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Evolving Peer Treatment Education PLHS 2008 HIV Global Fund PFI |
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Evolving
Peer Treatment Education
Approaches in the Networks of PLHA
APRIL 2008
Population Foundation Of India
New Delhi
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(ii)
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Contents
ACKNOWLEDGEMENT
PRELUDE
INTRODUCTION
CONTEXT FOR THE STUDY
METHODOLOGY
THE FINDINGS
ANDHRA PRADESH
KARNATAKA
MAHARASHTRA
MANIPUR
NAGALAND
TAMIL NADU
CONCLUSIONS AND RECOMMENDATIONS
STATE WISE COMPARATIVE CHART Of RECOMMENDATIONS
v
vi
1
2-4
5-6
7-83
9-21
22-32
33-44
45-58
59-70
71-83
84-88
89-92
(iii)
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(iv)
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Acknowledgement
The Population Foundation of India is thankful to Tata Institute of Social Sciences, Mumbai for
undertaking this study. PFI acknowledges the sincere efforts of Dr. Shankar Das, Associate Professor;
and Dr. Shalini Bharat, Dean, School of Health Systems Studies in conducting the study effectively
and placing impressive efforts for bringing up the report with good programmatic perspective.
A very special and earnest appreciation to all the respondents, for attending the workshops and
sharing their invaluable and personal experiences. The sharing of experiences has really helped PFI
in successfully documenting the existing practices including problems faced at the field level and
evolving peer education approaches in the networks for People Living With HIV/AIDS.
PFI gratefully acknowledges the immense support received from all the District and State Level
Networks for people living with HIV/AIDS and Indian Network for people living with HIV/AIDS. It is
needless to say that without useful comments and insights by INP+; this report would not have taken
a good shape.
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Prelude
The Population Foundation of India is implementing the project “Access to Care and Treatment”
in six HIV high prevalence states in India funded by The Global Fund To Fight AIDS, Tuberculosis
and Malaria under Round 4 grant. On the basis of programme needs and experiences, PFI
identifies issues that need attention and conduct special studies to provide possible solutions. These
special studies are seen as integral elements of the programme and the results are expected to feed
the programme to improve coverage, effectiveness and ultimately profit the beneficiaries.
The study entitled “Evolving Peer Treatment Education Approaches in the Networks of PLHA” is one
such study that PFI had conducted during the Phase-1 programme. Hope the findings and conclusions
of the study presented in this report would be of significant use to the networks for people living with
HIV/AIDS across the country and to the managers implementing care and support programmes and
ultimately benefit the people living with HIV/AIDS.
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Introduction
Peer Treatment Education (PTE) promises
to be one of the effective practices
where HIV positive people are equipped
to educate about the treatment to their
contemporaries. This is an increasingly popular
strategy amongst network of PLHA as well as
providers of care, support and treatment. The
effectiveness of the strategy lies in the fact that
it is an intervention of PLHA, by the PLHA and
for the PLHA. Peer education usually involves
training and supporting members of a given
group to effect change among members of the
same group. Peer education is often used to
effect changes in knowledge, attitudes, beliefs,
and behaviours at the individual level.
It is against this background that the peer
treatment education comes as an effective and
significant strategy to fight HIV/AIDS in India.
The peer treatment educators are close to the
people in the community and well aware of the
local culture with some amount of training they
can reach out to the PLHA in their community.
Peer education is a practice widely used in HIV/
AIDS interventions and can range from providing
support and information, treatment education,
making referrals to services, counseling and
facilitating discussions to mobilize for advocacy.
The scope of peer treatment education is thus
wide enough to facilitate individual behaviour
change in the areas of treatment adherence,
safe sex practice and adaptation to a healthy
life style. Thus, the networks for people living
with HIV/AIDS have greater role in bringing
about changes at a broader social level. The
PLHA who are already on ART play a pivotal
role in educating and motivating their new
peer members, those who may require ART. The
peer tend to explain complex facts related to
HIV/AIDS in a language that they understand
precisely and socially helping greater adherence
to treatment.
The networks for PLHA have thought to be
important elements in the lives of PLHA. Better
support from peers and family means better
compliance to treatment regimes as well as
improved physiological and psychological
conditions (Collins 1994, Cox 2002).
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Context For The Study
The Population Foundation of India (PFI) is
managing a project, “Access to Care and
Treatment (ACT)” in the six HIV/AIDS high
prevalent States: Tamilnadu, Andhra Pradesh,
Karnataka, Maharashtra, Manipur, and Nagaland.
The project is funded by The Global Fund to Fight
AIDS, Tuberculosis and Malaria under Round 4
(GFATM). The first phase of the project was from
1st April 2005 to 31st March 2007. This project
is a public-private sector partnership where the
National AIDS Control Organization (NACO)
provides Antiretroviral Treatment (ART) at the
public health facilities while the PFI led-NGO/
Private sector initiative provides ongoing care
and support and follow-up services to PLHA.
The main goal of this project is to reduce
morbidity and mortality associated with HIV/
AIDS and the transmission of HIV in six high
prevalent States by combining care, treatment
(including antiretroviral treatment), prevention
and support.
Five Sub-Recipients of PFI implement the project.
One of the partners, Indian Network for People
Living With HIV/AIDS (INP+), would set-up/
strengthen district level networks, set-up treatment
counselling centres and positive living centres.
The peer education approach is implemented at
district level networks. These networks are set-up
by the PLHA and for the PLHA.
Keeping in view the importance of peer education
approach in the care and support programme, the
Indian Network for People Living With HIV/AIDS
(INP+), has ensured that the capacities of peer
educators were appropriately built, thus in the
inception stage master trainers were identified,
they were provided with 5 days training by
Engender Health Society (EHS) using structured
modules. Later the peer educators received
training from the master trainers for 3 days in
the respective States. The Table below illustrates
state-wise representation of master trainers and
peer educators as on September 2006.
States
Master Trainers
(as on Sept., 06)
Peer Treatment Educators (PTEs) trained
(as on Sept., 06)
Andhra Pradesh
29
Karnataka
29
Tamilnadu
28
Maharashtra
26
Manipur
24
Nagaland
15
Total
151
474
130
450
293
242
22
1611
Source:
1. Quarterly progress reports of DLN for Q3 to Q6.
2. Quarterly progress reports of EHS for Q3 to Q6.
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During first one year the PLHA who were on
ART were selected and after a 3 day’s training
programme conducted by the Master trainer,
they were termed as Peer Treatment Educators.
Each PTE was allotted certain number of PLHA
who are enrolled to be reached with treatment
education, including treatment adherence and
other services like counselling and referrals.
The project had made a provision that each
PTE functioning would receive Rs. 400/- as an
honorarium towards meeting his travel and
other incidental expenses in relation to his work.
PTEs were also expected to mobilize PLHA to
participate in the support group meeting that
takes place once a month at district level.
However, subsequently the project has witnessed
certain challenges. Firstly, at the time of launch
of the PTE strategy, there were not many
PLHA put on ART at the public health facilities.
Therefore identifying PLHA on ART to become
peer educators is experienced to be a difficult
task. Therefore, PLHA who are not on ART also are
chosen to become PTEs and accordingly received
training. Secondly, due to heavy community
based stigma it was difficult to contact PLHA
in the community and also several PTEs are not
willing to work in their own vicinity due to the
fear of being identified as individual having HIV/
AIDS. These factors coupled with others were
seen as major hurdles in the achievement of
optimal performance. Therefore it was thought
appropriate to re-examine the strategy of peer
treatment education.
Hence, from July 2006 strategic shifts were
made in the strategy including recruitment of
Treatment Outreach Worker (TOW) at district
level and trained him/her as a master trainer.
He/she had to further train PLHA as prospective
peer educator. During this period the honorarium
of Rs. 400/- was withdrawn to promote
volunteerism and sustainability. In addition to
district level support group meeting, the PTEs
had to conduct sub-district/taluka level support
group meetings ensuring the closer community
reach and Treatment Outreach Coordinator
provides support in organizing these meetings.
The budget provisions are also accordingly made
for each such meeting. There was no allotment
of PLHA to PTEs. It was expected that issues
like treatment education, treatment adherence,
nutrition, and other supportive services/
information were to be discussed in the 3 to 4
sub-district/taluka level meetings in a district per
month. PLHA not on ART who were selected as
PTEs continued.
While efforts were made to implement the
revised strategy, the project had undergone
setbacks at several locations. It had observed
sudden drop-out in the number of functioning
PTEs due to withdrawal of honorarium, as on
September 2006, only 30% of PLHA trained
had been working as PTEs. PFI secondary data
illustrated that although the PTEs were able
to cater to 85% of their allotment, it must be
• PLHA who are not on ART also are chosen
to become PTEs and accordingly received
training. Secondly, due to heavy community
based stigma it was difficult to contact PLHA
in the community and also several PTEs are
not willing to work in their own vicinity due
to the fear of being identified as individuals
having HIV/AIDS.
conceded that efforts of creating PTE scheme
would become futile if this low proportion (30%)
of PTEs also drops out. Also, in view of the shift
in the strategy, regular field visits show that the
role of PTEs as per revised strategy was not clear
at service delivery point level.
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Operational Framework
Primary Level
PTEs
1611
Skills
• Counselling
• Communication
• Advocacy
• Resource
Mobilization
• Reporting
Knowledge
• ART
• HIV / AIDS
• Counselling
Master Trainer
151
Attitude
• Positive
• Volunteerism
5 days training
Intermediary level
Services provided
• Counselling
• Initiating
• Care and Support
• Referrals
• Physical and moral
support
• Sharing knowledge
• Treatment adherence
Training Agency
GAPS?
Training Content
HIV & ART, Adherence, positive
prevention practices,
Counselling care & support
Positive Living Skills for PTEs etc.
Actual Effects
SERCVIoCEmS munity
PLHA
STIGMA
Desired Effects
Network Expansion
Accessibility to treatment
Treatment adherence
Support and Care
In an ideal situation, each PLHA on ART should
meet at least once in a month in order to make
sure that the PLHA adheres to treatment regime.
Further, since not more than 20 to 25 PLHA
can be covered in one support group meeting
(SGM), no clarity exists on who to call old PLHA
repeatedly or only new PLHA or a mix, to the
SGM. This raised a question on how to address
the issue of treatment adherence of each PLHA
enrolled in the networks of PLHA. In view of
the recent shift in strategy and the challenges
faced as described above, whether any change
is needed in the peer education approach?
With such questions and concerns the current
research was launched. The results of this special
study would provide inputs for peer education
programme, which in turn would help in evolving
viable approaches for effective peer education
programme and strengthen peer education
approach in the networks of PLHA.
The operational framework depicted inter-
relationships between concepts that are
described clearly in the above diagram. The
present study attempts to study diverse contexts
of PTE approach, such as HIV and ART treatment
adherence, volunteerism, training content,
positive prevention practices, counselling, care
and support, positive living skills for PTEs, etc.
In order to answer all the above questions, a
one-day consultative workshop was conducted
in each of the high prevalent state where ACT
programme is currently implemented.
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Methodology
The research design was of exploratory
nature employing the qualitative method
of datacollection,mainlygroupdiscussions
through state level consultative workshops. This
research project did not attempt to compare
the Peer Treatment Education programmes in
the six States where it is being implemented.
Rather, given the importance of particular peer
education treatment programme, State specific
attempts were made to examine State specific
issues and draw evidence from each State for
programmatic effectiveness, implementation
and specific challenges.
Objectives of the study
• To review the existing peer education
approach in HIV care, support and
treatment
• To provide inputs for strengthening peer
education approach on access to services,
treatment education and adherence
• To recommend viable approaches of peer
education.
Key programmatic questions that were
addressed:
• What could be the elements of peer
education? (What are the areas that are
possible for a PTE to take up?)
• Whether any change required in the current
peer education approach?
• If yes, what could be those changes or
approaches and how to implement them?
• What supportive tools are required to make
their job easy?
• What are the experiences of PTEs using the
knowledge gained in the training, in the
community outreach?
• What is the knowledge of PTEs on provision
of services, locally available?
• What are the current experiences of PTEs (in
terms of addressing treatment education,
adherence and other elements, in the
community.
Data collection tool
The data collection tool for the study
incorporated three parts, i) an Informed Consent
Form, ii). Registration Form, and iii) Consultative
Workshop Data Collection Instrument. All three
parts of the data collection instrument were
translated in vernacular languages for respective
States.
Consultative workshop data
collection instrument
Based on the objectives and research questions,
ten pertinent thematic areas were formulated
and a detailed set of open-ended questions
were prepared in ten different sections. The
data collection instrument entails the following
sections:
• The research design was of exploratory
nature employing the qualitative method
of data collection, mainly group discussions
through state level consultative workshops.
