Experiences of Stigma and Discrimination by People Living With
HIV and AIDS in Nepalgunj Sub-metropolitan City
T.N. Pahadi
Assistant Professor (Health Education), Midwestern University, Bageshwari Multiple Campus,
Kohalpur
Email: pahadi.toya@gmail.com, Mobile: 9858027250
Abstract
This phenomenological study was conducted to explore the manifestations of stigma and
discrimination experienced by people living with HIV and AIDS (PLWHA) in Nepalgunj Submetropolitan City. Seven PLWHAs, selected through snowball sampling, were interviewed
through a semi-structured interview guide. HIV and AIDS-related stigma and discrimination
experienced by PLWHA at individual, family, community, healthcare setting, and workplace
levels were uncovered in this study. Verbal abuse, rejection, isolation, exclusion, avoidance,
denial, participation restrictions are common manifestations in all these levels. Stigma and
discrimination inhibit the PLWHA from disclosing their HIV status, not seeking medical
assistance or advice, and remaining in shadows, passing the infection to others. It is
recommended that Nepal should respond to stigma and discrimination in integrated approaches.
Keywords: HIV and AIDS, Stigma, Discrimination, Manifestations
Introduction
HIV-related stigma and discrimination refer to prejudice, negative attitudes, and abuse
directed at people living with HIV and AIDS (Avert, 2020). “Stigma is typically a social
process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation
those results from experience or reasonable anticipation of an adverse social judgment about a
person or a group (Weiss & Ramakrishna, 2006). Discrimination refers to any form of arbitrary
distinction, exclusion, or restriction affecting a person (Ogden, 2005). Stigma and discrimination
are interrelated, reinforcing and legitimizing each other. HIV and AIDS-related stigma can lead
to discrimination, for example, when people living with HIV are prohibited from traveling, using
healthcare facilities, or seeking employment (Avert, 2020).
In 35 percent of countries with available data, over 50 percent of people report having
discriminatory attitudes towards PLWHA (UNAIDS, 2015). HIV stigma and discrimination
against PLWHA have been demonstrated in various forms, such as negative labeling,
discriminatory behaviors, and negative treatment by healthcare professionals, families, and
communities (Mawar et al. 2005; Dionius et al., 2020). Some people living with HIV and other
key affected populations are shunned by family, peers, and the wider community, while others
face poor treatment in educational and work settings, erosion of their rights, and psychological
damage (Stangl, 2013; Katz, 2013). These all limit access to HIV testing, treatment, and other
HIV services.
HIV/AIDS-related stigmatization manifests itself in a whole variety of levels and
contexts, such as the interpersonal one, the family, the community, the workplace, the health care
sector, media, the housing system, insurances, the educational system, and immigration laws.
Rejection, isolation, avoidance, denial are common manifestations of HIV and AIDS-related
stigma and discrimination. Those most at risk to HIV (key affected populations) continue to face
stigma and discrimination based on their actual or perceived health status, race, socioeconomic
status, age, sex, sexual orientation or gender identity, or other grounds (UNADS, 2017a). HIV
and AIDS have reinforced the stigmatization of already socially rejected groups like men who
have sex with men (MSM), people who inject drugs (PWID), and sex workers (Avert, 2020).
In Nepal PLWHA are found to be stigmatized and face discrimination at all societal
levels; in the community, at health facilities, at the workplace, in media, and most importantly,
within the family (CARE Nepal, 2004). HIV is considered as the outcome of homosexuality,
extra-marital heterosexuality, and drug-using habits that are outside the norms and values in
Nepalese society (Aryal, 2017). The primary finding of the current study revealed that a high
level of overall stigma was prevalent among 46.1 percent of adult PLWHA in Nepal (Subedi,
Timilsina & Tamrakar, 2019). Many scholars working in the area of HIV and AIDS in Nepal
have identified stigma as a serious problem needing more understanding and attention (Beine,
2011). There is not much research and literature about these issues in Nepal. Studies on HIV and
AIDS-related stigma in Nepal are very limited. Thus, I would like to explore the manifestations
or nature of HIV and AIDS-related stigma and discrimination experienced by PLWHA to fulfill
the research gap using a qualitative research approach.
