Chapter 1

INTRODUCTION

Health is a serious concern for every society. And every human community has its own
believes and practices for health, disease and treatment. From the primitive times
onwards human beings have been trying to control diseases. The medicine man, the
priest, the herbalist, the shaman, and the magician all tried in various ways to cure
diseases and hence bring relief. Medicine was dominated by magical and religious belief
and it was the part of traditional culture and civilization. Normally the health, medicine
and treatment are taken care of by medical sciences in modern society. However, people
do not accept the modern treatment practices and expert medical advice due to various
cultural, social and economic reasons. Health is therefore definitely a concern for social
sciences too.

The term HIV denotes Human (isolated to the human species) Immune-Deficiency
(lacking the ability to the fight off infectious agents) Virus (a disease causing agent); and
AIDS denotes Acquired (must do something to contract) Immune (ability to fight off
infectious agents) Deficiency (lack of) Syndrome (Cluster of symptoms that are
characteristics for a disease). AIDS is a modern epidemic, which was first scientifically
detected in the United States in 1981 and no country today has escaped the scourge of
this disease as the HIV/AIDS has been officially reported by most of the countries. In
India, first positive case was detected on April, 1986 in Madras among the female sex
workers (FSWs). But the first AIDS patient was identified in 1987. The present study
explores the public awareness campaigns on HIV/AIDS and tries to understand how the
publics1 in Gujarat engage with the risk of HIV/AIDS. The counsellor-client interaction
during counselling sessions is the special micro-sociological site selected here for
exploring how the knowledge flows between the expert and layperson. The present study
tries to understand the socio-cultural barriers which affected the process of counselling.
Also to the researcher’s endeavour is to understand the role and functions of Integrated
Counselling and Testing Centre (ICTC) as part of the wider awareness programmes in
Gujarat on the risk of HIV/AIDS.

1
The study uses the term in its plural form to indicate the internal heterogeneity of the public in
India/Gujarat.
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1.1 AIDS Awareness Campaign in Gujarat

As a consequence of industrial development, there are serious possibilities for the spread
of HIV/AIDS in Gujarat People are migrating to Gujarat from various regions of India
for employment. Similarly people of Gujarat also show a high tendency to migrate to
other parts of the world. I such situations, individuals may choose to seek sex outside the
marital relationship, increasing the risk of HIV/AIDS. The first AIDS patient in Gujarat
was reported in 1986 at Ahmedabad Civil Hospital. Then after HIV/AIDS has
progressively increased in various districts of Gujarat. Ahmedabad city has the highest
HIV/AIDS rate in Gujarat followed by Surat, Rajkot, Jamnagar, Vadodara, and Junagadh
respectively.

To identify the seriousness of HIV/AIDS, Government of Gujarat formed the State AIDS
Cell (SAC) in December 1992 for implementation of phase-I of the National AIDS
Control Programme under the Resolution of 13th July, 1993 of the state Family Welfare
Department. The implementation of the program was done by SAC in accordance with
the guidelines of the National AIDS Control Organization (NACO) and the approval of
the State Empowered Committee constituted for the purpose at the State level.

With a view to ensure rapid and effective implementation of the programme, the
involvement and collaboration of NGOs for AIDS prevention was sought after by the
government. The State AIDS Empowered Committee decided to convert the existing
State AIDS Cell into a registered society under the resolution of 27th August, 1998.
Government of India had also advised to constitute State AIDS Control Society for
effective implementation of the programme, especially the second phase beginning from
April 1999. Since then National AIDS Control Programme is being implemented through
the State AIDS Control Society (GSACS). There are many programs conducted by
government for prevention and control of HIV/AIDS in Gujarat. The main programs in
Gujarat are: 1. Targeted Intervention (TI), 2. ICTC, 3. STI Care Services, 4. Blood Safety
Programme, 5. Information, Education & Communication, 6. Red Ribbon Club
Programme, 7. Health Education and Lifeskill Programme (HELP), 8. Link Worker
Scheme (LWS), 9. Care, Support and Treatment: Anti Retroviral Therapy (ART) Centre
and Link ART Centre (LAC) and 10. Community Care Centres (CCC). All these
programs are aiming at HIV/AIDS awareness, prevention and control. But ICTCs are
playing a key role in awareness, prevention and control of HIV/AIDS.

2
1.2 The Research Problem

In many cases the person may not be even aware of their HIV status and may act as
person carrying the infection to their partners. Three factors influence an individual's risk
of contracting HIV infection — cognitive, attitudinal and behavioural. Cognitive factors
relate to how and what individuals know about sex and sexuality, and their ability to
identify risk and understand information vital to risk reduction. Attitudinal factors
include people's feelings about situations, others and themselves. Behavioural factors are
those that emerge from the cognitive and attitudinal i.e. how people act and what they do
in the light of what they know and feel. The behavioural aspect of individual risk also
includes the skills of individuals regarding HIV risk and risk reduction, such as the
ability to use condoms consistently and correctly and/or to negotiate their use with a
sexual partner (UNAIDS 1999).

The present study explores the often problematic relationship between Counsellors and
‘clients’. Counsellors have scientific/expertise knowledge and clients/citizens have non-
scientific/ indigenous/ lay knowledge. Lay public are not aware of scientific knowledge
about particular issues. They do not easily engage with scientific knowledge because of a
friction created between the expert knowledge and lay-knowledge. People have their own
indigenous and lay knowledge about particular issues, based on every day observations
and experiences. Scientists should not ignore this knowledge. If scientists ignore the
knowledge of lay people, they might not positively respond to expert medical advice.
Therefore it is important to have better communication models for public communication
of science that take the citizen-public and their everyday life experiences and knowledge
seriously. From this point of view, ICTCs offer such a new possibility of public sharing
of scientific knowledge and expert advice regarding the risk of HIV/AIDS.

The present study has focused on the role of ICTCs in public engagement with the risk of
HIV/AIDS in Gujarat. There are many researchers who have done meticulous work in
the area of HIV/AIDS from various aspects in global and Indian context2, but a very few

2
A selected few are, Aggleton and Homans1988, Brockerhoff and Biddlecom 1999; Cameron 1993; Karla
and Karla 1996; Mann and Tarantola; Danial and Netter 1994; Panda 2002; Treichler 1999; Turner 1994;
Zeichner 2006.

3
studies are available on the public engagement with the medical science in negotiating
the risks of HIV.

1.2.1 Studies on public engagement with health/science

Wynne (1996) focuses on public interaction between hill sheep-farmers of the Lake
District of Northern England and scientists. His study is mainly based on in-depth
interviews with affected farmers and others provided data for analysis of the factors
influencing the reception of scientific expertise by this sub-population. They experienced
radioactive fall-out from the 1986 Chernobyl accident which contaminated their sheep
flocks and upland pastures. It has been revealed that trust and credibility are major
contextual factors influencing the uptake and understanding of science massages, and the
public perception of risk.

Irwin et al. (1996), focus on how specific community affected by hazards and pollution.
It is also consider public reactions to science. This study was conducted in the two
selected area which affected by hazard issues. It is revealed kinds of technical
information offered by different social group in different situations. It suggests that
public knowledge is generated by the social and cultural processes. Main method of this
study is a small-scale doorstep questionnaire followed by a series of semi-structured
interviews. Data of this study is based on interview and questionnaire. It is focus on
responses to the hazards of the local chemical industry and on the information sources
that exit.

There are studies like Lambert et al. (1996) that focused on patient's sense of the medical
sciences from the public understanding of science perspective. With the help of
interviews with the stakeholders, this study looks at the patients’ technical knowledge
about blood lipid level. The study propose that most people apply their own knowledge
about personal and family medical histories to make sense of new medical information
for management of ‘disembodied' disorder.

Michael (1996) observes that people do not easily accept knowledge about scientific
procedures, processes and scientific facts, they can reflect upon the epistemological

4
status of that knowledge. He also argues that this reflection can directly affect their
responses to science and scientific experts. The aim of this paper is to explore the
discourses of ignorance that people mobilize when reflexively commenting upon their
lack of scientific knowledge. This paper is based on survey analysis of the contents of the
public understanding and attitudes towards science with the theory of social
representations and the ‘mental models' approach.