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Section I: Objectives, Components and Gaps in
PTE Approaches.
Section II: HIV Treatment Adherence.
Section III: Programme Implementation and
Integration.
Section IV: Training and Supervision.
Section V: Programme Activities to Foster Behaviour
Change.
Section VI: Care and Support for PLHA.
Section VII: Stakeholder Involvement.
Section VIII: Finding and Keeping Peer
Educators.
Section IX: Sustainability.
Section X: Engender Health Society Modules
and Supportive Tools.
These themes were subsequently developed in-
to a discussion guide. Under each thematic area,
mainly open-ended questions were framed to
explore in depth aspects of various issues under
discussion. A few close ended questions were
also developed where these were felt necessary.
Initially a draft of the discussion guide was
prepared and shared with stakeholders to
determine the nature of questions and also to
make it culturally relevant and meaningful. The
tool was next translated into Marathi, the state
language of Maharashtra, which was chosen as
the first site for data collection. Based on the
data collection experience at this site, the tool
was modified to include more gender specific
issues and concerns and also issues relevant to
marginalised groups, namely MSM, IDUs, and
FSWs. These modifications further helped in
exploring the dynamics of treatment seeking,
impact of stigma and issues pertaining to
minority groups, such as HIV positive IDUs,
MSM and sex workers. The tool was translated
into the remaining five state languages and
administered.
Data collection
As designed, a one-day consultative workshop
was organised in each of the six high HIV
prevalent States between February and
March 2007. The consultative workshops were
organised for a day. The PFI State Units helped
in mobilizing the participation of the Peer
Treatment Educators (those who are currently
working and those who have dropped), District
Level Networks staff, members of marginalised
groups, NGO staff, TCC (Treatment Counselling
Centres) Peer Counsellors, and TAEO (Treatment
Access and Education-Officer). At each
workshop approximately 32 participants were
divided into 4 sub-groups. Each sub-group was
assisted by a local rapporteur and documented
the entire discussion.
The sections IX and X of the data collection
instrument were specifically designed for the
higher level functionaries like DLN’s officer,
TOWs, and counsellors, and their views were
noted in detail in separate interviews which were
conducted by the rapporteurs and facilitated by
the local facilitator.
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The Findings
Respondents selected for the workshop
were invited to a central location in each
state as per the convenience of majority
participants. The main guiding principle for the
workshop was to answer the key questions raised
through a facilitation process. Both men and
women PTEs were encouraged to participate;
and there was a special effort made to include
gender dimension of issues identified for the
workshops.
Special provision was made to focus on the
heterogeneity of the PLHA community. Thus,
MSM, FSWs and IDUs were included in the
groups so as to capture the unique nature of
issues of the sub-groups. An effort was made to
include at least one representative from each of
these groups, wherever applicable and possible.
The main target respondents or workshop
participants were as follows:
• Trained Peer Treatment Educators
• PTEs who had worked (received allowance
and showed some performance)
• PTEs who had dropped-out
• DLNs (District level networks of PLHA)
• TCC staff (DLN-Social Worker, Counsellor,
District Network Officer, and Treatment
Outreach Coordinator).
• Treatment Counselling Centre—Peer
Counsellor
• Vulnerable Groups (MSM, CSWs, IDUs)
• NGO outreach staff working in PPTCT
programmes
• Representatives from the networks of PLHA
in each of the six states.
Consultative Workshops
Andhra Pradesh
Maharashtra
6 High Prevalent States
q
Manipur
Nagaland
FAC I LI TAT O R S
Karnataka
Tamil Nadu
Consultant
State PFI Coordinator
pmu
Local facilitator
PARTI C I PANTS
Rapporteurs
PTEs W/D
DLN staff
TOCs
Sexual Minority
NGO Staff
TCC Counsellor
SPA/TAEO
At each workshop approximately 32 participants divided into 4 sub-groups
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The flow chart illustrates the target respondents
of the consultative workshop.
The discussions which had taken place were
carefully documented for each sub-group in
verbatim fashion. Each State findings had
emerged as distinctive in nature and findings
have substantiated the uniqueness. Each
state is treated as a case and in-case analysis
is suggestive of peer treatment approaches
applicable to that particular State. However,
to evolve peer treatment approaches at a
national level cross-case analysis has also been
done. Considering the State level contexts,
recommendations have been made at the level
of State and commonalities have been placed at
the national level.
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Andhra Pradesh
The Andhra Pradesh State Consultative
Workshop for peer treatment educators
was conducted on 30th March 2007
in Hyderabad. All together 28 participants
attended the workshop from various districts
of the State and participated in the day-long
group discussion. The following discussions
and findings emerged as a result of one-day
consultative workshop.
Objectives and components of
PTE – Participants perspective
Perceived effects of the PTE
programmes on the PLHA
THE PTE programmes were seen to have
a positive impact on the PLHA, the main
beneficiaries of the programme. It was through
the PTE programme that the PLHA were able to
increase their knowledge about ART, treatment
adherence, side effects of the treatment,
importance of nutrition and its availability,
maintaining a proper diet, and establishing
linkages with network organizations. The
According to the participants the overall
objective of PTE programme was to educate and
encourage the PLHA for treatment so that they
are able to live positive and healthy lives.
The specific objectives of the programme were
stated as:
• To share knowledge on ART with PLHA
• According to the participants the overall
objective of PTE programme is to educate
and encourage the PLHA for treatment
so that they are able to live positive and
healthy lives.
• To identify PTEs from amongst the PLHA
• To identify PLHA who have dropped-out of
treatment and counsel them
• To help the PLHA develop a positive outlook
• To mobilise support for the families of PLHA
• To provide regular follow-up of PLHA on ART.
The groups identified home visits, treatment
adherence/education, counselling, providing
information on HIV/AIDS, home-based care as
core components of peer treatment education.
group shared that most of the PLHA under
the programme were improving and appeared
healthy which they attributed to improvement
in their level of knowledge and social support
systems. The specific inputs the PTEs listed
included knowledge regarding treatment with
ARV medicines, observance of basic regulations
of the treatment, development of positive
attitude and family support. Some PTEs also said
that some PLHA were also able to fight the social
stigma by disclosing their status in their family/
community.
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The programme had helped them to convert
their negative thinking patterns to positive
ones. The programme enabled them to know
and share experiences of other PLHA through
support group meetings, which rekindled hope
and desire to live a long and healthy life.
to give up high risk behaviours such as excessive
consumption of alcohol, smoking and sex with
multiple partners. One of the respondents
reported, “Even though my life is spoilt, I should
not infect others. The virus should remain with
me and should end with me only”.
The group reported a remarkable change in the
attitude of PLHA in the community after they
got associated with the PTE programme. The
group informed that the presentation of success
stories of some PLHA, specific case discussions
and experience sharing in the support groups
meetings had changed their misconceptions
and meaning of living with HIV/AIDS. They
started common belief of living a meaningful
life even with HIV/AIDS because the PLHA in
the community understood that it was possible
to do so with strict observance of Antiretroviral
Therapy.
Most of the participants felt their involvement in
the peer treatment education programme was
• The programme had helped them to
convert their negative thinking patterns
to positive ones. The programme enabled
them to know and share experiences
of other PLHA through support group
meetings, which rekindled hope and desire
to live a long and healthy life.
responsible in bringing about a notable change
in the behaviour of PTEs as well as the PLHA. By
being involved in the programme they were able
to develop a sense of responsibility; a mission to
prevent spread of HIV infection. While speaking
for themselves some of them said it helped them
The PTE programme, in particular, seemed to
have proved beneficial to tackle issues related
to stigma and discrimination. The group shared
an example where, in “Vemulapudi” Village
of Vishakhapatanam District, one of the
teachers was boycotted from the society
because of her HIV status and health
condition. She sought help from the District
Level Network (DLN), where she was guided for
treatment which has resulted in improved health
status. Subsequently, through the awareness
programmes/counselling in the community, the
workers of the DLN helped her to regain her lost
prestige.
Some PTEs said that they were able to dispel
HIV and AIDS related fears from their minds and
instill faith and hope for a better life through
referrals to care and support programmes.
Through community out-reach initiatives and
family counselling, the programmes is able to
garner family support for them and the AIDS
awareness programmes assisted them in getting
the support from society/community leaders to
carry on the programme. It has also enriched
the PTEs and the PLHA on information related
to available services especially on ART centres
and obtaining loans. Networking with other
PLHA also has become possible for some of the
PTEs as they are now able to reach out to other
PLHA and attempt to solve their problems and
educate them on issues related to the disease
and treatment. One of the PTEs summarises
his experience, “Now they are able to lead a
better life with courage and confidence. They
survive like other normal people once they are
on treatment.”
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PTE Programmes
and behaviour change
In order to bring about any behavioural change it
was essential for the PTEs to know about the “high
risk” behaviours of the PLHA. It was generally
through the counselling and educating sessions
that the PTEs became aware of behaviours such
as excessive alcohol and tobacco consumption,
multi-partner sex etc., of the concerned PLHA.
Many opined that for bringing about a positive
behaviour change in the PLHA there must be
frequent health education programmes from
doctors and experienced leaders. In addition,
regular individual counselling by PTEs would prove
beneficial. It was imperative to promote condom
use amongst the PLHA. The group believed that
awareness about “high risk behaviours” and its
prevention through cultural programmes must
be initiated in the communities. Local folk and
cultural programmes such as ‘KALAJAATHARAS’/
film shows/IEC camps, street plays, regular follow-
ups, forming support groups, free yoga coaching,
involving them in regular and continuous social
activities, keeping them away from their regular
peer group could be some initiatives towards
behaviour change.
Most of the group members felt that such peer-
led activities must be organised every two to
three times in a month especially in the evenings.
A few members amongst the group felt that they
should be conducted once a month. Few opined
that it should be conducted on weekly market
days. While a few suggested that they should
be conducted at the Gram Panchayat meetings
and on special occasions examples religious
‘Jataras’.
Existing peer treatment—
Education approach
The groups unanimously expressed their opinion
about the existing peer education approach as
beneficial and good. The reasons cited were,
• It was through this programme that the
PTEs were able to communicate about the
services available for the PLHA, for example,
efficacy of ART treatment and its availability,
information about loans and widow pension
schemes.
• Infected and affected children of PTEs as
well as PLHA were getting support in terms
of education and nutrition from NGOs
and governmental organizations. They
sometimes received gifts from foreign
nationals through NGOs.
• Through the PTE approach the network of
PLHA has improved.
For improving the existing peer treatment
education approach, the group provided the
following suggestions:
• Increase the number of PTEs to enable wider
coverage of the PLHA population
• Involvement of families and couples in the
meetings and advocacy programme needs
to be encouraged, especially in the case of
women PLHA.
• The PTE programme could be more effective
by restarting the honorarium provided to the
PTEs. It was mentioned that they would be
able to put in greater effort and time into the
programme if their expenses were met with
regular financial support.
• Also regular reporting formats, other support
facility and “minutes” maintenance book,
regular follow-ups visits would help in
documenting the efforts.
• If village elders and the local leaders were
given knowledge about the programme,
they would extend their help and may help
in reducing the problems such as stigma and
discrimination faced by PTEs.
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• The PTEs must be provided with Identi-
fication Cards to use in emergencies such as,
during the time of visit to health facilities,
government officials etc.
• Ensuring that the candidate selected as
PTE matches the minimum desired profile.
He/she must be educated, willing and have
desirable personal qualities like flair for
learning, communication skills, patience and
commitment to work.
The group submitted that presently there was
only one PTE officer for 43 mandals/blocks who
was on paid salary, the rest of the PTEs were
volunteers. It was difficult for them to work in
villages without salary. Mandals must be divided
into divisions and paid PTEs should be appointed
at each divisional level.
HIV treatment adherence
The following working definitions were provided
by the group for HIV treatment adherence. It
reflects a mix of their theoretical inputs at the
training and practical experience in the field.
“Treatment Adherence means continuity and
follow-up of the treatment. It means drugs
should be taken regularly and punctually after
food. The patient must pay follow-up visits to the
ART centre to get the medicines. After starting
ART treatment, for the initial 14 days the PLHA
should be available to Doctor. If there are any
problems or side effects, they should immediately
contact their Doctor”.
“Treatment adherence means intake of regular
treatment and long-term follow-up. Treatment
adherence also means taking accurate dose
of ART at a particular time of the day, taking
nutritional supplements, maintaining personal
hygiene, indulging in safer sex and having a
complete understanding of advantages and
disadvantages about using ART”.
Importance of ART:
Adherence issues
It was agreed by all participants that treatment
adherence was an important issue. The ART
must be continued life long, if started, otherwise
it would lead to side-effects and drug resistance.