Methods
This Phenomenological research was based on a qualitative approach to explore the lived
experiences of HIV and AIDS-related stigma and discrimination in PLWHA in the Nepalgunj
Sub-metropolitan City of Banke district, Nepal. This research aims to undertake a deeper
understanding of the lived experiences of PLWHA.
Seven PLWHAs were contacted through snowball sampling and interviewed one-to-one
by utilizing a semi-structured interview guide with open-ended questions. Participants were
contacted through PLWHA support organizations and VCT centers and supporting staff. After
informed consent was taken by the participants, they were encouraged to discuss in an openended fashion the key forms of stigma and discrimination that they experienced in their lives.
Their experiences were recorded in a Tab and android mobile phone. Memo writings were used
to make reflective notes during the fieldwork. The audio recordings were translated into Nepali
and transcribed after each interview in the field. Each participant was contacted three times: first
for rapport building, second for the main interview, and third for member checking.
Ethical considerations were maintained strictly. Informed consent was taken before they
participated in the study. Privacy and confidentiality were maintained by not disclosing their
identity and their participation was voluntary. Their dignity and freedom for participation were
respected and it was ensured to not harm them at any cost by this study. Ethical approval was
gained from the Research Cell of Bageshwary Multiple Campus, Kohalpur.
Transcribed responses provided by the participants in the field were coded, categorized,
and thematically analyzed to explore the common essence of participants' lived experiences of
HIV and AIDS-related stigma and discrimination. Prolonged in-depth interviews, thick
description, and member checking techniques were used to ensure the trustworthiness of the
data. Bracketing was used to avoid researcher personal biases during analysis and interpretation
of data.
Results
Stigma and Discrimination in Individual Level
Most of the participants had fear of being discriminated against and were assuming its
negative impacts on their family's reputation. They were also suffered from self-stigma with
feelings of shame and guilt.
Fear of being Discriminated and Anticipation of Negative Impacts on Family
Reputation
Anticipated self-stigma was prevalent among the study participants. Fear of being
discriminated by community members, the intention to maintain the reputation of the family and
to avoid negative impacts on children, and the perception of HIV as a disgrace were the factors
maintaining anticipated stigma among the participants. Such anticipated stigma seemed to
support the decision of some of the participants to hide their HIV status from community
members:
“If other people know about my status, would I be accepted? That is what I am scared of.
HIV is a taboo thing for many people, especially people who know nothing about it. So, I keep it
secret to secure the reputation of my family and avoid negative impacts on my children. I am
afraid if my children are discriminated against due to my HIV status” (R3, 41 years old).
“I think that getting infected with HIV is my fault, and this is my life. So, I am not sure
that other people who I tell them about my HIV status understand and care about me. This
infection is a disgrace for me, and I think I do not need to let other people know about it” (R7, 35
years old).
Feeling Ashamed and Guilty
Perceived self-stigma was also experienced by the participants, which served to maintain
their moral judgment on their HIV status. Several participants reported that they felt ashamed of
their HIV status due to the perceptions that getting infected with HIV was associated with amoral
behaviors and engagement in sex with sex workers:
“I feel ashamed of having this infection because people must think that I have had sex
with sex workers” (R1: 45 years old).
The above perception of HIV/AIDS, which is associated with amoral behaviors and
which seems to lead to negative self-judgment as a ‘bad person, increased guilty feelings and
perceived stigma among the study participants. Several of them commented that they felt guilty
about having the infection and judged themselves as ‘dirty people’ or sinners:
“I feel guilty, why I had done that [having sex with other men], it is forbidden by the
religion. So, I do feel guilty because of that, I am a sinner” (R2, 37 years old).
“I feel guilty because of the stigma from the society that HIV/AIDS is the disease of
people with dirty [amoral] behaviors. So, I am a dirty person, have a lot of sins” (R4, 38 years
old).
“People perceive that HIV/AIDS is the disease of specific groups of people: transgender
women, sex workers, and men who have sex with men. People may think that I belong to one of
these groups” (R5, 46 years old).
