-Change staff Reena
Borwankar assisted study design and implementation; Jane Alaii offered expert field observation; Yudaya
Mawanda supported the coordination of activities, and Hilary Russell provided final editing.
Field work would not have succeeded without the cooperation and information of key informants in study
sites and the authorization and assistance of The AIDS Support Organization (TASO) and the International
Community of Women Living with HIV and AIDS in East Africa (ICWEA).
Data collection also depended on the hard work and commitment of numerous research assistants:
Peninah Kansiime, Diana Nabbumba, Rose Nafuna Khatsa, Angela Brenda, Olivia Namaloba, Ronald Odida,
Rongald Luwangula, Fred Masakala, Rebecca Nabuchu, Mike Mbazira, Magezi Golden Bitwire, Charles
Nahamya Kafureeka, Rogers Niwamanya, Loy Nankwasa, Jovawin Byawaka, Majuga Jaffer, Sarah Angom,
Hilda Ongora, Jackline Mbabazi, Martin Kisoboli, Medard Turyamuleba, Patrick Ongora, Jimmy Ssali,
Samuel Odur, Kate Kamya, Caroline Mutenyo, Mustapha Mubiru, Jane Bhangyi, and Aol Monica
Aporomon.
Acronyms and Abbreviations
ART
CBO
eMTCT
FBO
FGD
HCT
HIV
IDI
Kas
Kit
Mb
MSM
NGO
OI
PEPFAR
PHDP
PLHIV
PMTCT
PwP
Rak
SBCC
STI
VCT
UNCST
Antiretroviral treatment
Community-based organization
Elimination of mother-to-child transmission
Faith-based organization
Focus group discussion
HIV counseling and testing
Human immunodeficiency virus
In-depth interview
Kasese
Kitgum
Mbale
Men who have sex with men
Nongovernmental organization
Opportunistic infection
US President’s Emergency Plan for AIDS Relief
Positive Health, Dignity, and Prevention
People living with HIV
Prevention of mother-to-child transmission
Prevention with positives
Rakai
Social and behavior change communication
Sexually transmitted infection
Voluntary counseling and testing
Uganda National Council for Science and Technology
Contents
Executive Summary ................................................................................................................. 1
1. Background.......................................................................................................................... 5
1.1
1.2
Positive Health, Dignity and Prevention (PHDP) ............................................................................. 5
HIV in Uganda .................................................................................................................................. 7
2. Study Rationale and Objectives ............................................................................................ 8
3. Methods .............................................................................................................................. 9
3.1
3.2
3.3
3.4
3.5
3.6
Study Design .................................................................................................................................... 9
Study Locations ............................................................................................................................... 9
Study Population, Recruitment, and Data Collection...................................................................... 9
Study Instruments, Data Management, and Analysis ................................................................... 13
Ethical Considerations ................................................................................................................... 13
Strengths and Limitations of the Study ......................................................................................... 13
4. Findings ..............................................................................................................................14
4.1
4.2
4.3
4.4
4.5
4.6
4.7
4.8
4.9
4.10
4.11
Perceptions about the Situation of PLHIV ..................................................................................... 14
Access to Information About HIV and AIDS and Perceived Knowledge Levels ............................. 15
Understanding of PHDP ................................................................................................................. 18
Length of Time Living with HIV and Health Status ........................................................................ 22
Experiences with Disclosure, HIV Stigma, and Discrimination ...................................................... 23
Treatment for HIV and TB ............................................................................................................. 29
Living with HIV and Sexual Relationships ...................................................................................... 32
Fertility Desires and Experience of PMTCT Services ..................................................................... 37
Alcohol and Substance Abuse ....................................................................................................... 38
Community and Organizational Responses to Addressing PHDP.................................................. 38
PHDP Service Provision.................................................................................................................. 45
5. Discussion ...........................................................................................................................49
5.1
Understanding Perceptions of the Concept of PHDP among PLHIV, Service Providers, and
Stakeholders .............................................................................................................................................. 49
5.2
Understanding PLHIV Experiences Relevant to PHDP, Including Sexual Behaviors ...................... 50
5.3
Range of Resources, Activities, and Services Available to Support PHDP ..................................... 52
6. Conclusions and Implications for Policy and Programs .........................................................54
6.1
6.2
6.3
6.4.
6.5.
6.6.
Social and Behavior Change Communication for PHDP ................................................................ 54
Support for Disclosure of HIV Status and Promotion of PLHIV Rights .......................................... 54
Sexuality and Relationships of PLHIV ............................................................................................ 55
Economic Support Alongside ART Programs ................................................................................. 56
Support Groups and Associations ................................................................................................. 56
Voluntarism ................................................................................................................................... 56
6.7
Monitoring and Evaluation of PHDP.............................................................................................. 57
7. References ..........................................................................................................................58
Tables
Table 1. Focus Group Discussions, by Participant Category and District ...................................................... 10
Table 2. In-Depth Interviews, by Participant Category and District .............................................................. 10
Table 3. Demographic Factors Relating to Survey Respondents, by Gender ................................................ 11
Table 4. Service-Provider Interviews, by Type of Entity and District ............................................................ 12
Table 5. Media and Cell Phone Use, by Gender, District, and Age................................................................ 16
Table 6. Attendance at Workshops and Community-Level Activities, by Gender, District, and Age ............ 17
Table 7. Knowledge about HIV and AIDS and Information-Seeking, by Gender and Age ............................. 17
Table 8. Sources of Information about PHDP-Related Topics ....................................................................... 20
Table 9. Whether PHDP Topics Discussed and With Whom ......................................................................... 21
Table 10. Number of Years Living with HIV, by Gender and Age .................................................................. 22
Table 11. Perceived Physical Health of Survey Participants, by Age and ART Status.................................... 22
Table 12. Depression, Counseling, and the Role of Religion, by Gender and How Long Status Known ....... 23
Table 13. To Whom Disclosed and Negative Experiences, by Gender and How Long Status Known ........... 24
Table 14. Experience with CD4 Counts, ART, and Concerns, by Gender and Age......................................... 29
Table 15. Experience of TB and TB Treatment, by Gender and Age ............................................................. 30
Table 16. Recent Experience with Sexual Partnerships, by Gender and Age ................................................ 32
Table 17. HIV-Prevention Practices, by Gender and Age .............................................................................. 33
Table 18. Contraceptive Method Used, by Gender and Age ......................................................................... 35
Table 19. Any Children Died of AIDS and Desire for Children, by Gender and Age ...................................... 37
Table 20. Whether Gave Birth Since Knowing Status and Experience With PMTCT Services, by Age .......... 37
Table 21. Alcohol Use, by Gender and Age ................................................................................................... 38
Table 22. Membership in PLHIV Support Groups and Associations, by Gender and Age ............................. 39
Table 23. Benefits of Membership in PLHIV Support Groups and Associations ........................................... 40
Table 24. Engagement with Volunteerism and HIV-Related Social Activities, by Gender, District, and Age 42
Table 25. Involvement in Volunteer Work, by Gender and Age ................................................................... 43
Table 26. Percentage of Facilities and Organizations Providing PHDP-Related Services .............................. 45
Table 27. Percentage of Facilities and Organizations Providing Trainings in PHDP Topics ........................... 46
Table 28. Percentage of Facilities and Organizations with Materials on PHDP Topics ................................. 47
Table 29. PLHIV Involvement in Organizations Providing HIV and AIDS Services ......................................... 47
2
Executive Summary
Introduction
C-Change commissioned a multisite, multi-country study to build on existing understanding of HIV
prevention in relation to living with HIV and inform public health interventions, including those furthering
social and behavior change communication (SBCC). The study highlights perceptions about HIV prevention
in relation to living with HIV, as well as the availability of relevant activities and services at community
levels and the extent to which these meet the needs of people living with HIV (PLHIV) to prevent HIV
transmission, re-infection, or co-infection. A key focus of the study is understanding the perspectives of
PLHIV.
Positive Health, Dignity and Prevention (PHDP) has emerged as a concept to guide understanding of HIV
prevention in the context of living with HIV and AIDS. It offers a broad framework that engages with all
aspects of living with HIV that have a bearing on risk and vulnerability related to HIV transmission.
In Uganda, the study was conducted in four districts: Kitgum (Northern Region), Mbale (Eastern Region),
Rakai (Central Region), and Kasese (Western Region). The study employed a mixed-method approach, and
involved 216 individuals in focus group discussions (FGDs) and in-depth interviews (IDIs), 252 PLHIV in
quantitative survey, and a survey of 22 organizations that provide support and services for PLHIV including
health facilities and governmental services, nongovernmental, and faith- and community-based
organizations.
Key findings
Knowledge and awareness: Most participants in FGDs and IDIs had a good understanding of the key
elements of living with HIV in relation to HIV prevention, all of which broadly fall into the sphere of the
concept of positive living. The term PHDP was not widely known, but the issue of HIV prevention in
relation to living with HIV was linked to preventing transmission to partners and re-infection of other HIVpositive partners, reducing coital frequency, and avoiding multiple and concurrent partnerships.
Most PLHIV regarded their knowledge of HIV and AIDS as adequate to very good, though those ages 18–
29 were less likely to view their knowledge as sufficient. HIV and AIDS communication among PLHIV
occurred most often with health workers, while communication with sexual partners, family members,
friends, and other PLHIV occurred to a lesser extent. There was good communication of key concepts
within the framework of PHDP, predominantly via radio, as well as good exposure to community-level
activities—training, meetings, and events—although this was uneven between study sites.
Stigma, discrimination, and disclosure: The overall situation of PLHIV in Uganda has improved over the
past few years, with much of the transformative change underpinned by the rollout of antiretroviral
treatment (ART). Stigma and discrimination directed toward PLHIV have declined, although have not been
eradicated.
Participants reported that children of PLHIV and children living with HIV experience alienation, rejection,
and even school termination when their association with HIV becomes known. While PLHIV reported
caring, respectful, and non-judgmental treatment by healthcare providers, some reported receiving verbal
abuse and discriminatory treatment at health facilities.
1
Disclosure continues to be a difficult process for PLHIV. Relationship separation or divorce was a
consequence of disclosure for some, with women being more likely to experience relationship break-up
and/or violence following disclosure. Rejection by parents, eviction by landlords, and job loss were among
other negative outcomes.
Only around two-thirds of those surveyed had disclosed HIV status to their sexual partners, with women
less likely to have disclosed. Most PLHIV who had disclosed did so with family and peers, rather than in
work settings. Lack of openness and disclosure not only affected access to treatment, but also how and
whether PHLIV practiced HIV prevention.
Physical and mental health: Most PLHIV in the survey were generally in good health – most could perform
daily life activities and were rarely bedridden.
In general, ART programs appear to be working well in Uganda: most PLHIV had their CD4 counts checked
recently and eight out of ten of those on ART said they adhered to their prescriptions 100%. However,
adherence included important and pressing challenges for around a third of those surveyed, including
inadequate food for the drug regimen and difficulty accessing transport for drug re-supply. One in ten had
experienced drug stock-outs, and around half were worried about the sustainability of ART programs.
While some PLHIV had experienced depression, assistance and counseling had largely been provided.
Overall, alcohol consumption was low. Most PLHIV considered religion to be ‘very important’ to living with
HIV.
Sexuality and living with HIV: A fair proportion of PLHIV reported that they had not had sex in the past
year, including over a third of women and those in the age group 30-49. Main reasons for abstinence were
not having a partner, not being interested in sex, and their HIV-positive status.
Among those sexually active, around a quarter had two or more sexual partners in the past year, and one
in six had a concurrent partner in the past three months. While most used condoms to prevent HIV
transmission, around one in five said they had unprotected sex, whether or not their partners were HIV
positive.
HIV discordancy: Among negative consequences of HIV discordancy were relationship breakup, blaming of
the positive partner, and violence. Where partners elected to remain together, their relationships could
become ambiguous, with some seeking outside partners and others adopting abstinence or condom use
as HIV-prevention strategies, though admittedly difficult to sustain.
Support groups and associations: PLHIV support groups and associations provided a range of benefits to
PLHIV that were relevant to PHDP. These include increased knowledge; emotional support; assistance
with disclosure and discrimination; improved ART adherence; support and reinforcement of HIV
prevention; access and referrals to prevention, care, and treatment services; support for pooling of fiscal
resources and income-generation activities; and links to volunteer activities. Notwithstanding, only a third
of PLHIV surveyed were members of such support groups and associations. Challenges for support groups
included lack of access to funding and inadequate capacity in management and governance.
Voluntarism: Around a third of PLHIV surveyed were volunteers or members of support groups and/or
associations, providing a range of support for other PLHIV and promoting HIV awareness and prevention
to the general public. Being a volunteer improved their knowledge and enhanced self-esteem through
2
helping others. Most received no remuneration, and this lack of financial support reportedly constrained
volunteer programs.
Organizational support: Organizations working with and supporting PLHIV addressed a range of PHDP
themes, though gaps were noted. These included the range of information resources on some key areas,
including discordancy, relationship support, alcohol and drug abuse, mental health, and legal rights. There
were minimal materials related to sex work and none for men who have sex with men (MSM). Other
challenges for such organizations included sporadic funding; unequal distribution of services, especially in
remote areas; limited collaboration and coordination with other, similar organizations; lack of capacity
and human resources, and limited funding for evaluation.
PLHIV noted that they were not adequately drawn into the conceptualization, planning, and
implementation of activities for PLHIV and group activities by PLHIV were not adequately fostered by
formal health providers and by organizations.
Recommendations
Social and behavior change communication for PHDP: The acronym and concept of PHDP is not well
understood, but communicating HIV prevention in relation to living with HIV can usefully be addressed by
highlighting its components: ‘positive health,’ ‘dignity,’ and ‘prevention.’
Community and other leaders should be drawn into promoting and endorsing various PHDP themes, and
PLHIV should be drawn into leading and articulating PHDP among PLHIV and non-PLHIV alike. There is also
a need to strengthen communication to address young and marginalized PLHIV.
Support for disclosure of HIV status and promotion of PLHIV rights: While disclosure of HIV status
ultimately benefits PLHIV, the process needs to be supported holistically, taking into account potential
negative outcomes in relationship, family, community, work, and residential contexts. The rights of PLHIV
need to be promoted in cases of discrimination, and there should be active support to redressing rights
and legal violations, including children of PLHIV, who face discrimination whether or not they are HIV
positive.
Sexuality and relationships of PLHIV: Support is needed for PHLIV on issues of sexuality. The range of
experiences and adaptive processes reported in this study are worth highlighting for discussion among
PLHIV and policymakers alike. Particular attention should be given to discordant couples: particularly,
support for managing negative reactions to a positive partner and the potential for relationship break-up,
as well as for sustaining safer sexual practices. Fertility desires of PLHIV also require supportive processes,
along with parenting issues they face, such as disclosing to children their own or their parents’ HIVpositive status.
Economic support alongside ART programs: While ART programs have markedly transformed the health
and outlook of PLHIV, continuing economic challenges in relation to adherence were reported in this
study that potentially undermine these gains. There is thus a need to explore the potential of integrating
economic support alongside ART programs.
Support groups, associations and voluntarism: PLHIV capacity in relation to PHDP is being strengthened
in a range of important spheres by support groups, associations and by voluntarism. As such, support
groups and associations should be actively promoted and resourced, including by building their capacity in
3
management and governance. More funding is also needed to support PLHIV volunteers, who usefully
complement a range of support activities relevant for PHDP, among PLHIV and non-PLHIV alike.
Monitoring and evaluation of PHDP: While there is a wide-ranging general support that fosters PHDP,
PLHIV have not been adequately included in the response, and have only limited involvement in
conceptualizing and leading PHDP-related activities. They provided insights for this study into the broader
scope of PHDP, which should be reflected in expanded indicators and strengthened monitoring and
evaluation systems for PHDP.
4
1. Background
C-Change commissioned a multisite, multi-country study to build on existing understanding of HIV
prevention in relation to living with HIV and to inform public health interventions, including social and
behavior change communication (SBCC). The study highlights perceptions about HIV prevention in relation
to living with HIV, as well as the availability of relevant activities and services at community levels and the
extent to which these meet the needs of people living with HIV (PLHIV) to prevent HIV transmission, reinfection, or co-infection. A key focus of the study is understanding the perspectives of PLHIV.
1.1
Positive Health, Dignity and Prevention (PHDP)
PHDP has emerged as a concept over the past few years to guide understanding of HIV prevention in the
context of living with HIV and AIDS. Initial approaches to addressing HIV prevention among PLHIV were
viewed as being insufficiently inclusive—for example, by focusing only on sexual behavior or placing
responsibility of transmission prevention only on PLHIV, instead of focusing on both sexual partners.
An international technical consultation in 2009 with PLHIV networks, civil society organizations,
government agencies, donors, development agencies, and global bodies developed the concept of PHDP
as a broad framework to guide HIV prevention among PLHIV. PHDP replaced terms such as ‘positive
prevention’ and ‘prevention with positives.’ The concept includes a holistic approach, a human-rights
orientation, and these statements from PHLIV among its guiding principles (UNAIDS, 2011b):
ƒ
µWe are more than patients.’ This highlights PLHIV involvement in leading the response to HIV.
ƒ
‘We will not be treated as vectors of HIV transmission’ and ‘we are all responsible for HIV transmission.’
This highlights the rights of PLHIV and the responsibility of all people in HIV prevention, in a context of
varying vulnerability and risk.
ƒ
‘We have needs and desires to be fulfilled.’ This recognizes the sexual and reproductive health rights of
PLHIV, including the right to family life.
