Indian Journal of Health Social Work
(UGC Care List Journal)
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POSITIVITY AND PROSPERITY GO HAND-IN-HAND: THE STORY OF
UNSUNG HEROES FROM PUNJAB
Tasvir Kaur1, Shispal2, Smita Sharma3 & Gaurav Gaur4
1Research Scholar, Centre for Social Work, Panjab University, Chandigarh, 2Research Scholar,
Centre for Social Work, Panjab University, Chandigarh, 3Associate Professor, Department of
Economics, sector-14, Panjab University, Chandigarh. 160014, 4Associate Professor, Centre for
Social Work, Panjab University, Chandigarh
Correspondence: Gaurav Gaur, e-mail: gaurpu@gmail.com
ABSTRACT
Background: With approximately 24.7 lakh people living with HIV in India, and nearly one lakh
HIV positive people in Punjab, the role of outreach workers becomes crucial in providing support,
linking patients to medical care, and combating discrimination. Aim: The current study is based
on the concept that someone who has gone through a situation and has been successful in
overcoming it can be instrumental in assisting others to recover from a similar situation. The
exploration delves into the personal experiences of HIV-positive outreach workers exhibiting
their motivations, struggles, and the unique insights they bring to their communities. Methods
and Materials: Through in-depth interviews, the study highlights the experiences of three
outreach workers (a woman, a man, and a transgender woman). Results and Conclusion: The
study aimed to understand the critical role these workers play not only in their own lives but also
in the lives of those they assist by understanding peer support models and stigma prevailing in
society.
Keywords: HIV/AIDS, outreach workers, stigma, resilience
INTRODUCTION
World Health organisation (WHO) in its 2013
report had accepted that since the AIDS
epidemic begun, close to seventy million
people have been infected with virus and half
of them have already died of AIDS. It also
l isted Sub-Saharan Africa as the most
severely affected, with nearly one in every
twenty adults living with HIV. After more than
ten years we see that HIV remains global
concern and has also affected people in India
in large numbers. According to the estimates
provided by National AIDS Control
Organisation in 2023, India has an estimated
24.69 lakhs persons living with HIV. In state
of Punjab closer to one lakh persons are
affected by HIV. The exact number is stated
to be 1, 05,791. Among the states, the rate
of positivity among the injection drug user
(IDU) population is most pronounced in Punjab
(Swain et al., 2017). IDU population is very
hard to track and deal with and they are at
higher risk of contracting infections (Rahimian
& Pach, 1999). Various government and non
government organisations and staff are
working in sync to sustainably deal with its
sustainable management which involves a
combination of preventative and curative
measures. As the HIV stigma related to HIV in India is ubiquitous, acknowledging and
documenting the field experiences of the
volunteers working with AIDS patients
becomes extremely important. Outreach
workers are very important given their
significant role at the ground level and are
considered to play a central role in combating
the HIV situation in India (Hidalgo et al., 2011).
The most vital role they play is in tracking
and bringing back the patients for the
treatment. This can be life saving for the
patients battling economic and social
hardships. The main functions of outreach
workers iscreating linkage and referral to
medical facilities. Outreach workers promote
Tuberculosis (TB) screening and HIV testing
(India HIV/AIDS Alliance). Here it is important
to highlight that the outreach workers who
are HIV positive tend to be more efficient and
successful in counselling as it involves the peer
support. But at the same time, HIV
positiveoutreach workers have to face more
challenges than others while working on the
ground.
OBJECTIVES OF CURRENT STUDY
The current study is based on the concept of
empathy that someone who has gone through
a situation and has been successful in
overcoming it, can be instrumental in assisting
others to recover from similar situation. The
exploration delves into the personal
experiences of HIV-positive outreach workers
exhibiting their motivations, struggles and the
unique insights they bring to their
communities. We can better understand the
critical role these workers play not only in
their own lives but also in the lives of those
they assist by understanding peer support
models and stigma prevailing in the society.