Stigma and Discrimination in the Family
The participants were experiencing physical and social restrictions and isolation due to
their HIV status and also feeling the loss of social reputation.
Physical and Social Restrictions, and Isolation
Isolation and separation of personal belongings and eating utensils were examples of
discriminatory behavior or treatment experienced by the participants within their families,
performed by other family members. Several responses of the participants revealed such
experiences:
“When I was physically weak [sick] and admitted to the hospital, I felt like I was left and
isolated by my family members: parents and siblings. I felt isolated because all my personal
belongings, eating utensils, and toiletries were separated from those of other family members”
(R6, 40 years old).
“I would like to play with my sister’s children but family is afraid. People who are HIV
positive are dying of stigma and cannot lead a normal life” (R7, 35 years old).
“Once I was tested positive with HIV, all my family members started to keep distance
from me. It is so obvious: foods and plates are separated. They also avoid touching my clothes
because they think it can be transmitted through sweat” (R1, 45 years old).
“My family members do not want to be close with me, thinking of disease [HIV]
transmission. They do not eat with me at home. My children and wife do not behave well like
before [Before HIV infection]. They do not prefer me to stay at home” (R4, 38 years old).
Fear of Losing Honor and Social Standing
The participants experienced stigma and discrimination that resulted from their family’s
anxiety over fears of contagion and loss of social standing in their community.
When I was diagnosed as HIV positive, my father-in-law told me to stay away from
home and they do not introduce me to guests and never invite me to the ceremonies and
rituals. They did this because they were afraid that they would lose their “Ijjat” (honor or
respect) in the community. I am also worried about the damaging effects of local attitudes
towards our family because of my HIV status. (R2, 37 years old)
Stigma and Discrimination in Community
The participants were also experiencing exclusion and restrictions in their community.
Separation and Loss of Contact with Community Members
Refusing to sit close to PLHIV or moving away from the chairs next to PLWHA, keeping
distance, and fear of having direct physical contact with PLWHA were the instances of
discriminatory behaviors by other community members.
“There are community members who keep their distance from me, this is very obvious.
They moved away from me to other chairs and refused to sit next to me” (R4, 38 years old).
“There are some [community members] who said ‘he has this disease [HIV/AIDS], we
may get infected’. They did not want to sit next to me at all” (R2, 37 years old).
Physical and Social Restrictions
Most of the participants were restricted in their access to community facilities,
participation in religious rites, or working in the village due to villagers’ fears regarding their
contagiousness.
“Some community members restrict me from using public water tap; participating in
religious rites, social ceremonies, and public gatherings; and working collectively in the
community” (R1, 45 Years old).
Some participants reported that their children were stigmatized and suffered from
discriminatory behaviors in school:
“Our children are teased at school and excluded from games and social interaction with
their peers” (R3, 41 Years old).
“Many schools are reluctant to admit my daughter, after they know that I am HIV
positive” (R6, 40 years old).
Stigma and Discrimination in Workplace
Restriction, expulsion, isolation, and humiliation were experienced by the participants in
their workplaces.
Restriction to and Expulsion from Job
Most of the PLWHAs have been hiding their HIV status because they fear not getting or
losing their job if they disclose their status to their employer.
"When my staff knew that I have been diagnosed HIV positive, I was discriminated
against at my school. I was asked to change my career because they said I will contaminate the
staff and students. I tried to challenge it but the headmaster dismissed me" (R3, 41 years old).
I tested positive about 7 years ago. I could not tell my coworkers and employers until last
month. I was so scared they will reject and fire me. My employer usually threatens me to
resign and leave the job immediately. This has given me so much stress. I can’t talk about
it. I have to tell people that I am suffering from Leukaemia so that at least I must be
accepted by society. (R7, 35 years old)
Isolation from coworkers and Humiliation
“My coworkers hesitate to sit beside me, work with me, take food and drink with me, and
make distance with me. They also insult, ridicule and humiliate me recurrently blaming that I am
a bad guy” (R2, 37 years old).