Most believed that it is vital to continue treatment
for healthy life and increased life-span. It was
also reported that it is essential for the PLHA to
give up the “high risk behaviours” as these could
hinder the treatment regime.
The group had varied opinions on the issue
regarding feasibility of meeting the PLHA
beneficiaries once every month. Some group
members believed that it is feasible to contact
PLHA on ART on a monthly basis only if they stay
very near to Network Office or close to the place
of PTEs. Most of the times, it was the distance,
which posed hurdles in realizing the objective of
meeting the PLHA every month. Travelling long
distances is tougher for financial reasons as the
PTEs are not given any travel allowance. Some
villages are inaccessible and making visits to such
places is very exhausting and time consuming.
According to the group the following were
the difficulties faced by PLHA in treatment
adherence –
• The PLHA on ART fear getting noticed by
anybody from their local area while making
frequent visits to the ART centre/hospital,
which, in turn may lead to stigma and
discrimination.
• HIV treatment adherence is difficult because
of its side-effects, life long requirement and
nutritional supplements.
• The fear of PLHA regarding side-effects of
ART.
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• Some PLHA were hesitant to start ART,
because once they start they would have to
continue treatment for life time.
• Poor financial condition of the PLHA
prevented them to take a nutritious diet,
which is a vital component of ART.
• The misconceptions and biases of the PLHA
regarding ART.
• Since the ART Centres/hospitals were mostly
far from the place of residential places, they
are unable to meet the travel expenses.
• Though the treatment is free of cost, the
PLHA face financial constraints because of
other expenses such as boarding and lodging
etc., whenever they had to visit the ART
centre which was usually far away from their
villages/towns.
• Some PLHA on ART felt that they were closer
to death and therefore, there is no point in
taking medicines.
• Sometimes the PLHA do not find anyone
from the family to accompany them to the
treatment centre.
• There were problems reported like
unavailability of drugs at ART centres, which
would require more than one visit to the
centre.
• Many people forget to take their medicines if
they were busy at their workplace.
Challenges for PTE
The PLHA fear being stigmatized by the
community if their positive status was known.
They therefore do not want the PTEs to visit their
residential places as it might arouse suspicion of
the community members. Some of them reported
that sometimes PTEs get blatant answers from
the PLHA like – “We don’t want your service” or
“It is because of you people that all the villagers
have known about our ill health”.
On the other hand many group members had
experienced inconvenience due to change of
address of PLHA on ART. Some group members
reported non-acceptance on the follow-up
day by the PLHA who experienced side-effects
despite the initial counselling on side effects of
the treatment. PTEs being PLHA themselves had
numerous health problems, which sometimes
dissuade them from making a follow-up visit.
Several PTEs suggested that as some of the
important resources which would be useful for
the PTEs in carrying-out field work effectively
and efficiently are some amount of honorarium,
bicycle and a cell phone.
Implementation and integration
of the PTE approach
The importance of treatment adherence was
stressed upon at the beginning and on each
follow-up visit. Various important aspects
such as importance of treatment, treatment
regimen, side effects, regular follow-up, how
to controls HIV virus and increase CD4 count,
the reduction in life span if the medicine was
stopped and development of resistance to the
virus were explained to the PLHA. The PLHA
were counselled and explained that once ART
was started it must be continued for lifetime.
They were also educated to give up their “bad
habits”. The PTEs counsel the PLHA on all
the above issues. They also make the family
members responsible for treatment adherence
by explaining about treatment. The “Dos” and
“Don’ts” of treatment are also explained to the
• The PLHA fear being stigmatized by the
community if their positive status was known.
They therefore do not want the PTEs to visit
their residential places as it might arouse
suspicion of the community members.
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PLHA and their family members. One of the
respondents said “we give our own examples to
make them understand better, share out positive
experience and results”.
There were many problems, which were identified
by the group members for implementing PTE
programme. Primarily, absence of honorarium is
a major hurdle in carrying out the duties as PTE.
The group felt that honorarium must be provided
and must be increased as PTEs. There must be
some system to check the change of addresses
of the PLHA. The Government organizations,
Panchayats etc. must help in this. This would
save a lot of time and effort of the PTEs which
could be constructively utilized. It was difficult
for the PTEs to travel to distant places to meet
the PLHA; it was even difficult to visit places
which lack transport facilities.
Linkages to other related services were considered
vital by the participants. Other services/activities
which have to be linked with PTEs were identified
as home-based care programmes, condom
promotion, counselling, service information and
HIV testing referrals. The PTEs suggested that
there was a need to link with programmes for
child education and support.
Efforts and initiatives for
greater adherence
It was learnt that PLHA falter with treatment
regimens mainly due to financial constraints.
It was therefore suggested that if the PLHA
were provided with free travelling passes
in buses and train, it might result in better
treatment adherence. Some members of
the group were of the opinion that PLHA
should be provided with the medicine at their
doorsteps. There should be some incentives
like provision of nutritious food at the centre,
which would motivate the PLHA to visit the ART
centre. Another important effort required on
the part of PTEs was to monitor and follow-up
the PLHA more frequently for bringing about
greater adherence. There was a greater need
for motivational lectures at the PLHA meetings
by the PLHA themselves who had experienced
positive effects of the drugs because they strictly
followed the drug regimen.
It was vital to involve the family members of
the PLHA for bringing about greater adherence.
The family concern and initiative motivate the
PLHA to stick to treatment regimen. The group
members felt that greater adherence could be
achieved if some awareness programmes were
telecast.
Presently the PTEs were using counselling as a
strategy to convince the PLHA to adhere to the
treatment. Some PTEs said, “when PLHA go to
other places or relative’s houses, we ask them
to take the tablets in another cover or remove
bottle wrapper so that no one can notice or
suspect what they are, and we do follow the same
when we go out. And they can take only those
number of tablets that they require instead of
the whole bottle”. The PTEs give the PLHA some
suggestions or tips so that they do not forget
to take their medicines, for example, asking the
PLHA to keep the reminders such as temple bells,
lunch time of school children, starting time of a
serial on Television etc.
Profile of an effective PTE
The group agreed that the PTE must have a
minimum level of literacy. They felt that he/she
must have at least completed ten to twelve years
of formal education. He/she must possess good
communication and rapport building skills. He/
she must take interest and acquire the necessary
and recent knowledge about HIV/AIDS and
treatment adherence. There are certain personal
qualities which are extremely essential like self-
motivation, leadership qualities, patience, flair
for learning, empathetic, outgoing, respect for
others and commitment to work.
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Continuity of PTE programme
PTEs felt that getting remuneration is important
for their work. Most of the PTEs were either
unemployed or earn very little. Many times PTEs
join the programme with a hope and expectation
that they might get a government job, later on.
They however added that money was not the
only motivating force which drive them to do this
work but it is essential to carry out their jobs as
PTEs. Secondly, the group felt that more training
and capacity building programmes could help
in continuity of the programme. The group also
desired encouragement from the DLN.
There were varied views regarding the PTE being
a paid staff or volunteer. Some believed that the
PTE must be a volunteer with an honorarium.
Others held that PTEs should be volunteers, but
need travel allowance and reimbursement of
other expenses at the field level, e.g. for their tea
or snacks since they too were PLHA and had to
take proper nutrition. The rest of the members
voiced that PTEs should be paid staff. However, all
the participants expressed that the PTEs should
be value-oriented and committed to work.
Consequentially most groups suggested that
the PTEs must be paid up-to Rs.1,000/- or paid
as per the targets they achieve. Some members
felt that they should be paid anything between
Rs.1,000 to Rs.1,500 per month as honorarium.
These members also insisted that the PTEs
must submit bills and vouchers of the expenses
incurred at the field. A few participants believed
that for part time work they should be paid
Rs. 1, 000 to Rs. 1,500, and for full time work they
could be paid Rs. 4,000 per month.
A group of respondents expressed that all the
PTEs were working on voluntary basis with a
desire and determination to serve the PLHA in the
society. They had the opinion that volunteerism
could be promoted by recognizing PTEs’ services
through encouragement and rewards, increased
involvement in meetings/conferences, engaging
them in motivational talks/training and
organizing felicitation functions for those who
had done outstanding work.
Challenges in identification and
sustenance of PTEs
There were no systematic selection criteria
for enrolling PTEs in place. Ever since the peer
treatment education had become voluntary
work without any financial support, less number
of people were coming forward to become PTEs.
Playing the role of PTE often requires revelation
of positive status. It was sometimes a deterrent
for PTEs working close to their communities.
The field poses numerous challenges like “wrong
addresses” and “change of addresses” of the
PLHA which de-motivates the PTEs to continue
their jobs. The male PTEs expressed their
discomfort in working with widow PLHA. There
were reported cases of PTEs who had quit their
jobs after they managed to get a loan. Another
genuine concern which was voiced by the group
was their own health problems which restrict
them to sustain as PTEs.
Attitudes towards PTE
programme
Most of the PLHA appreciate the PTE programme.
However, there are also some PLHA in the
community who are sceptical about the work
of PTEs, as they feel that PTEs are paid for their
targeted assignment, hence, the PTEs approach
and reach out to them. The new PTEs face the
problem of non-acceptance from PLHA. Since,
the society still discriminates and stigmatizes
the PLHA, the PTE programme runs on the basis
of confidentiality. As regards the attitudes of the
network staff, many PTEs reported, “Network
staff plays a supportive role in our work. They
are providing nutrition, and conducting support
group meetings”. They also appreciated the
services of DLN as they are caring for PLHA. They
were bringing some hope into the life of PLHA.
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The project staff had a favourable and positive
attitude towards the PTE programme. They were
helping the PLHA in knowing the services such
as ART treatment, care and support, addresses
of treatment centres, treatment adherence,
side-effects etc. A participant remarked: “They
are happy with our work, but we expect some
financial support for our work from them”.
Training and supervision
The group was thoroughly convinced with the
importance of training. The group added that
they require at least six days of training instead
of three days. According to the group, tools and
resources could prove beneficial for the PTE
programme.
By and large the training efforts had been
appreciated and it was believed that training had
contributed to the learning as PTEs. Nonetheless,
there was an expressed need for broadening
the training curriculum. Areas like treatment
adherence, improvement and development of
communication skills, rapport building, recent
and advanced knowledge about HIV/AIDS,
STD management and individual, family, group,
pediatric ART counselling, Home-based care
etc. should be incorporated. On the other hand
the training methods should be based on more
participatory learning through discussion, role
play, case studies, demonstration and training
should be purely in local language.
The tools which could prove advantageous for
the peer treatment education programme could
• The training to PTEs by the Master
Trainer was reported to be extremely useful
in terms of learning about ART treatment,
treatment adherence, diet, maintaining
follow-up and monitoring drop-out cases.
be pamphlets, brochures, flip chart, model of
Penis, Kit bag with other Information, Education
and Communication (IEC) material on side-
effects and the improvement after treatment.
The training manual of Engender Health Society
may be translated in local language and that
could be given to all PTEs.
The training to PTEs by the Master Trainer was
reported to be extremely useful in terms of learning
about ART treatment, treatment adherence,
diet, maintaining follow-up and monitoring
drop-out cases. The lesson on counselling skills
has improved the communication between the
PTEs and the PLHA. The training was useful
in clarifying the role of PTE, which had led to
role clarification and greater self-esteem. In
short, the training has led to enhancement of
knowledge, self-confidence and developing a
positive approach to life.
The group was generally satisfied with the
input and methodology of the training that
they received as they could often use the same
examples, communication strategies, success
stories for educating and counselling the PLHA.
Some of the participants reported that they had
problems in understanding the content of the
programme because of language problems. One
of the participants added, “There were problems
in understanding the content because the trainer
had an accent”. Most of the group members
wanted to have training modules and hand books
in the local languages so that they could refer to
them as and when required. They expressed the
need of refresher training programmes, which
would help them to update their knowledge and
hone their skills.
Gaps in training programme
The training programme has enabled the PTEs
to discharge their duties on the field. They have
benefited a great deal from the knowledge
gained during the training sessions and used
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it repeatedly to explain to the PLHA about the
HIV and AIDS, its treatment and opportunistic
infections. Many times, the PTEs make use of the
examples/stories shared by the master trainer to
communicate difficult concepts in the field.
Nonetheless, along with classroom training,
field-based training must also be given. They
wished for more inputs in specific areas for
example, side-effects of medication and care of
Opportunistic Infections (OIs). Some participants
pointed out that there were certain gaps in the
training curriculum e.g. Counselling methods,
information on drug impact and side-effects etc.
The training may also include information on
drug combination and whether ART to be taken
during other general ailments or OI.
