Breaking the Barriers

A Document on Communication Strategy for CDHP

Produced for MST IPE

PSS, Hyderabad
1. INTRODUCTION

The dramatic impact of HIV/AIDS in the developing world is outpacing the

global response and the public sector’s ability to address the pandemic.
The diversity and reach of the sectors – consisting of NGOs, professional
associations, private health providers, and business alliances – provides
critical opportunities to extend national responses to HIV/AIDS. The
advanced stage of the HIV pandemic, and the increased availability of
resources through programs, now requires the thoughtful engagement
and deployment of successful communication strategies to scale up local
and national responses.

1a. HIV/AIDS in India

The story of HIV/AIDS in India is a little more than two decades old. The
scourge has taken its toll in a big way attracting the attention of all the
sections of society and the Government almost along the other affected
countries.

India’s initial response to the HIV/AIDS challenge was in the form of setting
up an AIDS Task Force by the Indian Council of Medical Research (ICMR)
and a National AIDS Committee (NAC) headed by the Secretary, Ministry of
Health. In 1990, a Medium Term Plan (MTP 1990-1992) was launched in
four States, namely, Tamil Nadu, Maharashtra, West Bengal and Manipur
and four metropolitan cities, namely, Chennai, Kolkata, Mumbai and Delhi.
The MTP facilitated targeted IEC campaigns, establishment of surveillance
system and safe blood supply.

In 1992, the Government launched the first National AIDS Control

Programme (NACP-I) with an IDA Credit of USD 84 million and
demonstrated its commitment to combat the disease. NACP-I was
implemented during 1992-1999 with an objective to slow down the spread
of HIV infections so as to reduce morbidity, mortality and impact of AIDS in
the country. To strengthen the management capacity, a National AIDS
Control Board (NACB) was constituted and an autonomous National AIDS
Control Organisation (NACO) was set up to implement the project.

In November 1999, the second National AIDS Control Project (NACP-II) was
launched with World Bank credit support of USD 191 million. Based on the
experience gained in Tamil Nadu and a few other states along with the
evolving trends of the HIV/AIDS epidemic, the focus shifted from raising
awareness to changing behaviour, decentralization of programme
implementation at the state level and greater involvement of NGOs.
The policy and strategic shift was reflected in the two key objectives of
NACP-II:

• To reduce the spread of HIV infection in India.

• To increase India’s capacity to respond to HIV/AIDS on a long-term basis.

While there has been a systematic improvement in the response, there

are areas that still require greater attention and stronger focus.

Against this background and keeping the prevalent social context,

concerns and the emerging HIV/AIDS scenario as well as drawing from the
experience of the earlier two phases, NACO initiated the preparatory
process for NACP-III (2006-2011). In April, 2005, the Government of India
constituted a national planning team to begin the preparatory work. A
conscious decision was taken to make this process consultative,
participatory, inclusive and transparent.

In spite of all the efforts, it is noticed that the incidence of the disease has
not given any hint of downward trends. The number of people living with
HIV/AIDS (PLHA) in India is estimated to be 5.2 million (0.88%), the second
largest in the world. Over the years the virus has moved from urban to
rural and from high risk to general population disproportionately affecting
women and the youth.

1b. HIV/AIDS in Andhra Pradesh

With 76.2 million people as of the 2001 Census, Andhra Pradesh is India’s
fifth most populous state. It is also considered one of the country’s six
high HIV/AIDS prevalence states. The others are neighbouring Karnataka,
Maharashtra, and Tamil Nadu, along with Manipur and Nagaland.

According to the 2001 Census, 27.3 percent of the state’s population lives
in urban areas and

60.5 percent of the population, ages 7 and higher, is literate. The annual
sentinel site surveillance programme is the main source of data regarding
the level of HIV infection in the state. The state’s series of HIV Risk
Behaviour Surveillance Surveys (BSS) are also an important source of
information on the factors affecting the spread of the disease and are a
basis for assessing the impact of prevention programmes.

Of the state’s 23 districts, 19 have HIV prevalence of 1 percent of more

among ANC women. This is further evidence that HIV is now infecting
those in the general population. (Latest figures please) This movement of
HIV out of high-risk groups and into low-risk groups requires continuously
expanded efforts to inform and educate the public of the new threat of
HIV.

With the growing complexity of the epidemic, there have been changes in
policy frameworks and approaches of the NACP. Focus has shifted from
raising awareness to behaviour change, from a national response to a
decentralized response and an increasing engagement of NGOs and
networks of people living with HIV/AIDS.

APSACS and progress

The Andhra Pradesh State AIDS Control Society (APSACS) was established
in 1998 as a registered society. In keeping with the overall vision of NACO,
APSACS works to reduce the spread of HIV infection in Andhra Pradesh and
to strengthen the state’s capacity to respond to HIV/AIDS. To achieve this,
APSACS has adopted a multi-sectoral, multi-pronged approach.

APSACS’ activities and programmes include:

• Targeted interventions

• STD care and counselling

• Condom promotion

• Information, Education, & Communication (IEC) Programmes

• Blood safety

• Voluntary Counselling and Testing Centres (VCTC)

• Prevention of Parent to Child Transmission Centres (PPTCTC)

• Youth, school, and college AIDS education programmes

• HIV/AIDS awareness for women and adolescent girls

• Training of police
• Workplace interventions

• Training of medical and paramedical personnel

• Care and support centres (CSC)

• People living with HIV/AIDS (PLWHA) networks

• Antiretroviral (ARV) treatment centres

APSACS has found in their regular surveys that there is often a gap
between knowledge and behaviour. In July 2005, APSACS launched an
intensive, month-long AIDS Awareness and Sustained Holistic Action
(AASHA) Campaign. AASHA focused on promoting AIDS awareness,
strengthening service delivery, and increasing demand for HIV/AIDS-
related services by engaging all sectors of society, from government
agencies to individuals and families. The main goal of the campaign was
to deliver prevention messages to every home in Andhra Pradesh.

