Received: 31 December 2021 Revised: 21 July 2022 Accepted: 21 July 2022

DOI: 10.1111/josi.12547

ORIGINAL ARTICLE

Addressing stigma among persons living with

HIV through the Sujaag project in Pakistan:
A socioecological analysis

Kainat Khurshid1 Tapati Dutta3 Kausar S. Khan1

Syed Aun Haider1 Usman Ali Ahmed1 Hashmat Jatoi2
Mohammad Tahir1 Raja Sarfraz1 Aneeta Pasha1
Myra Khan1 Mehek Ali1

1 Interactive Research and Development,

Abstract
Karachi, Pakistan
HIV-related stigma causes multifaceted problems for
2 Indus
Hospital and Health Network,
Karachi, Pakistan
people with lived experiences. Stigma leads to feelings of
3 PublicHealth Department, Fort Lewis shame and disgrace, and marginalizes persons living with
College, Colorado, USA HIV and their caregivers by marring social relationships
and impacting health outcomes. In April 2019 Ratodero
Correspondence
Mehek Ali at Interactive Research and Tehsil in Larkana District, Pakistan, had an HIV out-
Development, Woodcraft Building, Plot break, where evidence highlighted increase in infection
3&3-A, Sector 47, Korangi Creek Road,
rates among non-high-risk populations, including chil-
Karachi, Pakistan.
Email: mehek.ali@ird.global dren. In the aftermath of this outbreak, affected families
faced loss of communal ties in part due to stigmatiz-
Funding information
Gilead Sciences, Grant/Award Number:
ing attitudes. The Sujaag Project employed Participatory
08074 Action Research strategies to address HIV-based stigma
and enhance acceptance of people living with HIV in the
region. By utilizing a qualitative methodology, this study
reports manifestations in changes in HIV stigma at four lay-
ers of the Socioecological Model: Individual, Interpersonal,
Community and Social, and Macro levels. Findings from
focus group discussions and reflective narrative reports
gathered at varied points of the project cycle create an
understanding of how HIV-related stigma affects wellbeing

© 2022 The Society for the Psychological Study of Social Issues.

J Soc Issues 2022;1–19. wileyonlinelibrary.com/journal/josi 1

2 KHURSHID et al

and how a collaborative and participatory approach aids in

re-establishment of social relationships. This study informs
contextual methodologies for incorporating lived experi-
ences of HIV in program design, service delivery, and
policy influence, and can be adapted for other stigmatized
illnesses in similar contexts.

ADDRESSING STIGMA AMONG PERSONS LIVING WITH HIV

THROUGH THE SUJAAG PROJECT IN PAKISTAN: A
SOCIOECOLOGICAL ANALYSIS

Recent systematic reviews note that 0.1% of the population in Pakistan has HIV, representing
approximately 190,000 persons. Reports note that HIV concentration in Pakistan is particularly
among persons who inject drugs, transgender individuals, and men who have sex with men
(Rabold et al., 2021). Estimates show increasing rates of HIV contraction among non-high-risk
populations through sexual networks or those living in close proximity of HIV high-risk groups
(UNAIDS, 2020). In the last two decades eight separate HIV outbreaks have been reported across
the country with a majority concentrated in the Larkana District (whereby districts are admin-
istrative sub-units of the provincial government) of Sindh Province (Pakistan comprises of five
provinces) (Mir et al., 2021; Zaid et al., 2019). In April 2019, Ratodero Tehsil (with Tehsil being an
administrative sub-division of districts) in Larkana District faced the most recent HIV outbreak
accounting for nearly 1,100 out of the 1,600 newly documented HIV cases among children in Pak-
istan (Ahmed et al., 2019; UNAIDS, 2020; Zaid et al., 2019). Studies from the area also reported
several incidents of stigma and discrimination, as a result of which some families felt forced to hide
their child’s HIV status, and others mentioned being forcibly evicted from their villages thereby
losing viable housing options (Ouyang & Caron, 2021). Jajja’s (2020) article highlights that in
Ratodero Tehsil, children living with HIV were being stopped from attending school or playing
with their peers, and women were being subjected to violence and cruelty at the hands of family
members and neighbors.
These discriminatory practices are particularly damaging in cultures like Pakistan where the
goals of the group as a whole—over the needs and desires of each individual—are emphasized,
and social relations ensure protection and inclusion. The impact of HIV-based stigma has
been well documented as a complex mix of perceived stigma and enacted stigma (Jacoby, 1994;
Malcolm et al., 1998). It often involves devaluation of specific personal attributes, which shames
and disgraces the targeted group, rendering it socially unacceptable (Ahsan Ullah, 2011; Rafique
et al., 2014; Scambler & Hopkins, 1986). Moreover, stigma has negative effects across many
facets of the individual’s life, ranging from the person’s health seeking behavior, including HIV
test-seeking, willingness to disclose HIV status, and social support solicited and received (Boyd
et al., 1999; King, 1989; Malcolm et al., 1998; Raveis et al., 1998). Link and Phelan (2006) add that
stigmatization due to HIV creates a disabling environment for the stigmatized group and causes
disruptions in social relationships, which hinders access to other resources required to live a
healthy life (Berkley-Patton et al., 2013; Bos et al., 2008). The worst affected and discriminated
are socio-economically disadvantaged populations among whom stigma-induced isolation and
moral judgment, coupled with systemic delays in healthcare, have been identified as major
A SOCIOECOLOGICAL ANALYSIS 3