Suggested areas of further
learning
The group suggested the following specific
areas:
• ART Counselling
• Pediatric Counselling
• Pediatric ART
• Home-Based Care
• Nutrition
• Yoga and Meditation
• Individual and Family Counselling
• Communication Skills
• Sharing Field Experiences
• Behavioural Change
• Time Management
• Inter Personal Relationship and Skills
Care and support for PLHA
The PTEs were confident in providing support
and refer PLHA to health facilities in the areas of
Opportunistic Infections (e.g. Diarrhoea, fever),
treatment adherence, treatment education,
follow-up, nutrition, diet, home-based care,
counselling. To quote one of the participants,
“We have gained information and knowledge
about care and support centres in the locality, so
during the time of any need we refer them to the
centres for different services”.
The PTEs reported that they were able to provide
guidance and support to PLHA at the time of
any side-effects while on ART, Provide nutritional
support and give vitamin tablets when they were
weak, referral to home-based care and support
NGOs whenever the PLHA needed. Also PTEs
helped PLHA to fetch loans, being with them at
the times of physical and emotional distress.
They however were not able to provide care
and support for PLHA who were in need of
In-patient care and treatment, terminally ill
cases, and cases requiring specialized services
like gynecological and pediatric problems. The
PTEs face limitations in providing care and
support when their own confidentiality was at
stake. At times when they disclosed their sero-
positive status they faced social stigma and
discrimination. They also encountered problems
when the PLHA was suffering from an infectious
disease like Tuberculosis.
Specific concerns:
Women and MSM
The members of MSM group feel uncomfortable
to share facts about their sexual orientation.
They were found to be inhibited and shy while
discussing about their problems to others. A few
• Some participants pointed out that there
were certain gaps in the training curriculum
e.g. Counselling methods, information on
drug impact and side-effects etc.
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participants in the group shared that since MSM
were not accepted in any institution, they need
special clinics or treatment centres.
Women PTEs shared their set of distinct problems.
Along with PTE work they had to look after their
homes, so it was difficult for them to visit far off
places. Moreover, if their husbands and family
members were not supportive the women PTEs
found it extremely difficult to carry on with their
PTE work. Women PTEs were sometimes labelled
as “infide” if they remained outside the home
for long hours. Sometimes the family members
of PLHA suspect that women PTEs had got
infected through sexual mode and that they
were previously sex workers. The attitude of
the PLHA and their families with women PTEs
is cold and negative. One of the woman PTEs
added, “We face several problems in the field
while demonstrating the usage of condoms.
Sometimes due to embarrassment we cannot
answer all the questions asked by the clients.”
The women PTEs suffered greater stigma and
discrimination if their status is disclosed. Therefore,
there was a constant fear of their status being
known by others. Sometimes they were harassed
by the male PLHA by asking irrelevant questions
which had sexual underpinnings. Hence, they
were not able to communicate effectively with
the male PLHA. Some men have behavioural
problems like drinking. This made it all the more
difficult for the women PTEs to visit or counsel
them. Many a times, the PLHA took advantage
of their soft and non-retaliating nature.
The women PTEs reported that they faced
competition from the male PTEs who were
generally able to handle more workload and
cover wider area of operation. The women
PTEs faced limitations in terms of limited work-
hours they put in because of their household
responsibilities and accountability towards
their family members. Women PTEs and PLHA
were concerned about their children’s future
who would be orphaned after their death. They
wished for more support in terms of residential
educational programmes for their children,
provision of nutritional supplements, etc. The
women PTEs also asserted for better medical
support for their gynecological problems
they may have developed so that they could
maximize their life span and take care of their
children. Most of the women PLHA in the villages
repeatedly insist on maintaining confidentiality
and some of them suggested that ART centres
should be available at all districts, mandals and
villages so that they could minimize their time
and effort in obtaining them. Reportedly women
PTEs did not have a separate place for meetings
where they could discuss their problems.
In addition to the above there are specific
concerns expressed by MSM. The MSM face
difficulty in disclosing their health status to
persons of the opposite sex. Sometimes the family
members do not accept and support them which
lad to depression and feeling of worthlessness. It
was therefore, imperative that the societal and
familial attitudes must change to accommodate
the PLHA with dignity so that they are able to
live their remaining life in a healthy fashion.
Both MSM and women PTEs feel a lot more
comfortable when the PLHA are MSM and
women respectively.
Community support
The respondents of the group reported that
the PLHA and PTEs had not got the full hearted
support of the community as yet. At the same
time most felt that generating community
support was the need of the hour. The support
from the community leaders could help in
facilitating the PTEs activities. The issues of
stigma and discrimination bother the PLHA and
PTEs so much so that it sometimes poses as a
hurdle. It was noted that PTEs never identify
themselves as PLHA in the community; they
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call themselves as health workers. This identity
sometimes helped to mobilize community
support. During the initial visits to the community
they did not get any support. However, visiting
the same community frequently had led to their
acceptance. The PTEs were getting invitations
to the village meetings like Mahila Sangh,
Gram Sabhas, etc. Since the community people
are sensitized they provided the information
and at times help the PTEs in identifying HIV
positive people in the community. They are
also getting support to organize awareness
programmes.
Some of the needs expressed by PLHA in the
community are:
• Empathetic understanding
• Nutritional support
• Places to conduct the meetings
• More number of care and support centres
• Pediatric ART treatment centres
• CD4 testing facilities.
The group felt that the present existing
knowledge of PTEs regarding the locally available
resources and services was sufficient to carry out
their activities.
Stakeholder involvement and
contribution
The critical stakeholders that may affect PTE
programme implementation and behaviour
change in the intended audience were identified
as VCTC counsellors, peer counsellors, family
doctor, village Sarpanch, Key members of Gram
Panchayat, Youth Group, SHG, Mahila Mandal,
Nehru Yuva Kendras, ANMs, Health Workers,
ZPTC Members, DWACRA Members, Anganwadi
workers, key persons like opinion leaders, the
DNOs, Network staff, social workers, and local
leaders.
These stakeholders could contribute through
their valuable speeches, participation in
cultural programmes and “KALAJAATHARAS”,
donating money and materials to conduct
such programmes on those days. Usually when
an important member was involved in such
programmes and advocates the same, it had a
very good impact on the target group. In such
programmes supported by important people
had attracted greater participation from
people, when they gathered in large numbers
to participate in the programmes. Many a times
they contributed in the form of donations and
human power to help in the PTE programme.
The motivation for the stakeholders was
non-monetary, their participation in the
PTE programmes got them recognition and
reputation in the society. They also benefited
from the health talks which were arranged on
HIV/AIDS and health related issues. Some of
the PTEs reported that they were contented
with the support, gratitude and appreciation
they received from the community. The PTEs
maintained rapport with the stakeholders so that
they could help them in planning programmes,
recreational activities, and review meetings.
They also helped PTEs to initiate community
awareness programmes like youth club meetings,
SHGs meetings, Anganwadi programmes,
parents meetings in the schools etc.
Selection of PTEs
The identification of new PTEs with good
communication skills was not always easy. There
were a number of challenges faced in terms of
retaining the appointed PTEs. One of the reasons
cited was lack of sufficient honorarium to the
PTEs. At the same time most often the PTEs had
severe financial problems. The PTE work being
honorary in nature added to their financial
burden. This kind of unpaid work was often not
appreciated by the families of the PTEs. Another
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challenge in terms of appointing the PTEs was
that it was difficult to find people who had a
desirable profile of minimum literacy and quite
a number of personal qualities. The poor health
of PTEs was also a great impediment in carrying-
out their duties.
Most respondents opined that active members
of the local community who have very good
communication skills and good health should
be chosen. They must hail from the local area
and attend regular meetings conducted by DLN
office. Participants’ selections for PTE training
were made at the district level considering the
capacities, communication skills, motivation,
sociability, and their health status. To summarise,
PTEs are selected based on the following criteria.
• Their level of education, e.g., reading, writing
skills
• From Locales where there are more PLHA on
ART
• People who have more contacts/network
• For some, a written test on HIV/AIDS was
conducted.
Peer treatment education and
volunteerism
Reportedly some of the PTEs volunteered to
work in this field with a genuine desire to help
people infected and affected by HIV/AIDS and
interest in social service. Some of them work for
employment and career opportunities and a few
work for more experience and knowledge.
Cost effectiveness of PTE
programme
During the group discussion several members
articulated that when PTEs receive salaries for
their work, they tend to be more responsible and
accountable towards their work. They are guided
by their conscience and become answerable
for delivery of quality work. According to
them, salaried peer educators could be strictly
monitored and managed, well compared to the
volunteers. Volunteers may not be available at
all times and they worked as per their convenient
timing and wish. A salaried PTE could make more
home-visits per day because there would be no
financial constraints. Current programmes may
have budget outlay and regular expenditure
on the PTE programme but one of the most
important area which needs to be rectified is the
non-payment of travelling and honorarium to
the PTEs.
Common needs and issues of
PLHA currently not on ART
Inspite of not being on ART, the PLHA were
enthusiastic about gaining knowledge on areas
like opportunistic infections and their treatment,
treatment adherence, treatment education,
positive living etc. so that it helps them in future.
Women PLHA not on ART wanted to get
benefits through the network for their children’s
education and care after their death. They
were keen on knowing treatment availability
and eligibility conditions, STD treatment, etc.
They required moral support in case of death of
spouse and wanted to learn income generating
activities for sustenance. The Members of MSM
group demanded separate clinics and Drop-in
Centres exclusively for the members of the group.
In addition, special facilities in government
health programmes, mobile health clinics,
free medicines for opportunistic infections,
free nutritional supplement, employment
opportunities and petty loans for business and
vocational training were most common needs
expressed by members of MSM group.
Training modules
and supportive Tools
The members of the groups reported that the
DLN officers were using the EngenderHealth
Society (EHS) manuals and flip charts. However,
most of the members present in the group
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discussion were of opinion that the PTEs should
be provided with the manuals and IEC materials.
They believed that the manuals were good but
it should contain material on counselling as well.
They regularly referred to these EHS modules
which were very easy to follow. These manuals
were available in Telugu which further simplified
learning. These EHS modules were very useful
during the training by DLN Officer to Treatment
Outreach Coordinator and PTEs.
The supportive tools which could help in making
the job of PTEs easy and effective are monthly
action plans, charts for on ART adherence, various
aids as reminder of scheduled medication etc.
Suggestions made by the members towards
newer strategies:
• Number of PTEs must be increased.
• Honorarium must be reintroduced in the
range of Rs.1000 to Rs.1500 per month.
• Involvement of stakeholder groups in the
programme.
• Effective tools to monitor the PTEs.
• Regular and weekly review meetings with
PTEs.
• Coordination between all PTEs, staff and
DLN personnel.
• Trainings and exposures.
• Recreational programmes.
• Recognition, Incentives and
Encouragements.
• Promotion.
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Karnataka
The Karnataka State Consultative
Workshop for Peer Treatment Educators
was conducted on 7th March 2007 in
Bangalore. Al together there were 30 participants
attended from various districts of the state and
attended the day long group discussion. The
following discussions and findings had emerged
as a result of four group discussions.
• Educating PLHA on all aspects of treatment,
care, healthy life style, personal hygiene, diet
and nutrition.
• Providing Counselling and constant support
to the PLHA and their families.
• Taking-up issues of stigma, discrimination
and other related issues.
Objectives and components in
PTE approaches
The participants of the groups stated that the
main aim of the PTE programme is to provide
comprehensive information about HIV/AIDS
and ART as well as clarifying misconceptions
regarding the disease and treatment. Providing
care and support to the PLHA and encouraging
home-based care were also mentioned as
important objectives. Counselling and support
to PLHA and their family members is a key area
covered by the programme. Thus improving
overall quality of life of PLHA and getting
them integrated in the society and promoting
self-reliance is the ultimate goal. Training and
inducting other motivated PLHA to become peer
treatment educators was also regarded as an
objective by several participants.
Some of the important components of PTE
approach that had been identified by the group
members during the discussion were:
• Regular home visits.
• Informing the PLHA about the benefits of
ART treatment as well as side-effects.
• Ensuring treatment adherence.
Perceived effects of the PTE
programmes
Members of the groups perceived that the Peer
Treatment Education programme to a certain
extent has helped to create acceptance for the
PLHA in the community. The programme has
helped in clarifying myths and misconceptions
regarding HIV/AIDS held by the PLHA as well as
general population of the community to some
extent.
A major goal that was fulfilled by the PTE
programme was creating awareness regarding
the disease. The beneficiaries definitely showed
a rise in their awareness levels regarding HIV/
AIDS. The knowledge also created a confidence
in them and gave them hope for living. Some
of the practical information that was offered
in PTE programmes with regard to home-based
care, diet etc. helped the PLHA as well as their
families. PLHA showed a definite change in their
lifestyle and attitude towards treatment and the
ill-health in general.