2.Importance of Communication

2a.Behavior Change Communication”

BCC is a process of working with individuals, communities and

societies to:

- develop communication strategies to promote positive

behaviors which are appropriate to their settings; AND

- provide a supportive environment which will enable people to

initiate and sustain positive behaviors.

2b. What is the difference between BCC and IEC?

Experience has shown that providing people with information and

telling them how they should behave (“teaching” them) is not
enough to bring about behavior change. While providing
information to help people to make a personal decision is a
necessary part of behavior change, BCC recognizes that behavior is
not only a matter of having information and making a personal
choice. Behavior change also requires a supportive environment.
Recalling the interventions model, we learned that “behavior
change communication” is influenced by “development” and “
health services provision” and that the individual is influenced by
community and society. Community and society provide the
 supportive environment necessary for behavior change. IEC is thus
part of BCC while BCC builds on IEC.

Before designing a BCC intervention, it is important to be clear

about exactly whose behaviour is to be influenced and which aspect
of their behaviour should be the focus for change. Communities are
made up of different groups with different risk and vulnerability
factors. Even within the same broad group, there may be subgroups
with distinct characteristics. Different target groups will require
different approaches. Therefore, when making decisions about
which target groups and which factors to address, it is necessary to
consider:

 which target groups are most vulnerable;

 which risk / vulnerability factors are most important;

 which factors may be related to the impact of conflict and

displacement;

 which target groups and risk / vulnerability factors the

community wants to address;

 what could be motivators for behaviour change;

 what could be barriers to behaviour change;

 what type of messages will be meaningful to each target

group;

 which communication media would best reach the target

group;

 which services/resources are accessible to the target group;

 and which target groups and risk / vulnerability factors are

feasible in terms of expertise, resources and time.

A successful BCC program requires careful research and thorough pre-

testing of communication materials. It is important not to underestimate
the effort that is needed to carry out good quality behavioral research,
which yields findings that are accurate and useful.

3. Rapid analysis of Communication strategies.

Intentions are in place. Implementation is a problem. The reasons are
many. Some are known and some are not known. A critical evaluation
from a new point of view is necessary.

Under the light of this understanding, it is the right opportunity to take a

stock of both the BCC and the IEC that has happened in the state. Sacs of
the states work under the umbrella of the national guidelines from NACO.

(From NACO IEC Strategy document)

Though India continues to remain a low HIV prevalence country

(Surveillance 2003), it has the second largest number of estimated HIV
positive people in the world. A national IEC strategic framework is required
to facilitate a crucial and creative process that provides the central IEC
division as well the State AIDS Control Societies (SACS) with a basic set of
conceptual and operational frames to be able to quickly “get in” the new
directions and evidence base for effective message design, delivery and
impact. More specifically, the need for a national IEC strategic framework
has emerged for following reasons.

1. A more systematic and evidence based IEC/BCC is being seen as more

effective and also accountable. There has been availability and access to
data, findings, lessons and experiences that will certainly add much value
and sharpness to the response.

2. The messaging appears to be tiring out and failing to grab the needed
pointing to the need to not only revitalise the basic message of how
HIV/AIDS spreads and how it doesn’t but also go beyond the basic
message for more effective primary and sustainable behaviour change.

3. The IEC operational guidelines focused mainly on the IEC mass media
products/channels. Many of the emerging issues and priorities (e.g. PPTCT,
ART, sensitivity to PLHAs) did not adequately and timely get reflected in it.

4. There is a strong felt need to set basic standards, uniformity,

consistency, gender and PLHA sensitivity, cultural contextuality as well as
creativity in broader issues related to HIV/AIDS though obviously it should
be tailored to meet the local conditions and situations.
Though the strategy paper lists out the reasons and the direction for the
communication activity, the reality on the ground appears to be more of a
general approach the tailored to local.

It is said in the national document that “the IEC for awareness generation
is operationalised at two levels. At the national level, NACO is responsible
for policy, advocacy and strategy formulation and the framing of
guidelines for IEC activities countrywide and at the state level, the SACS
evolve their own IEC strategies according to local needs and priorities, a
review of the material and process points out a generality of approach.

Gap analysis from the IEC strategy document.

1.5 Reviews, assessments and evaluations of IEC

Even though there has been some progress in awareness generation for
HIV/AIDS, it is clear that the IEC efforts and initiatives have yet to make
the desired impact. Several recent assessments, reviews and evaluations
(CMS 2003, World Bank 2004, IEC workshop 2003, SAEP workshop 2003,
Care and Support workshop 2003, Parliamentarians Forum Meeting 2003,
TI workshops 2004) have pointed out the good work done and achieved by
the IEC efforts, but has also noted the weakness, gaps and problems with
the same. The observations by the reviews and studies with regard to IEC
can be clubbed under three broad categories.

(i) Coverage of key Issues in IEC activities

• Awareness about the links of STD and HIV need greater reinforcement.

• The earlier mandate of programs did not include care and support of
PLHAs; consequently little in the way of resources or attention was
directed to this.

• The communication about availability of STD, PPTCT, ART, services

needs to be highlighted.

(ii) Messaging thematic and quality of communication

• There is a lack of quality communication materials in general, and the

materials developed were often too "medical" in their orientation.

• Mass media campaigns on HIV/AIDS were not adequately complemented

by interpersonal communication and community involvement.
• There has not been a running thematic/focus that would catch the
imagination or be memorable so as to make a big recall and action thrust.

• The messages related A and B have not been adequately stressed.

• There is still need to check the fear and blame route of messaging,
which sometimes inadvertently creeps in.

• The advocacy activities and other events like the World AIDS Day have
largely remained reactive and isolated activities.

• There is a need to sharpen strategy and respond to the strategic and

specific needs of the audiences.

(iii) Capacity, Coordination and Management of IEC

• Capacity for delivering quality IEC/BCC materials and activities need

strengthening.

• There is a lack of coordination of programs, and little coordination across

partners and programs of the various campaigns and messages.

• The monitoring and evaluation system for IEC within the CMIS and
outside has not been used in any way for planning or design purposes.