deterrents to providing high quality healthcare for individuals living with HIV (Magala et al.,
2018; Mahajan et al., 2008; Ziersch et al., 2021). It seems therefore crucial to develop interventions
that effectively reduce HIV-related stigma and its effects.
Research shows that programs that integrate elements of holistic social support can alleviate
the impact of stigma for those with lived experiences of HIV (Greene et al., 2002; Holzemer et al.,
2009; Li et al., 2009). Also, evaluation studies show that stigma can be reduced through a vari-
ety of intervention strategies including sensitization, counseling, coping skills acquisition, and
intergroup contact among both, targets and perpetrators of stigma (Brown et al., 2003). That said,
Andersson et al. (2020) mention that there is a dearth of evidence of the effectiveness of such
interventions on stigma reduction and on improving the quality of life of people living with HIV.
Further, these authors highlight that there is little understanding of ‘if’ and ‘how’ broader com-
munities’ understanding of HIV and related stigma has evolved over time. Sengupta et al.’s (2011)
systematic review identified only two out of 19 studies that used randomized controlled trials
which reported evidence of reduction in HIV-related stigma after the intervention. Evidence of
interventions to reduce HIV stigma becomes even more scarce in the case of developing coun-
tries, with no studies having looked at the possible long-term impact of the interventions in these
settings (Brown et al., 2003).
The current paper addresses this gap by reporting on Project Sujaag’s impact in addressing HIV
stigma in the intervention communities in Ratodero Tehsil, Larkana District, Pakistan.

PROJECT SUJAAG: BACKGROUND AND RATIONALE

Project Sujaag—meaning ‘to awaken’’ in Sindhi language—was implemented by Interactive

Research and Development (IRD), Pakistan, between December 2020 and March 2021, funded
by the Gilead Foundation. The project aimed to reduce HIV-based stigma and create acceptance
for people living with HIV in Ratodero Tehsil, Larkana District, Pakistan, through a two-pronged
approach: (1) community engagement, via development of Community Support Groups, Theatre
of the Oppressed performances, and health education sessions and (2) targeted social and behavior
change communication (SBCC) campaigns comprised of branded local transport, contextualized
television advertisements, and interactive social media tools. The project’s slogan ‘Rishta Na, Soch
Badlio’ - meaning ‘change your mindset, not your relationships with your loved ones’ - focused
on empathy towards and inclusion of people living with HIV. Please see Figure 1 for a map
demarcating the project implementation areas.

METHODOLOGY

Study design and procedure

This study included three phases, with some communities involved in all phases, and others only
in one or two phases. In the Formative Phase, Focus Group Discussions were undertaken across
eight locations (one in each location) to identify communities’ experiences and perceptions about
HIV and people living with HIV. A semi-structured Focus Group Discussion guide was utilized for
this purpose (please see the supplementary materials). In the Implementation Phase, Narrative
Reflective Field Reports (n = 12 communities across Ratodero Tehsil) were utilized to gain an etic
perspective of stigma mitigation and acceptance of people living with HIV after the Participatory
4 KHURSHID et al

F I G U R E 1 Map demarcating
the Project Sujaag’s
implementation area

Action Research interventions were undertaken. Finally, in the Evaluative Phase, Focus Group
Discussions were conducted across eight locations (one in each location). The aim of these focus
groups was to record the communities’ perspective on the effectiveness of implementation strate-
gies addressing communal practices and perceptions around HIV. Details of the communities
involved in each of the study phases are provided in Table 1.