Case studies illustrate the transformative
power of hope and advocacy depicting how
personal journeys can ignite change and foster
resilience in the fight against HIV/AIDS.
METHODOLOGY
This study employs a qualitative approach to
explore the experiences of HIV-positive
outreach workers of the state of Punjab. The
identity of workers as well as care centre
visited is kept as confidential as per norms.
In-depth interviews and provided a deeper
understanding of their personal journeys,
motivations and challenges. Participants were
selected based on their roles within Care and
support centres (CSCs). Representation of
every gender was taken into consideration
and those participants were selected who are
HIV positive themselves and were considered
good performers in the centre. Exploratory
research methodology aimed to provide rich
insights into the lived experiences of these
individuals and the broader implications for
HIV outreach work and support.
REVIEW OF RELATED LITERATURE
Notwithstanding the perceived comfort that
can come from someone with the same lived
experience, this concept is complicated. Some
common wounds might not be an asset, and
have been deemed detrimental (Fussell &
Bonney, 1990), or unsuitable for example
experiences of past criminal convictions, drug
and alcohol addictions, and mental health
issues (Gleed, 1996). It has been observed
that it is only after resolution of painful or
traumatic experiences that empathy for others
might be available. (Cristy, 2001).McDonald
(2001) stressed that empathy was a critical
component of participatory research. Recent
advances in treatment have improved the
health of many people living with HIV/AIDS.
The study by Yallop etal. (2002) shows that
the changing context of care is also impacting
significantly on people who provide services.
The study explored four themes: hope and
optimism; changing context, roles and
identities; changing relationships; and quality
of life. Study findings have implications for
the wider health care context and the changing roles and power balances within this
arena. Sheppard (2004) argues that a
researcher using grounded theory should seek
an empathic understanding of the people they
are studying, to make sense of their responses
by putting yourself in their shoes. When
shared understanding and common
experiences are discussed in the qualitative
research literature, the concept of insider/
outsider status is more commonly discussed.
The insider/outsider status is understood to
mean the degree to which a researcher is
located either within or outside a group being
researched, because of her or his common
lived experience or status as a member of that
group.A related topic is ‘common wound
effect’ which implies that giving any empathy
at all might be determined or undermined by
the helpers’ own past experiences. Hodgson
(2006) acknowledged that the anxiety felt by
healthcare workers coming into contact with
people living with HIV and AIDS (PLWHA) has
been recognized in numerous studies. There
is often an amplified notion of threat and a
worldview fuelled by stereotypes, which
inevitably leads to negative attitudes and
stigmatization. Using an ethnographic
approach which included a 14-month period
of observation and 31 semi structured
interviews, and, collecting data for the years
2000 and 2001 in a large teaching hospital in
the United Kingdom where the caregivers had
a high level empathetic approach
accompanied by close engagement with the
client group concluded that using nursing staff
specially prepared for the care of PLWHA could
be the most effective way to minimize stigma
and discrimination against this client group
in the healthcare sector. Fox et al. (2009)
found that doctors who had experienced a
significant health condition believed that they
felt more empathy, particularly toward those
patients who had a similar health condition.
In turn, this empathy led them to use more
self-disclosure with their patients and to work
in more empowering ways. Lin etal. (2013)
in their study aim to investigate health care
providers’ empathy levels and its association
with avoidance in providing service to patients
living with HIV/AIDS (PLWHA) in China. A total
of 1760 health service providers were
randomly sampled from 40 county hospitals
in two provinces of China. Using a self
administered questionnaire, participants’
demographic characteristics, work history,
empathy level, and avoidance attitudes toward
PLWHA were collected in a cross-sectional
survey. Empathy was higher among
participants aged 31–40 years, those who had
an associated medical degree, and those who
had served in the medical profession for less
than 20 years. Nurses, younger providers, and
providers with lower education tended to
avoid contact with PLWHA. Multiple linear
regression model showed that a higher level
of empathic attitude toward patients was
significantly negatively associated with
avoidance attitude toward PLWHA. Service
providers’ empathy level plays an important
role in providing quality care to HIV-infected
patients. Future stigma reduction interventions
should cultivate empathy as a platform for
understanding, effective communication, and
trusting provider–patient relationships. PLWHA
could potentially benefit from attitudinal
change in medical settings.Kumar et al.