PHDP values include non-stigmatization, non-discrimination, community health and wellbeing, equitable
access to health services, economic wellbeing, social inclusion, and recognition of the needs of vulnerable
populations. PHDP is thus a broad concept that engages with all aspects of living with HIV, all of which
have a bearing on risk and vulnerability related to HIV transmission. Notably, the concept is far more
broad than the specifics of sexual transmission and narrow linkages with health services.
HIV infection involves the transmission of the virus from a person who is living with HIV to an uninfected
person. This includes sexual transmission of HIV as well as other forms of transmission, such as from
mother to child and contact with HIV-infected blood. While there have been well-focused emphases on
PLHIV in prevention of mother-to-child transmission (PMTCT) and transmission through blood donation,
there has been less emphasis on understanding the dimensions of sexual transmission of HIV among
people who know they are HIV positive. However, there is now increased interest in HIV prevention
involving a rising number of PLHIV who know their status and the rollout of HIV counseling and testing
(HCT) and antiretroviral therapy (ART).
5
Sexual interactions are bounded by power relations that determine when, where, and how sex occurs
(Kelly, Parker, and Lewis 2001). Such power is evident in cultural expectations related to gender, but is
also underpinned by economic factors (for example, the relation between sex and poverty) and social,
political, or legal marginalization (for example, in relation to stigma and discrimination or practices such as
sex work). Sexual relationships follow a range of formats, from informal and casual arrangements through
to relationships that are legally and culturally formalized. Patterns of cohabitation and marriage influence
vulnerability to HIV, and southern African countries with high HIV prevalence are characterized by
patterns of late marriage and high levels of multiple and concurrent partnerships (Halperin and Epstein
2007; Parker et al. 2007).
Over the past decade, biomedical approaches have reduced the risk of sexual transmission of HIV: ART
reduces viral load and consequent transmission risk, and male circumcision reduces transmission risk from
women to men (Attia et al. 2009). Early introduction of ART for sero-discordant couples has also been
promoted recently (Cohen et al. 2011).
Concerns raised that ART provision may be accompanied by behavioral disinhibition in relation to HIVprevention practices were not substantiated by a systematic review by Kennedy et al. (2007), though a
study in Kenya by Luchters et al. (2008) found unsafe sex practices in the previous 12-month period
among half of the study participants receiving ART.
Kalichman (2008) noted that non-adherence to treatment and sexual-risk behaviors among PLHIV do
occur: up to one-third of PLHIV contracted new sexually transmitted infections (STIs) post-diagnosis, and
drug-resistant mutations among PLHIV in U.S. cities provide evidence of non-adherence to ART. While
unprotected sex between PLHIV and HIV-positive partners does not result in new HIV infections, there are
health implications—notably recombinant viruses, drug-resistant viruses, and super-infection (Piantadosi
et al. 2007; Hirsch et al. 2008).
Food insecurity is associated with sexual risk, especially for women, as noted by a study in Uganda (Miller
et al. 2011). Another Ugandan study found, however, that food insecurity decreased among PLHIV on ART,
partly because their physical health had improved (Weiser et al. 2012). Psychosocial aspects of HIV
prevention among PLHIV have been highlighted by other studies. These indicate that stigma and
discrimination, limited rights-related legal provisions, gender-related discrimination and marginalization,
and food and water insecurity are interrelated with the capacity of PLHIV to adequately address the risks
of transmitting HIV to their sexual partners (UNAIDS 2009).
PLHIV are known to experience stigma and discrimination in all spheres of life, including in healthcare
settings, and they confront fear of contagion, negative and judgmental attitudes, marginalization, and
proscription (Feyissa et al. 2012; Pulerwitz et al. 2010). Experiences of stigma and discrimination are
included among wide-ranging negative psychosocial factors found to be more common among PLHIV than
in the general population, along with depression, anxiety, post-traumatic stress disorder, and lack of trust
in the healthcare system and government (Whetten et al. 2008). Some of these factors have also been
linked to poor adherence to ART and risky sexual behaviors.
Although PLHIV can practice safer sex without disclosing their HIV status to a sexual partner, disclosure is
beneficial for both partners and fosters a commitment to safer sex within the relationship. Processes of
HIV disclosure vary considerably. Disclosure to sexual partners is acknowledged to be a gradual process.
(Burton, Darbes, and Operario 2010).
6
A recent study in Uganda found that only half of the participants had disclosed their status to sexual
partners. Most participants were on ART, and fear of stigma was the main factor in non-disclosure (Osinde,
Kakaire, and Kaye 2012). Because disclosure is not without risk to PLHIV, it has been proposed that
individual counseling on the risks and benefits of disclosure should precede the process (Muula and
Mfutso-Bengo 2005). Disclosure has also be found to be more difficult for certain groups of PLHIV: those
who had not initiated ART; those who tested for HIV at antenatal clinics; and those who feared negative
outcomes (Kadowa and Nuwaha 2009).
Bishop and Foreit (2010) report that married or cohabiting sero-discordant couples are an important
source of new HIV infections in sub-Saharan Africa. A study in 2005 in Uganda found that discordancy was
not well understood by the couples or counselors who took part in interviews and focus group discussions
(Bunnel et al. 2005). Misconceptions included notions that HIV was not detectable in some people, beliefs
in immunity or in protection from God, and that HIV is prevented through ‘gentle sex.’ These factors
contributed to denial and potential infection risk. Prevention strategies included using condoms,
abstaining from sex, sleeping separately, seeking outside sexual partners, and ending the relationship.
Desire for children influences the practice of unprotected sex. A study of sero-discordant couples in
Uganda found that 59% of participants wanted to have children, irrespective of their HIV status. Fertility
desires were influenced by the belief that a partner wanted children, along with the child-bearing
expectations of relatives and knowledge about the effectiveness of ART (Beyeza-Kashesya et al. 2010).
Another Ugandan study of clients of The AIDS Support Organization (TASO) found that disclosure
improved care-seeking behaviors, reduced anxiety, increased sexual communication, and motivated
planning for the future (King et al. 2008). It has been acknowledged that ongoing support from HIVprevention services is needed to sustain safer sexual practices and engage PLHIV who practice unsafe sex
(Marks et al. 2005).
Support groups are acknowledged to contribute to improved lives for PLHIV by providing psychological
support and support for other needs (Visser et al. 2005). In Uganda, networks provide additional support
for members of PLHIV groups and improve the quality and reach of community-based HIV services
(Hodgson et al. 2012). In addition, another recent study found that involving PLHIV who lived openly in
the response to HIV in Uganda reduced stigma and increased referrals to health services (Kim et al. 2011).
1.2
HIV in Uganda
HIV and AIDS continue to pose a significant public health and development challenge in Uganda. The 2011
Uganda AIDS Indicator Survey estimated HIV prevalence at 7.3% among adults (ages 15–49) and 0.6%
among children under 5. HIV prevalence is higher among women than men: 8.3% vs 6.1%. It is higher
among women in urban areas than in rural areas—10.7% vs 7.7%—but the same—6.1%— for men in
urban and rural areas (Uganda Ministry of Health 2012).
The incidence of new infections is also high. In 2009 alone, the number of estimated new HIV infections in
the country was 124,000—20% in children and 55% in women— twice as many as the number of annual
AIDS deaths (64,000) and three times the net enrollment for ART in 2009 (Uganda Ministry of Health
2009; Uganda AIDS Commission 2011; Odiit, Kirungi, and Kisitu 2009; Government of Uganda 2010).
According to a 2009 HIV modes of transmission study, heterosexual transmission accounted for 75% of
7
new HIV infections in the country, while 18% to 20% were due to mother-to-child transmission (WabwireMangen et al. 2009).
The 2004–05 Uganda HIV/AIDS Sero-Behavioural Survey indicated that 57% of PLHIV had HIV-negative or
sero-discordant partners (Uganda Ministry of Health 2006). HIV negative partners are thus at extremely
high risk of HIV transmission. They may account for up to 50% of new HIV infections and represent a high
unmet need for HIV prevention (Hladik, Musinguzi, and Opio 2008).
The 2009 modes of transmission study noted above found that up to 43% of all new HIV infections in
adults ages 15–49 in Uganda occurred among people engaged in mutually monogamous, heterosexual
relationships (Wabwire-Mangen et al. 2009). Other recent studies in Uganda show that HIV-negative
individuals living in HIV-discordant relationships experience a 10% to 12% annual risk of HIV, compared to
those living in concordant HIV-negative relationships, and women are twice as likely to get infected as
men (Quinn et al. 2000; Wawer et al. 2009). Moreover, viral sequencing of HIV transmissions within HIVdiscordant couples suggests that up to 91% of newly infected individuals acquire HIV strains that are
analogous to those found in their HIV infected partners (Trask et al. 2002; Wawer et al. 2005). This
suggests a high level of intra-couple transmission within these relationships.
2. Study Rationale and Objectives
The concept of PHDP encompasses a wide range of elements related to living with HIV, all of which have a
bearing on HIV prevention. Although this relatively new concept was informed by the involvement of
PLHIV globally and its sub-components have been extensively explored in the literature, less is known
about how PLHIV in east and southern Africa understand PHDP-related concepts, what gaps exist, and
what opportunities there might be for strengthening HIV prevention.
The present study in Uganda forms part of a multi-country study to address understanding of PHDP in
eastern and southern Africa, with a view to informing regional strategies and policies and contributing to
global thinking on PHDP. Other study countries are Ethiopia and Mozambique. The primary source of
information is the lived experiences of PLHIV and their perspectives on PHDP at community levels.
Additional data is drawn from interviews with service providers and stakeholders.
The objectives of the study include:
understanding perceptions of the concept of PHDP among PLHIV, service providers, and stakeholders
understanding the experiences and practices of PLHIV relevant to PHDP, including sexual behaviors
describing available, prevention-related resources, activities, and services that support PHDP
understanding challenges and gaps in addressing HIV prevention among PLHIV and exploring
opportunities for strengthening PHDP activities at community levels
8
3. Methods
3.1
Study Design
The design of this study was informed by a literature review and a series of field visits in 2010 and 2011 to
Uganda, Ethiopia, and Mozambique by the C-Change team and representatives of USAID’s Office of
HIV/AIDS. During these visits, discussions were held with key stakeholders, service providers, and PLHIV.
The study followed a multi-method design and included qualitative and quantitative components:
focus group discussions (FGDs) with male and female PLHIV ages 18–49
FGDs with female PLHIV with experience in PMTCT programs, female sex workers, and male truck
drivers
in-depth interviews (IDIs) with male and female PLHIV ages 18–49
IDIs with members of PLHIV support groups, healthcare providers, NGO staff, community leaders, and
religious leaders
a survey of PLHIV ages 18–49
interviews with staff of entities providing PHDP support to PLHIV, including health facilities, NGOs,
and faith-based organizations (FBOs); community-based organizations (CBOs), and private-sector
organizations
The study in Uganda was conducted in partnership with a research team from Makerere University. In
January 2012 in Kampala, 36 data collectors were trained and study instruments were pretested. Data
collectors were allocated to study areas based on language skills. Data collection took place in February
and March of 2012.
3.2
Study Locations
The study was conducted in a rural and an urban community in each of four districts: Kitgum (Northern
Region), Mbale (Eastern Region), Rakai (Central Region), and Kasese (Western Region). Before data
collection began, consultations were held with local stakeholders.
3.3
Study Population, Recruitment, and Data Collection
Recruitment at study sites was overseen by a team leader and guided by senior researchers. Selection for
FGDs was purposive, based on sites providing opportunities for in-depth study of different issues related
to PHDP. Similarly, selection for IDIs was purposive, aiming for a range of PLHIV, service providers, and
community members with in-depth knowledge of different issues.
3.3.1. Focus groups
Table 1 describes the range of FGD participants in the study. A total of 21 FGDs were conducted,
distributed between the four study sites. FGDs were conducted on a single-sex basis with a total of 150
participants—86 females and 64 males—at venues convenient to them and where discussions could be
conducted confidentially.
9
FGDs took approximately two hours. All were conducted in the language of preference of participants,
guided by a facilitator and supported by a note-taker. Discussions were digitally recorded.
Table 1. Focus Group Discussions, by Participant Category and District
#
Male PLHIV ages 18–25
Male PLHIV ages 26–49
Female PLHIV ages 18–25
Female PLHIV ages 26–49
Females with PMTCT experience
Female sex workers
Male truck drivers
Total
Male (M) Female (F)
Kitgum
(Kit)
4
4
4
4
3
1
1
4
4
–
–
–
–
1
–
–
4
4
3
1
–
1
1
1
1
1
–
–
Kasese
(Kas)
1
1
1
1
–
–
1
21
9
12
5
5
Mbale
(Mb)
1
1
1
1
1
1
–
Rakai
(Rak)
1
1
1
1
1
–
–
6
5
3.3.2. In-depth interviews
Table 2 shows the distribution of participants in a total of 26 IDIs in the four study sites. PLHIV interviewed
were purposively selected from organizations providing PHDP-related services. The purposive selection of
participants in other categories was guided by key informants familiar with support to PLHIV .
IDIs took approximately one hour. They were conducted at venues convenient to participants, where
discussions could be conducted confidentially. All IDIs were conducted in the language of preference of
the participant and were digitally recorded.
Table 2. In-Depth Interviews, by Participant Category and District
#
Male PLHIV ages 18–25
Male PLHIV ages 26–49
Female PLHIV ages 18–25
Female PLHIV ages 26–49
Support group members
Home-based care providers
Health workers
HIV focal persons
Community leaders
Religious leaders
NGO staff
Total
M
0
4
0
3
4
3
1
1
4
3
3
26
F
0
4
0
0
2
1
0
1
2
2
0
12
Kit
0
0
0
3
2
2
1
0
2
1
3
14
Kas
0
1
0
1
1
0
0
0
1
1
1
6
Mb
0
1
0
0
1
1
1
1
1
0
0
6
Rak
0
1
0
1
1
1
0
0
1
1
1
7
0
1
0
1
1
1
0
0
1
1
1
7
3.3.3. PLHIV survey
A total of 252 PLHIV were sampled for the PLHIV survey, using a snowball approach and the assistance of
PLHIV support groups, networks, associations, organizations, and health facilities providing support
services to PLHIV. Primary recruitment criteria included age—between 18 and 49—and equal distribution
between sites.
10
A higher proportion of female PLHIV were recruited, in line with the higher HIV prevalence among females
in Uganda. Older participants were also more likely to be recruited, a product of the higher proportion of
PLHIV in older age groups. There were no refusals among recruited respondents; the response rate was
100%. Questionnaires were translated into relevant local languages. The survey comprised interviews
that lasted approximately one hour, conducted in a location convenient to each participant that afforded
privacy and confidentiality.
Table 3 outlines the demographic characteristics of participants in the quantitative survey, who were fairly
evenly distributed between the four study areas. Within the sample, 38% were male and 62% were
female; more than two-thirds (69%) were ages 30–49. Most respondents had limited education: a quarter
(25%) had completed secondary schooling, while a further 6% held a post-school qualification. Main
languages spoken were Luganda (33%), Acholi (23%), and Lumasaba (16%).
Among respondents, 47% were married, 8% were in cohabiting relationships, and around a third (32%) fell
into the divorced/widowed/other category. Among those who reported their age at marriage, 51% said
they had been married between the ages of 16 and 20, 39% married when they were over 20, and 10%
were married before they turned 16. Only a minority did not have children (9%) and nearly half (46%) had
four or more children.
Only one in ten (10%) had formal employment and around half (47%) reported informal employment. The
remainder were unemployed (41%) or students (2%). A large majority were Christian (87%), and the
remainder were Muslim (12%) or another religion(1%). Only around a fifth reported having electricity
(21%), a quarter had piped water (25%), and around two-thirds had a household latrine (62%). Most lived
in houses of brick (59%) and 37% lived in traditional structures, including those made of mud and thatch.
Table 3. Demographic Factors Relating to Survey Respondents, by Gender
Demographic Factors
#
n=252
District
Kasese
Kitgum
Mbale
Rakai
Age
18–29
30–49
Education
No schooling/some primary schooling
Completed primary schooling
Completed secondary schooling/post-school qualification
Marital status
Married
In cohabiting relationship
In non-cohabiting relationship
Single, not in a relationship
11
%
%M
n=95
%F
n=157
60
61
63
68
24
24
25
27
19
31
19
32
27
20
29
24
79
173
31
69
26
74
34
66
139
93
20
52
18
25
51
19
24
52
17
26
118
21
18
15
47
8
7
6
65
14
6
4
36
5
8
7
Demographic Factors
#
%
n=252
80 32
Divorced/widowed/other
Age at marriage
<16
16–20
>20
Number of children living
None
1
2
3
>4
Employment
Student
Unemployed
Informal employment
Employed
Religion
Christian
Muslim
Other
Amenities in household
Electricity
Piped water
Household latrine
Main building material of home
Mud/thatch/traditional
Wood
Brick
Corrugated iron
%M
n=95
%F
n=157
11
45
19
100
76
10
51
39
3
31
67
14
63
23
22
37
41
37
115
9
15
16
15
46
6
15
15
14
51
10
15
17
15
43
6
102
120
24
2
41
48
10
2
32
57
10
3
46
42
10
220
30
2
87
12
1
93
6
1
84
15
1
53
64
157
21
25
62
20
28
61
22
24
63
97
7
148
3
39
3
59
1
41
1
58
1
37
4
59
1
3.3.4 Survey of service providers
A total of 22 entities were represented in the survey of service providers, with the number of interviews
varying for each entity and in each study area. The NGOs selected served multiple communities, while the
CBOs each served one.