Formative phase

The formative phase served to guide in conducting participatory community assessment and iden-
tifying specific areas where project activities needed to focus on. Purposeful sampling was used to
identify focus group participants that consisted of people living with HIV, their caregivers or par-
ents, and community members who were not directly affected but lived in HIV-prevalent areas.
Each group constituted of eight to ten persons who were first contacted by the community-level
project volunteers to seek their consent to participate in these discussions. To ensure candid and
equitable discussions, there were separate group discussions for male and female participants by
rural and urban locales. All the focus group discussions were conducted in Sindhi because both
the focus group participants and facilitators of the group discussion were fluent in this language.
Verbal informed consent was sought from all the focus group discussants in the formative and
evaluative phases of the study. Each interaction lasted for approximately one hour.
A SOCIOECOLOGICAL ANALYSIS 5

TA B L E 1 Rural (R) and Urban (U) Communities involved in the Project Sujaag
Formative Phase Implementation Phase Evaluative Phase
(n = 8, R = 5, U = 3) (n = 12, R = 8, U = 4) (n = 8, R = 4, U = 4)

Rural Areas
Phulpota Ali Baig Kodrani Izat Ji Wandh
Sajjan Hakro Bossan Nandha Mohil
Tayyab Jumo Agham Thango Khan Bozdar
Thango Khan Bozdar Nandha Mohil Waris Dino Machi
Usman Unnar Sanhra Machi
Suhrab Khan Machi
Thango Khan Bozdar
Waris Dino Machi
Urban Areas
Motanpur Muhalla Gareebabad Gareebabad
Ratodero City (men and women FGDs) Garhi Khuda Bux Garhi Khuda Bux
Kot Illahi Bux Ratodero City (men and women FGDs)
Pir Jo Goth
Note. All focus group discussion locations included solely male or solely female participants, unless otherwise indicated.

A total of 70 participants (women = 49%, men = 51%) participated in eight focus group dis-
cussions, each held in a different location (see Table 1). The mean age of female participants was
32 years and the mean age for male participants was 31 years. Female participants were predom-
inantly housewives with a few doing sewing and embroidering as income generating activities.
Among men, most participants were manual laborers and farmers, some were still studying, and
a few were salaried employees at factories or offices. Details about the focus group participants by
gender and place of residence are provided in Table 2 in the top panel.

Implementation phase

In the implementation phase, Participatory Action Research was utilized to form 23 Community
Support Groups (12 female groups and 11 male groups) with 280 persons (58% women, 42% men).
All the members were from Sujaag’s intervention communities. Each group comprised of eight to
twelve participants and met on a weekly basis.
First, Community Health Workers (n = 10) were trained to engage with local religious leaders,
advocacy champions, and HIV networks to identify local persons living with HIV. Thereafter, The
Constellation’s (2020)—an organization generating positive change through a network of resilient
communities—SALT-CLCP’s (Stimulate Appreciate Learn and Transfer—Community Life Com-
petence Process) immersive community engagement strategies were adapted to approach the
communities of interest for inclusion in these Community Support Groups (please see Figure 2
for a diagram representing this process). Social behavior change techniques such as theatre
plays, awareness sessions, and mass communication campaigns, were then used for community
mobilization.
 6

TA B L E 2 Details of Focus Group Discussion Participants in the Formative and Evaluative Phases
Focus Group Discussion Participants in the Formative Phase
34 Women (Mean Age: 32) 36 Men (Mean Age: 31)

18 from Rural Centres 15 People with Lived Experiences of 28 from Rural Centres 16 People with Lived Experiences of
HIV HIV
16 from Urban Centres 19 People with No Lived Experiences 8 from Urban Centres 20 People with No Lived Experiences
of HIV of HIV
Focus Group Discussion Participants in the Evaluative Phase
35 Women (Mean Age: 33) 40 Men (Mean Age: 27)

17 from Rural Centres 19 People with Lived Experiences of 21 from Rural Centres 22 People with Lived Experiences of
HIV HIV
18 from Urban Centres 16 People with No Lived Experiences 19 from Urban Centres 18 People with No Lived Experiences
of HIV of HIV
Note. Whereby People with Lived Experiences of HIV comprise of those living with HIV themselves or being a guardian to a child living with HIV; whereas People with No Lived Experiences of
HIV refers to those who are unaffected by a direct or proxy experience of HIV.
KHURSHID et al
A SOCIOECOLOGICAL ANALYSIS 7

F I G U R E 2 Stimulate Appreciate Learn and Transfer - Community Life Competence Process as adapted by
the Sujaag project

Each group meeting was facilitated by at least one trained Health Worker to unpack HIV
stigma in the community’s context, reflect upon the social determinants of HIV, appreciate the
role of social inclusion, define individual and collective aspirations, gain a deeper understand-
ing of stigma from the community’s perspective, and develop clear plans and methodology for
community action and advocacy around HIV.
To gauge the qualitative efficacy of the project, the Health Workers penned down in-depth nar-
rative field reports soon after the completion of field visits. These reports noted issues of reflexivity
and documented the process and progress of the groups.