(2015) conducted an in-depth interview and
focus group discussions with members of
established support networks to examine the
pervasive HIV-related stigma in India and its
impact on People Living with HIV/AIDS (PLHA)
in Tamil Nadu. The stigma surrounding HIV in
India is enhanced by taboos related to modes
of transmission and societal attitudes towards
certain groups especially sex workers. Several
effective coping strategies include clear
knowledge and understanding of HIV, social
support and family well-being, selective
disclosure and participation in positive
networks. This study also informs culturally relevant interventions aimed at reducing
stigma and enhancing the coping mechanisms
of PLHA in India to promote their well-being
and integration into society.Busza et. al.
(2018) showed that the reliance on community
health workers (CHWs) for HIV care continues
to increase, particularly in resource-limited
settings. To assess CHWs’experiences
delivering the intervention, they conducted
longitudinal, qualitative semi-structured
interviews with all 19 CHWs at three times
during implementation. CHWs expressed
strong motivation, commitment and job
satisfaction. They considered the intervention
acceptable and feasible to deliver, and levels
of satisfaction was foung to be positively
related to empathy. Nugroho et al. (2020)
explored the perspectives of men who have
sex with men (MSM) and transgender women
(waria) on an outreach approach promoting
HIV testing in Indonesia. Semi-structured
i nterviews were conducted with 32
participants. This research revealed positive
experiences with outreach workers (OWs) who
were seen as key motivators for accessing
HIV testing and care. Clients valued the
accessible HIV information provided by OWs
and emphasized the importance of face-to
face contact, particularly for waria. They
suggested that outreach should be more
engaging incorporating activities that foster
professional and life skills while utilizing
positive framing around HIV prevention. The
study highlights the need for tailored outreach
strategies addressing the diverse social and
health needs of MSM and waria. Building trust
between clients and OWs is essential for
effective service engagement and retention
in HIV care.Park et. al. (2020) through their
study explored the nature of emotional
expressions found among patients new to HIV
care, how HIV clinicians respond to these
expressions, and predictors of clinician
responses. Patient-provider encounters were
audio-recorded, transcribed, and coded using
the VR-CoDES. They categorized patient
emotional expressions by intensity (subtle
‘cues’ vs. more explicit ‘concerns’), timing
(initial vs. subsequent), and content (medical
vs. non-medical). Emotional communication
was present in 65 of 91 encounters. Clinicians
were more likely to focus specifically on
patient emotion for concerns versus cues and
were less likely to provide space when
emotional expressions were repeated,
medically-related, and from African American
patients. They concluded that the potential
areas for quality improvement include raising
clinician awareness of subtle emotional
expressions, the emotional content of
medically-related issues, and racial
differences in clinician response.According to
study by Iryawan et. al. (2022), in Indonesia,
people who inject drugs (PWID) face
significant challenges in accessing HIV care,
often due to late diagnoses, delayed
treatment initiation, and poor retention in
care, leading to high morbidity and mortality
rates. Contributing factors include legal and
systemic barriers, alongside stigma and
distrust towards healthcare services. To
address these issues, conducted a community
led qualitative study involving in-depth
interviews with 20 participants including PWID
living with HIV, peer support workers, and
service providers in Jakarta and Bandung. The
study revealed unanimous support for peer
support initiatives were seen as instrumental
in improving access to HIV testing, linkages,
referrals and adherence to antiretroviral
treatment. Participants elaborated about
various benefits of peer support, such as
enhanced HIV awareness, emotional backing,
assistance in navigating healthcare systems,
and fostering trust in services. These findings
depicted the critical role of peer support in
promoting engagement with HIV care for PWID
in Indonesia. The study calls for increased
prioritization of peer support interventions to
connect at-risk populations with essential health services.