Macdonald (1996) suggests that the role of science communicators is important in the
public understanding of science, and science communicators act as authors of science for
the public. The main objective of this study was to look at the way in which science is
represented in the final exhibition and second aim was to find out this in relation to both
the making of the exhibition and its reception by museum visitors. This is an
ethnographic study. Researcher has spent much time with the six women museum staff
who constituted the exhibition team. Researcher also studied the stacks of paperwork that
had accumulated in the ‘Food' offices, attended exhibition-relevant meetings elsewhere in
the museum and interviewed staff in the science Museum and other museums and science
centres.

Rothman et al. (1996) suggest how science is contextualized by academic scientists,

members of some environmental organizations, industrialists and administrators, and
distinguishes between the various, and largely disparate, ‘understandings' of strategic
science held and enacted in the civil sector of British science. It is based on an
investigation conducted in the context of policy changes at the political level which have
borne most directly in recent years on the development of science and technology policy
in Britain.

As various chapters of the book Misunderstanding science? The public reconstruction of

science and technology edited by Irwin and Wynne (1996) demonstrate, one important
dimension of the contemporary public understanding of science is the heterogeneity of
scientific knowledge and its understandings among a wide range of actors including the
experts, practitioners, lay persons and social groups. This volume provides mainly
qualitative insights into the problem of public communication of science.

In the mid-1990s, the Kerala state faced fever epidemics and solution for this epidemics
government establishing fever clinics. George (2011) argues in the context of Kerala that
the institutionalization of fever as a disease and as a major public health issue has

5
occurred through two sets of practices: first, at the societal level by interactions among
health professionals, the media, organizations representing various systems of medicine,
and the general public; and second, curatively at the clinic while rendering fever care,
including diagnosis and treatment. The author points out that despite the discursive
prevalence of dominant system of allopathic medicine, the practices at the ‘fever clinic’
are not consistently based on an allopathic understanding of physiology and pathology
but rely on skilled trial-and-error which incorporates plural medical traditions. First part
of this article explores fever as a major symptom. Second part focused on ‘fever talk', the
way fever was deliberated in the public sphere. It has revealed how fever as a risk
emerges through the public discourse. This indicates that risk is not something already
existing, it is rather discursively framed.

These studies focused on different scientific issues and understanding of general/lay

public about issues from various methodological standpoints. The present study
emphasizes particularly the scientific understanding about HIV/AIDS in general public
who have got advice from counsellors at ICTC located at C.H.C. and District level
hospitals. The study employs contextualist model proposed by Brian Wynne as its
conceptual framework. I have utilized in-depth interviews as the major method of data
collection.

1.2.2 Studies on HIV/AIDS as risk

There are several studies that examine some aspects of public response to HIV/AIDS
risk, and these studies are the focus of this section. Sridhar (2011) has studied awareness
of HIV/AIDS among the Mathadi workers and truck drivers in Mumbai. This study based
on geographical context. The broad objective of the study is to look at personal
vulnerability factors in the context of HIV/AIDS infection among the two groups: truck
drivers and mathadi workers. The study aims to bring out descriptive information
regarding the behaviour practices of the two groups which can be compared. The study
tries to bring out the risk perception among the two groups and the factors that may
influence this perception. This study attempts to examine the vulnerability factors at two
levels - firstly, personal vulnerability factors and correlation with socioeconomic factors
(age, marital status, education, and income), risk behaviour practices, exposure to mass
media and social interactions, and secondly, factors creating vulnerability at the place of
destination. The study is based on mixed research design i.e. largely quantitative
supported by a qualitative method. The first phase of the study was based on data
6
collected from a sample of 300 truck drivers and 300 mathadi3 workers using interview
schedule.

Sayantani (2009) studied vulnerability and HIV risk of prison inmates in Maharashtra.
This PhD study attempted to explore the knowledge, attitude, understanding of HIV
prevention and vulnerability and HIV risk of prison inmates. The broad objective of the
study is to understand the knowledge, attitude, understanding of HIV/AIDS prevention of
prison inmates and their vulnerability towards HIV/AIDS. The specific objectives are: (a)
To study the socioeconomic characteristics of the prison inmates; (b) To understand
knowledge of HIV/AIDS among prison inmates; (c) To measure attitude of prison
inmates towards people living with HIV/AIDS and their understanding of HIV/AIDS
prevention; (d) To examine the vulnerability and HIV risk factors of prison inmates; and
(e) To suggest ways and means to evolve effective prison health policy. The sample of
the study consisted of 300 prison inmates (men, women, convict and under trial) from
four central prisons and two district prisons in Maharashtra state. The primary
quantitative data from the 300 prison inmates was supported by qualitative data from 10
HIV positive prison inmates, 48 prison inmates not having HIV/AIDS, 30 prison medical
staff and 30 prison staff. Findings of this PhD study suggests that specific ways and
means should be evolved to formulate effective prison health policy focusing on
educational needs and intervention priorities related to HIV/AIDS in prisons in India.

Jennifer (2012) studied utilization patterns of health services by widows living with
HIV/AIDS in Manipur. This study sought to understand the utilization pattern and
contributing factors related to health service utilization by widows living with HIV/AIDs
in Manipur. Objectives of this study are: (a) To find out the perceived health needs of
HIV infected widows; (b) To study the health seeking behaviour of the HIV infected
widows in relation to their perceived health needs; (c) To find out the factors affecting
the health care utilization pattern of the HIV infected Widows and (d) To explore in
detail the impact of stigma on the utilization of health services of the HIV infected
widows. For the purpose of this study, NGOs working among the widows living with
HIV/AIDS were approached and 13 NGOs participated in the study. Thus a list of 1500
widows whose husbands had died of HIV/AIDS was generated from seven of the nine

3
Mathadi is derived from the Sanskrit word ‘matha' (Head) and denotes those who carry the load
on their head. These workers known as head porters, bearers and stackers on shipping docks and
in trucks all over the country.

7
district of Manipur. The finding showed that the level of perception of the need for health
services differ from individual to individual. Among some respondents there is a lack of
awareness in terms of their health and so do not perceive the symptoms to be important
for seeking treatment. And even though they are aware, financial difficulties, lack of time
and distance became barriers to access the services. Financial problems continue to prove
a major constraint for both in the urban and rural areas.

Pillai (2011) studied Adolescent Girls' knowledge about and effectiveness of the
HIV/AIDS Awareness Programme. This is a Sociological Study of Adolescent of Bhilai
City. This study is an attempt towards exploring the various aspects regarding knowledge
and effectiveness of HIV/AIDS among adolescent girls. Objectives of this study are: to
assess the socio cultural background of adolescent girl of Bhilai; to assess the knowledge
of adolescent girls regarding awareness of HIV/AIDS (human immune deficiency
virus/acquired immune deficiency syndrome); to study the status of HIV/AIDS (human
immune deficiency virus/acquired immune deficiency syndrome) awareness programme
of adolescent girls in Bhilai city and to find the factors influencing the knowledge scores
on HIV/AIDS (human immune deficiency virus/ acquired immune deficiency syndrome)
awareness of adolescent girls.

Rutenberg et al. (2005) reviews field experiences with provision of family planning
services in prevention of mother-to-child transmission (PMTCT) programs in ten
countries in Africa, Asia and Latin America. Family planning is a standard component of
most antenatal care and maternal-child health programs within which PMTCT programs
are offered. Yet PMTCT sites often miss opportunities to provide HIV-positive clients
with family planning counselling. Demand for family planning among HIV-positive
women varies depending on the extent of communities' openness about HIV/AIDS,
fertility norms and knowledge of PMTCT programs. In Kenya and Zambia, no
differences were observed in use of contraceptive between HIV-positive and HIV-
negative women in the study communities, but HIV-positive women have more
affirmative attitudes about condoms and use them significantly more frequently than do
their HIV-negative counterparts. In the Dominican Republic, India and Thailand, where
HIV prevalence is low and sterilization rates are high, HIV-positive women are offered
sterilization, which most women accept. This article draws out the policy implications of
these findings and recommends that policies be based on respect for women's right to
informed reproductive choice in the context of HIV/AIDS.