Evaluative phase

Data collection in the evaluative phase was designed and implemented along the same lines as
during the formative phase. Community volunteers used purposeful sampling to recruit focus
group discussants. The participants of the implementation and evaluation phases did not over-
lap, but they were largely from the same project implementation areas. This was done so that
all the participants could discuss candidly about the progress of the project based on their own
experiences, or knowledge about Project Sujaag.
Eight focus group discussions (n = 75 participants, women = 47%, men = 53%) were conducted.
The mean age of female participants was 33 years, while for male participants it was 27 years.
Among the women, most participants were housewives, a few were students, and a few were
handicraft workers and social mobilizers. In the men’s groups there was a mix of students, shop-
keepers, farmers, and laborers. Details about these focus group participants by gender and place
of residence are provided in Table 2 in the bottom panel.
8 KHURSHID et al

Data analysis

All the focus group discussions in the formative and evaluative phases were audio recorded and
transcribed by the Community Health Workers who had carried out the discussions, in the lan-
guage in which the discussions were held. To ensure confidentiality, the transcriptions did not
include any identifying information. After, transcriptions were translated into Urdu, in which
they were analyzed.
The Narrative Field Reports were consolidated by a Field Supervisor and shared with the project
team. Content analysis of the summary reports was done by two project team members.

The socioecological model framework in the context of the Sujaag

Project

In all the phases of the Sujaag project - intervention design, implementation, and evaluation - the
Socioecological Model (SEM) was used as a continuous, reflective, and mindful process. It empow-
ered the implementation researchers to understand the complex interplay between individual,
interpersonal, community, and policy factors that put people at risk of being stigmatized or protect
them from experiencing or perpetrating stigma-induced behaviors. This process also illustrated
and helped the program team recognize how factors at one SEM level influenced and overlapped
with factors at another. Later, at the data analysis stages, responses of the focus group discus-
sions were categorized along the different levels of the SEM. Thus, both inductive and deductive
perspectives, for their respective strengths, were used. Whereas grounded theory that informed
program design and implementation relied primarily on inductive analysis, the content analysis
and program evaluation of the focus group discussions were based on deductive analysis.
The Socioecological Model considers an individual’s immediate physical and social environ-
ment – such as identity, efficacy, and status – as well as their interactions with immediate family,
the communities, and policy environment to which they belong; attributes relevant to this project
(Dutta et al., 2021; Kilanowski, 2017). Moreover, the Socioecological Model aided in understand-
ing intrapersonal realities, whereby people’s health-seeking and social functioning is often tied to
perceptions of shame and disgrace of the self (Rafique et al., 2014; Yigit et al., 2020).
While this model has been widely used in studies on community engagement for uptake of
vaccination and other biomedical tools, or analyzing health outcomes for key populations such as
injecting drug users, transgender individuals, and youth, it has not yet been applied to understand
HIV-related stigma amongst the general population in Pakistan within a Participatory Action
Research context (Bashir, 2011; Bekker et al., 2015; Dutta et al., 2021; Strathdee et al., 2010).
The SEM levels devised for this study were drawn from peer-reviewed SEM and HIV literature
from developing countries and refined in the context of the project: Individual, Interpersonal,
Community and Social, and Macro levels, as showcased in Table 3 (Dutta et al., 2021; Nyblade
et al., 2009).

RESULTS

Overall findings from the focus group discussions in the formative and evaluative phases revealed
that stigmatizing attitudes were less striking after than before the intervention. Below, specific
 A SOCIOECOLOGICAL ANALYSIS

TA B L E 3 Definitions of Manifested Expressions of HIV Stigma per Layers of the Socioecological Model in the Context of the Sujaag Project
SEM Levels Manifested Expressions of HIV Stigma

Individual Internalized and enacted stigma around one’s own HIV status
Interpersonal Interactions with immediate families and friends giving rise to a sense of felt or perceived stigma and discrimination towards
people living with HIV
Community and Social Dynamics and conditions in the places where people living with HIV reside, learn, work, and play that negatively affect their
quality of health, sense of self-esteem, social relations, and a wide range of life-outcomes
Macro Stigmatizing approaches towards people living with HIV used by influential members in the cultural, economic, legal, and
policy environments that impedes or supports service access, utilization, and overall systems’ response to HIV and people
affected thereof
9
10 KHURSHID et al

study findings from the formative, implementation, and evaluative phases have been organized
and reported across the four Socioecological Model levels.