• Negative attitudes toward HIV/AIDS among health care workers were

widespread and training and preparation for effective communication of
health care workers.

• Activities were concentrated in the same geographic areas, with little

expansion and replication of model interventions into other states and
departments.

• The lack of documentation and institutional memory in the activities and

initiatives causes wasteful experimentation.

It is evident that there is an urgent need to look at IEC from a new and
fresh perspective to make it more effective and result oriented.

Strategy paper very clearly identified the need for rationalising the IEC
activity.

It says, “It can be safely concluded that there are three dimensions of the
epidemic that need to be taken into consideration in the strategic
framework.” The areas are identified as social level, behaviour level and
medical level.

It is also noted that, at first, the IEC strategies that have been developed
and utilized over the years for the prevention and control of the HIV/AIDS
pandemic have been an evolving one. The document went on to add the
following statements.

“The focus of the messaging has been on the target populations that have
high spread and high risk behaviours. As a result of that the public
perception has also been shaped around the sexual route, the fear and the
danger syndrome in some ways has enhanced the stigma and impeded
the later message content and design for prevention.

Secondly, though there have been messages for removing myths and
misconceptions the phenomenon has not reduced. In fact the BSS clearly
shows that large percentage of populations, even in high prevalence areas
where there has been major communications efforts, the harbouring of
myths and misconceptions is high.”

The element of gender sensitivity also has a passing mention there.

However a quick analysis of the policy, material and the field reality leads
to the following observations.

Desk review of the IEC strategy:

There was a comprehensive desk review done using the documents

received from SACS, interviews with Joint Director IEC, APSACS (state
level), District program Manager & ICTC Supervisor (District level) and
service providers from various facilities within the district (Facility level)
using customized formats. This exercise was aimed at doing a gap
analysis in the current IEC strategies being implemented in the state for
the HIV/AIDS interventions and for the “Needs Assessment”.

IEC Planning:

There was no proper “Needs Assessment” done for each of the program
component of HIV/AIDS intervention for the IEC plan.

There is no documented IEC strategy to address the changing dynamics,

evolving trends and the unmet needs.
Most of the activity as mentioned in the IEC document of APSACS happens
in fits and butsts in a general way with general content.

Even the formats are uniform in all the places

There is no focus on at least endemic and non endemic areas.

Facts learnt are not taken into consideration when plans of communication
are drawn.

There must be reasons worth a study for such the situation, but, the basic
purpose is not being fully served.

For example:

Analysis of the latest epidemic situation in the state revealed that no signs
of reversing the trend. The Coastal districts continue to dominate the
epidemic and there are newer districts showing increasing trend.

The prevalence of HIV among high risk groups, especially among MSMs
and IDUs is increasing.

The PLHAs getting registered for treatment in the ART centres showed
that still majority of them are having CD4 count levels <50 among the
adults at the time of registration. This is one of the major factors of
morbidity and mortality among PLHAs. It indicates that still people are
getting diagnosed at very late stage for HIV.

The death rate among those on ART is more than 10% and the lost to
follow up for the ART is also of similar range, which are quite concerning.

Focus on specific groups:

There are no specific IEC plans for the high risk / vulnerable groups.

Even though 60-70% of the population leaves in the rural areas, majority
of IEC plans are unable to reach the vulnerable section of the rural
population.

There are hardly any IEC plans with Community participation especially for
the HRG / vulnerable groups and rural population

Supply Chain:

The logistic supply for the IEC materials is done on an adhoc basis from
the state level. There is no proper supply chain management for the IEC
materials.
The impression obtained was also that the IEC materials were mostly
available in the service delivery points.

Monitoring & Evaluation:

Though there is a monitoring plan for the IEC activities, it is not followed at
any level in the state.

There is no proper reporting mechanism for the IEC activities on a periodic

basis from the district level to state level and higher up.

No evaluation (process / impact) has been conducted of the IEC programs

designed and implemented by SACS as well as partners through
independent agencies.

Collaboration & Mainstreaming:

There is lacking synergy among the various partners working for any
particular program.

No attempt has been made to mainstreaming the IEC activities with health
and other relevant departments for bringing synergy and better
acceptance in the field.

It was felt that the many times the posters sent from SACS, was difficult to
understand for the end users. It indicates that probably the IEC materials
were not field tested / piloted before being put to use.

Content specific issues:

Most of the materials available are still on Awareness creation among the
public. Very few of them concentrated on the service delivery points, the
package of services available and referral flow of the patients / PLHAs.

There is paucity of materials on age and gender specific issues.

The overloading of the clients at the service delivery points hinders the
counseling / information dissemination especially at ICTC / ART centre
level.

More information from the field meeting to be added.

4. Revised strategy
It is well known and well documented that the root cause of the scourge,
namely, the HI Virus keeps changing and makes the challenge of medical
intervention that much harder.

India being geographically and demographically a vast country, the virus

is manifesting itself in myriad forms. Similarly the diversity of the
population is making even the BCC and IEC an equally challenging task.
The magnitude and sensitive nature of the problem was making the efforts
of awareness campaigns almost obscure.

It is relevant here to recognise the fruits of various activities including

medical yielding much needed results. Any development activity in a
society of this magnitude appears on the face as a dud. In the case of
HIV/AIDS the efforts gave results and the numbers speak for themselves. It
is also necessary to recognise the need for a fresh approach towards the
problem under the changing conditions on many levels.

I. Disease is no longer the same as it was.

II. The spread is not localised and shows an alarming trend.

III. The priorities made on the basis of certain observations are proving
to be impractical now.

IV. The HRG pattern is also evolving and changing.

V. Last but not the least we have a much broad based mechanism to
deal with the communication process now.

The recently added Link Worker scheme is a strong pointer towards the
necessary course correction in the process of behaviour change
communication.

Through the new set up a clear emphasis can be brought in the direction
and style of both BBC and IEC.