Table 4. Service-Provider Interviews, by Type of Entity and District
#
Government hospitals and health centers
NGOs (serving multiple communities)
CBOs (serving one community)
FBOs
Private-sector organization
Total
9
6
2
4
1
22
12
Kas
Kit
2
0
0
3
0
5
Mb
2
3
0
1
0
6
Rak
3
1
1
0
0
5
2
2
2
0
1
6
3.4
Study Instruments, Data Management, and Analysis
Study instruments included questions guides for the FGDs and IDIs, a questionnaire for the PLHIV survey,
and a questionnaire that included open-ended questions for service providers. All study instruments were
pretested during the training of data collectors.
Recordings of all FGDs and IDIs were translated and transcribed into Word files. Transcription of FGDs was
aided by notes taken during discussions. Transcripts were checked for accuracy, then imported into a
qualitative analysis software (Nvivo 8) for coding and thematic analysis. Quantitative data was captured
using EpiInfo and analyzed in SAS.
3.5
Ethical Considerations
The study protocol was approved in the United States by an ethical review board acting on behalf of
C-Change. The protocol was reviewed and approved by the Institutional Review Board of the Joint Clinical
Research Center and by the Uganda National Council for Science and Technology (UNCST), which approves
all research in the country. Study activities were also approved by the President’s Office in charge of
research.
Written, informed consent was obtained from all study participants in their preferred local language.
While all PLHIV who participated in the study had disclosed to one or more other people, not all had
disclosed their status publicly. Care was taken to ensure that FGDs and IDIs were conducted privately,
with due consideration for privacy and confidentiality. All data were collected anonymously, and no
responses were linked to a person’s name. Team leaders and supervisors maintained control over all
digital files, and written notes and all data were kept securely.
All members of the study team, including senior researchers and data collectors, were required to
complete and obtain certification via an online ethics course on protection of human subjects by the U.S.
National Institutes of Health .
Training of data collectors covered a range of ethical issues. Study teams identified support systems in the
community to which participants requiring assistance could be referred during the study. A senior
researcher from C-Change conducted an observational visit during data collection to ensure ethical
procedures were being observed.
3.6
Strengths and Limitations of the Study
The study in Uganda forms part of a multi-country study on PHDP that aims to help guide policy and
strategy in eastern and southern Africa. The multi-method approach allows for triangulation of findings,
providing insight into a wide range of perspectives on HIV prevention in the context of a PHDP framework.
Although the multi-method approach strengthens the study design, considerations of cost and practicality
limited the number of study areas as well as the number of PLHIV respondents in the survey (252).
The study sought to obtain the perspectives of PLHIV in communities in Uganda. While findings are
representative of experiences of PLHIV in selected study areas, they cannot be generalized to Uganda as a
whole. PLHIV are over-represented, in comparison to the views of policymakers, strategists, and managers
13
and implementers providing support to PLHIV. Only one or two representatives of organizations and
entities providing services and support to PLHIV took part in interviews. These were largely descriptive of
services and support offered, rather than extensive assessments of the depth and quality of these services.
All PLHIV who participated in the interviews and survey were selected purposively, largely guided by a
snowball approach flowing through local organizations of PLHIV, organizations working with PLHIV, or
health facilities providing services to PLHIV. While concerted attempts were made to maximize variation
among participants, those recruited were more likely to have been living with HIV for some time. Newly
infected persons were under-represented in the study.
Recruitment limitations were also reflected in the high number of older survey participants currently on
ART. It proved difficult to obtain a high proportion of male participants, partly because more women than
men are living with HIV and partly because men are potentially more reluctant to be open about their HIV
status.
Recruitment was conducted during clinic days to allow for inclusion of employed PLHIV and a good
balance of PLHIV by economic status. In both the qualitative and quantitative components of the study,
research activities were conducted mainly on week days and during working hours.
4. Findings
Findings presented combine data from all components of the study: survey findings, substantiated by
findings from FGDs and IDIs, followed by findings from interviews with service providers.
4.1
Perceptions about the Situation of PLHIV
Overall, participants reported mixed reactions concerning the situation of PLHIV in their communities.
Some perceived the situation to be much better or that it had improved over the past few years, while
others felt it had worsened. The main perceived improvements noted were the increased availability of
and access to ART, counseling on disclosure, and reduced stigmatization of PLHIV. Those with alternate
views held that the number of PLHIV needing support at facilities was increasing, that alcohol
consumption continued to contribute to sexual risk-taking, and socioeconomic factors led to food
insecurity among PLHIV and transport costs that made it difficult to access ART.
The level of adherence to ART was perceived to be good, and counseling was said to meet the needs of
PLHIV:
The way I see people here, when they get to know that they are living with HIV, they
are following the information and adhering to the medication, and the counseling is
helping people a lot to cope with HIV and to comfort the clients as well for a better life
(Kitgum, FGD, Males 26–49).
However, an increased number of people accessing ART led to the impression that AIDS was increasing:
14
I see the sickness is increasing because the number of those who are infected keeps on
increasing, basing on the new number that is joining our group in this hospital where I
get drugs (Kasese, FGD, Males 18–25).
Some linked increases in new infections to alcohol consumption, which was said to contribute to ‘sexual
urges,’ ‘boldness,’ lack of condom use, and people being unfaithful to their partners. The wider availability
and positive effects of ART on the health of PLHIV were also seen as diminishing the fear of HIV infection.
Poverty and lack of livelihood support contributed to food insecurity that undermined ART adherence,
while limited access to transport meant PLHIV could not easily access drug supplies:
Food is not there. Transport is hardest because some of us come from very far, like in
Mucwini, Namukora, and even from Acholi Bul. So you can imagine sometimes we have
to walk to this health facility and get drugs (Kitgum, FGD, Males 25–49).
Some health workers were said to be ‘angry when PLHIV missed appointments for medical checkups and
ART resupply due to transport or other problems.
Although there was general acceptance of PLHIV in communities and the observation that stigma and
discrimination had declined, negative experiences were not absent. Experiences of the latter included
mistreatment by family members and health workers, such as isolation in the home and insensitive
comments and rudeness at health facilities. Participants also felt that some people still had inadequate
knowledge of HIV, were fearful of being tested, or attributed infection to having been bewitched
PLHIV were said to be encouraged by health workers to maintain their health, access ART when needed,
avoid new infection or re-infection of sexual partners, and avoid drinking and smoking.
Generally the situation is good. Even the people who don’t have HIV don’t mistreat us.
They take us as their friends or brothers. We engage together in the various social
activities. This helps us avoid stress and worry, including thoughts of dying soon. Like
my colleagues, I ask for more support, especially as regards health education (Rakai,
FGD, Males 26–49).
4.2
Access to Information About HIV and AIDS and Perceived Knowledge Levels
Survey participants were asked about their sources of information on HIV and AIDS and how often they
accessed them (Table 5). The majority (89%) reported they listened to radio either daily or a few days a
week, and a small minority (19%) reported they watched television daily or a few days a week. Few (11%)
reported never or rarely listening to radio, while a majority (81%) reported never or rarely having watched
television: 88% in Kasese District, 76% in Mbale, 81% in Rakai, and 80% in Kitgum. A higher proportion of
male than female participants reported they had regular access to information via radio—95% and 85%,
respectively.
Overall, survey participants reported low access to magazines, newspapers, and internet services. A
minority (21%) read newspapers either daily or few days a week. Across all districts, both age groups, and
both genders, most said they never read newspapers—75% in Kasese, 79% in Mbale, 78% in Rakai, and
84% in Kitgum— and 99% reported that they never or rarely used the internet (Table 5).
15
Notably, about three-quarters of participants (78%) reported daily or regular use of cellular telephone
services: 81% of males and 76% of females, 72% of those ages 18–29, and 80% of those ages 30–49.
Notably, only about three out of five (62%) in Kitgum District used cell phones daily or regularly.
Table 5. Media and Cell Phone Use, by Gender, District, and Age
#
% %M
%F
(n=252)
(n=95) (n=157)
% Kas
(n=60)
% Kit
(n=61)
% Mb
(n=63)
% Rak
(n=68)
% 18–29
(n=79)
% 30–49
(n=173)
Listen to radio**
Never/a few days
a month
28 11
5
15
17
7
6
15
10
12
A few days a
224 89
95
85
83
94
94
85
90
88
week/daily
Watch TV
Never/a few days
a month
205 81
76
85
88
80
76
81
77
83
A few days a
week/daily
47 19
24
15
12
20
24
19
23
17
Read newspaper
Never/a few days
a month
199 79
68
85
75
84
79
78
82
78
A few days a
53 21
32
15
25
16
21
22
18
3
week/daily
Use internet
Never/a few days
a month
250 99
99
99
98
97
100
100
97
99
A few days a
week/daily
2 1
1
1
2
3
0
0
1
1
Use cellphone**
Never/a few days
a month
56 22
19
24
20
38
19
13
28
20
A few days a
week/daily
196 78
81
76
80
62
81
87
72
80
**Relationship between listening to radio and gender was significant (p<.01); relationship between cell phone use
and age and district were also significant (p<.05 and p<.01, respectively).
Overall, a majority of participants reported having ever attended a community meeting on HIV and AIDS
(60%), an HIV/AIDS training workshop (59%), or a play or educational event (54%) (Table 6). More males
than females and more participants in the age group 30–49 reported having attended all three types of
activities. Participants from Kitgum were less likely to attend these events than participants from other
districts (p<.001).
16
Table 6. Attendance at Workshops and Community-Level Activities, by Gender, District, and Age
Activity
#
%
(n=252)
%M
%F
(n=95) (n=157)
% Kas
(n=60)
% Kit
(n=61)
% Mb
(n=63)
% Rak
(n=68)
% 18–29
(n=79)
% 30–49
(n=173)
Attended HIV/AIDS
training workshop** 149
59 65
55
65
31
60
78
47
65
Attended a community
meeting on
HIV/AIDS**
152
60 62
59
67
51
54
69
46
67
Attended a play or
educational event** 136
54 58
52
37
30
62
84
51
56
**Relationship between attending training workshop and age and district was significant (p<.01 and p<.001, respectively);
relationship between attended community meeting and age was significant (p<.01); relationship between attended
educational event and district was significant (p<.001).
About half of participants (51%) considered they had an adequate knowledge of HIV and AIDS. About a
quarter (26%) felt they had a very good knowledge, and another quarter (23%) said their knowledge was
poor. More females than males perceived their knowledge about HIV and AIDS to be poor—26% vs. 18%,
respectively.
A majority of participants (78%) reported that they actively sought information about HIV and AIDS. Of
these, most did so by speaking to people, including health workers (96%), while others read booklets
and/or leaflets about HIV and AIDS (49%). Few participants (3%) said they had sought information via the
internet, and about one in five (19%) had ever heard of an HIV/AIDS hotline or helpline.
Table 7. Knowledge about HIV and AIDS and Information-Seeking, by Gender and Age
#
%
(n=252)
Personal knowledge
I have a very poor
knowledge of
HIV/AIDS
I have an adequate
knowledge of
HIV/AIDS
I have a very good
knowledge of
HIV/AIDS
Information-seeking
I actively look for
information about
HIV/AIDS (yes)
Of yes…
Read booklets and/or
leaflets
Speak to people such
as health workers
Use the internet to
find information
%M
(n=95)
%F
(n=157)
% M 18–29
(n=25)
% M 30–49
(n=70)
% F 18–29
(n=54)
% F 30–49
(n=103)
58
23
18
26
24
16
30
24
128
51
57
47
56
57
54
44
66
26
25
27
20
27
17
32
196
78
76
79
72
77
76
81
95
49
54
45
61
52
42
47
189
96
96
97
100
94
95
98
6
3
6
2
11
4
2
1
17
#
%
(n=252)
Heard of HIV/AIDS
hotline/helpline
Yes
No
47
205
19
81
%M
(n=95)
24
76
%F
(n=157)
% M 18–29
(n=25)
15
85
24
76
% M 30–49
(n=70)
24
76
% F 18–29
(n=54)
% F 30–49
(n=103)
13
87
17
84
While survey findings indicate a high degree of confidence among PLHIV that they have good knowledge
of HIV and AIDS, concerns were voiced in the qualitative component about knowledge gaps among some
people.
Participants also felt that there was insufficient evaluation of the impact of communication campaigns.
Further, skills gaps in relation to health communication, funding cycles, and project close-outs were said
to contribute to lack of continuity. Certain sectors had the potential to constrain prevention efforts—for
example, some churches discouraged condom use by linking it to immorality.
As I have said, we normally go out when there is a project, but when the project phases
out, people tend to keep quiet and no one checks whether the project had good results.
That means that there is need to empower the community leaders to take up such
activities and do something about it (IDI, Kasese).
4.3
Understanding of PHDP
Overall, participants could not provide a precise definition of PHDP. The more familiar term was ‘positive
living,’ but terms such as ‘positive prevention’ and ‘prevention with positives’ (PwP) were known.
Nonetheless, most participants demonstrated that they understand the general concept of PHDP and
were able to provide a description of different elements falling within the definition of PHDP.
They explained that HIV prevention involving PLHIV included preventing HIV transmission to other people
and avoiding re-infection of sexual partners who were also HIV positive, some adding that re-infection
involved the risk of developing HIV strains that may be resistant to antiretroviral drugs (ARVs). They also
noted that unprotected sex included the risk of acquiring other STIs that could weaken their immune
systems further.
Respondents argued that it was their responsibility to stop the spread of HIV by practicing sexual
responsibility through living by the principle ‘HIV stops with me.’ This statement was linked to safer sex
practices and disclosure of HIV status:
Our pastor told us to stop spreading the virus to others. They even preach on how to be
kind not to infect others. He emphasized the idea that HIV stops with me. He also
encouraged us to disclose to others especially our family members (Rakai, FGD,
PMTCT).
Condoms were recognized as the primary means of preventing onward HIV transmission and curtailing the
epidemic:
18
When I have HIV and if I don’t want to transmit to another person who is also HIV
[positive], I have to use protection or condom. Another thing is that when I find that a
person is HIV [positive], I cannot sleep with her without protection at all because I do
not know how strong is his/her virus compared to that which I have… That is why I say
if you have HIV and you are going to sleep with a person who is also infected you have
to use a condom for protection (Kasese, FGD, Males 18–25).
Responsibility for condom use was strongly voiced by sex workers, who also highlighted the importance of
not contributing to the overall spread of HIV:
When you discover that you have the virus, try to use a condom, and if you find
someone who refuses to use a condom, you leave that one so that you do not spread
the virus to all people. If you spread it all over the village, HIV won’t end but it will just
multiply (Mbale, FGD, Sex workers).
Respondents was also suggested that sex weakened the immune system, and therefore it was better to
reduce one’s coital frequency. They said that some health workers promoted abstinence for PLHIV who
felt they could not use condoms consistently; some participants said they had chosen this pathway, in line
with their circumstances:
Being a widow, I decided to stay single as I am old and mature with grandchildren. I
heard if you have other partners you can get re-infected, so I decided to abstain from
sex (Rakai, FGD, Females 26–49).
Fidelity was another aspect of HIV prevention highlighted by participants, including being faithful to one’s
spouse and, if unmarried, avoiding multiple or concurrent sexual partnerships. As a female participant
observed:
They cautioned us not to move from one partner to another because you can spread
the virus. Yes, loving men randomly, you should sit down and think that you have the
virus and you avoid sex, but if you get one who understands you, then you should
advise him to use preventive measures like a condom (Mbale, FGD, PMTCT).
Adherence to ART was also seen as a component of HIV prevention. Adherence support and disclosure
were both seen as relevant strategies for minimizing new infections or re-infections and could potentially
strengthen relationships with sexual partners. Disclosing to family members might also lead to assistance
with ART adherence:
…You remain planning for your family together till God calls you from this
world…Sometimes you may forget to take your medicine, but if you have someone you
trust, he or she can remind you about the time schedule when you are supposed to take
it, so that you do not forget (Mbale, FGD, Sex workers).
Participants’ understanding of PHDP included perspectives that reflected an holistic approach to living
with HIV that included healthy relationships, personal wellbeing, hygiene, nutrition, and use of PMTCT
services. Having fewer children was mentioned as a component of PHDP; a few noted male circumcision
as another component.
19
Throughout the narratives, gendered variations were reflected in responses to PHDP and issues of HIV
prevention. For example, a man was said to be more likely to be angry if his wife or partner tested positive,
and was more likely to infer his status when learning of his wife or partner’s HIV test. Compared to
women, men were also more inclined to be sorrowful and secretive about their HIV-positive status; less
inclined to believe the HIV diagnosis; less inclined to belong to support groups; less likely to internalize
and deal with the challenges of living with HIV; and more inclined to refuse to take medications.
4.3.1 Sources of information on PHPD
Study participants reported they had heard about several elements of PHDP (Table 8). For example, the
vast majority had ever heard about couple testing and knew about existing HIV treatment services (94%
and 95%, respectively). Over three-quarters (77%) reported that they heard about the importance of TB
treatment among PLHIV.
HIV prevention was a major aspect of PHDP about which participants were informed. Among them, 94%
said that HIV can be prevented through the use of condoms (94%); about three-quarters (78%) were
aware that there was need for prevention of HIV re-infection among PLHIV; and a large majority (87%)
had heard that having multiple or concurrent sexual partners increase the risk of HIV infection and should
be avoided. Most were aware of HIV discordance (83%), and most had heard it was important to disclose
one’s HIV status (88 %). The vast majority had also heard about PMTCT (91%) and 87% were aware of the
possibility that HIV-positive mothers could have uninfected babies.