Individual-level

In the formative phase, it was revealed that people living with HIV, as well as parents of chil-
dren living with HIV, had preconceived notions and beliefs about the disease that affected their
self-perceptions and identities following diagnosis, contributing to self-isolation, anxiety, and
depression. “I lived happily before the diagnosis, but since then I have been miserable. I am
extremely anxious all the time” (man living with HIV, 28 years old, Ratodero City).
Due to lack of knowledge regarding transmissions routes, most attributed HIV to promiscuity,
sexual misconduct, and drug use. Men living with HIV, especially, adopted self-isolation to avoid
judgment from community members. A man living with HIV said, “. . . my feelings for myself
made it difficult for me to interact with people” (32 years old, Usman Unar Village).
In the implementation phase, Community Support Group members – and general community
members – participated in conversations around health and HIV, understanding HIV trans-
mission in their context, and myth-busting linked to pre-existing notions of HIV. Focus group
participants in the evaluative phase reported that this helped reduce internalized stigma. A 22-
year-old woman living with HIV said, “Information and awareness from the doctors and health
workers helped us to change the way we think, and it changed our attitudes towards living with
HIV” (Village Thango Khan Bozdar). Respondents emphasized that shifts in intrapersonal reali-
ties were possible because of access to new information in a safe space where people could engage
in critical dialogue and ask questions. A respondent expressed, “Change is the way of the world.
Through this group and the new information shared, I believe we ourselves can change and create
space for people living with HIV” (man, 32 years old, Garhi Khuda Bux).

Interpersonal-level

Beyond their internalized stigma, participants from the formative phase emphasized how rela-
tionships between spouses and partners were broken due to the stigma associated with HIV. In
particular, women with HIV and mothers to children living with HIV faced severe criticism and
exclusion from their own families. A 40-year-old woman living with HIV, from the Village Thango
Khan Bozdar said, “I feel as if people hate me. My in-laws have kicked me out and I am forced to
live with my parents and even they do not treat me with respect.” She further added, “I wish I never
got tested for HIV. I wish I had just died. That way I wouldn’t have known about my diagnosis
and my family and community’s treatment towards me would have been kinder.” Even children
faced ostracism. Respondents stated keeping utensils of children living with HIV separate from
others, again showcasing limited understanding of how HIV is transmitted.
Responses in the evaluative phase reflected more positive attitudes. For example, a father of a
child living with HIV questioned, “Even young children were told not to interact and play with
the children diagnosed with HIV. Why is their childhood being stolen from them?” (35 years old,
Tayyab Village). Focus group discussion participants in the evaluation phase of the project high-
lighted that the Community Support Groups fostered inclusivity and helped collectively tackle
stigma and other social issues in their area. Health Workers facilitated Community Support
A SOCIOECOLOGICAL ANALYSIS 11

Group members to co-identify resources and social support mechanisms that enable communal
functioning.
Responses in the Evaluative Phase also highlighted that the Community Support Groups played
a strong advocacy role to counter myths and challenge discriminatory attitudes and behaviors
towards people living with HIV. A relative of a child living with HIV said, “Since I have attended
HIV awareness sessions, I don’t stop my children anymore from playing with my niece” (woman,
40 years old, Nandh Mohil Village). Post-implementation of Sujaag, both urban and rural men
and women unanimously reported observing and experiencing an improved acceptance of people
living with HIV. One of the respondents shared, “When I first learned of HIV, [. . . ] I forbade [my
children] to play with the children in the village who were diagnosed with HIV. [But] now [due to
attendance at the Project Sujaag’s sessions] I know better. . . ” (woman, 35 years old, Village Nandh
Mohil).
People with lived experiences of HIV also experienced re-establishment of ties, greatly alleviat-
ing concerns of parents and caregivers. A mother of a child living with HIV shared, “My daughter’s
betrothal was dissolved when she was first diagnosed with HIV. I was sad and concerned, but now
I have faith that something good will come her way in the future” (29 years old, Ratodero City).

Community and social-level

Responses in the formative focus group discussions revealed that isolation from others dis-
rupted communal support in routine activities: men living with HIV reported several obstacles
to retaining their employment or seeking new jobs. One man expressed, “I faced several
difficulties because I couldn’t talk about my HIV status and discuss my concerns with my com-
munity members. I experienced lack of support and connections” (30 years old, Tayyab Village).
Women — who faced additional care labor responsibilities – were unable to rely on previously
available communal structures to help with their ill children.
To overcome stigma at the community level, in the implementation phase, the Community
Support Groups identified common goals regarding 1) access to quality and integrated health-
care services, 2) environmental upgradation to keep diseases at bay, 3) striving for a better future
for children, and 4) emerging as a strengthened community to solve their own problems. In
order to realize these goals, the groups formulated action plans focusing on empowering women
by setting-up vocational centers for skills development and income generation; environmental
improvement via organizing clean-up drives; and mobilizing communities for HIV screening to
know their status and seek appropriate care.
According to the participants in the evaluative phase of the project, this resulted in a positive
shift leading to acceptance of families affected by HIV. A respondent expressed, “There is a major
difference now, we feel more acceptance and less hatred. This has made life easier for me and my
family and I am much happier now” (woman living with HIV, 40 years old, Village Thango Khan
Bozdar). Men living with HIV reported being able to collect and gather in their communities and
reintegrate with peers and employers. A 37-year-old man, living with HIV, said, “Now at the end of
the day I go to outaak [communal gathering place] for kacheri [talks, discussions] with my friends
and it makes me happy” (Village Waris Dino Machi). Not only has there been a re-establishment of
severed social relationships, but by leveraging shared resources, community members were even
able to build support networks for people with lived experiences in the form of community-led
ration distribution and financial aid.
12 KHURSHID et al