They also provided advice on ART adherence and
maintenance of a healthy diet. The peer educators
could successfully provide advice regarding safe
sex, patient care, and caring for children with
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HIV infection. PLHA would often come to them
with their personal problems as well and the PTEs
would provide guidance and help.
Another observable change was that the PLHA
could more easily disclose their HIV status
without feeling threatened or scared. There
was also a marked change in the attitudes of
family members due to which there was greater
acceptance, love and support for the PLHA.
The female PLHA felt that they had been much
more effective in bringing about a change in
the attitudes of their family members; however
to bring about a change in their immediate
community was something that would require
time. But overall, there was a marked increase
in the consciousness that they had towards
their health. Most of the PTEs stated that they
themselves and the PLHA made more conscious
health decisions regarding their living, which was
something they had ignored in the earlier past.
In this sense the programme was successful in
addressing the issues and problems of infected
people. The PLHA also received information
regarding referral services, ART centres and
various benefits that they were entitled to.
Pregnant women were given special counselling
and advice and were referred to PPTCT centres
for special treatment. Peer educators also helped
in several aspects of care for PLHA by providing
advice and networking with other professional
agencies. For instance, the educational issues
of children who are HIV sero-positive were
resolved by providing guidance and assistance
by the PTEs. The general view was that the PTE
programme could help the PLHA in leading a
dignified and fulfilling life.
The programme was successful in expanding
the network of PLHA and establishing linkages
between the PTEs and medical professionals.
This definitely helped towards providing access
and care for the PLHA.
Existing peer education
approach
According to the peer educators the programme
had given them recognition and encouragement
to lead a normal and fruitful life. The programme
had provided them with a platform to network
with other PLHA. The approach that was used had
been very useful since it provided a great support
to them as well as other PLHA. The programme
is much appreciated and participants feel that it
must be continued.
However, it was felt that certain changes could
improve the programme performance. For
instance, there should be greater number of
field visits, but for that purpose more PTE should
be appointed. This need was felt mainly due to
increase in number of people living with HIV
infection and AIDS. Travel expenses and better
remuneration were also required so that the
motivation of current peer educators remains
high. The group thought that more advertisements
and media coverage of the issues could help in
awareness and acceptability of the programme.
The group believed that areas like STIs should
also receive greater attention from all forms of
media–radio, television and newspapers. It was
also suggested that special networks should be
established for CSWs to generate awareness and
encourage greater testing.
HIV treatment adherence
According to the respondents adherence referred
to taking the right medicines at the right time
along with undertaking healthy behaviours
and maintaining a healthy diet. It also involved
taking good care of one’s health so that the
chances of getting any opportunistic infections
were reduced. Another part of the adherence
to the treatment regime was getting periodical
check-up of CD4 count.
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Importance of ART:
Adherence issues
The respondents believed that adherence to
the ART treatment was extremely vital, non-
adherence was associated with drug resistance
and ineffective therapeutic outcome. Moreover,
non-adherence results in increased viral load and
the onset of various opportunistic infections.
Adherence was also said to reduce the effects
of the HIV infection and help the patient cope
with the disease. Interestingly, it was also felt
that adherence to the regime was important,
otherwise it brings a bad reputation to the PTE
who had suggested the patient for treatment.
In order to educate clients about the importance
of ART, peer educators used posters and life
testimonies and often gave their own examples.
Counselling was also carried out on a regular
basis along with sharing of positive experiences.
Innovative technique such as role play, positive
talk were used to convince patients. Home visits
were effectively used specifically for the purpose
of adherence. In order to explain complex details
of ART drugs and their dosage, many PTEs
made use of available tools such as stones and
pebbles. They also gave individualized advice to
the patients to fit the medicine in their specific
lifestyle and dietary habits. Constant motivation
and support by PTEs and families was required
for adherence.
According to the group, the following were the
difficulties of treatment adherence:
• A significant number of the patients that
they dealt with were uneducated, so it
became difficult to convince them regarding
adherence.
• Side-effects were a deterrent for maintaining
regular medications.
• Many women PLHA easily forgot the medi-
cations due to the numerous responsibilities
at home. Going for the monthly visits to the
ART centres was also not always possible for
them, as they depended on other male mem-
bers of the household. Many of them do not
receive adequate support from their families.
For women who lived in joint families it was
difficult to hide their HIV status while main-
taining their drug regime. Simple things like
mentioning the purpose of the medication
on its box as “HIV Control Tablets” served as
hurdle in adherence. Home visits from peer
educators of the opposite sex were also not
well accepted by the family and community
members. All of these reasons made adher-
ence difficult.
• Some PLHA are not totally convinced of the
effectiveness and importance of ART. They
maintained their misconception that if the
treatment is free, it might not be of good
quality.
• There are also several misconceptions
regarding indigenous healers and their ability
to heal AIDS as opposed to ART, which is also
a stumbling block in adherence.
• For many PLHA who have hectic working
patterns it is difficult to maintain the drug
regime.
Efforts and initiatives for greater
adherence
The most important suggestion was that of
regular counselling and follow-up of PLHA on ART.
On several occasions the PLHA took time to open
up in front of the PTEs and share their doubts,
experiences and fears. Hence repeated home-
visits and counselling are essential for bringing
about greater adherence. Peer educators feel
that giving life testimonies particularly by using
their own example in counselling was effective.
This also made the PLHA more comfortable in
sharing his/her doubts, views and apprehensions.
Special counselling was needed regarding
children who were on ART for their mothers and
family members.
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Extensive coverage of the issue in the media such
as TV, radio and news paper could also help to
remind patient to take medicines. Other popular
art forms such as street plays could also serve as
interesting and effective tools for communicating
HIV/AIDS messages and treatment.
Participants felt that there is a need for
extensive family or group counselling. Support
group meetings are useful in this regard. If some
incentives are provided for PLHA to attend ART
centres, it could serve as an encouragement for
them to keep attending health check-ups and
take their medicine regularly. For this purpose
the local community or NGOs could contribute
and make a positive difference.
Challenges for PTE
The participants faced the following challenges
while executing their duties and responsibilities:
Locating houses of the PLHA is the greatest
challenge faced by PTE. Many a times they
grapple with incorrect addresses.
and experiences and learn from others. Maintaining
records was also an issue since the peer educators
were not given any formal training in recording
and documentation. Capacity building of the peer
treatment educators in these was felt necessary.
Also providing resources such as adequate travel
allowance and vehicles for home visits could help
in effectively implementing the programme.
The participants believed that the quality of the
programme could improve by ensuring greater
availability of ART services especially in the lower
tiers of the health system such as district level
health centres. Testing and counselling must be
encouraged further and for those sero-positive
people who were not on ART, free or concessional
CD4 count testing should be available. Most
members of the group expressed that accessible
and easily available treatment facility for
patients during the medical emergencies is one
of the most critical need of the PLHA and PTEs.
• The group felt that if certain problems
Absence of any kind of honorarium/travel
allowance becomes deterrent for many in
carrying out voluntary work.
Programme implementation and
integration
were looked into by the programme
implementers there would be a remarkable
augmentation in the effective delivery of
PTE programme.
The group felt that if certain problems were
looked into by the programme implementers
there would be a remarkable augmentation in
the effective delivery of PTE programme. One of
the major problem at this juncture is the shortage
of adequate number of peer workers for proper
and wider implementation of the programme.
The increasing number of PLHA led to increasing
workload for the PTEs. Participants also felt that
there was not enough training and resource
material being provided to them. There was a need
for more regular training programmes and follow-
up meetings so that they could share their views
It was also felt necessary to provide systematic
training and education to the peer educators so
that they could feel confident and skilful while
providing information to the PLHA. Some PTEs felt
that they were not comfortable while counselling
members of the opposite sex, hence the sensitivity
skill training may be organised. Greater linkages
amongst the health professionals, PTEs and PLHA
were also suggested.
There were suggestions from the participants
regarding activities that could be included to
make the PTE programmes more effective.
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One of the PTEs advocated that, more awareness • General health care services.
programmes need to be carried out regarding
• Advocacy and networking.
safe sex and condom use so that the PLHA
could have a safe and enjoyable married life. • Training and Capacity building.
The PTEs felt that topics including alcoholism
and drug-abuse were important for IDUs and
alcoholics. Other aspects such as management
• Guidance to family members regarding
home-based care.
of opportunistic infections and STIs would also Profile of a good PTE
be very useful. PTEs should be taught new and
creative means of disseminating information to Most opined that the PTE had to be a perfect
the targeted audience.
blend of personal and professional qualities.
It was also felt that support group meetings
could be conducted once a month at a time
and at a place that would be convenient to
all, preferably during a weekend. For media
programmes such as radio and films, the evening
slot was recommended since that was a time
when most people return home after work and
are in a relaxed state of mind.
Being able to communicate effectively was
considered the most important quality for a peer
educator. PTE should be someone who could
communicate with people in a manner that was
simple and easy to follow. He/she should know
the local language and be comfortable with
the local area for home visits. Being motivated
for the cause was also very important since the
work was not like a full time paid employment.
Managing other responsibilities along with PTE
work was something that the person should be
• One of the PTEs advocated that, more able to handle well.
awareness programmes need to be carried
out regarding safe sex and condom use
so that the PLHA could have a safe and
enjoyable married life.
Planning more activities and interactive
learning sessions were also required. Picnics and
recreational and entertainment activities could
be planned for exchange of information and
greater solidarity amongst the PTEs.
Participants suggested various activities that can
be linked to the existing PTE programme –
• Nutritional support to both PLHA and PTEs.
• Management of STIs and STDs.
Counselling skills were also necessary since the
PTEs must know how to elicit information and
be able to explain complex facts in a simplified
manner. Being patient and maintaining
confidentiality were also important for
a good PTE. Having knowledge regarding all
aspects of the HIV/AIDS issue was essential and
a basic level of education was expected from a
PTE, so that he/she can read documents and use
resources.
Other personal qualities such as being bold,
smart and having a positive attitude were also
expected from a good PTE. Some respondents
felt that a good PTE should be someone who
does not have too many other responsibilities to
handle so that he/she can devote enough time
for the PTE work.
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Continuity of PTE programme
As expressed by the participants, the main factor
for continuity of PTEs was sustained motivation
of PTEs. It is necessary for the peer educator to
have a genuine desire to help others. He/she
should have a desire to learn new things and be
ready to make some adjustments for the same.
Remuneration was an important issue for all
PTEs as it was felt that the expenses required
for doing the job were not something that they
could afford. Most of the participants felt that
PTEs must be paid “adequately” or at least travel
remuneration must be provided to them. Using
incentives or making payments according to the
work done was also suggested.
It is difficult for the PTEs to balance their main
occupations along with the PTE work and they
had to often make sacrifices for the same. Some
of the common occupations of PTEs were said to
be factory worker, labourer, truck and auto drivers,
tailor, petty businessman, teachers, farmers and
commercial sex workers. Thus there was diversity
in the kind of work that PTEs do. There were
quite a few women who were housewives. It was
stated that housewives who were not motivated
to work outside home had become interested in
working for this cause and helping others. Many
of them had to give up their leisure time in order
to work full time and do peer education work. A
lot of them did their peer education work in the
evenings and on holidays and weekends. Keeping
flexible timings was required as they had to
match their own schedule with those of the PLHA
during home visits. Meeting clients in temples or
in the workplace was also often required as that
would be the only suitable time.
All the participants especially women, mentioned
the fact that they require full support from
their family members to maintain a proper
balance between their duties as PTE and their
occupational/domestic role.
Challenges in identification and
sustenance of PTEs
It was indeed a great challenge to recruit
deserving candidates as PTEs and retain them
in the programme. Due to absence of any
incentive, not many PLHA came forward to work
as PTEs. From amongst those who agree it is
extremely difficult to select people who matched
the profile. Dropout rate is also quite high, at the
same time the PTE work is unpaid, therefore it
dissuades the PLHA to take-up this responsibility.
The group felt that providing remuneration
to the PTEs could solve this problem to a large
extent.
Attitudes toward PTE
programme
Participants were happy with the programme
initiatives and felt that it was an effective means
of reaching out to the PLHA in remote areas. Peer
educators felt that the programme had motivated
them and given them hope and encouragement.
They felt that the respect that they receive due
to their work was not something that they used
to receive earlier. They also received greater
support from the community. Local leaders,
and local associations were cooperative and
wanted to help in the programme. They also
helped in organising street plays, cinema shows
and similar awareness programmes in rural
areas. Their families were more encouraging of
their work and in fact their support was the sole
reason that many of them could sustain their
voluntary work.