8
Sarah et al. (2010) studied providers' views concerning family planning service delivery
to HIV positive women in Mozambique. This study explores challenges and obstacles in
providing effective family planning services to HIV-positive women as described by staff
of maternal and child health (MCH) clinics. It draws upon data from surveys of service
providers carried out from late 2008 to 2009 in 52 MCH clinics in southern Mozambique,
some with and some without HIV services. In all clinics, surveyed providers reported that
practical, financial and social barriers made it difficult for HIV-positive clients to follow
protocols to prevent mother-to-child transmission of the virus. Likewise, the staff was
sceptical of their seropositive 4 clients' ability to adhere to recommendations to cease
childbearing and to use condoms consistently. Providers' recommendations to HIV-
positive clients and their assessment of barriers to adherence did not depend on
availability of HIV services. Although integration of HIV and reproductive health
services is advancing in Mozambique, service providers do not feel that they can
influence the behaviours of HIV-positive women effectively.

Frega et al. (2010) seeks to organize current thinking by reviewing the existing literature
on food insecurity and HIV/AIDS and describing the complex interactions between them.
Based on literature review, the paper proposes a framework to understand the linkages,
distinguishing four types of interventions to address them. The four types of interventions
are containing HIV and preventing AIDS through comprehensive treatment regimes that
include nutritional support; mitigating the effects of AIDS through support; providing
HIV-sensitive, but not HIV-exclusive, safety nets at the individual, household and
community levels; and limiting the exposure to risk through HIV prevention activities.

Mojola (2011) studied Multiple Transitions and HIV Risk among Orphaned Kenyan
Schoolgirls. This study employs qualitative data from Nyanza Province, Kenya, to
explore pathways to HIV risk among orphaned and non-orphaned high-school girls. It
shows how simultaneous processes such as leaving their parental home, negotiating
financial access and relationship transitions to produce disproportionate risk for orphaned
girls. The role of financial provision and parental love in modifying girls' trajectories to
risk are also explored. A testable theoretical model is proposed based on the qualitative
findings and policy implications are suggested.

4
Seropositive is a medical term that refers to an instance where a blood serum returns a positive match for
a disease. This term is usually used in reference to viruses such as AIDS.

9
Sarkar (2011) studied social and economical implications of HIV/AIDS Evidence from
West Bengal. This study based on household level' field survey in West Bengal State in
Indian context. This study suggests that poverty and lower level of human capital provide
the basic initiatives for both rural-urban migration and risky occupational choice for
household's income and thus contributes to the spread of HIV/AIDS. Also, the
HIV/AIDS epidemic of those economically and socially disadvantaged households leads
to the consequence of absolute economic and social poverty; the benefit of actions by
government or non-government organizations is insignificant for them. This paper
attempts to examine socio-economic reasons and implications of PLWHIV/AIDS
(person living with HIV/AIDS) and to the benefit of action provided by government and
non-government organizations to help them in the context of a field survey at household
level in West Bengal State in Indian context.

Jothivenkatesan (2009) studied vulnerability of prostitutes to HIV/AIDS and other health

hazards. This study is a Sociological study in Pudukkottai District. This study brings out
the practices of commercial sex workers, the type of customers, the role of intermediary
and other related people. It contribute to reference to Pudukkottai District. Main
Objectives of this Study are: To study the social environment of prostitution (past and
present), to study the social aspect of prostitution, to Study the income, expenditure and
savings pattern of commercial sex workers, to find out the expectations of commercial
sex workers, to list out the health conditions of prostitutes and to explore the awareness
of HIV/AIDS among the sex workers and the role of NGOs in it. The women of this
village panchayat are noted for this activity in spite of the State and Central
Government's effort to rescue the women of this region from prostitution. The obstacles
in preventing commercial sex activity still remain unknown, not only to the Government
but also NGOs working in the region. NGOs could only propagate against HIV/AIDS
preventive measures but could not stop the commercial sex activity of women in
Viralimali. Out of 160 respondents, all being commercial sex workers, have openly
confessed the inevitability of Commercial sex Work in their community. They do have
justified their work referring to family, poverty, sudden family crisis, deceived by male
lovers and so on. These social causes though referred by the respondents, there is hidden
fact regarding patriarchy, capitalism and women's status. This study brings out the
pathetic conditions of commercial sex workers. They are highly exploited, physically by
the customers, economically by brokers, which results in psychological disorder and
infectious diseases.
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Shah et al. (2009) carried out extensive review of literature on different published and
unpublished reports to measure the gender disparities in HIV prevention and care. The
study revealed that, women in rural India are profoundly disempowered to seek HIV
services due to several reasons. Gender dynamics continues to influence the access to
HIV prevention, diagnosis and treatment services. Policy and programmes have not fully
addressed the clinical services through a gender lens which might care needs more focus
so that it meets the need of both men and women. Mainstreaming gender into HIV
programmes under National Rural Health Mission (NRHM) has also not achieved the
desired result. The study suggests training to the service providers on gender sensitivity
and HIV-related communication and clinical skills.

1.2.3 Studies on HIV/AIDS in the context of Gujarat

Nanda et al. (2010) studied media exposure, gender stereotype and contextual stigma
perceptions about HIV and AIDS, evidences from Gujarat. This study aims to analyse
the possible differential in stigma behaviour attributed to media exposure and socio-
economic characteristics of people, and understand the reasons (process) behind them.
The research questions would answer that, what are the effects of media exposure, gender
stereotype and socio-cultural factors on HIV-related stigma perceptions? What
mechanisms are involved in the process of development of perceptions among people
with elevated stigma? This article examines whether variation in media exposure and
gender would yield diverse stigma perceptions on HIV/AIDS, and finds the mechanism
behind these phenomena. It employs data from 2005-06 National Family Health Survey
(NFHS) for Gujarat, a major western state of India, Supplemented with some qualitative
information. Logistic regressions were undertaken modelling five different stigma
perceptions for women and men in varying contexts such as maintaining secrecy of HIV
infection, care and support to and service from HIV infected persons. In the first phase
of the study, the quantitative data collected from NFHS-3 of Gujarat state and analysed
by SPSS (Statistical Package for the Social Science) 15.0. In NFHS-3 total 1,24,385
women in the age group 15-49 years and 74,369 men in the age group 15-54 years were
interviewed from 29 states of India. The survey provides data on key socio-economic and
demographic indicators and includes information on several new topics such as
HIV/AIDS related behaviour, attitudes towards family life, education for girls and boys,
use of Integrated Child Development Scheme (ICDS) services, men's involvement in
maternal care and health insurance. Both quantitative and qualitative data analyses of the

11
this study indicate that media exposure, particularly to electronic media such as
Television and radio, and print media such as newspaper, has a significant and consistent
effect in influencing different stigma perceptions surrounding HIV and AIDS.

Another study by Iyengar et al. (2003) is published in two parts. In first part, give
information about geographical background and population Of Gujarat state. Total 21256
respondents have been included in this study. Data collected from FSWs, MSM, IDU,
Truck Drivers and Cleaners, Street Children, Auto Rickshaw Drivers, Taxi Drivers,
Migrant Labours, Passengers, Industrial Workers, Hotel Boys etc. Thus, in this study
collected statistical data from high risk.

Patel (2008) studied code of conduct in counselling. This study conducted in three
district Mahesana, Patan and Banaskantha of North Gujarat. Researcher has used three
techniques interview schedule, interview and observation for data collection. Researcher
has collected data from total no. of 40 counsellors. Main focus of this study is what
awareness of counsellor about code of conduct in counselling, implementation of code of
conduct in counselling; and what issues emerge related to code of conduct in counselling.

Another study by Patel (2005) was conducted in Ahmedabad city and focused on the
psycho-social problems of HIV infected persons and their family members. For data
collection researcher has selected respondents who get treatment at different government
hospitals and hospitals of NGOs. Researcher collected primary data through interview
schedule from doctors, nurses, counsellors, clients and family members of clients. This
study focused on the social status of HIV infected person (before and after infection),
economic condition (before and after infection), social relations with society and family
members (before and after infection) and also examine the reaction of family members,
doctors, nurses, counsellors to HIV infected persons for cure and treatment.