Macro-level

Respondents in the formative phase had reported limited health services for HIV care and absence
of support systems, such as counseling, awareness, financial aid, and nutritional supplements.
These were acknowledged as obstacles by people affected. Mistrust in healthcare services and
lack of information further exacerbated the already poor outcomes for those affected, and even
deterred people from adopting positive health behaviors around HIV. A woman, living in an
HIV-prevalent area shared, “We don’t trust the healthcare services being provided by the gov-
ernment. This makes us wary of screening and testing and that is why a lot of people avoid tests
and treatments” (36 years old, Village Sajjan Hakro).
Recognizing the role of macro-level systems in creating enabling structures and empowered
communities, some Community Support Group members were able to take actions towards
improving infrastructure for health, education, and utilities, through advocacy efforts with
local government representatives and community leaders during the implementation period.
This included demands for increased screening for HIV; advocacy efforts with Union Councils
(the smallest unit of local governance in Pakistan) for quality and integrated health services for
persons affected by HIV; health providers’ training on counseling; and sensitization trainings
among young people.
In the evaluation phase participants reported that active measures to prevent the spread of
HIV have been adopted. These included safe practices and screening to know one’s HIV status,
as well as medical adherence amongst people living with HIV. Respondents in the evaluative
phase also reported that these activities resulted in improved trust in doctors, health workers,
and other healthcare representatives. “Efforts by health workers have motivated us to seek help”
(father of a child living with HIV, 36 years old, Ratodero City). A respondent from an area with
high HIV prevalence shared, “We take precautions now: we use new syringes; we ask doctors to
only use new injections from the sealed packets” (man, 26 years old, Ratodero City). A woman
from a village with high HIV prevalence said, “In our villages, young and newly-wed girls and
their husbands also use contraceptives to prevent HIV. . . We know that condoms can help to pre-
vent the spread of HIV” (32 years old, Village Sajjan Hakro). Participants in the evaluation phase
thus felt that those affected by HIV had agency and acted towards improving health outcomes
for themselves and their loved ones within the context of their communities, as well as advocat-
ing for systems-level change, such as generating greater demand for HIV screening, preventative
practices, and improved services.

DISCUSSION

This study is unique and significant to implementation research scholarship as one of the first
of its kind. It provides an epistemological understanding of Project Sujaag’s impact in addressing
stigma and discrimination experienced by people living with HIV in Ratodero Tehsil, Pakistan.
We report on how this project was implemented and provide participants’ descriptions of how
this improved their lives at different levels of their living system.
Study findings from before the intervention concurred that systematic disenfranchisement of
marginalized populations – such as impoverished people who are living with HIV – experience
stigma and ostracism, often resulting in loss of social support, which in turn can cause immense
dysfunction and reduce positive health outcomes (Dutta et al., 2019). While earlier research sets
A SOCIOECOLOGICAL ANALYSIS 13