Training and supervision
The group believed that training and capacity
building is an essential component of the PTE
programme and it must be conducted regularly
to teach new skills and provide up-to-date
information. The overall impact of the training
that had been conducted was good. Several
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things in the programme were found to be useful
such as the updated information that was made
available, various aspects of ART such as side-
effects. Other topics were handled quite well.
The group appreciated behaviour skills training
through the use of different audio/visual media
in the training programmes.
Gaps in training programme
The group identified the following gaps in the
training programme conducted by Master
Trainer:
• The training would have been appreciated
better if local dialect was used.
• Training about Opportunistic Infections like
T.B.
• Behaviour change communication.
• Communication and counselling.
• Community outreach methods and skills.
• STI and RTI.
• Report writing.
• Finance management.
Such training programmes should be conducted
more frequently so that the knowledge and skills
remain updated.
• More IEC material should be provided.
• Use of creative mediums such as street plays,
role plays for training.
• Use of local resources – involving local NGOs,
local leaders, associations.
• Information and skill of accessing services of
VCTC, PPTCT, STI clinics should be given.
• Include experience sharing, feedback from
HIV Positive people.
• More participatory methods should be
employed.
• Distribute printed and small booklets while
giving training.
• Increasing the scope of training to include
yoga and nutrition etc.
Suggested areas of further
learning
The group was discontented with the short
duration of the training programme. The
participants felt that the training had to be at
least for 5 to 7 days instead of 3 days for better
and comprehensive coverage of topics. The
group suggested that the following areas must
be addressed in later training sessions:
Care and support for PLHA
There were several areas, which the PTEs were
confident that they could handle well such as
educating about ART treatment and its side-
effects, providing guidance regarding nutritional
support and giving information about referral
services. However, the peer educators felt that
they were not empowered enough to provide
complete support to the PLHA especially in some
cases when the family abandons the person
completely. While they could give advice on
medication, there were some technical aspects,
which they could not handle; patients would
often ask them for financial assistance in which
case the PTEs could not do much. At times the
PLHA would confide in them regarding their
legal problems, which the peer educators felt
powerless to resolve.
Being HIV infected themselves the PTEs also
went through their own ups and downs, which
affected their role as Out-reach Worker and
Counsellor. They may not always be motivated
themselves in order to motivate others. At times
their health condition deteriorates making it
difficult for them to go on field trips. They also
have to balance their medication and other
responsibilities along with the PTE work.
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Specific concerns: Women, MSM
and CSWs
The women were discriminated within families
and in the community. They are denied any
decision-making or legal rights. Widows are
particularly a pitiable lot as their families often
abandon them and they have to fend for their
children all alone.
The MSM needed greater understanding
and acceptance from the community as they
also require some kind of legal protection.
Confidentiality is a crucial issue for them. Some
MSM expressed the desire to be called as MSM
rather than be called HIV+ as it is considered
discriminatory in their own community. They need
to form their own associations so that they could
get emotional support and social protection.
• The MSM needed greater understanding
and acceptance from the community as they
also require some kind of legal protection.
Confidentiality is a crucial issue for them.
They added that on many occasions the
negative reactions of the community members
affected the programme considerably. The
stigma and discrimination issues retard the
growth of the programme. If the community
becomes supportive the programme could reach
new heights, thus concentrated community
mobilization and awareness exercises could
betaken up along with PTE approaches.
Some commercial sex workers articulated that
they were being discriminated in the community,
thus requested greater support through the PTE
programme. They expressed the need to be
organised in their own groups so that they could
network for support and care. Medical services,
nutrition and other support services should also
be made easily available to them.
According to the participants, the only solution
to the problem of stigma and discrimination was
raising awareness in the community. However,
approaching the community members and
patiently explaining them about the disease was
a strategy that they employed. If their clients
faced discrimination, the peer educators sought
help from the network professionals or other
members of the organisation. Though rare, in
case of physical violence the PTEs sought police
protection and legal help. Their role in such
situations remained as mainly providing moral
support to the victims.
Community support
The group submitted that they desired
community support for better functioning.
Stakeholder involvement and
contribution
Respondents stated that there were numerous
significant roles that stakeholders could perform
in the PTE programme. Being from diverse
fields, it was felt that all of them could make
distinct contributions to the programme. The
basic contribution required was in the form of
funding which was crucial to sustainability of the
programme. They could also contribute in the
form of nutritional support or travelling allowance
to the PTEs so that they could target rural and
remote areas. Moral support and solidarity to
the cause of the disease and those affected
could be provided by forming associations.
Arranging for monthly honorarium or salary for
PTEs, maintaining savings groups of PLHA would
also be appreciated. These stakeholders could
also help to sponsor the children of positive
people for their education and employment or
arrange for vocational training to HIV infected
people so that they could live an independent
life. Providing community resources such as
community halls for conducting health camps
and raising awareness was also suggested.
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Participants felt that the Government could play
a pivotal role in coordinating among stakeholders
and establishing networks among them. Securing
state support will give a major impetus to the
PTE programme and would help to clear the void
between infected and non-infected people.
It was felt that there was much more contribution
from all these stakeholders due to increasing
awareness levels and change in attitudes. It was
felt that in the present days, people were more
willing to support a cause and ready to make
minor sacrifices for the same. The recognition
that comes with association to a noble cause
was also stated as one reason for the increase
in stakeholder participation. To boost this
participation further, it was suggested that
giving public recognition to the work done by
stakeholders would be useful.
The group identified the major stakeholders:
• Govt. Departments – Health, education.
• Donor agencies.
• Social Organizations like Doctor’s
Associations, Lion’s Club, Rotary Club etc.,
• Community-based Groups and NGOs
• Families of PLHA
• SHG groups
• Women’s groups
• Village leaders and organisations
• Local Doctors (GPs)
• VCT Centres, PPTCT Centres
• Law and order officials
• Business community.
Selection of PTEs
It is difficult to find PLHA who would be able to
provide the commitment required for the work.
Moreover, in the absence of any remuneration it
becomes tougher to convince and motivate new
PTEs. Only those people who were educated
and had a desire to do something for society
came forward for the cause. The PTEs also had
to be someone who was physically fit and was
coping well with the disease. The job of a peer
educator involved extensive travelling to many
places; hence it is very important that the person
be physically and mentally prepared for the work
involved.
Counselling sessions and recommendations from
the doctors and medical staff help the TOWs
and DLN to identify potential peer educators.
During counselling sessions the motivation level
may be ascertained. From their own experience
sharing one could understand the changes that
the PLHA has brought in his/her life. Interaction
with existing PTEs also helps substantially in
identifying new PTEs.
However it takes continued efforts to sustain the
recruited peer workers. The main deterrent is the
lack of payment. In the absence of monetary
compensation it is difficult to encourage the
PTEs. However, the TOWs and DLN staff keep
motivating them and give them with the support
that they can provide.
• Participants felt that the Government
could play a pivotal role in coordinating
among stakeholders and establishing
networks among them.
Suggestions towards newer
strategies
There are several interlinked factors that
influenced the success of PTE programme.
For instance providing remuneration and
recognition to the PTEs for their work done is a
good way of motivating them. Providing other
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non-monetary benefits, such as child care,
nutritional support, travel benefits etc. could
also go a long way in sustaining the interest of
peer workers. Training more peer workers for the
programme was also suggested in order to ease
the burden on existing peer workers. Holding
meetings, refresher seminars and training
workshops could be a good way of making the
existing peer workers efficient and also maintain
their motivation. Participants suggested that the
peer workers may be provided with avenues for
expressing their opinions and field experiences in
regular official meetings. This itself can provide
support and be a great learning experience for
other peer workers.
Peer treatment education and
volunteerism
Nearly all the participants felt that volunteerism
was not a feasible option in the PTE programme
for a number of reasons. Being HIV infected
themselves the peer workers had to deal with
scores of health issues. For people who came from
an economically poor background the expenses
for maintaining a healthy diet, could also be
quite high. Hence, spending on travel expenses
during field visits is not feasible for them. Even
in terms of better output, it was felt that full
time paid staff were better than volunteers. A
certain level of work can be expected from the
PTEs only if they were paid for the work. Thus the
effectiveness of the programme could be greatly
enhanced by introducing remuneration for the
peer workers.
Currently all the peer educators are volunteers,
however, it was unanimously agreed that
volunteerism could not last for long. It is
necessary that peer educators be full time paid
workers. Their role involves extensive travel and
the job requires interaction with all kinds of
people. As a result of this, there were very few
people who could remain volunteers.
It was also felt that the PTEs did not get the
recognition and cooperation that they needed
from other health professionals, this could be
because of the fact that they are unpaid workers.
Providing a proper salary would also give them
status and recognition for their work as result
of which they would receive more support from
their families and the community.
Sustainability
As discussed earlier peer workers being the
key implementing agents of the programme,
hence substantial efforts must be directed
towards them. If the programme was
to remain sustainable in the long run
adequate attention and remuneration
must be provided to the peer workers.
Moreover, they should be provided with other
benefits such as nutritional support and travel
allowance. Regular training and knowledge
update programmes were also essential so
that the PTEs were confident in their role. Some
participants mentioned the following strategies
for bringing success to the programme:
• Pre-planning of activities.
• Organising resources judiciously.
• Involvement and good networking with
all stakeholders.
• Training by experts.
Most members expect a greater level of
professionalism in the PTE programme
with more financial allocation, so that the
programme objectives can be met without
any difficulties.
The main motivation for people not on ART
to attend the SGM was the information
and education component. The meetings
provided a good platform for PLHA to interact
and share their experiences. This was an
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important need for especially those PLHA who
had not revealed their HIV status.
Women PLHA were anxious about the future of
their children. Participants felt that if there were
an arrangement made for children of PLHA,
they would be able to lead their life peacefully.
Some of them also expressed a desire to get
engaged in any initiative that would provide
vocational training and suitable employment
opportunities. Establishing networks amongst
different support groups could also prove
beneficial for the PLHA.
EHS modules
The IEC materials that the PTEs are using currently
were the posters, flip charts and modules provided
by EHS. They were easy to understand and served
as important tools in the programme. Nearly all
the participants were familiar with the training
modules and felt that they would definitely
recommend to others. The participants felt that
more such resources should be made available
on specific topics such as STD/STI management,
opportunistic infections, ART treatment, etc. Such
materials may be made handy and comprehensive
learning tools for both PTEs and PLHA.
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Maharashtra
The Maharashtra State Consultative
Workshop for Peer Treatment Educators
was conducted on 17th February 2007 in
Mumbai. Altogether 23 participants hailed from
various districts of the state and participated
in the day-long group discussion. The following
findings have emerged as a result of four group
discussions.
Objectives and components of PTE
The group culled out the aims and objectives
of the peer treatment programme after a brief
reflection and discussion. All the participants
considered initiating and maintaining
Antiretroviral Therapy (ART) as prime objective.
This referred to firstly reaching out to those
PLHA who were in need of ART and following-
up on those who were on ART and for whom
adherence was important. Popularising ART and
its benefits despite the complex side-effects was
perceived as crucial. PLHA need to be convinced
about the importance of the medication and the
irreversible harm that non compliance could bring
about. It was therefore considered important
to provide information about medicines in the
language which PLHA could follow. Secondly, the
programme aims at educating and counselling
the family members of the PLHA so that they
could provide the necessary support and care.
Thirdly, the programme through the peer
educators aimed to promote overall health and
well-being of the PLHA by providing guidance,
referrals and counselling.
Community out-reach activities and home
visits were considered core components of PTE
programme. The other components like providing
complete information on the disease and the
treatment, individual and family counselling,
ensuring treatment adherence are also seen as
important components of the approach. There
was, however, an expressed need to strengthen
these components through periodic training and
refresher courses.
Perceived effects of the PTE
programmes
PTE observed that the PLHA especially those
who had just been diagnosed with HIV sero-
positivity were known to undergo a lot of stress,
insecurity, fear and depression. During this
crisis-period peer educators provide the required
psychological support and a hope for future
living. Peer educators exemplify the healthy
lifestyle and encourage sero-positive people to
strictly follow treatment regimes in order to live
a healthy and positive life. They provide and
explain all the information related to ART in a
simplified manner to PLHA and these efforts of
PTEs subsequently result in greater adherence
to therapy. Due to enhancement of knowledge
significant level changes were brought about in
their outlook towards life and living. There were
several instances when peer educators inspired
other PLHA to become peer educators.
In terms of knowledge, attitude and behaviour
there were some remarkable changes due to peer
treatment education. It had definitely helped
in increasing the knowledge of PLHA regarding
treatment options, drug issues, dietary and
healthy lifestyle changes. Information regarding
health services and even other schemes for
financial support had been provided.