From the discussion above we can say that, most of the studies focused on the High Risk
Groups (HRGs) like Men who have Sex with Men (MSM), Female Sex Workers (FSW),
drivers (Auto Rickshaw, Truck etc.) and migrants to understand the patterns of
HIV/AIDS spread and the main factors behind the social life of HIV/AIDS. Mostly
studies collected data through interview and interview schedule from HIV positive
persons. The respondents of most of these studies are HIV positive persons who are
living with HIV/AIDS. But there are limited considerable research conducted which
focuses on scientific knowledge transfer aspect or issues related to counselling of lay

12
people. There is also a serious dearth of studies on doctor-patient interaction employing
ethnographic strategies.

1.2.4 Studies on ICTCs

The study by Weinhardt et al. (1999) focused on effects of HIV counselling and testing
on sexual risk behaviour. This study explored weather HIV counselling and testing leads
to reductions in sexual risk behaviour. This study is based on the meta-analysis included
27 published studies that provided sexual behaviour outcome data, assessed behaviour
before and after counselling and testing. Total 19597 participants involved in the study.
Findings of this study revealed that after counselling and testing, HIV-positive
participants and HIV- sero-discordant 5 couples reduce unprotected intercourse and
increased condom use more than HIV-negative and untested participants. HIV-negative
participants did not modify their behaviour more than the untested participants. This
study suggests how the sexual risk behaviour was reduced through HIV counselling and
testing. However this study fails to look at the socio cultural barriers responsible for
HIV/AIDS counselling and testing.

Marks et al. (1999) examine to compare the prevalence of high-risk sexual behaviours in
HIV-positive persons aware of their sero-status with that in HIV-positive persons
unaware of their status in the United States and to discuss implications for HIV
prevention programs. The study suggests the prevalence of high-risk sexual behaviour is
reduced substantially after people become aware they are HIV-positive. Increased
emphasis on HIV testing and counselling is needed to reduce exposure to HIV from
persons unaware they are infected. Ongoing prevention services are needed for persons
who know they are HIV-positive and continue to engage in high-risk behaviour.

The study conducted in the Kilimanjaro region of Tanzania by De Paoli et al. (2004) is
based on a cross-sectional interview survey of 500 pregnant women, complemented by
focus group discussions. This study examines factors associated with pregnant women's
expressed willingness to accept voluntary counselling and HIV-testing (VCT). Perceived
high personal susceptibility to HIV/AIDS, barriers related to confidentiality and partner
involvement, self-efficacy regarding alternative feeding methods and religion were all
shown to be associated with willingness to accept VCT. The women's acceptance of VCT

5
A couple in which one partner has tested positive for HIV and the other has not.

13
seems to depend upon their perceiving that VCT and alternative feeding strategies
provide clear benefits, primarily for the child.

Maman et al. (2002) focused Lifetime Partner Violence on HIV-Positive Women. The
study was conducted in 1999 at the Muhimbili Health Information Centre, 1 of 6 free-
standing voluntary HIV counselling and testing clinics in Dar es Salaam. Objective of
this study is experiences of partner violence were compared between HIV-positive and
HIV-negative women. The goal of the first phase of research was to define violence in
the local context; to describe the HIV testing and sero-status6 disclosure decision-making
process among men, women, and couples; and to develop the survey instruments for use
in the second phase. The first phase consisted of in-depth interviews with 15 women (13
HIV positive, 2 HIV negative), 17 men (6 HIV positive, 11 HIV negative), and 15
couples who had been through the HIV counselling and testing process at the Muhimbili
Health Information Centre. The second phase of research measured the prevalence and
identified the correlates of violence among 340 women enrolled immediately after their
HIV pre-test counselling session and before receiving test results in the post-test
counselling session. This study revealed violence is a risk factor for HIV infection that
must be addressed through multilevel prevention approaches.

Kalichman (2003) studied the South African context. Their research reveal that the
cornerstone of HIV prevention in South Africa is voluntary HIV antibody counselling
and testing (VCT), but only one in five South Africans aware of VCT have been tested.
This study explored the relation between HIV testing history, attitudes towards testing,
and AIDS stigmas. For this study 224 Men and 276 women living in a black township in
Cape Town completed venue intercept surveys; 98per cent were black, 74 per cent age 35
or younger. 47 per cent of participants had been tested for HIV. Risks for exposure to
HIV were high and comparable among people tested and not tested. Comparisons on
attitudes toward VCT, controlling for demographics and survey venue, showed that
individuals who had not been tested for HIV and those tested but who did not know their
results held significantly more negative testing attitudes than individuals who were
tested, particularly people who knew their test results. Compared to people who had been
tested, individuals who were not tested for HIV demonstrated significantly greater AIDS
related stigmas; ascribing greater shame, guilt, and social disapproval to people living

6
Either an individual tests HIV-positive or HIV-negative.

14
with HIV. Knowing test results among those tested was not related to stigmatizing
beliefs.

The uptake of HIV test results from an annual sero-survey of a population study cohort in
rural south-western Uganda had never exceeded 10 per cent in any given year since
inception in 1989, as opined by Wolffet et al. (2005). An intervention offering
counselling and HIV results at home was conducted in four study villages following the
2001 sero-survey round, and followed by a qualitative evaluation exploring nature of
demand and barriers to knowing HIV status. Data collected from annual sero-surveys and
counsellor records are analyzed to estimate the impact of the intervention on uptake of
HIV test results. Textual data are analyzed from 21 focus group discussions among
counsellors, and men and women who had received HIV test results, requested but not
yet received, and never requested; and 34 in-depth interviews equally divided among
those who had received test results either from counselling offices and homes. Results
show less appropriate for youth and couples with conflicting attitudes toward testing.

Research done by Bakari et al. (2000) in Lusaka, Zambia, took a tripartite approach to
exploring the most acceptable format and venue for Voluntary Testing and Counselling
(VCT): a community survey of attitudes towards VTC, a pre- and post-counselling
knowledge survey, and a pilot study of same-day VTC in urban antenatal care clinics. A
community survey of 181 individuals was conducted in July-August 1996 based on a
structured questionnaire. A pre- and post-VTC intervention knowledge survey was
conducted during the same period among 82 couples attending the Zambia- UAB HIV
Research Project (ZUHRP) HIV VTC centre in Lusaka. Finally, same-day HIV VTC was
pilot tested in six antenatal clinic locations during February-May 1997 and June-August
1998. The community survey revealed that 98 per cent of participants support promotion
of HIV VTC in the community and 83.8 per cent prefer the same-day testing format. The
knowledge survey revealed misconceptions about discordance within a couple and
parental transmission of HIV. Pilot testing in antenatal clinics was well received, with 84
per cent of pregnant women requesting testing and 25 per cent having positive HIV
serologies. Women with primary school or less education, those seeking antenatal care in
local clinics, and those seen before the third trimester of pregnancy were more likely to
request HIV testing. Testing and counselling for HIV were shown to be feasible and
effective in the antenatal clinic setting. Implementation of same-day HIV VTC in

15
antenatal clinics is an effective strategy to prevent vertical transmission and should be
expanded to include couples to leverage a decrease in heterosexual transmission as well.

From the literature review being carried out above, it can be concluded that there are only
limited studies on the ICTCs which focus on counsellors and ‘client' interaction. Most of
the studies focused on HIV-positive patients and their socio-economic background as
well as sexual behaviour, but there is a dearth of research on awareness and
understanding about HIV/AIDS among general publics/non-infected individuals. We can
also state that only a few studies have focused on the counselling process and the
communicative interaction between counsellors and clients.

The present research has focused on the counselling process between the counsellor and
client. This study has focused clients' engagement with counsellors during counselling
sessions. Here we also examine social and cultural barriers faced by the counsellors in
engaging with the clients. There are only a very few studies conducted on these important
aspects. The review of literature also suggests that most of the studies are based on
quantitative method, and only a limited number of researchers have employed qualitative
methodology. The present study has selected its focus as Gujarat as there is no study has
so far been done on this aspect which suggests public engagement with the risk of
HIV/AIDS in institutional context of ICTCs in the region.