Overall, participants indicated that television, billboards, and newspapers or magazines were the least
common media from which they learned about PHDP-related topics and the most common were radio
and posters or leaflets. Radio programs were reportedly the source from which the vast majority of
participants had learned about HIV disclosure (94%) and about couple counseling and testing, HIV
treatment, discordancy, PMTCT, having children when living with HIV, and HIV re-infection (89%). About
one in five participants had heard via posters and leaflets about couple testing, HIV treatment, TB
treatment, HIV prevention (condoms), discordancy, and support groups and associations.
Table 8. Sources of Information about PHDP-Related Topics
Topics
Couple testing
HIV treatment
TB treatment
HIV prevention (condoms)
Avoid multiple/concurrent partners
HIV discordancy
PMTCT
Having children among PLHIV
HIV re-infection
HIV disclosure
Prevention of HIV among PLHIV
Non-discrimination of PLHIV
Support groups/associations
HIV/AIDS helpline/hotline
#
%
(n=252)
236
94
239
95
193
77
238
94
218
87
209
83
228
91
220
87
197
222
176
199
170
39
% billboards
78
88
70
79
68
16
20
% radio
% TV
8
7
4
8
6
4
3
3
89
89
87
86
87
90
90
89
7
7
7
11
7
3
6
4
% poster/
leaflet
24
21
21
20
15
14
21
12
4
7
3
5
4
10
90
94
89
88
85
64
3
5
3
3
3
5
13
10
13
14
19
31
% newspaper/
magazine
7
8
5
7
4
6
7
6
6
5
4
5
4
8
The survey also asked whether participants had discussed PHDP-related topics and with what type of
person (Table 9). Overall, they reported they were most likely to discuss PHDP topics with counselors and
nurses or doctors and were less likely to have such discussions with sexual partners, family members, and
other PLHIV. The vast majority had discussed the following topics with someone: couple testing (95%), HIV
treatment (97%), and condom use for HIV prevention (93%). Notably, only about a third reported having
discussed couple testing with a sexual partner or a family member (37% and 31%, respectively). Similar
proportions (35%) had discussed condom use for HIV prevention with a sexual partner, and only about
one in five (20%) had this discussion with another person living with HIV. Fewer females than males—28%
vs. 46% —reported they had discussed condom use for HIV prevention with a sexual partner.
The next most commonly discussed PHDP topics were HIV disclosure (89%); PMTCT (88%); avoiding
multiple/concurrent partnerships (87%); having children among PLHIV and non-discrimination of PLHIV
(87%); and discordancy (83%). Only about two to three out of ten respondents had discussed any of these
topics with a sexual partner, family member, or other PLHIV.
Overall, seven out of ten respondents (70%) reported having discussed prevention of HIV among PLHIV,
and only about one in ten (13%) had ever discussed the topic with a sexual partner. Notably, only about
three out of five (63%) had ever discussed TB treatment or support groups and associations for PLHIV with
someone, and only a quarter (25%) had discussed an HIV/AIDS helpline/hotline with someone.
Table 9. Whether PHDP Topics Discussed and With Whom
Topics
#
%
% no-one % sexual
%
% nurse/
anyone
partner counselor
doctor
Couple testing
240
95
5
37
57
42
HIV treatment
245
97
3
33
59
49
TB treatment
160
63
37
13
61
53
HIV prevention (condoms) 234
93
7
35
57
42
Avoid multiple/concurrent
partners
220
87
13
23
57
40
HIV discordancy
210
83
17
17
64
45
PMTCT
221
88
12
21
66
53
Having children
219
87
13
22
64
51
HIV re-infection
202
80
20
18
68
49
HIV disclosure
224
89
11
30
68
50
Prevention of HIV among
PLHIV
177
70
30
13
67
36
Non-discrimination of
PLHIV
204
81
19
20
65
33
Support groups/
associations
159
63
37
10
67
36
HIV/AIDS helpline/hotline
62
25
75
10
55
45
% family
member
31
32
19
18
% PLHIV
21
25
26
20
%
friend
34
33
19
29
22
14
10
15
17
17
27
23
20
12
12
34
17
15
26
18
20
30
14
23
23
19
18
31
12
8
31
23
28
15
Qualitative data indicate that respondents received information on PHDP through mass media channels
and a variety of personal sources , including communication with peers, partners, family, and health
workers. Important additional sources of information included training sessions conducted by health
21
facilities and NGOs and information that flowed through support groups and associations, peer group
discussions, and community meetings.
4.4
Length of Time Living with HIV and Health Status
The largest proportion of participants surveyed had tested HIV positive more than five years ago (39%).
Those ages 18–29—both males and females—were more likely to have tested positive less than a year
ago than those ages 30–49—7% and 13%, respectively (Table 10).
Table 10. Number of Years Living with HIV, by Gender and Age
Years since tested
positive **
#
(n=252)
%
%M
(n=95)
%F
(n=157)
%M
%M
18–29
30—49
(n=25)
(n=70)
< 1 year
42
17
17
35
28
13
1 – 3 years
67
27
27
31
40
24
>3 – 5 years
43
17
19
22
16
14
>5 years
100
39
39
11
16
49
**Relationship between time since diagnosis and age was significant (p<.001)
%F
18–29
(n=54)
35
31
22
11
%F
30–49
(n=103)
7
22
17
54
Most participants reported they were in good physical health (Table 11). The majority (66%) said they
were able to perform their daily activities well or, despite not always feeling well, they were still able to
function normally in their daily life activities (27%). The trend of perception of good physical health was
similar, whether or not a participant reported being on ART and the number of years on ART. Only a small
minority (7%) of participants reported being bedridden most of the time.
Table 11. Perceived Physical Health of Survey Participants, by Age and ART Status
Perceived physical health
I feel well and am able to
perform daily life
activities
I don’t always feel well,
but can perform daily life
activities
I spend some of the time
bedridden
I am mostly bedridden
#
%
(n=252)
%M
%F
(n=95) (n=157)
166 66
67
%
not
on
ART
65
73
% on
ART
<=1 yr
(n=72)
73
% on
ART 1–3
yrs
(n=33)
59
% on ART
>3–5 yrs
(n=35)
% on ART
>5 yrs
(n=46)
67
70
67 27
27
26
24
24
35
27
19
18
7
4
9
3
3
7
7
11
1
0
1
0
0
0
0
0
2
The study found that most participants also perceived themselves to be in good mental health, with a
majority (61%) reporting that they had not felt sad or depressed about their HIV-positive status in the past
month (Table 12). Moreover, among those who had felt sad or depressed in that period (39%), most had
received counseling or support to deal with their depression (81 %). Females reported more depression
than males (43% vs. 33%), but were more likely to receive counseling and/or support than males (85% vs.
71%). Compared to PLHIV who had been recently diagnosed, participants who had known their HIV22
positive status longer tended to experience less depression and were also more likely to receive
counseling and support .
Most survey participants (93%) found religion to be either very or moderately important to them in coping
with HIV, with more females reporting this than males—96% vs. 89%, respectively (Table 12).
Table 12. Depression, Counseling, and the Role of Religion, by Gender and How Long Status Known
#
%
(n=252)
Have you felt sad or depressed
about your HIV status in the past
month?
Yes
No
If yes, have you ever received
counseling or support to help you
deal with depression?
Yes
No
Importance of religion in coping
with HIV
Unimportant
Moderately important
Very important
4.5
%M
(n=95)
%F
(n=157)
% <1 yr
(n=42)
% 1–3 yrs
(n=67)
% >3-5 yrs
(n=43)
% >5 yrs
(n=100)
99 39
153 61
33
67
43
57
52
70
40
60
40
60
33
67
80 81
71
85
75
92
85
82
19 19
29
15
25
8
15
18
16 6
83 33
152 61
10
34
56
5
33
63
4
52
44
12
28
61
4
41
56
5
28
67
Experiences with Disclosure, HIV Stigma, and Discrimination
The majority of survey participants reported that they had disclosed their positive HIV status to a variety
of persons, including a sibling (71%), parents (68%), a spouse or partner (67%), another family member
(65%), friends (62%) and their own children (52%) (Table 13). Overall, participants were less likely to
disclose their status to community members (46%), work colleagues (24%), and employers (16%).
There were sizable gender differences in patterns of HIV disclosure. Males were more likely than females
to disclose their status to a spouse or partners (87% vs. 54%, respectively) or to work colleagues (29% vs.
20%, respectively). Females, however, were more likely than males to disclose their status to a family
member such as a parent (72% vs. 62%, respectively) and to their own children (55% vs. 46%, respectively).
The length of time knowing one’s HIV status affected patterns of disclosure. Generally, the longer
participants knew their status, the more likely they were to disclose to any category of person. The most
pronounced differences related to disclosure to their own children—14% when HIV status was known less
than one year vs. 74% when known for more than five years—and disclosure to community members—
19% when HIV status was known less than one year vs. 64% when known for more than five years.
Some participants said they had experienced negative outcomes following disclosure (Table 13). One in
ten reported that partners had left them (10%) or divorced them, if ever married (11%). Close to one in
ten (8%) also reported rejection from friends. In addition, close to one in ten (8%) reported experiencing
physical violence as a result of disclosure. Generally, females experienced more negative consequences of
23
disclosure than males, including physical violence (11% vs. 3%, respectively). Negative outcomes were not
related to the length of time participants knew their HIV status or to different types of people to whom it
was disclosed.
Approximately one in five participants (25%) reported they felt guilty about or ashamed of their HIV
status; 23% said they worked hard to keep it a secret; and 21% reported they worried that people would
discriminate against them if they learned of their positive status. There were sizable differences in these
responses, based on the length of time that participants had known their status: those who learned of
their HIV-positive status more recently reported more stigma than those who had known it for longer
periods of time.
Table 13. To Whom Disclosed and Negative Experiences, by Gender and How Long Status Known
#
% %M
%F
(n=252)
(n=95) (n=157)
To whom have you disclosed
your positive HIV status?
Spouse/sexual partner**
Sibling
Parents
Own children**
Other family members
Friends**
Community members**
Employer (among employed)**
Work colleagues (among
employed)
Have any of the following ever
happened to you because of
your HIV status?
Partner left me
Spouse divorced me (of ever
married)
Not allowed to cook for family
Parents rejected me
Friends rejected me
Lost job
Evicted from accommodation
Experienced physical violence
Forbidden to share household
utensils
Agreement with statements
related to stigma
I feel guilty and ashamed
because I have HIV
Since learning I have HIV I have
isolated myself from family and
friends
I work hard to keep my HIV
status secret**
% <1 yr
(n=42)
% 1–3 yrs
(n=67)
% >3–5 yrs
(n=43)
% >5 yrs
(n=100)
168
179
172
131
165
156
116
23
67
71
68
52
65
62
46
16
87
69
62
46
60
63
40
21
54
72
72
55
69
61
50
12
55
57
67
14
50
43
19
5
66
63
64
46
52
48
33
10
65
65
70
47
72
74
54
15
73
85
71
74
78
75
64
26
33
24
29
20
18
18
26
30
26
10
7
12
14
9
5
12
22
7
8
19
7
5
20
11
3
3
8
3
2
8
8
0
1
7
2
3
3
13
5
5
8
3
1
11
15
0
0
5
0
2
7
12
3
5
9
5
3
7
11
2
0
2
2
0
7
10
4
5
10
3
2
9
11
4
1
6
0
6
0
7
63
25
26
24
36
34
21
16
33
13
13
13
19
15
9
10
57
23
25
21
41
39
7
11
24
#
% %M
%F
(n=252)
(n=95) (n=157)
% <1 yr
(n=42)
% 1–3 yrs
(n=67)
% >3–5 yrs
(n=43)
% >5 yrs
(n=100)
I worry about people
discriminating against me when
they know I am HIV positive**
53 21
19
22
31
33
23
7
Some people avoid touching
me when they know I have HIV
12
5
3
6
7
6
5
3
**Relationship between disclosed to partner and gender as well as time since diagnosis was significant (p<.001 and
p<.01, respectively); relationship between disclosed to children, friends, community members and employer and
time since diagnosis was also significant (p<.001, p<.001, p<.001, p<.05, respectively); relationship between
statements of ‘I work hard to keep my HIV status a secret’ and ‘I worry about people discriminating against me when
they know I am HIV positive’ and time since diagnosis was significant (p<.001)
4.5.1 Initial responses to HIV-positive diagnosis
Learning of one’s positive HIV status was a said to be a difficult process for both men and women,
although counseling support helped overcome the initial reaction. As one participant noted, ‘You need to
pick yourself up and move on.’ Men were said to find it more difficult to cope with the diagnosis, whereas
women were more able to share the information with friends:
After receiving results from an HIV test, men tend to be sorrowful and reserved about
the situation, but women try to share with their friends (Mbale, FGD, Males 18–25).
Suicidal thoughts were mentioned as an early reaction, but counseling reduced such intense responses
and helped PLHIV to address their positive status psychologically. Men were also said to be less inclined
than women to seek medical support and treatment; women were more inclined to consider their roles as
providers of family care:
The women feel very bad, but they often adjust quickly and start on ART treatment
because she knows that at the end of the day she has to take care of the family, so she
must be strong (Kitgum, FGD, Females 26–49).
A heightened sense of responsibility among women was said to add to their burden in dealing with HIV.
Praying as well as seeking advice from traditional healers were mentioned as other coping responses.
An HIV-positive diagnosis could bring about conflict in relationships, with men more likely to react
violently when they learned their own or their partners’ positive status:
A man will react harshly. If you tell him that you have HIV and you encourage him to
also go for a test, he accuses you of being a prostitute (Kasese, FGD, Females 18–25).
Abandonment by a partner affected both sexes and contributed to the perception that disclosure was not
always a viable course of action:
I believe that it should be kept a secret, as people finding out brings more problems. My
wife abandoned me after she got to know (Rakai, FGD, Males 26–49).
For PLHIV who continued to maintain their relationships, a strong motivating factor was the need to
provide for their families and care for children.
25
Couple testing was said to be a good strategy to reduce undesirable responses following an HIV-positive
diagnosis . After learning of their status, men were said to be more inclined to drink alcohol, ‘continue to
sleep around with whoever they can,’ or be motivated to transmit the virus to others for revenge,
including not disclosing to their wives so that ‘she also gets the virus.’ Though some women were said to
react in similar negative ways, such inferences were mentioned less often.
4.5.2 Negative consequences of disclosure
Disclosure of HIV status remained a major area of concern among PLHIV. Reportedly, accusations of
infidelity were often directed toward the disclosing partner. Negative experiences following disclosure
and uncertainly about how a spouse or partner might react perpetuated hesitance about taking this step.
Negative consequences, experienced first- or second-hand, were illustrated in narratives that recounted
relationship breakdown, family dissolution, separation, and divorce:
I have a brother who tested separately in a private clinic, and they later disclosed their
results to each other, but the wife was positive and the man was negative. They
separated, and that’s how their family broke up (Rakai, FGD, Females 26–49).
Disclosure was said to impact on all spheres of a person’s life, opening up potential for being stigmatized.
This included stigmatizing attitudes toward one’s children. One woman noted, ‘They will even tell your
grown-up children, ‘Your mother has HIV’’ (Mbale, FGD, Females, 26–49).
Disclosing one’s HIV status when not in a relationship was seen to diminish opportunities for finding a
partner and to lead to unintended celibacy:
If you are not yet married, it becomes difficult for you to get a wife; the whole village
can know that you are sick [infected], and yet you also want to get married, so you
remain alone (Kasese, FGD, Males 18–25).
Participants mentioned various experiences of discrimination, such as landlords asking PLHIV to move out
after learning of their HIV status or even throwing their belongings out of the house.
Fear of gossip and isolation discouraged disclosure in work settings:
At the places we stay and work, if people get to know that you are HIV positive, they
laugh and gossip about you and start pointing fingers. So you ask yourself: My God,
what did I do wrong? So we even fear disclosing our status (Rakai, FGD, Females 18–25).
The perception was that it was much more difficult to obtain employment if known to be HIV positive,
since PLHIV were seen as ‘on the verge of death’ or were seen as contagious. For those who never left
their jobs, there was an ongoing fear of stigma and discrimination.
When their status of HIV-positive children was known, their schooling could be disrupted:
HIV-positive children in our village are laughed at, abused, and can no longer go to
school, due to fear of being insulted by fellow children (Rakai, FGD, Females 18–25).
26
4.5.3 Addressing negative consequences of disclosure
Participants felt that the negative consequences of disclosure could be best addressed through sustained
communication that addressed negative attitudes and worked to overcome poor understanding of HIV
and AIDS. It was suggested that PLHIV take the lead in such sensitization, which could be carried out
through music, dance, and drama activities.
Participants recommended that the government enact and enforce strong laws on discrimination against
PLHIV, as this would help deter potential perpetrators. Discrimination was ‘not helping anyone at all’ and
mechanisms for reporting it to local authorities should be in place. A particular concern was discrimination
against children with HIV. Another was that there was insufficient guidance for parents or caregivers on
informing children that they were HIV positive.
Couple counseling was seen to assist with HIV disclosure, with couple testing for HIV as a good starting
point. While disclosure was deemed to be a relevant strategy, some participants emphasized selective
disclosure—for example, only to people who were trusted or only to other PLHIV. For some, nondisclosure was preferable to opening oneself up to the negative consequences of being public about one’s
HIV status. As one participant observed: ‘Silence is the key to many things’ (Rakai, FGD, Males 26–49).
4.5.4 Discrimination
Respondents highlighted a range of challenges associated with being known to be HIV positive, including
enduring stigma, discrimination, gossip, and name-calling by loved ones, family, friends, and community
members. They also pointed out that stigma and discrimination had decreased over time, in part due to
the wider availability of ART, reduction in physical symptoms among PLHIV, and improvements in public
awareness about the disease. In some locales, attitudes of acceptance and caring prevailed:
In my area, people are more understanding… I have not experienced any discrimination.