CASE STUDY OF A WIFE: FROM DESPAIR
TO STRENGTH
A middle-aged woman of 45 years old served
as an outreach worker for an organization in
Punjab dedicated to tracking and counselling
individuals living with HIV. Her unwavering
commitment for guiding patients was
commendable given the fact that she was
working throughout day at the modest salary
of rupees 11,000. Her profound empathy
stemmed from her own experience as an HIV/
AIDS patient having endured the condition for
more than twenty five years. However, she
shared that her journey was not without
tribulations. At the age of twenty, she was
thrust into this harrowing reality and was
devastated to discover that her husband who
worked as a truck driver was living with HIV/
AIDS and soon learned that she had contracted
the virus from him. She further shared that
the situation worsened when her husband
succumbed to the disease and her in-laws
subjected her to cruel discrimination by
isolating her and refusing to share meals
prepared by her. She left their home
overwhelmed by this treatment and returned
to her parents feeling desolate and devoid of
purpose. In her despair, she started
questioning the rationale of her existence and
wondered why such misfortune had befallen
her believing she had committed no
wrongdoing. During this tumultuous phase, a
cousin encouraged her to shift her perspective
from negative to positive. With the support of
her mother, he made her realise that she could
play a pivotal role in the transformation of
lives of others suffering from the same. They
inspired her to reclaim her life for herself and
for those who believed in her potential. With
their encouragement and support, she decided
to overcome every obstacle in her path and
remained determined to meet the
expectations of her supporting family
members. She also sought alternative
treatments in 2002, invested close to thirty
thousand rupees in ayurvedic treatment which
unfortunately yielded no improvement.
Disheartened by the available treatments, she
turned to an Antiretroviral Therapy (ART)
Centre seeking stability, where she began to
feel a sense of balance. She later found
employment at a toy shop, deriving joy from
the laughter of children and the satisfaction
of their parents. It seemed as though her life
was finally on an upward trajectory until a
neighbour disclosed her HIV status leading to
her dismissal from the job. She reveals that
it was a difficult phase as again found herself
engulfed in uncertainty.However, life had
other plans. She learned of a vacancy for an
outreach worker at an organization while
collecting her medication from the ART
Centre. She was encouraged by her mother
and cousin to apply for the job. Ultimately,
she secured the position which allowed her
to connect with many individuals living with
HIV. Inspired by her own journey and the
stories of others, she realized her capacity to
effect change through tracking, counselling
and guiding patients. This newfound purpose
became essential at a time when she teetered
on the precipice of hope and despair. Today,
she is fulfilled in her role dedicating her heart
and soul to improve the lives of those affected
by HIV.She affirms that dedication is the result
of her struggles and she is relentlessly
working to express her gratitude and transmit
an indomitable will to live and learn in others
like her. She acts as a beacon of hope for
those who had either lost faith or were
teetering on the brink of despair. Her journey
is profoundly inspirational demonstrated by
resilience and positivity despite the challenges
life presented. Interacting with her made us
convinced that her vibrant aura imbued with
positivity and she has the power to impact
lives.
CASE STUDY OF A YOUNG ATHELETE: A MAN
LIVING ONCE IN THE DARK LEADINGOTHERS
TOWARDS THE LIGHT
A young 24-year-old youth from Punjabhaving
attractive attributes including tall height,
beautiful turban, well-groomed moustaches,
polite tone, glooming eyes, well-mannered
etiquettes, muscled body and perfect physique
was the one who has been serving Care and
support centre since one and half year
profoundly. An informative and productive
discussion between the researchers and Care
and support centre outreach workers was
continuing when he was asked by the
researcher, “What made you join Care and
support centre and how is your experience?”