1.3 Rationale of the Study

Despite mass awareness campaigns, knowledge regarding HIV/AIDS remains superficial

and misconceptions are highly prevalent. In the context of HIV/AIDS, having knowledge
implies ability to recall facts concerning causes, transmission, prevention, concerning
HIV/AIDS. It is expected that when one has the knowledge of HIV/AIDS, the
accompanying behaviour would be logical i.e. people will be motivated to practice safer
behaviour practices. The environment of denial and fear would be replaced by ability to
take informed decisions regarding behaviour modifications.

National Family Health Survey (NFHS-3) states that persons have comprehensive
knowledge if they know:

a). using a condom and having just one uninfected partner limits the risk of getting AIDS
b). that a healthy looking person can have AIDS

16
c). reject the two most common misconceptions about AIDS transmission (transmission
by mosquito bites and by sharing food).
The assumption here is that knowledge is an important indicator that will impact
vulnerability of society to HIV infection. For future intervention or otherwise
programmatic response to the epidemic would entail measurement of the knowledge of
HIV/AIDS in society. National surveys such as NFHS -3 (2005-06) have brought out this
aspect and have presented data on knowledge level among the general population. It
reports that nationwide only 17 percent of women and 33 percent of men have
comprehensive knowledge of HIV/AIDS. Misconceptions about the disease are common.
Much higher HIV prevalence rates are found among men who have more lifetime sexual
partners and among men who visit female sex workers.
It is important to study the knowledge and beliefs about HIV/AIDS as it will affect the
society. Correct information and knowledge will equip people to fight against stigma and
discrimination associated with this epidemic and encourages safer behaviour practices.
However, the flow of the knowledge is no way unidirectional, and both the scientific
expert and the lay person actively participate in the communication process to make it
bidirectional. This important aspect is often not taken into cognizance by the policy
makers and government authorities while designing public awareness campaigns.
Perception and management of risk are constructed within a socio cultural matrix where
individuals shape their behaviour, make choices and manage their risks. Risk perception
is the subjective assessment of the probability of a specified type of hazard happening
and how individuals and communities/social groups are concerned with the
consequences. Risk perception also enables them to develop coping up strategies. To
perceive risk includes evaluations of the probability as well as the consequences of a
negative outcome. The present research is contributing towards of the analysis of the
above mentioned concepts while theoretically anchored on insights from Public
Engagement with Science and Technology (PEST). It could also guide programmatic
responses in terms of identification of correct knowledge level, behaviour patterns, safer
behaviour practices, risk perception.

1.4 Nature and Scope of the Study

The broad objective of the study is how the public engage with the risk of HIV/AIDS in
the institutional context of ICTCs in Gujarat. The study aims to bring out the role and
functions of ICTC and barriers faced by counsellor during counselling. A second

17
important aspect is the concept of risk perception which is an integral component for
behaviour change that is the goal of any programmatic intervention carried out. The
study tries to bring out the risk perception in the society and the factors that may
influence this perception.

The present study seeks to understand the difficulties (problems) faced counsellors
during counselling; reactions of clients and family members of clients; treatment method
and related efforts; awareness about HIV/AIDS in persons who get counselling and
treatment of HIV/AIDS, their family members and other people; and the role of family
and society for treatment. The qualitative data that is analysed here is collected through
interviews of counsellors at the ICTCs of various districts of the Gujarat state as well as
doctors, nurses, clients and family members of clients. Individual and group discussions
with experts of working in HIV/AIDS area have been conducted for the study. Project
Directors and Staff of Gujarat AIDS Control Society, superintendents of Government
Hospitals also have been interviewed and interacted with. For this purpose ICTCs have
been chosen from various districts of the Gujarat state.

1.5 Area of the Study

The researcher has selected the Gujarat state for proposed research and the main focus of
the study is on the ICTCs. Because Gujarat is one of the most industrialised states in
India, many people are immigrant from various regions for employment and other
purposes. Single men migration level is high in Gujarat. Similarly there is a steady
outflow of Gujaratis to western and African countries. Since the researcher lives in
Gujarat and he knows local language very well, he could easily collect primary data
through interviews from between counsellors of ICTCs and other experts who involve in
HIV/AIDS awareness. The researcher is also familiar with the geography of Gujarat.
There is not any significant research done so far, which focus on barriers for HIV/AIDS
awareness as contextualist perspective in Gujarat.

1.6 Objectives of the Study:

1.6.1 Broad objective
The present study attempts to explore how the publics engage with the risk of HIV/AIDS
in the institutional context of ICTCs in Gujarat.

1.6.2 Specific objectives

● To critically asses the state-mediated HIV-AIDS awareness programs in Gujarat
18
●To study the role of ICTCs and counselling in the awareness campaign on HIV/AIDS
●To understand the perspectives of the publics/clients regarding the risks of
HIV AIDS
●To examine Social and cultural barriers faced by the Counsellors in engaging with the
clients
●To examine how the public/ clients engage with counsellors in the ICTCs

1.7 Research Methodology

1.7.1 Theoretical framework

The understanding that the public is ignorant and passive in terms of their interaction
with the scientific experts is a dominant model of public communication of science that
governs public awareness programmes and campaigns as well as research and policy
analysis conducted on these interactions. The deficit model has been widely employed in
the context of socio-scientific issues (SSI) studies (Kerr et al., 2007). This conservative
model argues that scientists are able to grasp the full complexity of socio-scientific issues
(Callon, 1999) thereby resulting dual divide between citizens and scientists concerning
the right to express one's views and the roles they are to assume in the production of
legitimate knowledge. The model argues that scientists are the ones who accumulates
scientific knowledge, conducts extensive research and tries to solve the existing social
problems (Bucchi and Neresini, 2008; Callon et al., 2001; Irwin, 2001). Under this
model, exchange between scientists and citizens is predominantly unidirectional in the
sense that public decision making is restricted and limited because of unawareness and
ignorance. Researchers inform a public that is considered as having a deficit of the
scientific knowledge needed to shed light on the issues being debated. The deficit model
has some linkages with public understanding of science as it deals with the relationship
between public, science and society.

Most of the academic work on public engagement with science is based on deficit model.
Since quantitative research has been employed in using this deficit model, it comes out
with some limitation and drawback of this model. It is not able to understand the deep
interaction between expert and non expert. So therefore it is necessary to adopt
contextual model in the thesis which is qualitative in nature more focus on micro
sociological context. This contextual model was first used by Brian Wynne (see Wynne
1995).
19
The Contextualist Perspective argues that people's understanding of science is not so
much the ability to recall large numbers of miscellaneous facts but rather a keen
appreciation of the places where science and technology articulate smoothly with one's
experience of life (Jasanoff 2000). Wynne (1992: 37) suggests that in order to properly
capture the range of knowledge domains relevant to lay attitudes towards scientific
research programmes ‘three elements of public understanding have to be expressly
related: the formal contents of scientific knowledge; the methods and processes of
science; and its forms of institutional embedding, patronage, organisation and control'.
The deficit model considers only the first two of these elements. The ways in which
people utilise their factual scientific knowledge is contextualised by the circumstances
under consideration. Public attitudes will be influenced in ways opposite to or conflicting
with the first two elements. If not, then it would appear to be nothing other than a
somewhat more elaborated restatement of the deficit model.

Yearley (2000) adds that public trust in scientific expertise as a key factor in the
contextualisation of knowledge of science. Wynne and others who have been
instrumental in the articulation of the contextualist perspective have argued that a survey-
based, quantitative approach cannot shed any useful light on this or other contextualising
forms of knowledge. In fact, it would not be an exaggeration to say that one of the central
axioms of this perspective seems to be that survey-based methods are at best procrustean
and at worst fundamentally misleading for understanding lay publics' knowledge of and
interactions with science (Wynne 1995). surveys take the respondent out of [their] social
context and are intrinsically unable to examine or control analytically for the potentially
variable, socially rooted meanings that key terms have for social actors' (Wynne 1995).