We are accepted as people living with HIV/AIDS, and some community members visit us
when someone falls sick; others even bring food stuff, especially when they see that the
person is too weak to find food for themselves (Kitgum, FGD, Males 26–49).
Among PLHIV who reported experiences of discrimination, the main perpetrators were relatives and
family members, schoolmates, workmates, neighbors, and landlords. Reports included that family
members of PLHIV isolated their eating utensils and refused to wash their clothing.
Some PLHIV who were employed said to have lost their jobs when their HIV status became known:
I know of a girl who informed her boss of her HIV status and was sacked because she
was considered a burden. The employer openly broke the news to her fellow workmates,
saying that the company would not be able to account for the days when she would go
for hospital visits and therefore she wasn’t prepared to keep her as an employee (Rakai,
FGD, Females 26–49).
Another participant said she lost her job when she requested time off to visit TASO:
I told my boss I am in TASO because when the date came to go to TASO, I requested
[time off] but ended up losing the job (Mbale, FGD, Females 26–49).
27
Responses to PLHIV in healthcare settings was reported as mixed. For some, health workers were
welcoming, amiable, friendly, and supportive and observed confidentiality. Credit for this was given to
improved understanding of the disease as well as to health workers or their relatives who were also HIV
positive:
I think discrimination used to happen long ago, but it’s no longer common. People now
understand the situation of living with HIV. Most of the people are suffering from the
same or have relatives who are faced by this problem, so it’s generally not common
(Mbale, FGD, Females 26–49).
Alternate and negative experiences in healthcare settings included perceived rudeness, being ignored
when obviously ill, insults and angry reactions when appointments were missed, and favoritism towards
wealthier clients or family members:
Those who have money are given special care. If we complain, we are told that they are
receiving medicines on behalf of another person. If you have no money to offer for quick
service, you can spend the whole day at the facility (Rakai, FGD, Females 18–25).
Truck drivers not from Uganda said they were treated dismissively when attempting to obtaining ART at
local clinics; such attitudes were said to extend beyond health workers. Complaints appear to have been
addressed in some instances:
I have also witnessed abuse; sometimes the health workers can decide to verbally
abuse us, but we complained and presently, in this hospital, the abuse is reducing
(Kitgum, FGD, Females 26–49).
Participants noted that management at health facilities and organizations supporting PLHIV were
concerned about discrimination and encouraged the registering of complaints, including by directly raising
the issue with those in charge of health services, use of suggestion boxes, and advocacy by client
representatives. Continuous sensitization to increase awareness about HIV was recommended as another
possible way to reduce discrimination, particularly in the general community.
Interestingly, it was suggested that counseling about HIV should not be reserved for PLHIV but also
provided to non-PLHIV. Participants suggested specific emphasis be put on enabling counselors and other
health workers to conduct home visits to educate family members about HIV and problems caused by
discrimination. Participants also suggested that legal action should be taken against organizations or
institutions that discriminated against them:
In my opinion, I think those who are faced with discrimination, especially within their
homes, should consult a counselor who can go and talk to these family members about
the dangers of discrimination (Mbale, FGD, Females 26–49).
While participants held the view that discrimination could be mitigated, they felt that it would never be
wholly eliminated.
28
4.6
Treatment for HIV and TB
The vast majority (93%) of participants reported that they had had their CD4 count checked, though more
than 13% of those ages 18–29 (one in ten) had not.
About three-quarters (74%) reported they were currently on ART (Table 14)–slightly more females than
males (76% vs. 71%, respectively) and more participants ages 30–49 than those ages 29 or younger (79%
vs. 62%, respectively). Those on ART had most commonly been on it for less than a year (29%) or five or
more years (33%). Males more than females (40% vs. 23%) and more participants ages 18–29 than those
30–49 were more likely to have been on ART for less than a year (51% vs. 21%, respectively).
Overall high adherence to ART was reported (Table 14). About four out of five participants (82%) reported
100% adherence with their medications. More older participants (ages 30–49) than younger participants
(ages 18–29) reported full adherence (84% vs. 76%, respectively).
Notwithstanding, participants referred to potential barriers to treatment adherence (Table 14), including
lack of transport to access treatment (34%), not having adequate food for their drug regimens (32%), ART
side effects (23%), and privacy issues with taking ART (12%). Concerns about ART stockouts were
mentioned by 11%.
Women reported these barriers at a higher rate than men, and those ages 18–29 at higher rates than
those ages 30–49. In addition, about three out of five participants (64%) reported that they were either
very worried or somewhat worried that government or donor funding would not be available in the future
to maintain the drug supply.
Table 14. Experience with CD4 Counts, ART, and Concerns, by Gender and Age
#
%
(n=252)
Have you had your CD4 count checked?
Yes
No
Are you currently on ART?
Yes
No
Of yes, how many years on ART?
<1 year
1-2 years
3-4 years
5+ years
On ART, experience with adherence
Totally followed prescription
Generally followed prescription
Often changed timing of taking drugs or modified
quantities taken
Almost never or never followed prescription
On ART, any problems with…
ART stock outs (yes)
Needing transportation (yes)
29
%M
%F
(n=95) (n=157)
% 18–20
(n=79)
% 30–49
(n=173)
235
17
93
7
93
7
94
6
87
13
96
4
186
66
74
26
71
29
76
24
62
38
79
21
54
37
34
61
29
20
18
33
40
16
18
25
23
22
19
37
51
22
12
14
21
19
20
39
152
23
82
12
85
10
80
13
76
16
84
11
10
1
5
1
3
1
7
0
6
2
5
0
20
64
11
34
9
30
12
37
14
47
9
30
#
%
%M
%F
% 18–20
(n=252)
(n=95) (n=157)
(n=79)
59 32
31
32
43
42 23
19
24
22
22 12
12
12
14
% 30–49
(n=173)
28
23
11
Taking ART when having inadequate food (yes)
Taking ART because of side effects (yes)
Taking ART because it cannot be done privately (yes)
On ART, worried that government or donor funding will
no longer be available to fund drug supply
Yes, very worried
83 45
39
48
39
47
Yes, somewhat worried
35 19
25
15
18
19
Not sure
29 16
12
18
24
12
No, not worried at all
39 21
24
19
18
22
**Relationship between had CD4 checked, on ART, time of ART and problem with ART adherence due to transport
was significant with age (p<.05, p<.01, p<.01, p<.001, respectively)
Survey respondents were asked if they had ever been diagnosed with TB and, if so, had received
treatment (Table 15). Since being diagnosed as HIV positive, a minority (16%) had ever been diagnosed
with TB, including more participants ages 30–49 than those ages 18–29 (19% vs. 10%, respectively).
Notably, one out of ten (10%) of those who reported being diagnosed with TB said that they had never
received TB treatment after their most recent diagnosis.
Table 15. Experience of TB and TB Treatment, by Gender and Age
#
(n=252)
Have you been diagnosed with TB any time since
knowing you are HIV positive?
Yes
No
Of yes, have you received TB treatment following your
most recent diagnosis?
Yes
No
%
%M
%F
(n=95) (n=157)
% 18–29
(n=79)
% 30–49
(n=173)
41
211
16
84
18
82
15
85
10
90
19
81
37
4
90
10
88
12
92
8
88
13
91
9
4.6.1 Benefits and challenges of treatment
The widespread availability of ART contributed to optimistic perspectives on life and health among PLHIV.
They recognized that adhering to the drugs allowed for longer and healthier lives, including reducing
opportunistic infections (OIs). The effects of ART were recognized as being transformative:
[After ART]…You can’t believe that this is the person who was so sick but has now
gained weight and strength, and you do more work than ever before, look healthy, and
change to another person (IDI, Kasese).
Being healthier, in turn, allowed PLHIV to rebuild their lives and participate in family life and social
activities:
The benefits of taking ARVS are many, but most important one is it reduces the viral
load and increases the patients CD4 count and therefore makes this patient live a
30
normal life and be able to carry out all the activities they intend to do… They can even
plan for the future, look after their children, and some activities that healthy people do
(IDI, Rakai).
While the benefits of ART were well appreciated, maintaining drug regimes could be difficult. Participants
reported increased appetites, but limited access to food because of poor economic circumstances. And
insufficient food affected their ability to take ART and overall adherence. Other challenges reported
included ART side effects: dizziness, body rashes, frequent headaches, nightmares, swollen legs, itchy skin,
and changes in sex drive:
The problem you find with this medicine is that I have seen couples who are on
drugs…[and] you find that men’s libido lowers, yet for the woman, it increases (Mbale,
FGD, Males 26–49).
Participants also reported secrecy around ART when couples had not disclosed or when parents sought to
protect children from knowing about a parent’s HIV status or disease progression:
Some may also hide them to avoid their children from worrying a lot...if they get to find
out that their parents take drugs, [it] might give them a thought that they are dying
soon, so to avoid this they hide while taking them (IDI, Kasese).
When it was difficult to take drugs as prescribed, a pattern of non-adherence could result. Scenarios of
this kind included being secretive about one’s HIV status among friends or family members or social
situations that included alcohol consumption:
Some people become party-goers. They continue drinking alcohol heavily and forget
that their lives depend on those drugs (Mbale, FGD, Sex workers).
For some PLHIV, fatigue with taking multiple courses of drugs led to taking a ‘drug holiday.’ But the
consequences for such inconsistency were recognized:
My husband has stopped swallowing the drugs, saying that he is tired of the drugs, so I
am personally confused, and yet I know it is very important for both of us to be on
drugs to help boost our immune systems (Kitgum, FGD, Females 26–49).
The problem we face with drugs, the moment they are over, two days or one day, is
enough to feel like all viruses have returned and as if you have never taken any drugs
(Kasese, FGD, Females 26–49).
Drug stockouts were also a cause of non-adherence. In general, these were said to last only a few days,
although shortages for longer periods were reported. The general view was that long-term ART supplies
were potentially under threat, and that increases in the number of PLHIV on ART could be a contributing
factor. Such concerns were heightened by lower-volume refills, which were perceived to be related to
drug rationing:
Our concern on drug supply is that there are times when we are given few drugs due to
shortage. For example, we used to get drugs for three months, but now we are given
31
for one month. This poses a threat that one time in future we may fail to get drugs
(Rakai, FGD, PMTCT).
4.7
Living with HIV and Sexual Relationships
More than a quarter of PLHIV in the study (27%) reported they had not had sex in the past year, more so
among females (Table 16). In that period, nearly three-quarters of participants (73%) had had a sexual
relationship—more males than females (86% vs. 65%, respectively) and more participants ages 18–29
than those ages 30–49 years (90% vs. 65%, respectively). In the past three months, most participants
(70%) had had a sexual relationship, more so among males than females (77% vs. 64%, respectively).
Among those who had not had a sexual relationship in the past year, only about one in five (22%)
attributed their abstinence to their positive HIV status, while another four out of ten (4 %) reported they
were not interested in sex. Notably, another four out of ten (38%) attributed their abstinence to lacking a
sexual partner.
About three-quarters of the participants (76%) reported having one sexual partner in the past year, with
more females than males reporting this experience (87% vs. 58%, respectively). Among PLHIV who were
sexually active, some acknowledged high-risk sexual behavior: over one in ten (14%) reported having two
sexual partners in the past year, more males than females (28% vs. 2%, respectively) and no difference
between the age categories. Similarly, some participants (17%) who had sex in the past three months had
an ongoing sexual relationship with another partner in the same period—more males than females (27%
vs. 6%, respectively).
Table 16. Recent Experience with Sexual Partnerships, by Gender and Age
#
[Among ever had sex}
(n=252)
Have you had sex in the past year?**
Yes
182
No
70
Of no, why have you not had sex?
Do not have a partner
28
Not interested in sex
27
Abstaining because of my HIV status
15
Of yes, how many sexual partners have you had in
the past year**
1
139
2
25
3
8
>3
10
Have you had sex in the past 3 months?**
Yes
127
No
55
Of yes, in the past three months, have you had sex
with a partner during the same time period that
you had an ongoing sexual relationship with
another partner?**
32
%
%M
%F
% 18–29
(n=95) (n=157) (n=79)
% 30–49
(n=173)
73
27
86
14
65
35
90
10
65
35
38
40
22
31
31
39
40
42
18
50
25
25
37
42
22
76
14
4
5
58
28
7
6
91
2
2
5
78
13
4
4
75
14
4
6
70
30
77
23
64
36
71
29
69
31
#
%
%M
%F
% 18–29
% 30–49
[Among ever had sex}
(n=252)
(n=95) (n=157) (n=79)
(n=173)
Yes
21
17
27
6
18
15
No
106
83
73
94
82
85
Relationship between sex in the past year is significant with sex and age (p<.001 and p<.001, respectively);
relationship between number of partners and number of partners and sex with 2 partners at the same time with
gender was significant (p<.001 and p<.01, respectively)
Survey findings indicate that PLHIV remain exposed to the risk of unprotected sex, as demonstrated by
reported attitudes toward and practices with HIV-infected partners (Table 17). A majority of participants
(57%) preferred a sexual partner who was also HIV positive, while 17% reported that the HIV status of
their sexual partner did not matter. This applied more to females than males (19% vs. 14%, respectively).
On the other hand, about a quarter of participants—26%—preferred a sexual partner who was HIV
negative. Around one in six (17%) reported that they had had sex with a person they believed or knew was
HIV negative in the past three months. Within this latter group, about four out of five (84%) had used
condoms.
One in five (20%) did not know the HIV status of someone with whom they had sex in the past three
months—more females than males (26% vs. 13%, respectively). The study also found that three out of five
participants (61%) reported they had sex with a person they believed or knew was HIV positive in the past
three months, with more males than females reporting this experience (69% vs. 54%, respectively). Again,
about four out of five (85%) of participants in this category reported they had used condoms to prevent
HIV transmission. Some (11%) did not perceive unprotected sex with another PLHIV to be a problem, since
they believed that being on ART or having low viral load reduced the risks of HIV transmission.
Overall, four out of five participants (84%) said their sexual behavior had changed since learning they were
HIV positive. Around half (47%) reported more consistent condom use, while about a third (34%) said they
had reduced the number of their sexual partners. Only about a quarter said they avoided having
concurrent sexual partners (29%) or chose partners who they knew were HIV positive (25%). Notably, one
in six (16%) reported abstinence as a change in their sexual behavior.
Table 17. HIV-Prevention Practices, by Gender and Age
#
When it comes to a sexual partner, do you prefer that…
Partner is HIV positive
Partner is HIV negative
Doesn’t matter
In the past three months, have you had sex with a person you
believe or know is HIV negative?
Yes
No
Not sure
Of yes, what do you normally do to prevent HIV transmission
with an HIV negative partner?
We use condoms
33
%
%M
%F
% 18–29
% 30–49
(n=180)
(n=80) (n=180)
103 57
54
54
47 26
33
22
30 17
14
24
(n-69)
55
25
20
(n=111)
59
27
14
(n=127)
(n=62) (n=65)
22 17
18
14
80 63
69
50
25 20
13
36
(n=49)
12
61
27
(n=78)
21
64
15
(n=25)
(n=12) (n=13)
21 84
83
85
(n=7)
71
(n=18)
89
#
%
%M
%F
% 18–29
% 30–49
Unprotected sex is not a problem because I am on ART/have
low viral load
4 18
18
18
33
13
Other type of prevention method (oral sex, non-penetrative
sex, gentle sex w/out condoms)
5 20
16
23
14
22
We did nothing
1 4
8
0
14
0
In the past three months, have you had sex with a person you
believe or know is HIV positive?**
(n=127)
(n=62) (n=65)
(n=49)
(n=78)
Yes
78 61
69
54
55
65
No
30 24
24
23
22
24
Not sure
19 15
6
23
22
10
Of yes, what do you normally do to prevent HIV transmission
with an HIV positive partner?
(n=86)
(n=46) (n=40)
(n=30)
(n=56)
We use condoms**
83 85
80
67
93
83
Unprotected sex is not a problem because I am on ART/have
low viral load
16 11
23
7
13
16
Unprotected sex I not a problem because my partner is HIV +
7 7
8
13
2
7
Other protective method (oral sex, non-penetrative sex,
gentle sex without condoms, other)
9 11
12
11
30
2
Would you say that your sexual behavior has changed since
you found out you were HIV positive?
(n=250)
(n=94) (n=156)
(n=77)
(n=173)
Yes
210 84
83
85
83
84
No
33 13
13
14
13
13
Not sure
9 3
4
2
4
2
If yes, in what ways…
(n=210)
(n=78) (n=132)
(N=64)
(n=146)
I always use condoms**
99 47
59
40
44
49
I have fewer sexual partners**
72 34
49
26
36
34
I avoid having concurrent or overlapping partners
61 29
35
26
27
30
I know the HIV status of my sexual partners
45 21
22
21
25
20
I only have HIV-positive partners
53 25
21
28
33
22
I take ART to reduce my viral load
42 20
15
23
20
20
I abstain from sex
33 16
8
20
9
18
I have non-penetrative sex
18 9
3
12
6
10
Other
6 3
1
4
5
2
**Relationship between had sex in last three months with HIV-positive partner and gender was significant (p<.05);
relationship between use of condoms with HIV-positive partner and age was significant (p<.01); relationship between
change of behavior—always used condoms and had fewer partners and gender was significant (p<.01)
Condom use was the main contraceptive method for a majority of participants (63%), reported by more
males than females (79% vs. 51%, respectively). Other methods included contraceptive injections and pills.