Nobody was prepared for what his answer
professed. It was unexpected and shocking
as well. He answered the question very
undauntedly that he is HIV Positive, and this
has inspired him to work with Care and
support centre. There was not even the
slightest hesitant tone in his voice which
reflected his acceptance and positive approach
towards the status of HIV Positive.He revealed
that he was a young 18-year-old Kabaddi
athlete pursuing diploma in Physical
education. As he was a very good athlete he
had won a bike, many medals and laurels with
his outstanding performance in Kabaddi
tournaments. In 2017, during a hospital visit
for some ailment hegot the shock of his life
as he was diagnosed with the HIV Infection
in 2017. He revealed that at that time he felt
that all he had was lost and nothing can repair
the void that has been created in his life. In
his words, “my heart ached and brain was
unable to respond to the situation”. The
heaviness of thoughts gave birth to suicidal
thought. Soon, this thought was changed into
reality and he attempted suicide in 2017. He
now believes that it was the grace of God that
he was unsuccessful in giving up his life with
his own hands. His parents tried to help him
with their love, care and compassion which
convinced him to take the treatment of HIV
but his hope and actions were not consistent
all the time. He was among the lost to follow
up patients at Antiretroviral therapy Centre.
As the care and support centre he was going
to, kept keen eye on follow up patients who
fail to report back, he was traced and was
counselled well. Through them he also got to
know about the vacancy in Care and support
centre as the Outreach Worker. He applied for
the vacancy and got selected, which acted as
a turning point in his life. He took up this job
to get involved in productive tasks to avoid
indulging in the negative thoughts that
constantly pushed him to the deep dark world.
Eventually, he started working on the ground
and realised he is more fortunate than most
of the HIV infected population. He felt inspired
by his participation and the protagonist role
he was playing in people’s lives. He got
involved in this profession whole-heartedly to
bring a positivity in the lives of other patients.
Now, he is also pursuing a Bachelor of Arts
simultaneously with his profession. Even the
meagre salary of rupees13000 is not a
concern for him as he thinks that all his good
deeds will bring him good health and a good
future. Now he is considered at his workplace
as a role model who holds the hands of HIV
positive patients in the dark and guides them
to the light.
CASE STUDY OF A TRANSGENDER WOMAN:
DANCING THROUGH ADVERSITY
In her late twenties, a transgender woman in
Punjab identified as she found joy in dancing
and singing at auspicious occasions, such as
for a newborn, in lohri celebrations and
weddings. She bestowed blessings upon
newborns and newlyweds with genuine
warmth. During this vibrant period, an NGO
organized an HIV/AIDS testing camp in 2009
near her locality. She decided to undergo
testing alongside others in her community as
she was aware of her vulnerability due to her profession. Her world shattered when she
received the news of her HIV-positive status.
She reveals that it felt like an unbearable
addition to the discrimination and ridicule she
faced because of her sexuality. She struggled
to maintain hope as the virus took a toll on
her physical health and emotional well-being.
However, her mother and siblings remained
steadfast in their desire for her to live a life
filled with joy. In the moments of thoughts
and reflection, she often wished that her
father had not passed away at a young age.
Then perhaps she would not have been
compelled to pursue sex work as she believed
that the virus had been transmitted through
encounter with HIV-positive clients. Her family
came in support and encouraged her to take
treatment. Finally she embarked on a journey
of treatment at an antiretroviral therapy
centre with the support of her family and the
compassionate counselling from the NGO staff.