Link Workers – A new link

The Link Worker Scheme proposed under National AIDS Control Program III
has been designed specifically to address populations with high risk
behaviors (including High Risk Groups and Bridge Populations) with the
premise that there are significant numbers in rural areas and we needs to
be reach out to them in order to saturate the coverage of these groups.
This was planned by NACO in 2008-2009.

The LWS will cover young people. Link Worker Scheme has been designed
to help the key functionaries of SACS, DAPCU and NGO in implementing
the Scheme. This is mainly to address all risk groups and sub
populations. In order to saturate all high risk and highly vulnerable groups
with prevention and essential services, there is a felt need to establish an
appropriate low-cost structure that could provide prevention, care and
support services to them. There is an urgent need to de-stigmatize HIV
infection through effective community dialogue. With increased risk
perception and diminished stigma, utilization of the health infrastructure is
expected to be strengthened under NACP III.

Link worker scheme hopes to address this competent in rural areas. An

outreach strategy through Link Worker Scheme has been carefully crafted
based on district specific needs optimizing local resources The Link Worker
Scheme envisions a new cadre of worker, the Link Worker, to be
introduced at the village level. Link Workers will be motivated, community
level, paid female and male youth workers with a minimum level of
education. A Link Worker is someone who is not “alien” to the
neighborhood, is accepted by the village community, and who can discuss
intimate human relations and practices of sex and sexuality and help
equip high risk individuals and vulnerable young people with information
and skills to combat the pandemic.

(KRMR – 86-71, Guntur – 74, Medak – 53)

Socio economic approach

(They have a ready explanation in ironing out the differences between the
rural and urban targets. This calls for some new thinking.)

The advantage of making group specific efforts in making people aware

and educated about HIV/AIDS is enough recognised and need not be
explained again. However a practicable model for such an exercise will be
highly in place when a course correction is being attempted.
A study of demography and other population related problems with
respect to the three districts dealt with namely, Medak, Karimnagar and
Guntur will give us enough ground as illustrations in the approaches to
follow.

The three districts

Characteristics and variability

Medak

Proximity to the capital

Poverty

Lack of education

Labourers

Karimanagar

Migrants to Gulf etc.

Women alone (Women headed families)

Infection brought by returnees

Poverty

Lack of education

Guntur

Affluence Vs Poverty

Morality standards

Brothel culture open

Past record of communication and also medical interventions speak about

the differences in these regions. The districts Medak and Karimnagar are
under sub region Telangana and contiguous also. Both of them are
agriculture dependant economies. Most of the population is below poverty
line and are used as farm labour. Water for irrigation is the main problem
of this are and thus reflects the economic situation here. Interestingly,
though poor, the populations of these two districts and more so Medak are
very close to the capital city Hyderabad. The farthest place in Medak is
around 100 Km from the city. People of Medak, look towards Hyderabad,
as a potential place of work. All in all, the populations of these two districts
are identical by economical parameters. However there is a marked
difference when a tradition of men migrating to Middle East from
Karimnagar is considered. The third district, namely Guntur is completely
different by any count. (Data Plaease)

It is said that research has shown the disease as attacking the

disadvantaged communities sooner and more severely than in other
communities, we note that it is more prevalent in Guntur than the other
two districts. This calls for an approach into the sub-population
demographics. It would become clear that there are certain other social
factors involved when it comes to development communication. The urban
rural divide and the haves and have nits divide are there at one level.
There is a different force called culture playing a crucial part in accepting
the development messages, be it economical, health or other social
aspects. When such is the situation, it is only imperative that a highly
sensitive and very personalise issue like HIV/AIDS deserves a different
knid of approach in being brought to the notice of people.

Our society is as such very shy of discussing personal matters openly.

Health is discussed less and sexual health seldom. It is a part of our
culture that diseases related to sex are seen as curses and are kept
secret. Communication strategies have not given the aspect of culture its
due recognition.

5. Socio cultural approach

5a.Importance of culture in communication

HIV and AIDS raise challenges related to stigma and discrimination, public
and private morality and ethics, sexuality, gender and power – all of which
have important cultural and social dimensions. Targeting individuals is
necessary, but, not enough. It is increasingly recognised that complex
social challenges such as HIV and AIDS need a holistic response beyond
conventional 'behaviour change communication'. Recent thinking in
development communication has attempted to take social context and
culture more seriously. ( Culture and HIV/AIDS: a Cultural Approach to
Prevention and Care is a joint UNESCO and UNAIDS initiative.1)
As part of the UNESCO and UNAIDS work on culture and HIV and AIDS a
roundtable meeting on stigma and discrimination in 20026 highlighted the
way stigma is rooted in and reflects existing social inequalities, and
pointed to a need for close examination of the 'local dynamics of
discrimination and solidarity' in any setting. Key 'cultural resources' to
fight against discrimination have often been devised by people infected or
affected by HIV. At the same time, constraints of poverty can elicit
reactions of denial and avoidance for those facing the prospect of death of
family or friends8 – the same reactions anthropologists have found in
relation to infant mortality.

A recent research study Routemapping culture and development10 found

that cultural activities were widespread in development.

This is exemplified by the very fact that we depend heavily on the cultural
formats for communication. Interestingly we borrow the many widely
accepted formats and use them on all sections of people without
considering their preferences. We look at the efficacy which is sometimes
misleading. Interestingly the cultural variations and sensitivities are rarely
considered important when it comes to the other aspects of HIV/AIDS.

The above mentioned study found a lack of consistency in implementing

projects, little understanding of how cultural processes work, and few
examples of appropriate evaluation. Four aspects of the use of culture in
development were identified:

● Culture as context – the wider social environment and setting

● Culture as content – local cultural practices, beliefs and processes

● Culture as method – cultural and creative communication activities

(popular theatre, music, dance, visual media, symbols)

● Culture as expression – creative elements of culture linked to beliefs,

attitudes and emotions, ways of engaging the world and imagining the
future.