However, more than a quarter of participants (28%) reported that they were not using any method to
prevent pregnancy. Notably, this was reported by more females than males (40% vs. 14%, respectively)
and by twice as many females ages 18–29 than females ages 30–49 (54% vs. 27%, respectively).
34
Table 18. Contraceptive Method Used, by Gender and Age
#
%
(n=180)
%M
(n=79)
%F
(n=101)
%M
18–29
(n=23)
%M
30–49
(n=56)
%F
18–29
(n=46)
%F
30–49
(n=55)
What method do you use to prevent
pregnancy with your partner?
No method**
51 28
14
40
35
5
54
I am sterilized/had vasectomy
9
5
8
3
0
11
0
Condoms**
114 63
79
51
65
84
44
Safe period/rhythm method
10
6
5
6
4
5
4
Contraceptive pills
14
8
8
8
4
9
4
Contraceptive injection
23 13
14
12
17
13
7
Other (IUD, implant)
14
0
8
8
13
6
7
**Relationship between use of no contraceptive method and use of condoms and gender was significant (p<.001)
27
6
58
7
11
16
9
4.7.1 Discordancy between sexual partners
FGD participants were aware of discordant partners, and some indicated that they themselves were in
such relationships. This discovery was confusing, requiring couples to confront and deal with the issue of
HIV prevention:
Yes, there is one family where wife and husband went together to the clinic, and they
informed them that the wife was HIV positive and the man was not. At first it
disorganized them, but later on they decided to stay together and started to use
condoms for prevention (Mbale, FGD, PMTCT).
While this example illustrates a proactive and practical response, discordancy was reported as a disruptive
factor for many couples, contributing to conflict and often to separation. A central point of departure was
blame directed toward the HIV-positive partner:
The problem they get is that most of the time they keep fighting and quarrelling,
pointing fingers at the one who tested positive and the root cause of the infection
(Mbale, FGD, PMTCT).
HIV-negative partners were often motivated to end the relationship:
The first thing is that there is divorce. If the woman is the one who is infected, a man
will chase her away from the home. If the man is the one who is infected, automatically
the woman packs her bags and she goes to her parent’s home (Kasese, FGD, Males 18–
25)
In some instances, severe violence, including murder, resulted:
A friend of mine was killed. The husband accused her of cheating because she was a
virgin when they got married. So he kept asking how she got HIV (Rakai, FGD, Females
18–25).
In other instances, discordancy was used as a rationale for infidelity:
35
When the man realizes that a woman is HIV positive, he can neglect her and go out to
get others because he has realized that she’s HIV positive (Mbale, FGD, Males 18–25).
Family members who found out about discordancy were said to be scornful of the HIV-positive partner,
and children said to suffer the consequences of family breakups triggered by diagnoses of discordancy.
For discordant couples who elected to stay together, discordancy remained a point of conflict, with blame
directed to the HIV-positive partner and the need to modify sexual choices and pay attention to HIV
prevention. The strategies adopted could contribute to relationship breakdown:
The problems with discordance arise when it’s time for sex. The woman may know that
the husband is HIV negative, but insists on unprotected sex. But if the woman is HIV
negative, she refuses to have sex with her husband who is HIV positive [and] she totally
does not want [it]. For the woman who decides to stay with an HIV-positive husband,
she will get another partner outside marriage to have sex. This has led to a lot of
marriage breakages (Mbale, FGD, Males 26–49).
Choosing not to have any sex was also mentioned as a strategy, though this was often a difficult choice:
I have noticed that the problem we get when a man is infected and the woman is not
sick, very often the man doesn’t want to have sex with his wife. The woman also does
not want to have sex with her husband after realizing that the husband is HIV positive
(Kasese, FGD, Males 18–25).
Sometimes the discordant couple may reach the bedroom, and one may decide that he
won’t have sexual relations and they don’t relate freely like they are supposed to, even
when she asks to be together with her husband (Mbale, FGD, Females 26–49).
[A couple I know] have been able to survive due to preventive measures, such as having
sex once a month and using condoms. This has made other discordant couples to be
strong and encouraged them to face this situation too (Rakai, FGD, 18–25).
Some discordant couples were keen to reconcile and commit to staying together, using strategies such as
consistent condom use and regular HIV testing of the negative partner. It was noted, however, that these
strategies were not easy to sustain. At the same time, the desire to have children was strong among some
couples, and many were not clear on options available. This was a particularly strong desire among young
discordant couples who did not have any children.
Most participants were unclear how discordancy came about for established couples. One surmise was
that the negative status of one partner could be attributed to his or her blood being ‘stronger’ and less
vulnerable to HIV. Another view was that discordancy was a product of God’s will:
Discordance is God’s plan because sometimes they stay together, even for a long time,
but they produce children, especially when it is a woman who is negative and the
husband positive. The children are negative like the mother… so it’s also God’s
arrangement (Mbale, FGD, Females 26–49).
36
4.8
Fertility Desires and Experience of PMTCT Services
About one in five survey participants (20 %) had lost a child to AIDS. Nearly a third (31%) expressed a
desire to have children in future, slightly more males than females (44% vs. 24%, respectively). Further,
among participants who desired to have more children, about seven out of ten (72%) wished to do so
within the next two years.
Table 19. Any Children Died of AIDS and Desire for Children, by Gender and Age
#
%
(n=252)
Any children died of AIDS?
Yes
No
Don’t know
Want children in future?
Yes
No
Don’t know/ Not sure/not
applicable/cannot have
children
Of yes, when do you want
more children?
Within the next two years
Three to four years time
Five years and above
%M
(n=95)
%F
(n=157)
% M 18–29
(n=25)
% M 30–49
(n=70)
% F 18–29
(n=54)
% F 30–49
(n=103)
50
183
6
21
77
3
24
72
3
19
79
2
5
86
10
30
68
1
19
81
0
19
78
3
79
150
31
60
44
47
24
67
72
20
34
57
39
44
16
79
23
9
8
9
8
9
17
6
57
10
12
72
13
15
71
17
12
73
8
19
56
28
17
83
8
8
76
10
14
69
6
25
Slightly more than a third of the women surveyed (34%) had given birth since being diagnosed as HIV
positive. Of these, almost twice as many were ages 18–29, compared to those ages 30–49 (44% vs. 28%,
respectively). Notably, most of the women who had given birth (87%) had taken steps to prevent HIV
transmission to their newborn. Additionally, four out of five (61%) reported that they had been supported
by the father of the child in taking these steps.
Table 20. Whether Gave Birth Since Knowing Status and Experience With PMTCT Services, by Age
#
%
(n=157)
Since knowing your HIV status, have you had a baby?
Yes
No
Of yes, did you take steps to prevent HIV transmission to your baby?
Yes
No
Of yes, did you have support from the father of your baby to prevent HIV
transmission to the child?
Yes
No
37
% 18–29
(n=54)
% 30–49
(n=103)
53
104
34
66
44
56
28
72
46
7
87
13
88
13
86
14
28
18
61
39
57
43
64
36
4.8.1 Prevention of mother-to-child transmission
General awareness of PMTCT was high, and pregnant women living with HIV and prospective mothers
were well informed by health workers on issues of HIV prevention, including on the risks of HIV
transmission from mother-to-child. Some participants felt that they were discouraged from having
children, and this was more likely to be emphasized if the couple already had children. Health workers
reportedly encouraged frequent antenatal check-ups, discouraged home, provided information on
breastfeeding, and emphasized pre-conception counseling:
Also, we are informed that we should go to the health facility [to] talk to the health
worker, then she will counsel you on whether to get the child, and that when you get
pregnant you should get tested, continue to take the ARVs test for your CD4 count, and
when you are about to go into labor, there is a drug you are given to swallow before
delivery, but I don’t know the name of the drug (Kitgum FGD Females 18–25).
4.9
Alcohol and Substance Abuse
Alcohol use appeared to be low among participants: a minority (17%) said they ever drank alcohol, about
twice as many males as females (24% vs. 13%, respectively). Overall, less than a third of participants who
drank alcohol did so once a week (26%) and more than a third (35%) drank alcohol a few times a week.
Among females who drank alcohol a few times a week, 57% were ages 18–29 and 23% were ages 30–49.
Among all participants who drank alcohol, about three out of five (63%) had ever been drunk in the past
month.
Table 21. Alcohol Use, by Gender and Age
#
%
%M
%F
% M 18–29
(n=95) (n=157)
(n=25)
% M 30–49
(n=70)
Do you drink alcohol?**
Yes
43 17
24
13
32
No
209 83
76
87
68
Of yes, how often do you drink?
Daily
6 14
17
10
13
A few time a week
15 35
35
35
38
Once a week
11 26
26
25
25
Less than once a week or very
seldom
11 26
22
30
25
Of yes, have you been drunk in
the past month?
Yes
27 63
74
50
75
No
16 37
26
50
25
**Relationship between alcohol consumption and gender was significant (p<.05)
4.10
% F 18–29
(n=54)
% F 30–49
(n=103)
21
79
13
87
13
87
20
33
27
29
57
14
0
23
31
20
0
46
73
27
57
43
46
54
Community and Organizational Responses to Addressing PHDP
The study explored responses to addressing PHDP at community levels: the scope, benefits, and
challenges of PLHIV support groups and associations, as well as voluntarism and social life among PLHIV.
38
In addition, responses at more formal, organizational levels were examined: the scope of PHDP services
available and challenges, gaps, and opportunities for service providers.
4.10.1 PLHIV support groups and associations
Only three of ten survey participants (30%) were members of a PLHIV support group (Table 22), with
much lower proportions among those ages 18–29 (15%) and even lower among females in that age
category (13%). Among participants who reported belonging to a support group, the duration of
membership ranged from less than one year (24%) to more than five years (28%). Among those ages 18–
29 , three-quarters (75%) had been members for up to one year.
Similarly, only about a third of participants (32%) reported they were members of an association or
network for PLHIV. Membership was much lower among those ages 18–29 than those 30–49 (22% vs. 36%,
respectively). Among association or network members, 31% had been members for up to one year and
28% had been members for five years or more.
Among participants who had joined support groups or associations, 60%) belonged to one and 40%
belonged to two or more. Among females ages 30–49, 46% belonged to two or more.
Table 22. Membership in PLHIV Support Groups and Associations, by Gender and Age
#
% %M
%F
(n=252)
(n=95) (n=157)
Member of a
support group
Yes
No
Of yes, duration of
membership**
0–1 yr
2-3 yrs
4-5 yrs
>5 years
Member of
association and/or
network
Yes
No
Of yes, duration of
membership**
0–1 yr
2-3 yrs
4-5 yrs
>5 years
Of support
group/association
members, how
many belonged to?
1
%M
18–29
(n=25)
%M
30–49
(n=70)
% F 18–29
(n=54)
%F
30–49
(n=103)
% 18–29
(n=79)
% 30–49
(n=173)
76
176
30
70
32
68
29
71
20
80
36
64
13
87
38
62
15
85
37
63
18
20
17
21
24
26
22
28
30
30
17
23
20
24
26
30
80
20
0
0
20
32
20
28
71
14
0
14
10
26
31
33
75
17
0
8
14
28
27
31
80
172
32
68
28
72
34
66
28
72
29
71
19
81
42
58
22
78
36
64
25
17
16
22
31
21
20
28
44
22
19
15
25
21
21
34
57
29
0
14
40
20
25
15
60
10
10
20
16
23
23
37
59
18
6
18
24
22
24
30
63
60
68
56
89
61
77
51
82
54
39
#
% %M
%F
(n=252)
(n=95) (n=157)
%M
%M
% F 18–29
%F
% 18–29 % 30–49
18–29
30–49
(n=54)
30–49
(n=79)
(n=173)
(n=25)
(n=70)
(n=103)
2
33 31
24
35
11
29
15
40
14
36
3+
13
9
8
9
0
11
8
19
5
10
**Relationships between time in a support group and time in an association and age were significant (p<.001)
Several benefits of membership in support groups or associations were reported (Table 23), including.
increased knowledge (87%), emotional support (73%), increased adherence to treatment (65 %), and
increased access to condoms (50%). Managing discordancy and support for PMTCT were not high on the
list of the benefits identified. Generally, participants ages 30–49 were more likely to identify more
benefits from membership than those ages 18–29.
Table 23. Benefits of Membership in PLHIV Support Groups and Associations, by Gender and Age
#
%
(n=234)
%M
%F
%M
(n=87) (n=147) 18–29
(n=25)
159 87
80
91
70
104 50
60
44
60
110 65
68
64
60
%M
30–49
(n=62)
83
60
70
%F
18–29
(n=52)
77
39
69
%F
30–49
(n=95)
95
45
63
%
18–29
(n=77)
74
48
65
%
30–49
(n=157)
91
50
65
Increased knowledge
Access to condoms
Adherence to
treatment
Support for PMTCT
79 43
33
49
10
40
62
46
39
44
Managing discordancy
50 27
18
32
0
23
23
34
13
30
Managing disclosure
87 50
40
55
30
43
62
54
48
50
Volunteering
59 38
25
45
10
30
23
50
17
43
Palliative care**
59 40
35
44
10
43
39
45
26
44
Emotional support
138 73
53
84
30
60
62
89
48
79
Faith, prayer, religious
100 56
48
61
20
57
31
68
26
64
support**
**relationships between the benefits of palliative care and of faith, prayer, religious support and age were significant
(p<.01)
4.10.2 Opportunities and challenges for support groups and associations
Qualitative data gathered by the study outlined benefits for members of associations and support groups
similar to those noted in the quantitative survey. Groups of this kind provided opportunities for PLHIV to
talk about HIV; increase their knowledge; counsel and advise each other on positive living, nutrition,
accessing and adhering to ART; child bearing and rearing; and aspects of HIV prevention, including the
risks of excessive alcohol consumption and multiple partnerships.
Support for disclosure was another important activity, including disclosing to partners or family members,
part and parcel of the health and prevention advice provided by support groups:
Our club teaches us to disclose to our relatives because we need their assistance in this
struggle. They also advise us to use condoms and, in case of any problem, we should
always seek medical advice (Rakai FGD, Males 18–25).
40
Support group members were actively involved in carrying out home visits, and they offered counseling
and guidance to other PLHIV on all aspects of living with the disease. Members of support groups also
provided referrals and acted as links between the community and organizations providing HIV and AIDS
services.
Testimonials by PLHIV members were often used to initiate discussions about HIV and AIDS:
Through these groups, PLHIV go out in the community and give testimonies relating to
their HIV status. So they create more awareness about HIV. Support groups also help
PLHIV to interact with each other, encourage each other to adhere to drugs, and
support each other in every way possible (Kasese FGD, Females 18–25).
Some groups focused on income-generating activities, following a small-business format. Others were
savings and lending , supporting the pooling of resources for times of need and facilitating borrowing at
low interest rates and reasonable repayment. Monies saved were passed on to one’s family in the event
of death:
It helps a lot, especially when you lose a relative. Members come together and
contribute even when [you die, but] your savings are still there. They give it [money] to
your family members (Kasese, FGD, Female 26–49).
A robust savings and loans association in Rakai was cited. It offered seminars on savings, combined PLHIV
and non-PLHIV in its leadership, and served the interests of PLHIV as well as ordinary community
members.
Interviews with service providers highlighted several benefit s of PLHIV support groups, such as allowing
PLHIV to realize that they were not alone in their situation, providing opportunities for mutual support,
and creating awareness about shared challenges. In the forums that support groups provided, members
shared problems, concerns, and experiences, brainstormed solutions, gave each other advice, and formed
friendships. PLHIV also learned from peers coping with similar circumstances.
Support groups and associations were also often engaged in broader community-level outreach
communication on HIV, including HIV prevention, and often used music, dance, and drama. Focal topics
included promotion of HIV counseling and testing, HIV prevention, and condom use, the risks of alcohol
and drug abuse, and the importance of ART uptake and adherence. Activities extended from local
communities into sub-counties, often supported by local NGOs.
Groups for youth emphasized condom promotion and distribution and encouraged healthy social
activities as an alternative to being idle and seeking out sexual encounters:
[Groups] move from one village to another to meet the our fellow youth. We also
distribute condoms and share different things, ranging from prevention to positive
health among other things. This in a way keeps the youth occupied instead of looking
for whom to get intimate with around the village, thus reducing transmission of the
virus (Rakai, FGD, Males 18–25).
Developing and maintaining support groups and associations was not without challenges. One of the most
important was resource constraints, which hindered activities such as transporting members to undertake
41
community outreach or support other PLHIV. Funds were also required in order to provide food, clothing,
and other basic needs for members and support home visits for PLHIV and those critically ill
Our main challenge is finances, in terms of transport costs and providing material
things like food, clothes, and books for those families that have children. The group has
approximately 800 members, both male and female (Rakai, FGD, Males 18–25).
We have a problem of transport to go to some of these organizations and even to our
associations, because they are situated in town centers and can be very far if we
wanted to call upon them to come to our communities or make follow ups (Kitgum, FGD,
Females 18–25).
Children living with HIV who lacked food or money for school fees were particularly vulnerable. In some
instances, support group members made contributions out of their own meager resources:
Food is also a problem, and yet we are farmers, but the little money we get is not
enough to buy whatever we need (Kitgum, FGD, Females 18–25).
PLHIV also noted difficulties in maintaining a balance between their support group activities and caring for
their own families.
Governance of support groups was noted to be challenging, particularly among those involved in
monetary activities. Difficulties in recovering loan repayment from members was reported, along with
insufficient funds to make the loans expected by members. Other problems highlighted included poor
leadership and incidents of financial and ethical misconduct (such as disclosure of confidential
information). Support from the health facilities to which the groups and associations were linked was said
to be limited and below expectations.