Stigma and Discrimination in Health Care Settings
Although some hospitals have treated PLHIV with proper care, this study revealed that
many PLWHAs had humiliating and embarrassing experiences in health care settings. Not
maintaining confidentiality, neglecting, rejecting, or providing poor quality of treatment are
some examples of major types of discrimination that existed in health care settings (Experience
of Participants).
Humiliation and Embarrassment
“When I visited a VCT [voluntary counseling and testing] clinic, health personnel were
not polite and immediately asked me if I was a sex worker. A doctor asked me outright, ‘Are you
HIV positive?’ This discouraged me from going to the clinics” (R2, 37 years old).
“I am very scared of getting sick. I do not want the doctors to tell me that gradually my
AIDS is developing. And I do not want the doctors to behave badly with me. I have seen how
they treat HIV patients and I do not want to face that” (R5, 46 years old).
Hesitation for Treatment and Care
“We are often refused treatment in hospitals. They tell us ‘we have no bed, we have no
empty bed.’ Another thing that they say is ‘we don’t have facilities for treating HIV.’ They then
refer us to other hospitals” (R1, 45 years old).
The participants reported that they were left untreated for many days in healthcare
facilities (hospitals) while doctors and nurses seemed unwilling to help them during their stay in
the hospitals.
“The first time I was admitted to hospital X [pseudo name], I was left untreated at all, I
hardly breathed at the time, the doctor knew that, but he did not do anything to help me. I did not
receive any medical treatment for five days in the hospital” (R5, 46 years old).
“I once experienced discriminatory treatment in the hospital; the doctor did not want to
be close to me. He seemed very afraid to replace the infusion” (R4, 38 years old).
Unfriendly Behavior and Maltreatment
Discriminatory treatment from healthcare professionals created negative impressions and
perceptions among PLHIV towards healthcare professionals. The participants had the perception
and impression that healthcare professionals seemed to feel disgusted by their health conditions
and treated them in unfriendly ways.
“The nurse who helped me at that time was so unfriendly. I was not comfortable at all. I
felt that the nurse felt disgusted by my condition and did not want to touch me, the infusion was
also thrown in front of me, so rude. There were a few nurses who I knew that they felt disgusted
with HIV patients” (R5, 46 years old).
“I once underwent blood check at a private laboratory clinic, the nurse wore disposable
gloves, but after that, she went back and forth, back and forth a few times to wash her hands. Oh
my God! Should it be like that? It felt like I was disgusting” (R2, 37 years old).
Discussion
Consistent with findings from some previous studies (Ogbuji & Oke, 2010; Bharat, 2011,
Olusola, 2017), this study revealed that stigma and discrimination against participants (PLWHA)
came from their self-evaluations, family members, their local community, workplace, and
healthcare setting. At the individual level participants had experienced fear of being
discriminated against and anticipation of negative impacts on family reputation and felt ashamed
and guilty for their HIV positive status. The participants had experienced physical and social
restrictions, isolation, and fear of losing honor and social standing in the family. At the
community level, they had experienced separation and loss of contact with community members
and physical and social restrictions. Restriction to and expulsion from job, and isolation from
coworkers, and humiliation were experienced by participants in their workplace. They had
experiences of humiliation and embarrassment, hesitation for treatment and care, and unfriendly
behavior and maltreatment by health professionals in the health care setting.
Stigma affects at the most individual level. Much of the discrimination occurs due to self
or internalized stigma which can lead to self- discrimination where an individual feels guilty or
unworthy, leading to low self-esteem, depression, and abnormal behaviors such as self-isolation,
avoidance, and introversion (Baral, et al., 2007). In this study, the majority of PLWHAs were
suffered from felt and self-stigma such as anxiety, guilt, fear, and worthlessness after they were
diagnosed as HIV positive. The majority of their respondents had fear of disclosure and fear of
losing honor and social attending. In this study, many PLWHA felt stigma after being HIV
diagnosed and did not want to disclose their HIV status to their family and society. The finding
of self and anticipated stigma experienced by PLWHA in this study was similar to previous
studies (Baral, et al., 2007; Olusola, 2017; Subedi, Timilsina & Tamrakar, 2019), such as
isolating self from family functions, scaring of disclosing status to family members and friends,
feeling worthless, stopping social functions, excluding self from religious activities, social
functions or gatherings and visiting friends, stop going to the office or to work, feeling ashamed
of accessing medical care, and staying indoor most times.