Beyond a focus on the individual

The UNAIDS Communication Framework for HIV/AIDS, developed through
global consultation in 1997-99, draws attention to the importance of social
context in the response to HIV and AIDS. The framework rightly criticises
the 'methodological individualism' of much health communication in the
behaviour change tradition.In responding to HIV and AIDS, several
domains of context need to be addressed to sustain changes in behaviour:
spirituality, gender, socio-economic status, policy frameworks and culture.

Culture is too often seen only as a barrier to change. Communication for

Social Change, an approach developed by the Rockefeller Foundation
recognises cultural identity and tradition as important resources in
people's self directed change, rather than as problems. Anthropological
studies have shown that despite their wide differences, indigenous
philosophies and belief systems always situate the individual socially.

But despite the models of individualistic psychology underpinning much

development communication work, people in the North are also part of
families, communities, and social groups with their own cultural
characteristics. The remarkable levels of religiosity in the US (Castells
cites evidence that over eighty per cent of US citizens believe in God) are
a reminder of how untenable it is to generalise about a single coherent
and widespread rational-scientific worldview in the West.

If trial of looking into Indian society to identify the hallmark features of

culture is made, one can only be shocked by the variation that accosts.
India is a potpourri of various cultures. This diversity is a boon as well as a
bane. It makes anything valid and everything invalid. In such a pluralistic
society it is highly unlikely that communication, that too in relation to a
highly individualistic problem like HIV/AIDS will be successful, if done on a
general and open scale.

The results of IEC that are already achieved are enormous. Ironically the
problem still looms large into the face of everyone concerned. It is high
time when the whole gamut of activities regarding HIV/AIDS makes a
course reorientation. Efforts will bear more fruit and meaning, when all or
some of the intentions, already there on everyone’s mind, are given a new
strength.

In tune with the scope of the present exercise of putting a communication

strategy in place, certain important points are discussed here. There is a
risk of all of them sounding very familiar and old. However a close
examination will reveal their new orientation with focus and localisation.
General communication – Awareness building.

The stage of Let us talk AIDS is over and now is the time to deal with the
scourge.

Now, the slogan will be “What can I do?”

To answer this question, each one has to identify the position in relation to
the problem. It makes the process of communication more focussed. You
cannot have the same message for everybody. The society gets stratified
into groups and each part deserves a focussed message. Only then the
elements of participation and passion will arise, leading to a better
situation on the field. Before we go into the details of typical groups and
the relevant messages and change agents concerned, we have to review
and realign the priorities.

A growing medical anthropological literature offers insights on public

health, 'sickness' and medicine, and illustrates how these are shaped by
cultural concerns interwoven with the economic and political context.
Whatever the purported biological or microbial character of a 'disease' it is
at the same time always a 'social disease', and a set of representations
and practices that each culture associates with disease and those it
afflicts.

Attitude, skill and knowledge

So, Addressing the attitude more than giving information and skills
will become an area of priority. Even the HRG and the person taking ART
may not be fully convinced about the identity and the action. Mere
information to them will become a tool in the hands of a fool. A fool with a
tool still remains a fool. His culture does not allow him to explore the
matters because of phobias and stigmas. The oft quoted ASK triangle
comes into picture. Unless the attitude is in place in equal measures, the
knowledge usually defined as equal to power and the skill will be of mere
vanity value. The gap analysis gives enough hints of such a situation
occurring already. Most of the IEC material was talking about the powerful
information without consideration to the ground situations. Information
about the disease, modes of its spread are all told through umpteen
formats. It was explicitly expressed by the field workers that there is a
scarcity of material either to directly or indirectly tell people about the
modus of diagnosis and treatment.
 It is a known fact that there was no mechanism which arranged for
one to one discussion about the disease till recently. The readiness to
come for the diagnosis increased when such a mechanism was put in
place.

Acceptance of the message depends on the credibility of the

messenger.

That culturally or economically there is a system of beliefs and

traditions in the society is a known fact. We also know that the disease we
are addressing is of a special nature. It has lot of veils around it and thus
hidden behind them. In view of such an understanding the change
managers are to be chosen with care.

Inter personal or impersonal?

Most of the IEC activity has been what is rightly called as impersonal.
Whether it is mass media or mid media or the field based programmes,
the message is thrown to a group of unknown numbers and attitudes. It is
a miracle that even then an immense amount of awareness has come
about in the society. It is because of the nature of the disease, To put it
bluntly, at one point of time, people were mortally afraid of having sex
with even their legitimate partners for the fear of the disease. It is not
exaggeration that the whole world was shaken in the initial days of the
diseases outburst. When cases started to come into open in India, it was a
shock. The inference is that the people have bought the message where it
concerns everyone. The spread of disease due to non sexual reasons is
almost minimal now. Institutions like the barber shops even in villages are
taking enough care to stop the spread. The messages to a group are
accepted by the group. There were no powerful messages to high risk or
low risk or even no risk individuals. So, individuals are not touched by the
phobia. It may contradict the situation years back when everyone was
mortified by the disease. It was predicted that there would be mass
mortality would occur. Nothing like that has happened. In a country of
billion people, the affected are still a miniscule. That does not mean that
the problem is not serious. It all comes to the approach towards the
problem.

Behaviour change communication

In India, as elsewhere, AIDS is often seen as “someone else’s problem” –
as something that affects people living on the margins of society, whose
lifestyles are considered immoral. Even as it moves into the general
population, the HIV epidemic is still misunderstood among the Indian
public. People living with HIV have faced violent attacks, been rejected by
families, spouses and communities, been refused medical treatment, and
even, in some reported cases, denied the last rites before they die.0

As well as adding to the suffering of people living with HIV, this

discrimination is hindering efforts to prevent new infections. While such
strong reactions to HIV and AIDS exist, it is difficult to educate people
about how they can avoid infection. AIDS outreach workers and peer-
educators have reported harassment, and in schools, teachers sometimes
face negative reactions from the parents of children that they teach about
AIDS:

“When I discussed with my mother about having an AIDS education

program, she said, ‘you learn and come home and talk about it in the
neighborhood, they will kick you’. She feels that we should not talk about
it.” So said a Female student, in Chenna.2

Discrimination is also alarmingly common in the health care sector.