Furthermore, the idea that survey based analyses are not capable of or suitable for
demonstrating a contingent or mediated relationship between knowledge and attitude
does not bear close scrutiny. The simple deficit model holds for attitudes to science in
general, better informed respondents tend to be among the most sceptical when it comes
to ‘morally contentious' and ‘non-useful' sciences. Similarly, Bauer, Evans and Durant
(1994), in a multi-variate statistical analysis, show that the strength of the knowledge-
attitude relationship varies across Europe according to national levels of economic
advancement. However, while these studies demonstrate, through quantitative analysis,
the contingent nature of the knowledge attitude nexus, they do not focus specifically on

20
the meditational or contextualising form of knowledge as set out, however imprecisely,
by those propounding this theoretical model.

The contextualist model has been employed in the empirical case study of Gujarat in
order to understand the relationship between public and risk of HIV/AIDS, counsellor
and ‘client' interactions (based on interviews of counsellors), public engagement
programme and prevention and control of HIV/AIDS. The adoption of this model will
enlighten the empirical reality of problem confronting with the risk of HIV/AIDS. It is a
qualitative research which brings in light the awareness and misunderstanding regarding
the HIV/AIDS and the barriers which further make stunted and cripple over the spread of
scientific awareness about the HIV/AIDS. The researcher has used the contaxtualist
model and with the aid of detailed personal interviews of the Counsellors and clients the
study tries to bring all the problems of communication faced by the Counsellors. The
study particularly focuses on the micro-sociological context of interaction to identify the
barriers which block the ways for scientific knowledge of HIV/AIDS is publicly
communicated.

1.7.2 Research methods

Main focus of present research is to study the public engagement with the risk of
HIV/AIDS through interviews of counsellors at Community Health Centre level ICTC.
Present research is based on both primary and secondary data. Primary data has been
collected from Counsellors through interview. Secondary data has been collected from
NACO reports, Gujarat State AIDS Control Society (GSACS) reports, guidelines, policy
documents, NGOs reports, libraries, websites, journals, newspapers etc. Other relevant
information is collected from experts, other researchers, working in the research area.

[Link] Selection of districts from Gujarat

For primary data collection, the districts of Gujarat state have been divided into in four
categories (A, B, C and D) based on the epidemiological criteria used in the GSACS
report. In category A: More than 1 per cent prevalence among ANC in district in any of
the sites in the last 3 years. In category B: Less than 1 per cent ANC prevalence in all the
sites during last 3 years with more than 5 per cent prevalence in any HRG site (attendees
of sexually transmitted diseases (STD) clinics/FSW/MSM/IDU). In category C: Less
than 1 per cent ANC prevalence in all sites during last 3 years with less than 5 per cent in
all HRG sites, with known hot spots (Migrants, truckers, large aggregation of factory
21
workers, tourist etc) and in category D: Less than 1 per cent ANC prevalence in all sites
during last 3 years with less than 5 per cent in all HRG sites with no known hot spots OR
no or poor HIV data (GSACS, 2011-12). The districts of Gujarat state belong to four
zones. These zones are: (1) Central, (2) North, (3) South and (4) Saurashtra. For the
purpose of the present study, one district from A-category and another from D-category
in each zone have been selected.

[Link].1 Central zone:

There are total 6 districts in this zone—Ahmedabad, Dahod, Vadodara, Anand,

Panchmahal and Kheda. Ahmedabad and Kheda districts are selected from the Central
zone for the study. Though Dahod is in A-category, I have selected Ahmedabad which is
in B-category because Ahmedabad is the most industrial city and the main city of the
state. There is an intense inflow and outflow of migrants in this city. Ahmedabad is the
7th largest city of India located in the central part of the state of Gujarat in western India.
It is the eighth most populous district in India (out of 640). According to the 2011 census
Ahmedabad district has a population of 7,208,200, roughly equal to Hong Kong or the
US state of Washington. The district has a population density of 890 inhabitants per
square kilo metre (2,300 /sq m). Its population growth rate over the decade 2001-2011
was 22.31 per cent. Ahmedabad has a sex ratio of 903 females for every 1000 males, and
a literacy rate of 86.65 per cent.

Total 11 taluka (Tehsil) are located in Ahmedabad district. From the Ahmedabad district
I have selected Bagodara taluka. The taluka is located on the national high-way no.8.
There are many Hotels and ‘Dhabas'. Truckers stay here. There are also Female Sex
Workers (FSW) and Men who have Sex with Men (MSM) activity. Surrounding area of
Bagodara is rural based area. Most people are socially and economically backward.
Sanand is the second taluka from Ahmedabad district being selected. In Sanand many
industries are located. As in the case of Ahmedabad, there are a lot of migration from and
into this place for employment and other purposes. There are many hotels and guest
houses. Men who have Sex with Men (MSM) and Female Sex Worker (FSW) activity are
noticed in this area. Sanand is located near the city of Ahmedabad, and Sanand is about
70 kilometers (40 miles) from a recently rebuilt international airport. Sanand is linked to
Ahmedabad and Kutch by state highway 17. The state highway 17 joins India's National
Highway no.8, part of the recently completed 4-lane Golden Quadrilateral highway
linking Sanand to many of the major industrial, economic and cultural regions of India.
22
Sanand is connected by a modern highway to Mundra Port, a fully operational and one of
the fastest growing, recently expanded sea ports in Southeast Asia. Sanand is about 350
kilometres (220 miles) from Mundra port. It is also close to the proposed Dholera port
and international airport. In addition to modern highways, Sanand-Viramgam has an
operational broad gauge railway network connecting it to major industrial centres located
in Gujarat.

The second district selected is Kheda as it is only the one district which is in D-category.
According to the 2011 census Kheda district has a population of 2,298,934. This gives it
a ranking of 197th in India (out of a total of 640). The district has a population density of
541 inhabitants per square kilometre (1,400 /sq mi). Its population growth rate over the
decade 2001-2011 was 12.81 per cent. Kheda has a sex ratio of 937 females for every
1000 males, and a literacy rate of 84.31 per cent. The National Highway no. 8 connecting
Ahmedabad and Mumbai passes through Kheda. It forms the administrative centre of
Kheda District.

Total 12 taluka (Tehsil) are located in Kheda district. From the Kheda district, I have
selected Dakor taluka, which is a religious place. People are come from all over Gujarat
for pray to ‘Dakorji'. Dakor is connected through rail and road. There are many hotels
and guest houses for tourists and pilgrims. There are Female Sex Workers and Men who
have Sex with Men active in this religious town. Anand and Nadiad are around 30 kms
away and both are very much connected by rail and roads. Ahmedabad and Vadodara are
around 90 kms away and both cities are connected with rail, road and by air. As of 2001
India census, Dakor had a population of 23,784. Males constitute 53 per cent of the
population and females 47 per cent. Dakor has an average literacy rate of 76 per cent,
higher than the national average of 59.5 per cent: male literacy is 82 per cent and, female
literacy is 69 per cent. In Dakor, 10 per cent of the population is under 6 years of age.
Recently, Dakor is included in one of the six major pilgrimage places under "Yatradham
Vikas Board" by Government of Gujarat. The second taluka selected is Matar from
Kheda district. Surrounding area of this town is rural. People of surrounding area come
here for purchase of essential commodities. There is big market of this area. Several
government and private hospitals also are situated here. Mater is located on the high way.
Matar is a place where a lot of inward and outward migration is reported. MSM activity
also is reported from here.

23
[Link].2 North zone:

The North part of Gujarat is called North Gujarat. It includes Gandhinagar, Banaskantha,
Sabarkantha, Mahesana and Patan districts. North Gujarat is dominant in the Dairy
Industry. Mahesana and Gandhinagar districts are selected from the north zone.
Mahesana is in A-category and it consists of urban and rural areas. There are a good
number of truckers and migrants in the district. Mahesana district is one of the 26
districts of Gujarat state in western India. Mahesana city is the administrative
headquarters of this district. The district has a population of over 18 lakhs and an area of
over 4,500 km². There are over 600 villages in this district. It had a population of
1,837,892 of which 22.40 per cent were urban as of 2001. Mahesana district borders with
Banaskantha district in the north, Patan and Surendranagar districts in west, Gandhinagar
and Ahmedabad districts in south and Sabarkantha district in the east. Major towns of the
district are Vijapur, Bechraji, Modhera, Unjha, Vadnagar, Kalol, Kadi, Visnagar, Kherva,
Jotana Khadalpur and Sanganpur. Mahesana district consists of 9 talukas. These are
Becharaji, Kadi, Kheralu, Mahesana, Vadnagar, Vijapur, Visnagar, Satlasana and Unjha.
In Mahesana district, the taluka selected is Bechraji which is a religious place. There is a
big temple of Bahuchar Mataji in the taluka where Eunuchs (Kinnar) come from all over
the western India for worship. Bechraji is about 35 km from Mahesana. Bechraji is an
under developed place. Many hotels, guest houses and ‘Wadis' of different castes are in
Bechraji. People of surrounding areas are generally socially and economically backward.
FSW and MSM activity is found in this place.