She diligently followed her treatment regimen
leading to a gradual improvement in her
condition which allowed her to continue her
work. Finally she aspired to inspire others
driven by a newfound purpose and applied for
the position of outreach worker for HIV and
her prior education led to her successful
appointment. She now reveals that the sense
of accomplishment in serving others
invigorated her spirit. She now passionately
counsels individuals and encourages them to
pursue treatment. She is also actively involved
i n spreading awareness for safe sex
practices. She further reveals that even amid
mockery by many in the society and her
personal hardships such as the loss of her
mother, she persevered and later moved in
with her paternal uncle while supporting her
partner through health struggles. She reveals
that she had decided to move in with her
paternal uncle after her siblings got married
and settled. Her partner lived with them for a
few years but eventually chose to return to
his own family due to deteriorating health from HIV.While talking about support of family,
she shared that during a difficult period
marked by partial hearing loss and speech
issues from the virus, her sister stood by her
side, offering support and solace. She also
reveals that throughout this, she remained
dedicated to her role as an outreach worker,
and for them, her energy and passion never
waned. She continued to sing and dance at
events while fulfilling her outreach
responsibilities undeterred by her modest
salary of rupees 10,000. Her unwavering zeal
and enthusiasm for both (entertainment as a
profession and outreach as a social
responsibility) illustrate a remarkable blend
of passion and compassion while serving as
an inspiration to all who encounter her
journey.
GENDER AND HIV
The detailed analysis of all three case studies
reveals that the challenges related to their
HIV status are identical in all three. The
differences based on gender roles, were not
affected by HIV status in the current study.
The main challenges were:
Stigma and Discrimination: All three
individuals faced significant stigma related to
their HIV status. The woman experienced
isolation from her in-laws, the young man
dealt with societal perceptions of masculinity
and vulnerability, and the transgender woman
faced discrimination due to her sexuality. Each
overcame this stigma through personal growth
and community support.
Mental Health Struggles: The young man
struggled with suicidal thoughts after his
diagnosis, while the transgender woman faced
depression and feelings of despair. Their
journeys illustrate the importance of mental
health support and the power of community
in fostering hope and resilience.
Socioeconomic Challenges: Despite modest
salaries, all three individuals found meaning
in their work. Their commitment to helping
others outweighed financial concerns,
showcasing their desire to contribute to
society despite economic limitations.
Health Management: Each person
navigated the healthcare system seeking
t reatment and support. The woman
transitioned from Ayurvedic treatments to
Antiretroviral Therapy, which highlighted the
importance of effective medical care. The
young man also pursued consistent treatment
after initially falling out of the healthcare loop.
Role of Family and Support Systems:
Family played a crucial role in their journeys.
The woman received support from her cousin
and mother, the young man was encouraged
by his parents, and the transgender woman
had her family rally behind her after her
diagnosis. This support was vital in helping
them reclaim their lives.
EMPOWERMENT THROUGH ADVOCACY Each
individual transitioned from being a patient
to an outreach worker. This role not only
allowed them to help others but also
empowered them by transforming their own
experiences of hardship into tools for advocacy
and support. It helped them in two main
ways:
Overcoming Past Trauma: The transgender
woman particularly navigated her trauma
related to her profession and loss of family.
Her journey illustrates resilience in the face
of a challenging past, emphasizing healing
and personal growth.
Community Impact: They aimed to uplift
others in similar situations, breaking the cycle
of despair and providing guidance by
becoming outreach workers. Their stories
serve as beacons of hope for those facing
similar struggles.
CONCLUSION
These case studies exemplify how individuals
can rise from adversity and become agents
of change in their communities. Their stories
demonstrate how personal journeys can
inspire hope and resilience which tend to
transform not only their own lives but also
those of the communities they serve. Each
individual’s narrative reveals the multifaceted includes stigma,
mental health struggles, socioeconomic
hardships and the pivotal role of family
support. Their transformative journeys exhibit
how personal adversity can lead to
empowerment and community impact apart
from fostering hope and change within their
communities while reinforcing the importance
of empathy.
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Reduction Journal, 19(16). https://
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Conflict of interest: None
Role of funding source: None
ISSN: 2582-1393 (Online)