Negative attitudes from health care staff have generated anxiety and fear
among many people living with HIV and AIDS. As a result, many keep their
status secret. It is not surprising that for many HIV positive people, AIDS-
related fear and anxiety, and at times denial of their HIV status, can be
traced to traumatic experiences in health care settings.

"There is an almost hysterical kind of fear ... at all levels, starting from the
humblest, the sweeper or the ward boy, up to the heads of departments,
which make them pathologically scared of having to deal with an HIV
positive patient. Wherever they have an HIV patient, the responses are
shameful."

A 2006 study found that 25% of people living with HIV in India had been
refused medical treatment on the basis of their HIV-positive status. It also
found strong evidence of stigma in the workplace, with 74% of employees
not disclosing their status to their employees for fear of discrimination. Of
the 26% who did disclose their status, 10% reported having faced
prejudice as a result. People in marginalized groups - female sex workers,
transgender and men having sex with men - are often stigmatised not
only because of their HIV status, but also because they belong to socially
excluded groups.

Stigma is made worse by a lack of knowledge about AIDS. Although a high

percentage of people have heard about HIV and AIDS in urban areas (94%
of men and 83% of women) this is much lower in rural areas where only
77% of men and 50% of women have heard of HIV and AIDS. However,
the real challenge lies with ignorance about HIV is transmitted - for
example the majority of men and women in rural areas believe that AIDS
can be transmitted by mosquito bites. In 2009, NACO carried a population
based survey in Nagaland, which showed that 72.8% of people believed
HIV could be transmitted by sharing food with someone.

When these are the findings, BCC in case of HIV/AIDS is simply

incomparable with any other similar effort. Behavior changes when
thoughts are radically changed. To change the thoughts the feelings have
to change. This is a highly individual phenomenon. To make someone
think seriously, the message has to be not just powerful but also much
focused.

Here the forces of culture and economic status play an important role.

Impersonal messaging may tell the target audience about the existence of
the problem. It cannot make them feel and think about it. This has been
proved enough in studies. It is necessary that the messages be more
focused as suggested earlier depending on what is expected to be done.
Every message should contain an actionable agenda. Even those who
think they have nothing to do with AIDS, and 90 percent of the population
think like that, should have something to do. They are always cautioned
about things they should not be doing. It distanced them from the realm
altogether since anyway they are not doing those avoidable activities.

Then there are the high risk groups who should be addressed with special
focus. The message there also needs to be highly personalised. The same
media and message will not work for all the regions and sections of the
society.

Demography and the approach

It is here that the message and change managers become friends of the
group. IEC material will only be tools and enablers. Interpersonal
messaging is the only style that can bring about some change. It will
happen in a slow process and thus calls for sustained effort, regular
monitoring and course correction in a case to case manner.

Overall strategy will consider the demographic patterns and make the link
workers and the other volunteers educated about the differences in
approach.
Urban

Semi urban

Rural

Exposure to the media

The reach of mass media and mid media may be very wide. The width
itself is the problem when BCC messages are transmitted through these
conduits.

A quick recap of the uniqueness of the HIV/AIDS problem in comparison

with other health hazards will make it easier to envisage the strategy in its
simplest form. These are observations that surfaced from interviews with
people at random. The field visit also threw up some of these points.

Problems:

Sensitivity of the issue

It is unlike any other issue and is highly secretive and individualistic.

Social silence about sex

The culture of any religion or region did not promote open

discussion of basic sex and not the least sex related problems. Even
mothers feel shy of discussing the matter with their wards. Since
the matter is treated not to be discussed in open, it became a
curiosity. This makes people experiment with the matter in unsafe
ways. Adultery and loose morality are unspoken parts of the culture.
Unlike any other social maladies, sex is a universal requirement.
Unfortunately it is never discussed either in open or in private.

Social stigma of communicable diseases

Lack of general and health education lead to misunderstandings

and fallacies about diseases and particularly about communicable
diseases. The psychology is tuned to doubt the matter that comes
with do’s and don’ts. The education and information that flooded
the people has created many doubts and the silence is stopping
people from asking questions.
HIV/AIDS and communicability

The campaign till now has been very vocal about the
communicability of the diseases and the modes that harm and
those that do not. This has raised more questions in the minds of
people than answers to them.

High Brow messaging

The centrally produced messages are being translated and served

to the people at random. Field workers themselves expressed that
some of the messages are too verbose. They raise more questions
than answers.

Above the head

The education and information being given is sometimes above the

level of understanding due to various reasons.

Language used

If there could be variation in three districts mentioned earlier with

respect to the language, the scenario for the entire state will be
more alarming. We are discussing the local languages here. The
variation and the regional sensitivities are very important points to
be kept in mind.

This is a serious problem with the IEC material, and even in inters
personal discussions. Since the matter is sensitive the language
used is a little shielded.

To put it straight, the message is not straight. It is cloaked in some

classical expressions making it unintelligible to a commoner.

Gender sensitivity

Since the discussion is about sex and its unnatural faces, the
messages are titillating than educating. This is a very unfortunate
situation where people do not look into the message but the
unwanted fringes of it.

Generality of the messages

This point mentioned again to only remind us that the strategy

should turn towards giving focused messages.
 Is it for me?

When the apathy of even the vulnerable groups and individuals is

analysed an interesting point surfaced which needs a deeper
consideration. Everyone considered him or herself as above the
problem. The message when given, elicits the same reaction. It is
for all the others excepting me.

The strategy is looking at a situation where there rae no

outsiders and insiders as for as HIV/AIDS is concerned.
“What Can I do?” or “How can I help?” are the themes for
the communication. Even the most distant person can
participate in the anti-AIDS activity. Perhaps, by keeping
quiet and not spreading misinformation. This message
needs to go to all the sections with action orientation as the
goal.

Cross the bridge when it comes!

Bad health is not a problem until it becomes an emergency.

When this is true of any ailment, the situation cannot be different
with HIV. Moreover, “I am above all this!” psychology is deeply
entrenched in the minds of people.