The second selected taluka is Unjha. There is big market of agriculture products. Farmers
and dealers come here for selling and buying agriculture products. Many people from
Rajasthan and other state came here for employment. Gandhinagar is the second district
selected from North Zone. Gandhinagar is only district in D-category from the zone.
Gandhinagar District has the state capital at the city of Gandhinagar. Many people of
Gujarat state come here for political and governmental purposes. People from other
regions of the country also come here for employment. There are industries also located
in this district. It has an area of 649 km², and a population of 1,334,455 of which 35.02
per cent were urban (2001 census). The district includes Gandhinagar with three Suburbs
— Chandkheda, Motera, Adalaj. The four tehsils are Gandhinagar, Kalol, Dahegam and
Mansa and 216 villages. Gandhinagar district is bounded by the districts of Sabarkantha
to the northeast, Kheda to the southeast, Ahmedabad to the southwest, and Mahesana to

24
the northwest. Connected to Ahmedabad by the Sarkhej-Gandhinagar highway and with
Vadodara with the Ahmedabad-Vadodara highway, these three cities form the top
population centres and commercial heart of Gujarat and western India. Gandhinagar city
is a well planned city like Chandigarh (Punjab). Gandhinagar has an IT hub called
‘infocity’. Many big IT companies like TCS, Cybage has presence in the infocity
whereas PCS is located at the GIDC area. In Gandhinagar district, taluka Adalaj is
selected for the study. The Adalaj Stepwell is a popular tourist attraction of the city and is
situated 18 km. near Ghandhinagar, the state capital. FSW activity is found from Adalaj
to Gota, in brush wood (coppice) beside the high way. Adalaj is located on the highway.
There are many hotels and guest houses and intense tourist presence. The second Taluka
selected is Dehgam, which is a big town located on the high way. People of surrounding
areas are socio-economically backward. There is big market also in the town. People
from surrounding villages are dependent on this town for essential commodities, health
and educational facilities.

[Link].3 South zone

South Gujarat is also known as Deccan Gujarat or Dakshin Gujarat. The region is one of
the wettest regions of India. The region is divided into two parts: 1) Western Part. 2)
Eastern Part. The western part is almost coastal and is known as Kantha Vistar means
costal region in Gujarati and The eastern part is also known as Dungar Vistar almost hilly
which ranges from 100 to 1000 metres ranges with the highest peak at Saputara in the
Dangs District of South Gujarat. Surat is the largest city in this region as result of which
it happens to be the headquarters of South Gujarat, which is also the second largest city
of Gujarat and the eighth largest city in India. The Districts in this region are Surat
district, Navsari district, Dang district, Valsad district, and the newly formed Tapi
district. The main cities other than Surat are Navsari, Vyara, Valsad, Bardoli, Vapi,
Bilimora, Chikhli, Songadh. Surat and Valsad districts are selected from the north zone.

Surat district is in A-category and it has urban and rural areas in this district. Many of its
inhabitants are drudgers and migrants. Surat city is the administrative headquarters of this
district. It is surrounded by Bharuch, Narmada (North), Navsari (South) districts and east,
Tapi district. To the west is the Gulf of Cambay. It is the second-most advanced district
in Gujarat. It has a population of 60,79,231 of which 79.68 per cent were urban as of
2011. On 2 October 2007 Surat district was parted into two by forming of Tapi district
under the Surat district re-organisation act 2007.
25
According to the 2011 census Surat district has a Population of 6,079,231, roughly equal
to the nation of El Salvador or the US state of Missouri. This gives it a ranking of 12th in
India (out of a total of 640). The district has a population density of 1,376 inhabitants per
square kilometre (3,560 /sq mi). Its population growth rate over the decade 2001-2011
was 42.19 per cent. Surat has a sex ratio of 788 females for every 1000 males, and a
literacy rate of 86.65 per cent. The city registered an annualized GDP growth rate of
11.5 per cent over the seven fiscal years between 2001 and 2008.

A moat divides the older parts of the city, with its narrow streets and handsome houses,
and the newer suburbs. The city is largely recognized for its textile and diamond
businesses. It is also known as the diamond capital of the world and the textile
capital/Manchester textile city of India, a distinction it took over from Ahmedabad. 92
per cent of the world's diamonds are cut and polished in Surat, although the diamond
sector is facing a financial crisis these days.

Bardoli, the taluka selected is a city and a municipality in Surat Metropolitan Region in
the state of Gujarat, India. Bardoli is the east most end of the Metropolis of Surat. Bardoli
is one of the primary Satellite Towns of Surat Metropolitan Region. It is said that Bardoli
is the Paris of India. Due to its central location for many Talukas it is a major economic
centre of Surat Metropolis. As of 2001 India census, Bardoli had a population of 51,963.
Males constitute 51 per cent of the population and females 49 per cent. Bardoli has an
average literacy rate of 74 per cent, higher than the national average of 59.5 per cent;
with 54 per cent of the males and 46 per cent of females literate. 9 per cent of the
population is under 6 years of age. Bardoli, long ago nothing but a very small village, is
populated due to the establishment of "Bardoli Sugar Factory". It is presently, the largest
sugar factory in Asia. It also has largest number of used car dealers in Gujarat. This is
because the Bardoli region is home to a large number of Non-Resident Indians, who visit
Bardoli once a year in December. There is a possibility that, people coming from foreign
and other places spread HIV/AIDS and other Sexually Transmitted Infections (STIs) in
this area. Second taluka selected is Palsana. This is the centre of Diamond Industry.
Many people of Gujarat and other states come here for employment. Many people of
Saurashtra also worked in diamond industry. There is a sugar factory also there.

The second district selected from the South Zone is Valsad. Because, Valsad is the only
one district that belongs to D-category. Valsad district is one of the 26 districts in the
Western Indian state of Gujarat. It is bound by Navsari district to the north, Nashik

26
district of Maharashtra state to the east, and Dadra and Nagar Haveli union territory and
Thane district of Maharashtra to the south. The Arabian Sea lies west of the district. The
coastal Daman enclave of Daman and Diu union territory is bounded by Valsad district
on the north, east, and south. The district's administrative capital is Valsad. The district's
largest city is Vapi. It has six talukas: Valsad, Pardi, Vapi, Dharampur, Kaprada,
Umargaon. Major cities of this district are Vapi and Valsad.

According to the 2011 census Valsad district has a population of 1,703,068, roughly
equal to the nation of The Gambia or the US state of Nebraska. This gives it a ranking of
287th in India (out of a total of 640). The district has a population density of 561
inhabitants per square kilometre (1,450 /sq mi). Its population growth rate over the
decade 2001-2011 was 20.74 per cent. Valsad has a sex ratio of 926 females for every
1000 males, and a literacy rate of 80.94 per cent.

In Valsad district, Paradi is the selected taluka. In Paradi many industries are located. The
famous Atul chemicals factory also is located there. Tribals make fifty per cent of the
population of the taluka. The second taluka selected for the study is Vapi. It is located on
the river bank. The main occupation for the inhabitants is fishing from the river. Vapi is
also hill-station and so many people come from outside.

[Link].4 Saurashtra

Saurashtra is located on the Arabian Sea coast of the Gujarat state. It consists of 7
districts of Gujarat, including Rajkot. It is a peninsula also called Kathiawar after the
Kathi Darbar who ruled part of the region once. The peninsula is shared with the Kutch
region which occupies the north, Saurashtra or Sorath forming the southern portion. The
Saurastra or Kathiwar region comprises the south western part of Gujarat state and the
districts included in this region are Rajkot, Junagadh, Bhavnagar, Porbandar, Jamnagar,
Amreli, Surendranagar, and some portions of Ahmedabad District also fall under this
area.