Similar to the findings of a study carried out by Olusola (2017) and FHI (2004) current
study uncovered that due to fear of infection, families restricted HIV-positive members from
access to certain areas of the house and contact with household members and household artifacts.
These restrictions ranged from touching family members such as children to eating and sitting
together and sharing food and eating utensils. These types of discrimination have served to
segregate the personal and social worlds of PLWHA from other family members. In line with the
study by FHI (2004) in Nepal, the PLWHA in this study were not introduced to guests and not
invited to the ceremonies, because their families were afraid that they would lose their honor or
respect in the community.
Communities were found critical areas of stigma and discrimination for HIV-infected
individuals. In Hagen’s (2007) words, community members’ fears of physical contact with
PLWHAs, due to their supposed contagiousness, create social restrictions for PLWHA. These
beliefs and responses also lead to their social isolation and loss of access to resources (Hagen,
2007). Similar to Hagen’s finding, PLWHA in this study, were often not allowed to participate in
community gatherings. A study conducted by INF in Pokhara-Nepal also supports this finding
that nearly half of the PLWHAs had participation restrictions in some form (Rai, 2008). Similar
to the findings of a study carried out by Olusola (2017) and Hadjipateras (2004), the participants
in this study were insulted, subjected to ridicule, excluded religiously, excluded from school, and
avoided by friends in their community.
This study also explored the stigma and discrimination experienced by PLWHAs in their
workplaces. In the workplace, PLWHAs were suffered from this problem from their co-workers
and employers, such as social isolation and ridicule, or experienced discriminatory practices,
such as termination or refusal of employment. This finding is consistent with the study carried
out by FHI (2006); Jamaican Information Service (2012); GNP+, ILO, and The PLHIV Stigma
Index (2012); and Olusola (2017).
The current study has explored healthcare professionals’ discriminatory attitudes and
behaviors manifested in various forms, such as unwillingness and reluctance to treat or touch
patients with HIV, delay or deny treatment, isolate people living with HIV from other patients,
mandatory HIV testing without consent or appropriate counseling, maltreatment and humiliation,
disclosure of HIV status without consent, and not treated humanely like other patients. This
finding is consistent with FHI (2004), WHO (2008), UNAIDS (2017), and Dionius et al. (2020).
The possible limitation in the study is that the author relied absolutely on the responses of
the participants of the study selected through snowball sampling only from Nepalgunj Submetropolitan City in reporting the various forms of stigma and discrimination. Therefore, the
findings of this study may be less likely to be transferable to other PLWHAs with different
characteristics. However, these findings are useful to inform governments and organizations, or
institutions concerned with HIV, health service providers, and program planners to develop
evidence-based interventions that address the stigma and discrimination facing PLWHA within
families, communities, and healthcare facilities.
Conclusion
This study revealed that PLWHAs, their spouse, and children are extremely stigmatized
and discriminated against in family, community, workplace, and health care settings in Nepal.
Rejections, isolation, restriction, denial in all spheres of social life are common manifestations of
HIV and AIDS-related stigma & discrimination. They lose their self-esteem, social reputation,
employment, and socio-economic support. Stigma and discrimination inhibit people to disclose
their HIV and AIDS status and impact negatively every aspect of the prevention-care-treatment
continuum, as well as greatly increasing the suffering associated with living with HIV. Fear of
discrimination prevents people from utilizing HIV prevention services and prevents people from
seeking treatment for HIV and AIDS or disclosing their status openly. This increases further HIV
transmission and obstacles towards achieving the goal of universal access to HIV prevention and
care. It is recommended that Nepal should respond to stigma and discrimination in integrated
approaches by empowering PLWHAs, working with and mobilizing family and community,
health care settings, reforming laws and legislation, developing workplace policies, and
imparting knowledge through IEC and media.
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