No boldness

Communication need analysis

The fresh requirement and felt need in the communication process

towards the desired results of behaviour change is only a fresh
orientation. Keeping in view the socio economic and socio cultural
backgrounds, the communication activity is to be locally tuned to suitable
wavelengths.

1) Focussed and not general messaging

2) Local cultural variation built in

3) Fine tuning the messages

4) Continuation evaluation of material and the process

5) Regular feedback on the mileage gained

6) Evaluation of the process by recognised bodies

7) Pretesting the material after fine tuning

8) Course correction at the required point and not at appointed

intervals

9) Evaluation by external observers as well as peers

These are the areas to be strengthened before any effort is made to step
up the communication process.

Strategy For various groups

For a beginning there is a felt need that communication process should be

taken up as a three pronged activity.

1) Link Worker approach

This is a new welcome addition to the machinery that is already involved

in the process of communication. Interestingly the force is still in its
evolving stages. Here if they are fine tuned with care, they can be a real
force to reckon with. This brigade needs a strong psychological
attachment to the work a missionary zeal. Their training should address
the attitude first and then the skill and knowledge.

The input philosophy for the link workers

Attitude

“I am change manager and not an employee here in this work. I am in this

service, because I want my people to be out of this vicious circle.”

Aptitude

“My performance needs to be above that of all the similar workers in the
field. I am interested in upgrading my ability on a continuous basis.”

Knowledge

“The knowledge that I gain will help me perform better and transform my
little society more effectively. It is not of fancy value!”

Skill
“More skilful I am more the change that I can bring about. I must be skilful
first in dealing with people and only then with the disease.”

Passion for the work and sense of voluntary participation

“This is basically voluntary work and I am doing it as a service! Only I can

Do what I want to do! No substitutes here!”

2) For the 12 HRGroups

The high risk groups identified are the following.

List please

Openness

The people at no risk are themselves hiding from the problem. The
moment someone is identified as at risk, there is an inevitable
“Going into cocoon” reaction. This “Not me or Why me of all of
them?” attitude is the biggest hindrance to the diagnosis and
treatment. Right material support to the link workers and to the
sympathisers is needed.

Reporting

A mechanism of reporting probable risk individuals needs to be

strengthened with an element of anonymity.

Dealing with the scourge

Counselling at appointed centres is highly effective but not

available all the time. A part of the responsibility supported by
training and material would change the psychology of the referred
individuals.

Mental strength

HRG individuals need the mental strength to deal with their own
psyche first.
 Medication

Stigma busting is needed so that medication when needed is

accepted without hassles.

Be bold or perish

The message to the individual is about the only options available.

Agony aunts and uncles?

Where is the shoulder on which I can shed my tears?

Community at large

Development and culture

Communication material if prepared without considering the local

sensitivities will at best be ignored. Sanskritised language used to
be true to the original idea made in English makes the message as
alien to the target as English is. This has been the bane of even
commercial advertisements. A strong cultural undercurrent needs
to be incorporated into the message and the format to make them
more acceptable.

Here is a paragraph from a monograph on the subject. It speaks very

loudly of the problem.

“If the importance of culture is increasingly acknowledged in public

health, finding appropriate ways to engage culture in practice have
been less forthcoming. It is interesting to reflect that the Alma Ata
declaration of 'health for all' included unified action of all health
systems and the promotion of research into alternative systems
such as Ayurvedic and Chinese medicine.Even where cultural
knowledge highlights the inappropriate nature of health
interventions, bureaucratic constraints may prevent this knowledge
from being acted upon. In Nepal, an Assistant Nurse-Midwife
programme supported by international agencies made poor
progress, largely due to the dominant cultural notions of gender
that meant young single women working in remote rural areas had
little authority and were met with suspicion and mistrust by local
communities.Despite these lesson learned, and documented similar
experiences in South Asia, subsequent plans remained little
changed. The author of the study suggests that Nepali civil service
 culture discouraged open criticism (to safeguard careers),
undervalued 'soft' qualitative research, and perhaps crucially, that
the Assistant Nurse-Midwife programme funding depended on
meeting targets for training young women.

- What do we do with culture? Engaging culture in development –

March 2005
-
It is clear from this experience what is happening here is not very
different. An effort to address this aspect of communication is to start in
right earnest ta this juncture.

Development and the din

Before we embark on any generalised communication in mass

media or mid media, we have to consider the din already created by
commercial and development broadcasting. There can perhaps be
every chance that our message will also be lost in the commercial
cacophony that is putting people off. Research has shown enough
evidence that recall value of the message depends on the
uniqueness with which it is delivered. We should seriously consider
the fact and make a valid option of spending the resources and time
on focussed communication.

The following three points regarding the problem of HIV/AIDS should be

given more emphasis than the usual do’s and don’ts.

Seriousness

Urgency

Relevance

Unless the general message is made very clear and an element of

practicality is added to it, there is every possibility that it gets lost in the
barrage of messages that are aired and dished out.

People don’t understand the message most of the time because they are
not serious about following it. There is again an element of cultural
barriers in following the message. The few who can rise above the level
and can understand it do not want to understand it. It is because a worldly
wise individual thinks he or she knows what is good for him. They will not
easily buy our information unless it touches the heart.
For the general awareness communication the message can be classified
basically for the specific purpose.

What is the message for?

Understanding – Do you know what it is?

Empathy – Can you help in any manner?

Acceptance – accept the fact that it is a problem

Assistance – Assist the others in coming to such an acceptance

Attitude towards the affected – Help those already affected

Prevention – Help in prevention of the spread

Extension – You could take the role of a change manager

Taking lead – you can take lead in the social service effort

The theme or the slogan could (Should) be

WHAT CAN I DO? OR HOW CAN I HEPLP?

Approach

How can you help?

We are looking at a situation where people realise that EVERYONE IS

AFFECTED IRRESPECTIVE OF THE FACT WHETHER ONE IS INFECTED OR
NOT!