Surendranagar and Porbandar districts are selected from Saurashtra. The former is in A-
category and it has urban, rural and tribal areas in this district. There is a lot of migration
to the city. The district occupies an area of 10,489 square kilometres (4,050 sq mi). As of
2001, it has a population of 1,515,148, out of which 26 percent live in cities. Other cities
in the district include Dhrangadhra, Halvad, Wadhwan, Limbdi, Chuda, Lakhtar, Katosan
Raj, Muli, Sayla, Thangadh and Tarnetar. According to the 2011 census, Surendranagar
27
district has a population of 1,755,873. This gives it a ranking of 274th in India (out of a
total of 640). The district has a population density of 167 inhabitants per square kilometre
(430 /sq mi). Its population growth rate over the decade 2001-2011 was 15.89 per cent.
Surendranagar has a sex ratio of 929 females for every 1000 males, and a literacy rate of
73.19 per cent. From the Surendranagar district Chotila is selected as a taluka. Chotila is
a religious place and the famous ‘Chamunda mata' temple exists here. It is located on the
national highway. Truckers halt here. There are manyfemale sex workers in the area. The
second taluka selected is Than. Ceramic industry of the region is located in Than. Many
people come here from Madhya Pradesh and other states for employment here, in the
Ceramic industry.

The second district selected is Porbandar. It is located on coastal area of Gujarat and it is
in D-category. The district covers an area of 2,298 km². It had a population of 5,86,062 of
which 48.77 per cent were urban as of 2011 census. This district was carved out of
Junagadh District. It lies on the Kathiawar peninsula. Porbandar city is the administrative
headquarters of this district. This district is surrounded by Jamnagar district to the north,
Junagadh district to the south and the Arabian Sea to the west. As of 2011 it is the second
least-populous district of Gujarat (out of 33), after Dang. Porbandar district has 3 talukas;
Porbandar, Ranavav, and Kutiyana. The district has a population density of 255
inhabitants per square kilometre (660 /sq mi). Its population growth rate over the decade
2001-2011 was 9.17 per cent. Porbandar has a sex ratio of 947females for every 1000
males, and a literacy rate of 76.63 per cent. In Porbandar district there are only three
ICTCs. The first ICTC is selected from Kutiyana and the second from Ranavav taluka.

[Link] Semi-structured interviews with counsellors

16 ICTCs have been selected for the study based on the selection procedure explained
above. Data has been collected through interview schedule by the researcher. I have
conducted interviews of Counsellors at ICTC which are located at the Community Health
Centres and 16 interviews have been conducted (16 ICTCs×1 counsellors=16
interviews). These ICTCs are: Sanand and Bagodara from Ahmedabad district; Dakor
and Matar from Kheda district; Bechraji and Unjha from Mahesana district; Adalaj and
Dahegam from Gandhinagar district; Bardoli and Palsana from Surat district; Pardi and
Vapi from Valsad district; Chotila and Than from Surendranagar district; and Kutiyana
and Ranavav from Porbandar district.

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I have got permission from the Gujarat AIDS Control Society for conducting the
interviews of counsellors. For data collection, in-depth semi-structured interviews have
been conducted with these counsellors. The researcher has also interacted with other
experts and also social activists. However, it was mainly through the semi-structured
interviews that the researcher has collected information regarding public engagement
with risk of HIV/AIDS and barriers faced by counsellor during counselling session.

[Link] Non-participant observation

Becuse of the ethical issues involved and also since the NACO Guidlines rules against
the presence of anyone else during the conselling sessions, the researcher did not perform
participant observation. Similar ethical issues were involved in interacting with the
HIV/AIDS patients too. However, non-participant observation was undertaken to
understand the socio-cultural ambience of the ICTCs and the structuring of the ICTC
as/embedded in social space.

[Link] Primary source materials

The researcher has also collected relevant campaign materials (posters, pamphlets,
brochures, booklets etc.) and published reports from the State AIDS Cell. The official
reports of the NACO and GSACS also were helpful for the present study. In Gujarat
many NGOs like Adhar, ABAD N.P.+ etc. are working for the HIV positive people. The
educational materials collected from them were also informed the present study. Some
reports and information booklets of GSACS and Ahmedabad Municipal Corporation
AIDS Control Society, like Aadhar (Activities story of year 2004 to 2010), Aagal aavo
Janakari Lo: HIV/AIDS Atakavo, Information Booklet (Gujarati), Year 2009-10, Aao
Apane Pan Niyamit Rakt Dan Karie Jindagio Bachavavama Sahabhagi Banie,
Information booklet (Gujarati), 2010-11, AIDS ane Jatiya Rog, Information booklet,
Year 2010-11, AIDS Kevi Rite Felato Nathi, Information booklet, Year 2009-10, AIDS ne
Samajie- AIDS ne Atakavie, Year 2009-10 etc were very helpful in collecting primary
data for the present study. Also some materials like AIDS Pratikar magazine, pamphlets,
brochures, posters, other HIV/AIDS awareness campaign materials are used as primary
sources of information for the study.

1.8 Chapterisation

The thesis has been divided into the following chapters.

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Chapter-1: Introduction

The introductory chapter explains the research design of the study with detailed
discussion on the research problem, rationale of the study, nature and the scope of the
study, objective of the study, and research methodology

Chapter-2: Theoretical Framework: Public Engagement with the Risk of HIV/AIDS

The chapter discusses the theoretical framework of the study in detail based on the
scholarly work in the field of Public Engagement with Science. Mainly the work of Brian
Wynne and Alan Irwin provides theoretical insights into the ways in which different
social groups and the general public attempt to fashion locally useful knowledge from
external and indigenous sources. The chapter discusses the contextualist model employed
in the present study. On the base of the contextualist model in PEST, the researcher
discusses public engagement with the risk of HIV/AIDS in this chapter.

Chapter-3: Public Awareness Campaign in Gujarat

The chapter discusses the history of NACO and GSACS as the governmental institutions
involved in the AIDS awareness, prevention and control. The GSACS is the prime
agency that coordinated the programmes and campaigns for the control, prevention and
awareness of HIV/AIDS in Gujarat. The programs are implemented under the NACO
guidelines. The different HIV/AIDS awareness programs are discussed in this chapter,
based on campaign materials and official documents.

Chapter-4: Role and Functions of ICTC

The chapter discusses the role and functions of the ICTCs as well as the counsellors in
the prevention, control and awareness about HIV/AIDS. Counsellors of ICTCs are
trained and skilled persons. This chapter is based on the primary data collected by
interview of counsellors and other experts. The chapter discusses the structure of ICTCs
and situate it in the wider network of HIV/AIDS prevention and control campaigns and
programmes at the national and state level.

Chapter-5: The Client-Counsellor Interaction and the Risk Perception

The chapter explores the nature and characteristics of the communication between the
expert (counsellor) and the lay-person (client) in the micro-sociological context of the
ICTCs. The problems faced by the counsellor during the counselling session as well as
30
the problems faced by the clients are discussed in this chapter. Most clients often do not
agree with the suggestions given by the counsellors about HIV/AIDS and other STIs
related information. The chapter enquires this communication problem between the
expert and the lay-persons in the context of ICTCs. Misconceptions/misunderstandings
emerging between the clients and the counsellors, and the negotiation of trust and
credibility between them are discussed in the chapter. The analysis in the chapter is based
on the primary data collected from the local ICTCs.

Chapter-6: Summary and Conclusion

The chapter gives the summary of the research and presents the emerging
recommendations.

1.9 Limitations of the Study:

There are 1621 ICTCs located in the Gujarat state. But only 16 ICTCs have been selected
for data collection due to financial limitations and time constraints. Because of the nature
of the subject and the secrecy involved, it was very difficult to get relevant information
from the counsellors and other stakeholders. Maximum care has been taken to overcome
these limitations by meeting the counsellors several times and by informally interacting
with them, but still the data availed is not claimed to be comprehensive. The campaign
material and other documents collected as part of the field research also have been used
to overcome the limitations of the field work.

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