4.10.3 Social life related to HIV and AIDS and voluntarism
Survey findings showed that PLHIV were engaged in many aspects of social life related to HIV and AIDS
(Table 24). Attending a funeral of someone who had died of AIDS was the most common form of
engagement, reported by four out of five participants (83%). This trend was similarly high across all four
districts.
A majority of participants (69%) said that people they knew had disclosed to them that they were HIV
positive. Many (69%) reported that they had taken care of someone who was sick with AIDS, and more
than two of five participants (43%) had assisted in caring for a child orphaned by AIDS.
Table 24. Engagement with Volunteerism and HIV-Related Social Activities, by Gender, District, and Age
Activity
#
% %M
%F
% Kas
(n=252)
(n=95) (n=157) (n=60)
Spoke to group in public
127 50
46
53
50
about HIV/AIDS**
Been told by someone
174 69
73
67
58
you know that they are
HIV positive**
42
% Kit
(n=61)
39
% Mb
(n=63)
79
% Rak
(n=68)
34
% 18–29
(n=79)
34
% 30–49
(n=173)
58
66
83
69
61
73
Activity
Attended a funeral of
someone who has died
of AIDS**
Cared for a person who
is sick with AIDS**
Helped care for a child
whose parents have died
of AIDS**
#
% %M
%F
% Kas
(n=252)
(n=95) (n=157) (n=60)
209 83
85
82
82
% Kit
(n=61)
77
% Mb
(n=63)
83
% Rak
(n=68)
90
% 18–29
(n=79)
75
% 30–49
(n=173)
87
169 67
70
66
72
61
78
59
56
72
108 43
45
41
58
48
40
28
23
52
**Relationship between ‘spoke to group in public’ and both age and district was significant (p<.01 and p<.001,
respectively); other significant relationships included the following: between been told someone is HIV positive and
district (p<.05), been to funeral and age (p<.05), cared for a person sick with AIDS and age (p<.01) and cared for child
and district and age (p<.01 and p<.001, respectively)
While majority of survey participants were socially engaged with HIV and AIDS (Table 24), only about a
third (35%) acknowledged they do HIV/AIDS-related work (Table 25)—more females than males (39% vs.
27%, respectively) and more in the group ages 30–49 than those ages 18–29 (42% vs. 19%, respectively).
However, almost three-quarters of participants (74%), including all males ages 18–29, reported that they
volunteered as counselors, and a majority (67%) said they volunteered in HIV and AIDS awareness and
education activities. Other volunteer activities included providing home-based care (43%) and distributing
food parcels (18%). Nearly one of five participants (18%) said their transport was facilitated for doing this
volunteer work, while 9% received a small payment, but not enough to live on.
Table 25. Involvement in Volunteer Work, by Gender and Age
#
(n=252)
%
%M
%F
% 18–29
(n=95) (n=157) (n=79)
% 30–49
(n=173)
Do HIV/AIDS volunteer work **
Yes
87
35
27
39
19
42
No
165
65
73
61
81
58
Of yes, type of work
Home-based care
37
43
35
46
27
46
HIV/AIDS education**
58
67
65
67
40
72
Counseling
64
74
65
77
67
75
Distribute food/other
16
18
27
15
20
18
Other volunteer work
10
12
12
12
13
11
Of yes, are you paid for this work
No
60
70
82
65
63
71
Yes, but only for transport
16
18
7
23
19
18
Yes, but not enough to live on
8
9
7
10
19
7
Yes, an amount that is enough to live on
3
3
4
3
0
4
**Relationship between doing volunteer work and age was significant (p<.001) as well as doing volunteer work in
HIV education and age (p<.05)
43
4.10.4 Opportunities and challenges related to voluntarism among PLHIV
Outreach activities by PLHIV support groups typically included door-to-door visits; home-based voluntary
counseling and testing (VCT); home visits to PLHIV; and community mobilization and community-level
communication about HIV, including music, dance and drama activities. Topics addressed included drug
adherence, awareness of drug distribution days, condom promotion and distribution, nutrition, and
hygiene. Home visits to PLHIV included referrals to service providers:
They also communicate to the health facilities by phoning them and informing them to
pick those who are very sick by sending an ambulance. So they help in making the
referral work easy through writing referral letters and providing feedback to the
communities and the health facilities (Kitgum, FGD, Males 26–49).
Voluntarism incorporating community outreach and support to PLHIV was viewed as having multiple
benefits for the volunteers themselves, including meeting new friends and increasing their own
understanding of living positively:
Volunteering is good because you acquire information you didn’t know. Volunteers
learn from those for whom they volunteer and the PLHIV also learn a lot from them. So
you will get this information, which you can share with the others (Mbale, FGD,
Females 26–49).
Additionally, there was personal gratification in making a difference to the lives of others, gaining skills in
public speaking and community mobilization, and improving one’s self-esteem.
While voluntarism was seen to have valuable outcomes for PLHIV and communities, activities were
constrained by economic and other factors. Access to transportation was a key limitation. Having to walk
long distances without access to food was difficult for PLHIV whose health was compromised:
The problem I see is that volunteers have no transport, for example. My wife is a
volunteer, but the work seems to be tedious and, to make matters worse, she is also on
drugs. She walks long distances visiting other sick people without lunch. She comes
back home feeling very weak and tired (Kitgum, FGD, Males 26–49).
Home visits were not always appreciated by recipients who feared being identified and stigmatized as
PLHIV:
When volunteers visit people’s homes, they are always locked out, because people
don’t want to associate with the volunteers for fear of being labeled HIV positive (Rakai,
FGD, PMTCT).
Volunteers were sometimes suspected of benefitting financially from the plight of others. That volunteer
activities were not remunerated was not well recognized, and recipients and community members who
did not understand this sometimes verbally insulted volunteers.
Organizations that harnessed the work of volunteers were said to actively support them, encouraging and
involving them in income-generating activities and providing training through meetings and seminars.
That PLHIV volunteers had a deep understanding of processes and challenges of living with HIV was
appreciated. This enabled them to reach out effectively to other PLHIV and provide assistance on
44
prevention-related issues, such as disclosure. However, financial support for volunteer activities was
limited. Another challenge faced was ensuring that volunteers did not compromise the confidentiality of
other PLHIV.
4.10.5 Involving PLHIV in prevention activities
FGD participants emphasized the need to involve PLHIV in HIV and AIDS-related activities and in
organizations delivering HIV services. By this they meant that PLHIV should be engaged at various stages
of managing and implementing service delivery, including at planning levels of activities meant to benefit
them. They also said that PLHIV should participate in the day-to-day running of facilities or organizations
providing HIV and AIDS services.
PLHIV who had openly disclosed their status served as role models to motivate disclosure and could play
other important roles in the HIV activities through support groups, associations, volunteer groups and
through organizations. The rationale for their overall involvement was grounded in their ‘inside’
understanding of the context and challenges of living with HIV:
From experience, we know how one feels. We can train people out of experience of
having HIV (Kasese, FGD, Males 18–25).
4.11
PHDP Service Provision
Table 26 shows the scope of PHDP services and activities provided by health facilities and organizations
surveyed. A majority reported they provided HIV testing, counseling, and support for disclosure. Activities
and services included support groups and support for discordant couples and children living with HIV.
Facilities and organizations reported less emphasis on post-test clubs (offered by around half of the
service providers—55%), while male circumcision services were offered by about two of every five
organizations (44%). Female condoms were offered by only a few (11%). There support provided for
treatment of TB and other OIs. Although all facilities and organizations engaged in the survey did not
directly provide ART, all either offered CD4 counts and PMTCT services or referrals to these services.
While all providers provided public space for testimonies by PLHIV, less than half (44%) organized music,
dance, and drama activities, and a third (33%) facilitated the development of PLHIV memory books or
boxes. Only a few (11%) included telephone help lines among their services.
Table 26. Percentage of Facilities and Organizations Providing PHDP-Related Services
HIV testing and counseling for individuals
HIV testing and counseling for couples
Counseling/support for discordant couples
Counseling/support for safe disclosure
Support groups for PLHIV
Post-test clubs for PLHIV and/or non-PLHIV
Counseling/support for children of PLHIV
HIV transmission risk-reduction counseling
Male circumcision
% providing the
% providing
specific service assessments or referrals
89
11
89
11
89
11
100
0
89
0
56
11
100
0
100
0
44
22
45
% not providing
service or referrals
0
0
0
0
11
33
0
0
33
Contraception/family planning
Male condoms
Female condoms
TB treatment
Other OI treatment
STI treatment
ART
CD4 count
PMTCT/eMTCT
Music, dance, drama, or other entertainment
education
Testimonies of PLHIV
Memory books/boxes
Telephone helpline
% providing the
% providing
specific service assessments or referrals
75
13
88
13
11
22
78
22
78
22
78
22
67
33
44
56
78
22
44
0
100
33
11
% not providing
service or referrals
13
0
67
0
0
0
0
0
0
56
0
11
0
0
56
89
Table 27 lists trainings the service providers offered to staff and volunteers in the past year. The most
common focal areas were ART provision (86%), prevention of HIV transmission among PLHIV (77%) , and
PMTCT services (77%). More than half of the organizations had trained their staff in dealing with
discordant couples, relationship counseling, and management of OIs. Only about a quarter (27%) reported
that they had trained their staff in music, dance, drama, or other entertainment education as a
component of PHDP. Less emphasis was placed on topics such as male circumcision and assisting young
people born with HIV.
Table 27. Percentage of Facilities and Organizations Providing Trainings in PHDP Topics
Relationship counseling
Discordant couples
Prevention of HIV transmission among PLHIV
Male circumcision
TB
OIs
ART
PMTCT/eMTCT
Youth born with HIV
Music, dance, drama, entertainment education
% providing training
% not providing training
54.5
63.6
77.3
50
72.7
63.6
85.7
77.3
54.5
27.3
45.5
36.4
22.7
50
27.3
36.4
14.3
22.7
45.5
72.7
All service providers surveyed had leaflets, manuals, guidelines, and other communication materials that
supported PHDP-related topics (Table 28 ). While a large proportion said they had manuals or guidelines
on PMTCT and VCT, less than half had manuals or guidelines on disclosure or HIV-positive couples or
informational materials on STIs. Furthermore, less than a third had materials that addressed discordancy,
alcohol and drug abuse, home-based care, or mental health. Materials related to sex work were largely
absent, and there were no materials related to MSM.
46
Table 28. Percentage of Facilities and Organizations with Materials on PHDP Topics
% with materials
Positive prevention PwP/PHDP manual/guidelines
Male circumcision (manual/guidelines)
VCT (manual/guidelines)
VCT support materials (leaflets, etc.)
Discordant couples (manual/guidelines)
Discordant couples (leaflets, etc.)
Disclosure of HIV status (manual/guidelines)
HIV-positive couples (manual/guidelines)
HIV-positive couples (leaflets etc.)
PMTCT (manual/guidelines)
PMTCT (leaflets, etc.)
ART (manual/guidelines)
ART (leaflets, etc.)
STI informational materials
TB informational materials
Alcohol abuse materials
Drug abuse materials
Home-based care materials
Mental health materials
Legal rights materials
Materials for HIV-positive children
Materials for MSM
Materials for sex workers
% without materials
55
59
77
59
27
23
46
36
23
82
59
64
50
41
64
27
27
27
9
41
55
0
14
46
41
23
36
73
77
55
64
77
18
36
36
50
59
32
73
73
68
91
59
46
100
86
Organizations providing HIV/AIDS services involved PLHIV in community mobilization and a variety of
support activities, including in provision of ART and counseling, including on adherence, disclosure, and
PMTCT, and in organizational management (Table 29).
Overall, PLHIV participated in these activities as volunteers in proportions ranging from 36% to 77%, most
commonly in community mobilization, education, and sensitization. Few organizations employed PLHIV as
staff members or managers or enrolled them in an advisory capacity.
Table 29. PLHIV Involvement in Organizations Providing HIV and AIDS Services
Organization management
HCT/VCT provision
Counseling
Disclosure and discordance
ART distribution and adherence
PMTCT counseling, referral, and support
Peer education
% managers
23
9
9
9
5
5
–
47
% staff members
9
14
32
23
27
18
18
% advisors
14
14
14
18
5
5
9
% volunteers
36
36
64
59
55
50
68
PLHIV support group facilitation
Community mobilization, education, and
sensitization
% managers
14
9
% staff members % advisors
14
5
14
14
% volunteers
36
77
4.11.1 Challenges, gaps, and opportunities for PHDP services, provider training, and materials
Nearly all service providers interviewed mentioned inadequate funding, declines in funding, or resource
limitations as factors that compromised their capacity in relation to PHDP and assisting PLHIV. They
conveyed a strong sense of donor dependency, while noting a lack of adequate funding that affected the
provision of key services, such as home-based care, nutrition support, and the formation and
operationalization of PLHIV support groups.
Service providers noted the limited follow-up and home-visits for PLHIV, especially those on ART; poor
follow-up of discordant couples, lack of nutritional support and income-generating support for PLHIV, and
limited capacity-building initiatives and/or opportunities for staff and volunteers. In general, respondents
acknowledged limited involvement of PLHIV in these activities. While music, dance, and drama activities
involving PLHIV were acknowledged as a key approach, these were not well funded or made a priority.
Faced with financial limitations, some organizations reportedly restricted their services to particular
geographical areas at the expense of others, especially those hard to reach. Service provision efficiency
also compromised by limited collaboration and coordination between organizations providing similar
services, especially those in rural areas.
Persistent stigma against PLHIV that served as a barrier to HIV prevention work was noted. Another
observation as that the sexual behaviors of some PLHIV were not sufficiently exemplary of HIV for
prevention—for example, those known to have multiple partners. Without economic support, some PLHIV
often were unable to support their families and cover costs associated with ART treatment, such as
transport to and from facilities. This potentially increased their risk of engagement in sex work or other
risky behaviors and undermined HIV prevention efforts.
The survey highlighted human resource as well as financial constraints. Organizations had few qualified
staff in place and limited access to external skills such visiting doctors. Where the staff was complemented
by volunteers, many lacked the necessary skills and training and capacity-building opportunities were not
available.
Concerns were also raised regarding poor record-keeping and inadequate documentation of good
practices and success stories. A lack of computer equipment and internet services was also cited, which
limited the capacity of service providers to obtain updates. Some service providers had only one or no
computer for data storage.
4.11.2 Monitoring and evaluation
Nearly all service providers said they had some mechanism in place for monitoring PHDP activities. The
range included routine follow-up and documentation of project activities (e.g., attendance lists during
outreach events); regular performance and review meetings; and compilations of monthly, quarterly, or
other periodic reports. These allowed activities to be tracked and were used for reporting to funders.
Review meetings were also widely used by service providers to monitor their services for PLHIV. In such
48
meetings, project managers and field staff came together to share experiences, identify challenges, and
devise ways to overcome service-delivery bottlenecks.
Some service providers reported that they kept attendance records, condom distribution forms, and field
visitation cards, and they also used referral cards and adherence charts to monitor services provided to
PLHIV. For example, on an adherence chart, every pill taken was ticked and the information was fed into a
monthly report on drug consumption.
Only a few organizations reported having any form of external evaluation. It was noted that the Ministry
of Health monitored and evaluated government facilities to find out how they were being run and ensure
the quality of data collected. Most service providers reported that their programs were evaluated, albeit
internally, and typically conducted as a fiscal accountability measure. Some organizations hired external
consultants to evaluate their work, processes that reportedly involved the community and disseminated
results to key stakeholders. Other evaluations involved quarterly reviews—for government facilities and
for NGOs, CBOs and FBOs—or mid-term and/or end-of-evaluations for programs.
5. Discussion
5.1
Understanding Perceptions of the Concept of PHDP among PLHIV, Service Providers,
and Stakeholders
The concept of PHDP spans a wide range of elements related to living with HIV and relevant to HIV
prevention. Key social-level elements related to PHDP include improvements in knowledge, improved
capacity and support for disclosure and for reinforcing HIV prevention, and support for ART adherence.
While PHDP was an abstract concept to PLHIV involved the study and not readily defined as a whole, all
sub-components were understood as being relevant to the wellbeing of PLHIV.
HIV prevention in the context of living with HIV was understood as being related to preventing new HIV
infections as well as avoiding re-infection of HIV-positive partners. While the value of condoms was
recognized, reducing coital frequency and abstinence were also considered as valid prevention strategies
among some PLHIV. Avoidance of multiple and concurrent partners was also noted.
There was a high level of general awareness of PMTCT, and prospective and pregnant mothers were well
informed on its importance and processes. Among female survey participants, around a third had had a
baby when they knew of their HIV-positive status. Though the vast majority took steps to prevent HIV
transmission to an infant, one in ten did not. (It may be worth noting in this context that nearly a fifth of
the fathers of these children did not provide any support to PMTCT processes, and it appeared that health
workers actively discouraged female PLHIV from having children.) Notwithstanding, around a third of
PLHIV in the survey wanted children in the future and nearly three-quarters wanted a child within the next
two years. Survey findings indicate that more than a quarter of PLHIV and more than half of female PLHIV
ages 18–29 do not use any method to prevent pregnancy.
While PLHIV were generally aware of most elements of PHDP, mostly from radio broadcasts, some aspects
were less likely to have been communicated to them, including the importance of HIV prevention among
49
PLHIV, HIV re-infection, non-discrimination toward PLHIV, promotion of support groups and associations,
availability of telephone help lines, and TB treatment. These topics were also less likely to be discussed by
PLHIV with anyone. Their discussions on PHDP topics were most likely to take place with health workers
and counselors; Only around a third (or less) of study participants discussed topics like these with sexual
partners, family members, friends, or other PLHIV.