There are no outsiders as far as HIV/AIDS communication is concerned.

You too are a part!!

Unless such a passionate approach is put before people, the scourge

would always be growing like what is happening now.

The appeal of AIDS communication should aim at the heart of the target
and not at the brain!!
Material and mode Requirement for communication campagns

Here also approach is highly focussed and would take a little more time
and effort to produce. It sure will yield the much desired results.

BCC and ICE Inputs and material for the three levels

1) Link Workers

(Training, attitude tuning by interpersonal and group counselling)

Training (Plan needs to be in tune with the strategy)

Awareness and clear understanding of the problem and also the

various efforts to mitigate the same

Readiness to involve in CDHP (Psychological tuning aiming at the

understanding that the services being voluntary in approach and not a
paid job. Recognition, satisfaction, social status are the best part of the
emoluments.)

Passion towards the work (You love to do what you want to do)

Technical knowledge

Support material (a-for their consumption and b- for assistance in

executing their work on the field.) This material can afford to be more
strong on information and education. Link workers should know enough
about the subject because they should be in a position to answer the
questions from the people.

II) HRGroups

All the efforts of communication were till now more of IEC and not
exactly BCC oriented. Here, with the two elements of strategy (Socio –
economic, socio-cultural) in view emphasis needs to be on one-to-one
communication with some support material. Material again will be
vertically and horizontally classified into types.

Make them talk

Aim of the communication here will be to make them talk about
themselves in the beginning and then to the others.

Make them change agents

This is a major effort that can be tried for better results. As one who has
undergone all the trauma and stigma, those people coming out after tests
as not infected can talk to the others in the community about the problem.
The acceptance of the message will be worth noticing. It will be a firsthand
experience. Facilitation of such communication can be by the link
workers.

Support with material

Based again on the economic and cultural pattern of the group material
can be made available to support and strengthen the process of behaviour
change.

III) Community

To address the community has always been the aim of IEC activity
and is necessary in future also.

It is very necessary that the proposals in the strategy of NACO and

APSACS be reviewed with a fresh approach. All the ideas expressed in the
documents are welcome. But, as seen in the gap analysis and also
mentioned in the documents themselves, there were some lacunae and
implementation was not possible in an ideal way.

It is recommended that APSACS reviews all the material listed and

identifies those which can

Be used in a planned way. It is noticed that a plethora of ideas have been

implemented by various groups. There is no evidence of trying the
material in another place by another group. A central approval and
authentication mechanism would be ideal for any kind of material
produced by local groups.

Continuous efficacy monitoring of the material and methods used is a

necessity.

A strong feedback mechanism is to be built in using the now in place

system of workers.

The messages and the material will be classified and marked prominently
as useful for the various purposes such as
 Awareness

Readiness to help

Deal with HRG and infected

Involvement of people is the ideal goal. Each one teaches one about the
problem. An interesting scheme to give willing people an identity and
recognition can be planned. Any voluntary effort craves for more of
recognition than monetary returns.

Though this approach already exists, it can be made more interesting for
more people to participate.

The synergy between the welfare activities many of the governmental and
non governmental bodies is also welcome. It need not be an official
mandate but can be a formal, voluntary activity.

Officials of all the schemes of health department need to be given an

orientation about this approach.

Officers of departments of youth welfare, women’s welfare, labour and

many more departments need to be sensitised.

Direct and proxy messaging

Negative messaging

2. Communication to the Community

The following are some of the already existing media through which
communication process can continue with a new orientation. This could
perhaps happen in a subtle way and could make participants feel more at
home with the material and methodology based on local variations as
discussed earlier.

Women groups

Youth groups

Apolitical leaders

Grocer/Fair price shop

School/College
Clubs

Entertainment centres

Religious centres

Though all the other media are being traditionally used, the approach and
orientation will be fresh now. This element of religious leaders taking the
baton will add a lot of value to the process of communication. It also goes
well with any religion because the message is about compassion to the
fellow beings, righteous life etc. Material can be developed in consultation
with such groups to suit to the situation and region taking into
consideration the demographic variation.

New approach

Under the fresh approach, a thorough review of the content is necessary.

Borrowed ideas are useful in some places and not really suit in other. This
element needs be considered with the cultural sensitivities into
consideration.

Mass media, Mid media, and Traditional media can concentrate on general
awareness messaging and talk more about the psychological elements
and not the information about the disease.

Folk media

Innovative use of folk media is highly recommended. This should not be

misunderstood with the folk formats with message of our interest. Genuine
folk artist of the region, if given the proper orientation will infuse the
message in their performances subtly.

There are examples of some such exercises available.

The message when being given the following forces will be working at the
back of the minds of the target audiences.

Outsider as messenger Vs insider

(Is this message for me? Is this messenger on my side? Is he giving it

because he is being paid for it?)
Sustained or occasional

(Why are they giving the message now? Is there a new problem now? I am
OK as of now!)

Continuous dialogue

(Yes, They are talking about it so much! There must be something about
it!)

The following elements are necessary for long term plans also.

Validation mechanism

Pretesting of material

Monitoring and feedback mechanism

Course correction

Print media and HIV/AIDS communication

Interestingly the vernacular dailies have in a big way produce their local
content. They print their versions at every district headquarters. This
situation can be exploited and there could be a paid or voluntary
campaign on a sustained basis in the local press.

6. Major points to note:

• It is right time to make a moderation in approach

• There is new mechanism of link workers to act as a bridge between

the targets and the effort making machinery

• Socio economic stratification of audience

• Socio cultural stratification

• It amounts both vertical and horizontal grouping of the target

populations

• There three groups to be addressed now, viz.

o Link workers

o HRGroups
 o Community at large

• There is an openly accepted gap in the IEC activity and the material

• It is confirmed by the desk review and the field studies

• A thorough review of existing materials necessary

• Material can be accepted suitably and replicated as per plan

• Innovative use of local folk artist recommended

• HR individual as change managers recommended

• Focused messaging for various groups

• Evaluation and review to be part of the communication process