the tone for creating a culturally sensitive understanding of HIV stigma (Dutta et al., 2021), it offers
limited insight into the manifestations of stigma, especially in South Asia, where it is more overt,
including denial of hospital care, eviction from homes, termination of employment, and even
denial of the performance of last rites (AIDS Alert, 2002; Tomar, 2019). The discussions held dur-
ing the formative stage of this project made this clear. The formative phase of the Project Sujaag
indicated that HIV-based stigma and its resultant discrimination hindered social functioning and
relationships of people living with HIV and their caregivers in Ratodero Tehsil, that concurred
with Jajja’s (2020) observations. In Pakistan, as with other South Asian cultures, communal biases
may inform intrapersonal reflections and interpersonal relationships, as showcased in the expe-
riences of stigma of those affected here. Though the 2019 outbreak in Ratodero Tehsil was largely
attributed to medical malpractice, stigmatized perceptions and behaviors resulted in people liv-
ing with HIV being dissociated from their original communities, disrupting the social bonds that
existed both in work and public spaces, an act that may have perpetuated depressive states, further
compounding internalized stigma (Hatzenbuehler et al., 2013; Ouyang & Caron, 2021).
Participants’ reports in the evaluation phase reflected more positive views and directly related
these to the project’s activities, which focused on multiple levels in the social ecology of these
communities. One significant feature of this study was the focus on the effects of the intervention
on the re-establishment of social relationships, which is typically not an outcome of traditional
public health projects, where the focus is on improving HIV knowledge to reduce internalized
stigma only (Crandall & Coleman, 1992; Scambler, 2009).
While Rabold et al.’s (2021) paper systematically analyses HIV outbreaks in Pakistan during
2000–2019, interestingly the role of stigma as a facilitator of HIV transmission, especially within
high-risk and marginalized groups, is not addressed (Singer, 2007). The present paper addresses
this gap while reinforcing Link and Phelan’s (2006) findings that one needs to consider intersect-
ing identities, such as HIV status and gender, as these may inform manifestation and experience
of stigma among those living with HIV and even their family members. For example, before the
intervention men reported more internalized stigma and depression and engaged in self-isolation.
This may have stemmed from their own biases and preconceived notions around HIV transmis-
sion – associated with ‘devious’ behaviors amongst men – as well as vicarious or direct experience
of discrimination by others (Deacon, 2006). By focusing on how HIV stigma was perceived and
experienced by men and women, this study contributes to an intersectional understanding of
HIV stigma and its impact on individual and overall community’s health and wellbeing. More-
over, the intervention itself acknowledged the importance of actions around the empowerment
of women – such as vocational training, emphasizing the importance of education for girls, or
women-led community cleanliness drives that entailed washing the streets, community garbage
collection, appropriate disposal, etc. At one end, these activities, enhanced women’s participation,
ensured their inclusion while also empowered them. That said, non-gender specific issues – such
as access to electricity or other services, that impacted the larger community - enjoyed noticeably
greater priority and attention from community leaders in comparison to the gender-based issues.
This differential priority-setting calls for more equitable positioning of women’s issues. Using the
SALT-CLCP and other participatory methods could be the first step in this direction.
While causal linkages cannot be established with this study design, the participatory design
of the project, its holistic approach, as well as the ways in which participants’ responses in the
evaluation phase illustrated improvements, suggest that these can be attributed at least in part to
the Sujaag project.
Studies in developing countries recommend working across at least three levels: individual,
environmental, and policy, including garnering political will and resources for longer-term stigma
14 KHURSHID et al

reduction (Nyblade et al., 2009). As such, we used the Socioecological Model in this study to
identify and categorize changes in the manifestations of HIV stigma at individual, interpersonal,
community and social, and macro levels across the project cycle. Devoid of the constraints of a
rigid theoretical framework, the Socioecological Model allowed us to understand deeper concepts
such as social capital and trust building between communities, extremely relevant to Pakistan’s
social fabric, where people rely on social relations for support and assistance (Gertler, 2006; Sheikh
et al., 2016).
A combination of embedded community engagement and socio-culturally sensitive mass com-
munications in the project allowed not only meaningful relationships with target communities,
but also ensured sustainable creation of social capital and reduction of stigma in the longer term.
Existing literature highlights that participatory methods such as games, role-plays, exercises, and
group discussions allow co-creation of a non-judgmental environment that enables participants to
explore personal and societal values and behaviors, while developing stigma-reduction strategies
(McIntyre, 2007; Nyblade et al., 2009). Similarly, Participatory Action Research allowed collec-
tive reflection and inquiry for participants and researchers to devise appropriate solution(s) for a
given research problem or gap (Baum et al., 2006). Sujaag emulated action through the advocacy
and research process itself, enabling stakeholders to change their realities, navigate the exist-
ing power dynamics, social structures, identities, and multiple intersections of oppression and
privilege which needed to be considered (Dhamoon, 2010). This also allowed humanizing and
extending empathy to those living with HIV while recognizing common community goals, such
as those around infrastructure, health, education, and rights (Nandi et al., 2018).
These findings reinforce the role of community and family-level safe spaces for critical dialogue
and information sharing as key in overcoming stigma and power relations (Bos et al., 2008).

LIMITATIONS

While the participatory method is a strength of this project, the innovations taken by the Commu-
nity Support Groups may produce interventions that are largely community-specific and might
therefore have limited generalizability across other regions and cultural norms. Interventions in
other communities can be inspired by the use of the Community Support Groups, but will need
to ensure inclusion of lived experiences and local voices to offer appropriate contextualization,
thereby leading to success of the intervention. Another limitation of the project is that the focus
group participants in the formative and evaluative phases were not necessarily representative
of the entire diversity of the local populations. This results from the project’s prioritization of
participatory methods, which can be effectively done with relatively smaller numbers of commu-
nity members candidly sharing their perspectives, only possible through volunteer community
participation and trusted local networks.