Most PLHIV regarded their knowledge of HIV as adequate, and around a quarter felt it was very good.
Fewer PLHIV ages 18–29 were in this category. More than three-quarters said they actively sought
information on HIV and AIDS, and health workers were their main source of information. PLHIV generally
had good access to radio, but television and newspapers were accessed by only a few, internet access was
almost absent, and there was very limited availability of telephone helpline services. There was also
generally good exposure to community-level HIV and AIDS communication—trainings, meetings and
educational events—although this was uneven between the four study sites and less so among PLHIV ages
18–29. A general concern was that communication campaigns on HIV and AIDS proceeded without
sufficient evaluation and were delivered sporadically because of cyclic funding.
5.2
Understanding PLHIV Experiences Relevant to PHDP, Including Sexual Behaviors
5.2.1 Disclosure
Disclosure was noted as a difficult process for PLHIV, including disclosure to children who are HIV positive.
It was acknowledged that living with HIV was experienced differently by men and women, and gender
colors responses to the disease. This had a bearing on openness about one’s HIV-positive status, access to
medication, and how discordancy was dealt with in sexual relationships. Men were said to have greater
problems adjusting to living with HIV and were said to be less likely to disclose to a spouse. They were also
said to be more likely to embark on alcohol abuse and unsafe sex with multiple partners after learning
about their HIV-positive status.
Disclosure to sexual partners was less likely soon after knowing one’s HIV status. Disclosure to a partner
also carried the risk of conflict, relationship breakdown, separation, and divorce, particularly if associated
with discordancy. For those not in relationships, disclosing one’s status was seen as reducing
opportunities to find a partner.
But disclosure of positive HIV status is often necessary for preventing HIV transmission to sexual partners,
particularly long-term and marital partners. Only two-thirds of PLHIV reported that they had disclosed
their HIV status to a sexual partner, with more women disclosing than men (87% vs 54%). While around
two-thirds of PLHIV surveyed had disclosed their HIV status to their parents, other family members, and
friends, fewer had disclosed to their children.
For about one in ten respondents, the consequences of disclosure to a spouse or partner was rejection or
divorce. Women were more likely to experience these consequences, and more than one in ten reported
experiences with violence as a result of their positive HIV status. Rejection by parents and friends was
another consequence, as was job loss and eviction by a landlord.
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5.2.2 Stigma and discrimination
A quarter of the PLHIV in the study reported that they felt ashamed of their HIV status or worked hard to
keep their HIV status a secret; around a fifth worried about discrimination. Such concerns decreased
among PLHIV who had been aware of their HIV status for longer periods.
Some PLHIV reported they had experienced caring, respectful, and non-judgmental healthcare providers,
though others had experienced discrimination, verbal abuse, and perceived favoritism in healthcare
settings. Current mechanisms to report such incidents appear to be limited. The use of suggestion boxes
or conduits for communication with providers was suggested to foster and reinforce non-discrimination.
Some PLHIV also experienced discrimination in family settings, which they felt might be mitigated through
discussions with and counseling of family members.
Fear of discrimination remains a factor in avoiding disclosure in work settings. In school settings, children
living with HIV also feared discrimination from their peers and from school administrators who might
terminate their schooling.
5.2.4 Physical and mental health
The overall situation of PLHIV has improved over the past few years in Uganda, mostly as a result of the
rollout of ART. Survey findings indicate that ART programs are working well in Uganda, and participants in
the qualitative study recognized the transformative value of ART, including reducing viral load and
maintaining health. PLHIV surveyed were generally in good health. Most felt well and able to perform
daily life activities, and only a small proportion (7%) indicated that they were bedridden some of the time.
Respondents who were on ART generally felt as well as those who had not yet started ART, although those
who had been on ART more than five years were most likely to report being bedridden some or most of
the time.
Nearly all survey participants had had their CD4 count checked. Among those on ART, more than eight out
of ten reported 100% adherence with their prescriptions, while a minority said they changed the timing or
quantity of drugs taken. Around one in six in the survey reported that they had ever been diagnosed with
TB, and the vast majority had received treatment.
Notwithstanding, the process of managing ART was not uniformly easy for PLHIV. Around a quarter had
experienced side effects, and more than one in ten had experienced stockouts of drugs. In addition,
around a third experienced problems related to economic aspects of living with HIV, such as being able to
pay for transportation to obtain drugs and ensure they were adequately nourished for the drug regimen.
Another concern expressed was that ART affected one’s libido. PLHIV also expressed reservations about
the sustainability of ART programs, with nearly half saying that they were worried about funds for drug
supplies not being available in future.
Alcohol use among PLHIV surveyed is overall low. Only one in six reported they were alcohol consumers,
and the majority drank once a week or less. However, nearly two-thirds of those who drank reported
having been drunk in the past month.
More than a third of PLHIV surveyed said that they felt sad or depressed in the past month, although the
vast majority of them had received counseling and support to deal with depression. Around one in five
51
PLHIV had experienced the death of a child from AIDS. Although bereavement was not explored in the
qualitative study, it is likely that such parents need bereavement counseling.
Nearly two- thirds of respondents indicated that religion was very important in helping them to live with
HIV, and nearly a third indicated it was moderately important. However, most services or support
approaches that aim to help PLHIV cope with living with HIV do not appear to have incorporated aspects
of religion or spirituality. (It should be noted, however, that religious support was not extensively explored
in this study.)
5.2.3 Sexuality and HIV prevention
Not all PLHIV were in active sexual partnerships. Among those ages 30–49, nearly half of the females and
one in six males said they had not had sex in the past year. This was also true of one in six females ages
18–29. Main reasons for not having had sex included not having a partner, not being interested in sex, and
their HIV-positive status.
The vast majority of PLHIV had made proactive changes to their sexual behavior to prevent HIV
transmission to others after finding their HIV-positive diagnosis. Most changed to consistent condom use,
while around a third had fewer partners and avoided having concurrent sexual partners. Knowing a
partner’s status or only choosing positive partners were mentioned by around a quarter of PLHIV. One in
five mentioned using ART to reduce viral load, and one in six said they abstained from sex.
Among PLHIV who had had sex in the past year, around a quarter reported having had two or more
partners, and one in six reported having had overlapping or concurrent sexual partners. Over half of the
PLHIV surveyed said they preferred that their partner was also HIV positive. The rest said they preferred
an HIV-negative partner or said their partner’s status did not matter to them. This suggests that a
discordant relationship was acceptable to a large proportion of PLHIV.
Around a third of those surveyed said that they had had sex with an HIV-negative partner in the past three
months. While most said they used condoms or took other steps to prevent transmission of HIV, nearly a
third did nothing. Around two-thirds of respondents reported they had had sex with a partner who they
believed was HIV positive, and most used condoms or took other protective steps. Around one in six felt
that ART diminished viral loads to the extent that it was not a problem to have unprotected sex, while a
small proportion did not use protection because their partners were HIV-positive.
HIV discordancy posed particular challenges. It strained relationships and expressions of sexuality and was
a clear point of confusion, conflict, and even violence. Relationship breakup appeared to be a common
outcome, often related to difficulty in understanding how discordancy came about and blame accorded to
the positive partner. Though discordant couples might commit to staying together, this potentially led to
risky strategies, such as one or both seeking partners outside the relationship or failing to take consistent
measures to prevent transmission. Some chose strategies that were difficult to sustain, such as abstinence
and consistent condom use, combined with regular HIV testing of the negative partner.
5.3
Range of Resources, Activities, and Services Available to Support PHDP
5.3.1 Support groups and associations
Support groups and associations of PLHIV provide assistance in a range of important spheres that
strengthen the capacity of PLHIV to deal with a lifelong disease. Benefits of membership include increased
52
knowledge, volunteer opportunities, emotional and spiritual support, access to resources and services,
improved ART adherence, and support for HIV prevention. Support groups and associations can also serve
as conduits for the pooling of financial resources and can provide financial and other support to incomegenerating activities.
However, many such groups do not have sufficient financial resources to conduct activities and need
guidance in financial and administrative management and governance. This is particularly true of groups
that include savings and loans or other financial services as part of their mandate.
Though more than two-thirds of PLHIV surveyed were not members of support groups or associations,
qualitative findings illustrate the importance of support groups in assisting PLHIV with disclosure,
reinforcement of commitment to prevention, and referral to services.
5.3.2 PLHIV volunteerism
PLHIV have important insights into processes of living with HIV and are keen to be involved in all spheres
of the response directed toward PLHIV, including in group-based approaches to conceptualizing, planning,
and conducting activities and in their day-to-day running and management.
More than a third of PLHIV are involved in volunteer work: broader community-based activities that
promote HIV prevention and non-discrimination toward PLHIV. This often entails promoting HIV testing in
the general community and providing psychological, physical, and material support to other PLHIV.
Improved knowledge, psychological affirmation from helping others, and improved self-esteem were
listed as the benefits of PLHIV involved in volunteer activities.
Most volunteers receive no remuneration or small stipends to support transportation or other expenses.
Their activities—and the sustainability of such activities—are compromised by limited funding .
5.3.3 Organizational services supporting PHDP
Organizations providing services to PLHIV address the broad range of themes relevant to PHDP. Aspects of
key knowledge are being addressed to some extent, and organizations have generally emphasized topicrelevant training, support groups, and—to some extent—involvement of PLHIV in educational activities
and outreach.
However, a limited range of communication materials appears to be available for guiding or supporting
PHDP topics. Fewer materials are available in such key topic areas as couple discordancy, HIV-positive
couples, STIs, alcohol and drug abuse, mental health, home-based care, and legal rights. Communication
materials for sex workers were minimal, and none were available for MSM.
Organizations providing services to PLHIV are constrained by sporadic funding cycles and resource
limitations. Funding constraints contributed to unequal geographic distribution of services—less for more
remote areas. There was limited collaboration and coordination between organizations, human resources
were constrained, and skills deficiencies were noted. Challenges were also noted in documenting activities
and evaluations are not well resourced, though there is a general emphasis on ongoing monitoring and
reporting.
53
6. Conclusions and Implications for Policy and Programs
This section summarizes major challenges and gaps in addressing PHDP and HIV prevention among PLHIV
and makes recommendations for strengthening PHDP activities at community and organizational levels.
6.1
Social and Behavior Change Communication for PHDP
PLHIV have good general knowledge of HIV and AIDS, derived from mass media communication, health
workers and counselors, and interactions with other PLHIV, notably via membership of support groups
and associations. There were gaps in small-media communication resources such as leaflets for some
aspects of PHDP, including support for relationships and group activities among PLHIV, and inadequate
communication resources for sex workers and MSM. In addition, support needs of young PLHIV—
particularly those born with HIV—have not been adequately addressed.
While the integration of PLHIV is a key component of an SBCC strategy, it is also important to involve
leaders at community and other levels. For example, disclosure also needs to be encouraged by political,
religious, and other leaders. These leaders should also give voice to a core principle of HIV prevention
embedded in PHDP: the responsibilities of sexual partners to address HIV-transmission risk and
responsibilities of peers, family members, and communities to validate and support commitments to
minimizing new HIV infections.
In Uganda, testimonies by PLHIV and music, dance, and drama activities are acknowledged as accessible
ways to communicate at community levels, and links to such activities should be fostered by organizations
involved in PHDP.
Recommendations
Separate the subcomponents or themes of PHDP—i.e., positive health, dignity, and prevention—and
frame and address them as they relate to HIV prevention.
Strengthen communication to address young and marginalized PLHIV.
Involve leadership in promoting the various PHDP themes.
Involve PLHIV in communicating PHDP themes, as well as links to support services for both PLHIV and
non-PLHIV through ongoing, interactive and participatory communication activities.
6.2
Support for Disclosure of HIV Status and Promotion of PLHIV Rights
While disclosure of HIV status is widely encouraged and acknowledged as a key element of addressing HIV
prevention in the context of living with HIV, there is insufficient support for disclosure by PLHIV. When
providing this support, the gendered dimensions of disclosure must to be considered and tailored
approaches used. For example, men may need greater support to overcome reticence to disclose, while
women may need greater support that relates to potential experiences of partner violence.
Disclosure of positive HIV status cannot be advocated without considering the context, given accounts in
this study of negative outcomes such as relationship conflict, physical injury, separation, divorce, eviction
from accommodation, job loss, and reduced opportunities for employment.
54
The rights of PLHIV need to be reiterated, as they continue to experience stigmatizing attitudes and
discrimination, including when they access health services. Strategies for reporting stigma and
discrimination were mentioned by participants, and these should be incorporated by service providers.
Recommendations
Provide holistic support to disclosure, taking into account the need to manage various forms of
conflict and disharmony that may ensue.
Promote the rights of PLHIV, particularly with respect to freedom from discrimination from landlords
and in work settings.
Provide links to authorities and services that can assist in redressing rights and legal violations
experienced by PLHIV.
6.3
Sexuality and Relationships of PLHIV
Most PLHIV have made changes to their sexual behavior to address HIV transmission risk, with a primary
strategy being condom use. A fairly high proportion—particularly among women ages 30–49—had not
had sex in the past year. However, multiple sexual partnerships were not uncommon, and a fair
proportion of PLHIV surveyed reported they had concurrent sexual partners.
Some PLHIV also use sero-sorting as a strategy, expressing a preference for an HIV-positive partner. (A
preference for an HIV-negative partner was also expressed.) There was some uncertainty about the risks
of re-infection of a positive partner and the risks of transmission in the context of ART.
Discordancy is also not well understood as a concept, and couples in discordant relationships were
reported to experience confusion and conflict. Such conflict is not readily addressed by assuming that the
best approach is the introduction of ART as a means to reduce the risk of transmission for the uninfected
partner. Instead, it is important to provide initial and ongoing support that addresses discordancy and the
disharmony that it can produce. Whether or not a couple sustains the relationship, they require support;
those who choose to stay together need to consider repertoire of strategies to manage sexual intimacy,
while minimizing the risk of HIV transmission.
A third of the women surveyed had given birth following an HIV-positive diagnosis. Most had taken
measures to prevent mother-to-child transmission, some with little support from the fathers of their
children. More than half of the female PLHIV ages 18–29 in the survey said they were not taking any
measures to prevent pregnancy. A third of all respondents wanted a child in future, though health
workers reportedly discourage PLHIV from having children. A fair proportion of PLHIV had experienced the
loss of a child, and most were parents of three or more children.
Recommendations
Provide support relating to living without sexual partners for long periods.
Provide ongoing guidance to PLHIV on managing the risk of transmission to HIV-negative partners and
re-infection of HIV-positive partners.
55
Provide direct and ongoing support to discordant couples, providing support for those choosing to
stay together as well as recognizing the need to moderate potential conflicts and mitigate the effects
of relationship break-up.
Focus more closely on fertility desires among PLHIV.
Provide psychological and other support for youth living with HIV and for those caring for HIV-positive
infants and children.
Provide support for disclosure to children who are living with HIV, as well as disclosure to children of
parental HIV-positive status.
6.4.
Economic Support Alongside ART Programs
While the wide availability of ART brought important transformative changes in the health of PLHIV in
Uganda, it is clear that ART provision cannot be seen as a stand-alone activity. The poor socio-economic
circumstances of PLHIV continues to challenge adherence, due to food insecurity and lack of
transportation to obtain drug supplies. Income-generating activities that support individuals and families
are needed to overcome these challenges and avoid the option of sex work or other risk-taking activities
to earn money.
Recommendation
Explore the integration of economic support in ART programs to foster economic independence for
PLHIV and their improved health and wellbeing.
6.5.
Support Groups and Associations
Though support groups strengthen the capacity of PLHIV to address their physical, psychological, and
spiritual wellbeing, including many components of PHDP, a relatively low proportion of PLHIV in the study
were members of support groups and associations.
These PLHIV support groups appear to need guidance on improving their management and operations.
They would also benefit from training and support on income-generating activities and savings-and-loan
schemes for their members. These undermine the groups when inadequately managed, and have been
established because of the constrained circumstances of PLHIV.
Recommendations
Provide guidance, training, and support on the management and day-to-day operations of support
groups and of income-generating and income-support activities.
Provide assistance including financial resources and training to support groups and associations with a
view to strengthening broader PHDP response.
6.6.
Voluntarism
A fair proportion of PLHIV are involved in volunteer work that addresses HIV prevention in the general
community. Testimonies and openness about the disease by volunteering PLHIV strengthens the
56
resonance of communication activities. Additionally, PLHIV volunteers provide a range of support and
assistance to other PLHIV. Their contributions to managing the disease maximize the benefits of ART
programs, including reducing stigma, facilitating and supporting disclosure, supporting couples, and
promoting referrals to relevant health services. Voluntarism also has positive benefits for volunteers, as
their psychological wellbeing and self esteem are enhanced by such activities. For the most part, these
activities are unremunerated, and this threatens sustained implementation.
Recommendation
Expand systems of managing and supporting voluntarism among PLHIV, including appropriate
resourcing of training and stipend support to volunteers.
6.7
Monitoring and Evaluation of PHDP
Most organizations monitored and evaluated ongoing activities related to PHDP, but evaluation appears
to be less resourced.
Study findings have expanded understanding of the elements of PHDP and may contribute to the
development or expansion of relevant indicators that are multi-dimensional. These would not only
determine the range of activities conducted and resources provided, but would also reflect the integration
of economic support with ART programming, promotion and assistance to support groups, integration and
resourcing of PLHIV voluntarism, and integration and resourcing of activities that address disclosure and
discordancy and support the sexuality of PLHIV.
Recommendation
Review and refine indicators for PHDP to ensure key elements are adequately addressed and
strengthened over time.
57
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