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Enrichment of knowledge and sense of
togetherness helped to build confidence and
hope amongst the PLHA. The PTE programmes
are not limited to the individual alone; due to
home visits, family support and counselling
larger number of people are involved in the
programme. Consequently, a change in attitude
not just in the individual level was seen but
change was observed in the family level. The
individuals and their families were hopeful for
a better life and were willing to follow the strict
treatment regime and focus on positive aspects
of life. Peer Treatment Education also helped
peer educators themselves in building their self-
confidence and self-efficacy – a feeling that they
could effect change in their lives. This positive
thought helped the peer educator as well as his/
her clients to banish feelings of shame or fear.
The tendency to blame oneself or one’s destiny
was also significantly altered giving a greater
sense of control in people’s lives.
The PLHA felt more confident and hopeful
looking at the positive examples put forth by the
peer educators. They are more conscious of their
health decisions and take efforts to reduce or
curb unhealthy habits like alcohol, smoking etc.
The current PTE programme was found to be
effective to a great extent. The PTE versus client
ratio being 1:10 or 1:15, gradually the number of
PLHA increased substantially, resulting in more
work load for PTEs. It was considered important
that PTEs promote ART to the most number of
HIV infected and affected people. Some people
initially refused to understand but later they
acknowledged the importance of ART. Most of
the PLHA were under nourished and ignorant
about their health. The stigma that they faced
in society and in their own homes was also very
disturbing for many, PTEs help such people
through counselling and this has yielded positive
results.
Existing peer education
approach
There was little doubt that the existing peer
education approach has borne positive results
but further improvisations could increase
efficiency and effectiveness of the programme.
The participants were of the opinion that more
PTEs should be recruited to reduce the workload
of the current PTEs. The group felt that the work
done by Peer Treatment Educators could not
be done by anyone else, not even the medical
personnel and social workers. The PTEs have an
empathic understanding of the situations and
problems faced by the PLHA as they themselves
were undergoing the same plight. Hence, they
are the best people to counsel and guide the
infected people.
Participants suggested that there should be
same number of male and female peer educators
and there must be MSM representation as well.
They added that the PTEs should always be
well trained. The organization must provide
necessary study material and develop their
skills to carry- out the challenging tasks. In
case of voluntary work there should not be any
restrictions on timings, so that PTEs could do the
work as per their convenience. It was felt that
the PTE should not have too many restrictions at
work, he/she should have some authority to take
decisions while in the field.
HIV treatment adherence
The participants put together the information
they possessed on treatment adherence to
devise a working definition. They discussed it
not just in terms of taking the right dose at the
right time but looked at the concept holistically.
They added that it was important for the PLHA
to have a regular and proper diet and continue
the medicines even in case of side-effects. The
participants stressed on consulting the doctor for
minor symptoms and getting regular CD4 tests
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and other tests done to keep a watch on one’s
health status, in addition weekly and monthly
follow ups were also considered necessary.
Importance of ART:
Adherence issues
Some members shared their observation that
at times, PLHA develop an attitude of self-pity.
Sometimes they express that it is better to die
rather than to taking life-long medicines. This
attitude has to be altered by intensive counselling
and providing support and encouragement,
highlighting the benefits of ART. Securing
support from the family is also necessary so
that the HIV infected individual could maintain
a proper diet and timings of medication.
Abstinence from alcohol or avoiding any other
unhealthy habits was also possible with support
and encouragement from the family.
Reportedly before starting ART, many diagnostic
tests were required such as sonography, eye
check up, TB tests which could seem daunting
for the PLHA. The PTEs must help during such
times and answer all the pertinent queries
for preventing drop out. Sometimes, loss of
concentration and memory problems could result
in forgetfulness. Hence, PTEs gave important tips
like maintaining a diary or alarm or matching
drug timings with popular TV shows etc. which
ensure regular intake of medication. Those PLHA
who were employed found it difficult to follow
strict schedules. Family members and caretakers
should also be made aware of these problems
and techniques to tackle them so that they could
help the individual better.
Non-availability of drugs was a major problem in
smaller areas, on many occasion people had to
travel extensive distances to reach ART centres.
Those on daily wages had to miss one day’s
wage, putting an unwanted financial strain.
Participants reported that some people got so
upset and fed-up of waiting for the medication
at the centres that they preferred to die instead.
It was important that ART should be available
in primary health centres so that the person did
not have to spend money on travelling and could
also save time. In certain places like Pune, Sangli,
most of the time medicines were not available.
People from Ahmednagar and Solapur had to
come all the way to Pune as they had no local
ART centres. As a solution for this, participants
felt that if the centre supplied a bulk dose, say
monthly or bimonthly at each visit of the patient
it could prove valuable.
• Some members shared their observation
that at times, PLHA develop an attitude of
self-pity. Sometimes they express that it is
better to die rather than to taking life-long
medicines.
Government officials in ART centres who were
over-burdened tend to treat the PLHA impatiently,
they had no time to solve their queries. They had
limited working hours and at times they closed
early for their personal reasons. Patients travel
long distances and often find the ART centres
closed. This de-motivates the patient who had to
return in vain for the medicine, it may also affect
their adherence-routine.
Some members said that the cost of treatment
could be another major deterrent for adherence.
Earlier patients had to pay Rs. 500/- for getting
their CD4 count tested. Those people who
didn’t have that money used to simply stop
their treatment, thinking that they could start
the treatment whenever they had the money.
Though now ART was provided free, the cost
of nutrition is not affordable to many patients,
especially those who had more than one infected
person in the household.
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It is often observed that in a family having more
than one infected person, males were given
medicines first and their diet was more properly
maintained than women. Women, especially
those who had lost their husbands were not
always paid adequate attention.
it difficult for them to counsel others. The ART
routine could also be quite stressful at times
and could limit the PTE’s ability to meet the
clients. There could be health complications and
opportunistic infections that saddle the worries
of PTEs, making their job tougher.
The money and support required to visit ART
centres were not provided for women by the
Efforts and initiatives for greater
adherence
• It is often observed that in a family
having more than one infected person,
males were given medicines first and their
diet was more properly maintained than
women. Women, especially those who had
lost their husbands were not always paid
adequate attention.
The concept and information regarding
adherence were conveyed using diagrams which
were more effective than reading or verbal
communication. Another technique was the
use of personal testimonies; peer educators
gave their examples in terms of ‘before and
after’ impact of medication, which yielded good
results, especially for drug adherence.
Looking at these numerous issues participants
suggested the following:
family. They were questioned and looked at
suspiciously. To add to it, the responsibility of
children’s medication was also with the mothers.
Many a time the PLHA were not aware that
there was separate ART available for children.
The female PLHA faced double stigma and
discrimination; the female respondents reported
that they were not treated properly because
firstly they were women and secondly because
they were infected.
Another obstacle coming in the way of
treatment adherence was the negligence by the
medical professionals. The time and patience
that PLHA expected from the doctors and other
medical staff were never received. There were no
provisions for emergency care like HIV positive
pregnant women. Such experiences deter PLHA
to visit the ART centres regularly.
Lastly, the PTE’s problem of coping with his/
her own HIV positive status and his/her health
requirements, while providing support to others.
PTEs also went through ups and down, making
• More advertisements, posters, and audio
visual informative material could be made
available.
• Regular support group meetings.
• Arrangement of monthly meeting where
TA, snacks and tea can be provided to boost
membership.
• Greater individual and group level interaction
between PTEs and PLHA.
• Those PLHA who were alone/alienated should
be brought to support groups and should be
provided extra attention.
• Provide appropriate information and
encouragement.
• Ensure availability of ART in all centres.
• Alter or increase timings for ART centres
so that out station patients can procure
medications with ease.
• Provide bulk dosage of medicines to PLHA to
reduce the number of return trips.
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Regular follow-up visits had great potential for
bringing about treatment adherence and in
fact that is the only strategy, which was working
quite well currently. In each session the PTEs
must patiently answer queries and emphasise
the importance and benefits of adherence.
Sometimes using arguments like, “it was
important to maintain adherence with the first
line regimen treatment. If resistance develops
with first line medicines, the second line regimen
is very costly and not easily available”. This
also serves to motivate PLHA to stick to drug-
routines. Diet and healthy lifestyle should be
focussed upon. Family problems should also be
tackled so that mental stress and related issues
could be controlled. A conducive relationship
should be established between peer counsellors
and patients so that the PLHA could confide
in them. As follow-up visits were not always
possible, there must be provision to contact the
person over telephone, especially for those who
were employed. It was also felt that too frequent
follow-up visits could create suspicion in the
minds of neighbours and family, and therefore
telephonic communication could be used as an
alternative.
Programme implementation
and integration
There were certain factors affecting the
smooth running of the PTE programme. The
costs incurred on travelling during home visits
were the biggest problem for peer educators,
since they had to spend from own pocket.
Remuneration must therefore be provided; this
would also ensure greater responsibility on
the part of peer educators. Adequate training
regarding counselling, medications and basic
documentation was also important and must
be provided. Advertisements, support group
meetings, regular visit of specialized doctors,
and cooperation from health workers were other
things considered necessary. People who could
not arrange for their proper nutrition should be
given some support. PTEs should be updated on
the programmes and given latest information on
time. There must also be an arrangement made
for PTEs to interact amongst themselves so that
they could learn through others’ experiences.
Training workshops on communication,
counselling and self-development could be
arranged with the help of experts from the field.
The group was deeply concerned with the fact of
the PLHA’s indulgence in “high risk behaviours”.
The PTE programme must address these issue
through individual counselling, organising
awareness programmes in the community,
organising yoga and meditation camps, and
distributing pamphlets regarding the risks and
harm of certain behaviours like alcohol, drugs
and unsafe sexual behaviours.
There was unanimity regarding the skills or
qualities that a PTE should have to implement
all such programmes. It was felt that he/she
must possess good communication skills and
creativity. The PTE must be well aware of
the basics of counselling for bringing about
a change in behaviour. The PTE must also be
good at networking and garnering support of
the local community for organising local level
programmes.
The other services/activities that could be linked
for effective programme implementation were
identified as follows–
• Income generation programme and savings
groups.
• Governmental services.
• Indira Gandhi Aawas Yojana.
• Distributing condoms and information on
how to use them.
• Information about PPTCT and government
health programmes.
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Challenges for PTE
Continuity of PTE programme
Many a times home visits turn out to be the
major challenge for the PTEs. In most cases, the
houses of PLHA were located at far off places and
the PTEs had to travel long distances spending
his/her own money. These home visits were
sometimes not appreciated by the PLHA fearing
public reaction. This made it more difficult for
peer educators. The home visits were even more
difficult to be made if the PLHA belonged to
opposite sex or was a member of MSM group.
MSM were fearful of public reactions, stigma,
discrimination and even violence.
Profile of an effective PTE
The general opinion of the group was that a
PTE should have basic knowledge about the
programme. The person should be able to read
and write. Some felt that a PTE had to be smart,
moderately educated so that he/she should be
able to read and understand. It was expected
that he/she should have the basic knowledge of
HIV/AIDS, ART, good communication and public
relations. PTEs must be well-versed in the local
language and must be able to explain complex
facts in a simple and lucid manner.
Most of the participants agreed that a PTE
should be HIV positive who had an empathetic
understanding. He/she should not be moody and
must have a positive demeanour and willingness
to help others. He has to have good counselling
skills, should be outgoing and hardworking.
Interestingly, it was felt that the PTE should also
be someone who was needy, as only a needy
person could do a good job. Over and above
he/she must have leadership qualities and be
confident. A peer educator must also understand
others well and be able to patiently answer
questions. She/he should not hesitate or be
afraid to visit PLHA be it MSM or CSWs, where
resistance may be quite high initially.
Almost all participants stated that money
should not be a constraint for performance but
they believed that there should be some reward
system for performance. If they were provided
with proper reward, they could show best results.
Some members felt that the gap between PLHA
and PTEs had increased due to financial problems.
It created a negative feeling amongst the PTEs
due to which many could not pursue the work
for long. The PTEs submitted that if the financial
problems were solved their families would
also be happy and render their support. There
could however be some considerations while
the stipend was paid to the PTEs, for instance
they travelled long distance to reach PLHA and
counselled individuals cases and families.
The group reiterated that PTE work was not a one-
time job. It was a continuous process of higher
level of involvement. Although volunteers were
needed there was poor response from PLHA. The
respondents believed that the programme would
be more successful if they were paid employees.
They claim that they could “work 100%” if
provided with proper incentives. One respondent
added, “If today a person is working with 10 HIV
affected people, he would easily be able to cover
20 people if he is financially supported”.