CONCLUSION AND RECOMMENDATIONS

The study suggests that the project’s efforts in conjunction with the Community Support Groups
facilitated de-stigmatization and enabled community members to avail multiple resources to
increase their knowledge around HIV, as well as the provision of appropriate health services.
While the Project Sujaag continues to enable community members to ‘awaken’ and amplifies
voices of people living with HIV, further documentation of best practices using auto-ethnographic
A SOCIOECOLOGICAL ANALYSIS 15

narratives of people affected by HIV in Pakistan, and studies analysing inclusive language related
to HIV, as well as its related policy documentation, are recommended. The project’s findings may
also aid in identifying and advancing local collaborative interventions with the Sindh AIDS Con-
trol Program and the National AIDS Control Program in Pakistan (Ahmed et al., 2019; Davlidova
et al., 2019). By understanding how HIV-related stigma can impact wellbeing at multiple levels of
the Socioecological Model and how a collaborative and participatory approach can help reduce
these inequities at each layer. This study informs policies, program design, and methodologies
for understanding lived experiences of HIV, which can be applied in future HIV work and in
addressing other stigmatized illnesses in regions with similar socio-cultural settings.

CONFLICT OF INTEREST
The research team has no conflict of interest to disclose.

ORCID
Kainat Khurshid https://orcid.org/0000-0001-9520-8944
Mehek Ali https://orcid.org/0000-0002-1477-9102

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18 KHURSHID et al

AU T H O R B I O G R A P H I E S

Kainat Khurshid is a Communications Associate at IRD Pakistan. She holds a Master’s

degree in Adult Education for Social Change from University of Glasgow. Kainat contributes
in translating research and field insights into potential behaviour change communications.

Tapati Dutta is a public health professional with 25 years’ experience. She spearheaded
HIV Rural Research Center in India, worked at the Rural Center for AIDS Prevention, Indi-
ana, and led bilateral-exchange programs via academia-practice-research partnerships among
African, Asian, and US institutions. Currently she is Assistant Professor at Fort Lewis College,
Colorado.

Kausar S. Khan serves as a Technical Advisor at IRD, Aga Khan University, Indus Hospital
& Health Network, and beyond. She has over 20 years’ experience in community work. Her
areas of research include public health equity, promotion, education, and quality. She serves
as Co-Director for the Community Engagement Collective (CEC) at IRD Pakistan.

Syed Aun Haider is a Research Associate at IRD Pakistan. He has a keen interest in social poli-
cies. Through research and by working directly with community stakeholders, he has helped
various NGOs in designing contextual interventions for the underprivileged.

Usman Ali Ahmed is a communications professional with over 10 years’ experience in the
development sector. He has a graduate and post-graduate degree from the Institute of Business
Administration, Karachi. Usman has implemented programs for HIV, COVID-19 and Polio.

Hashmat Jatoi is a development professional with over 14 years’ experience. He has exten-
sively contributed in the fields of program management, monitoring and evaluation, policy
and system reviews, and in the development of sustainable models of health service delivery.

Mohammad Tahir is a development practitioner with extensive experience of working with

marginalized and under-served communities. He trains and supervises field-based teams.

Raja Sarfraz is an anthropologist, researcher, and a legal consultant. He works on devising

localized solutions to build sustainable social systems.

Aneeta Pasha is the Country Director of IRD Pakistan. She has over 16 years’ programmatic
and research experience in sexual and reproductive health and mental health. Aneeta estab-
lished IRD’s mental health program, serves as Co-Director of the CEC, and is currently a
member of the WHO – Civil Society Task Force on TB.

Myra Khan has over 10 years’ experience in marketing and health communications, lead-
ing several media, edutainment, community mobilization and awareness campaigns across
various diseases – TB, HIV, Mental Health, and Immunization. Myra serves as Head of
Communications at IRD Global and is co-PI for Project Sujaag.
A SOCIOECOLOGICAL ANALYSIS 19

Mehek Ali is Senior Program Manager for the CEC at IRD Pakistan. She has an MSc in Psy-
chology from the University of Birmingham and has worked in education, mental health, and
community-based innovations in Pakistan since 2012, having led several community projects
in TB, HIV, COVID-19, and others. She is co-PI for Project Sujaag.

How to cite this article: Khurshid, K., Dutta, T., Khan, K.S., Haider, S.A., Ahmed, U.A.,
Jatoi, H., Tahir, M., Sarfraz, R., Pasha, A., Khan, M., & Ali, M. (2022) Addressing Stigma
Among Persons Living with HIV Through the Sujaag Project in Pakistan: A
Socioecological Analysis. Journal of Social Issues, 1–19. https://doi.org/10.1111/josi.12547