Regarding volunteerism it was felt that if PTE
programmes hired voluntary services right
from the beginning it would have worked. But
since people were used to being paid, sudden
withdrawal of remuneration was not right.
Moreover, voluntary PTEs could work at the most
for 6 months but it could not be considered as
a long-term option. This was a popular opinion
and was stated repeatedly by participants.
Since the job required travelling at one’s own
expense added with it PTEs face negative public
reactions, thus families of PTE were not happy
about their work. As mentioned, since the work
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was mainly voluntary, peer educators did not
receive the same support and encouragement
from the family. The group members added that
support from family members and friends was
crucial for Peer educators and their work.
Challenges in identification and
sustenance of PTEs
Time and money were the two main factors that
require PTE volunteering. Only those people who
had a good financial condition come forward as
volunteers. They must also have surplus time
and a supportive family. Some people did not
come forward as they felt they might have
problems with their families and they would be
abandoned if they offered voluntary services.
This was especially true for women who were
dominated by their husbands or other male
family members. In many areas women are
not allowed to attend such programmes alone.
Therefore, organizations should arrange for
more HIV awareness programmes which helps
PLHA to gain acceptance in the community.
The unfavourable reactions of the community
sometimes deter many PLHA to initiate ART
or join as a PTE. Hence, getting support and
encouragement from the local community were
regarded as essentials.
A major drawback with volunteering was
accountability. Not many people could devote
consistent time for voluntary work. Since the
work was not paid, many PLHA were not ready to
shoulder responsibility, due to which there was
poor accountability. Some said more women tend
to volunteer than men, possibly since they were
not employed elsewhere and could therefore
spare that much time. With advertisements
people came forward on their own. However,
in remote villages people were not aware of
PTE programmes. Social sensitization and
awareness camps could help in promotion of
volunteerism.
Training and supervision
The participants quite appreciated the training
conducted by Engender Health Society and felt
that the training should be repeated at regular
intervals. TOW shared knowledge about HIV
infection, hygiene, eating habits, sleeping habits,
rest, medicines etc. —basically all the HIV
related information that needed to be known by
the PTEs.
The training programme being of three days
duration was convenient especially for those
who came from far off places. The content and
curriculum of the training workshop was found
to be practically useful. Each day the training
began with recapitulation of the previous day’s
learning, which helped participants recall and
remember the pertinent aspects. Information
provided about capacity building, sex and
sexuality, ART, treatment adherence, condom
demonstration, communication skills etc., was
extremely beneficial for the PTEs. It helped the
PTEs to develop positive attitude towards life,
improved communication skills, widen outlook,
gain information on arranging social programmes,
develop better understanding, facilitate problem
• A major drawback with volunteering
was accountability. Not many people could
devote consistent time for voluntary work.
Since the work was not paid, many PLHA
were not ready to shoulder responsibility,
solving capacity, and make many new social
contacts. Most of the respondents said that the
training made them more confident.
The respondents felt that the PTEs should have
detailed knowledge of the disease, its symptoms
and causes. She/he should have conversation
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skills, client handling skills, knowledge about the
side- effects of drugs and some knowledge about
its management. All these vital information was
provided in the training that was facilitated by
trained experts and doctors.
• More resource persons and medicine
specialists (Doctors) on medical/clinical
topics.
• Discussions should be made more lively by
organizing group discussions, case studies etc.
• The training workshop was a welcome
break for most PTEs from their daily routine.
They were glad that they were given a
platform for interacting with other peer
members.
The training workshop was a welcome break
for most PTEs from their daily routine. They
were glad that they were given a platform for
interacting with other peer members. Many also
said that it helped to generate positive thoughts
in them and cleared all the negative thoughts in
their mind. The training made them confident
enough to clear the doubts of other PLHA and
they were quite keen to pass on the knowledge
they had acquired.
The trainers made use of pictures, flip charts,
models and interactive group sessions and
demonstration techniques. The training
modules provided by the master trainer were
comprehensive and contained information
in a clear and simple format. Objectives and
output of the training were clearly explained.
The manuals developed by EngendereHealth
Society were extensively used since they were
easy to understand and in Marathi language.
Sometimes information from other sources
was used. This information was mainly on side-
effects of the drugs.
Gaps in training programme
• Some entertainment programmes and social
events may enliven the participants.
• Local language should be used in all reading
materials that are provided.
• Explanatory notes should be made available
with books.
• Tele-films on medicines and other relevant
topics could be shown.
• Creative methods such as drama or some
other activities should be used.
• Topics such as counselling, leadership, etc.
may be included.
• Training should be conducted as a mix group
of MSM, men, and women. Everyone should
know each other in the groups.
• Travelling bills must be reimbursed to
participants.
There should be trainings on how to use audio-
visual tools, skills for group discussion, counselling
techniques, etc. may be included in the training
programme. Posters, Flip chart, group discussion,
individual consultation may be incorporated in
the training. An absolute majority felt that the
training approach should be participatory and
adopt interactive principles. Adequate numbers
of brochures, pamphlets, leaflets, etc. on HIV
infection and ART should be provided to train
people.
Suggested areas of further
learning
The following were the perceived gaps of the There should not be repetitive information; new
participants. Suggestions were forwarded for issues should be discussed each time. Updating
improvement:
PTEs on new areas such as ART, management
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of STI, opportunistic infections, tuberculosis,
training on nutrition and home-based care
for the HIV infected people are some of the
pertinent areas for learning. Information and
assistance regarding welfare schemes should also
be made available in the training. A professional
approach towards arranging support group
meetings should be taught. Budgeting should be
included as a topic in training of PTEs. Training
and discussions on sexuality and related issues
should be included so that people could clear
their doubts.
Care and support for PLHA
Participants felt that the PTE programme had
provided a great deal of support to the PLHA. The
programme had equipped the PTEs with useful
knowledge which had helped to dispel some
of the myths that people hold. It was stressed
that their job, which involved actual visits to the
homes of the infected people was more effective
than the mere counselling sessions within the
hospitals. Many of the issues that were hard to
be discussed during counselling sessions were
successfully tackled during home-visits. Moreover
the biggest advantage for peer educators is
that they could give their own examples in the
most effective manner. Past experiences and
case studies were used by all PTEs to make their
counselling more effective. They also made good
use of the informative materials and posters that
they were given. The PTEs helped the PLHA to
live a healthy life by maintaining the drug regime
along with the required nutritional support. They
endeavoured to mobilise the family resources
and support for adequate care of the PLHA.
Specific concerns: Women
The group believed that working with HIV-
infected females required a special understanding
and skill on the issues and concerns. Most women
PLHA hesitated in sharing their experiences. In
villages, females were overburdened with work
due to which they had no time for these kinds
of programmes. Some females were so shy that
they could not even tell their problems to other
females. Hence, it becomes difficult for the
male PTEs to deal with female PLHA. Gender
inequalities make it difficult to care for women
PLHA. Issues of safe sex, nutrition, and visiting
ART centres were not in the hands of female PLHA.
Many of them, particularly widows had to live on
the mercy of other relatives and their rights were
violated all the time. In cases of children who
were infected, the girls were abandoned or sent
to orphanages, while male infected children are
taken care of within the family. In some cases
their ART treatment is also stopped and they
are not provided with adequate nutrition. Many
female PLHA visited the counsellors and ART
centres discreetly. These concerns complicate
the intervention process for women PLHA.
Similarly there were specific concerns of female
PTEs. They reported to have faced numerous
problems during the field visits. They sometimes
become victims of the foul language which
men hurl on them. Their work has to finish at a
time stipulated by their families, it is sometimes
difficult to strike a balance between work and
home.
MSM issues
Most participants felt that there should be
targeted interventions for the MSM because
they were a highly isolated and discriminated
group. They thought MSM groups were usually
very “secretive” and “cold” took very long time to
open up. In fact their cases had to be dealt with
only by male PTEs. They were immensely afraid
of public reaction and hence they did not wish to
reveal their sexual orientation. They experienced
double discrimination for being HIV infected
and for being homosexuals. In a mixed group
setting these issues might not be adequately
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addressed and hence they feel isolated. It is for
this reason that they prefer not to attend the
support group meetings and advocate for their
specific support groups. They also demand for
specialised programmes for MSM since they
don’t come forward and talk easily about their
concerns.
Community support
PTEs had to face many difficulties due to
the negative public reactions. They were
often mistreated and their intentions were
misunderstood. The opposition from village
leaders and community gate-keepers made it
difficult for PTEs to work. They do not get the
required support and resources from the local
community. Not only this, there have been
cases where the PTEs were threatened and had
to seek police protection to continue with their
work. Some of the health staff also displayed
discriminatory attitude towards PTEs. However,
in some places where awareness levels were
rising there was an attitudinal shift. People asked
for more information from PTEs.
The PTEs were sanguine and look forward to
receive care and support from the community
in the days to come. They wished for the
community to be more accepting of PLHA and
their families.
Stakeholder involvement and
contribution
Participants of the group discussion mentioned
the following as key stakeholders in the PTE
programme:
• Doctors and other health professionals.
• Lawyers and legal experts.
• Village heads and administrative heads at
the local level.
• Other NGOs and organizations/institutes
• Important people in the community.
• Teachers and educators.
• Educational institutes, colleges and schools.
Few participants informed that they did not receive help
from any stakeholders but the rest of the participants
experienced a positive response from the stakeholders.
For instance, doctors informed and guided HIV
positive persons on basic issues related to the disease
since doctor is the first person who knows about the
patient’s infection. PLHA were more open to them as
compared to anyone else. Some doctors played a key
role in answering all the queries that people had and
then directed them to the peer networks. There were
some issues which only the medical professionals could
resolve in a convincing manner. Many doctors helped
PTEs and the PLHA by waiving off their consultation
fees, or paying for their conveyance if the patient
was very poor. They gave medicines free of cost. They
helped to contact other organizations for patient’s
nutritional support and other basic needs. If required,
they even gave referral note if the patient had to be
shifted to somewhere else.
There are many ways in which the stakeholders could
organise help for the PLHA. Youth associations for
example, could organize youth meetings and make
the youth aware about the HIV infection and also if
anybody was infected they could guide them to the
PTEs. Counsellors and Laboratory technicians could
provide names and addresses of PTEs to the PLHA.
The lawyers could offer assistance by giving free legal
advice. The participants added that many advocates
did not charge their fees for the cases when they
worked for PLHA. The community people could help by
volunteering them for some programmes. Industries
were also identified as stakeholders according to the
participants industries could contribute by providing
jobs to PLHA as per their working capacity. This
would help to reduce the financial pressures of PLHA.
Participants stated that most of the stakeholders help
the PLHA to contribute their bit for the social cause while
some help PTE programmes for political interests.
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However, in the villages people were suspicious
of the PTE activities. Therefore some awareness
programmes must be organised with the help of
the stakeholders for facilitating the intervention
process. The fact remains that local communities
and the society at large continue to yield
considerable influence on the individuals and
hence their contribution as stakeholders in the
PTE programme was very crucial.
not really expect them to be available all the
time. The commitment level would definitely be
higher if the peer workers were paid for the work
they do. It was not easy for the other staff to
allocate work to the PTEs since they were not full
time paid staff.
Suggestions towards newer
strategies
Selection of PTEs
The DLN and TOW staff informed that they
generally select new PTEs during the course of
counselling sessions. They also observe behaviours
of PLHA over a period of time and select people
who are self-motivated and show adherence
to the treatment. Support group meetings are
also a good source of selecting PTEs. Generally
the participants who were active and showed
a willingness to be involved were introduced to
the PTE programme. The DLN and TOW staff are
entrusted with the responsibility to train PTEs
and make them prepared for fieldwork. They
have to explain to the PTEs their job profile, aims
and objectives of the PTE programme, working
of the organization and provide support and
encouragement. Regular counselling of the peer
educators themselves is also a must so that they
could cope with their role as peer educators while
coping with their own disease. The PTEs have
to be called for regular meetings for obtaining
feedback and providing future directives.
The basic needs as expressed by the DLN and
TOW was that the PTE should be literate and he/
she should have good communication skills. At
times it was difficult to get such a competent
person. There were several challenges that made
it difficult to retain the PTE workers. One of the
main issues was monetary compensation. Since
the peer educators worked on a voluntary basis,
it was very difficult to keep them motivated.
Moreover the DLN staff or other members could
The group suggested several strategies for
finding new PTEs and retaining the existing ones.
Firstly there must be regular feedback sessions
at an individual level so that the concerns of
each peer worker were looked into. There must
be skill building exercises for the PTEs and their
knowledge must be updated so that they were
well aware of the latest happenings in the field.
In order to increase the number of volunteers in
the PTE programme it was felt that there should
be more awareness programmes in rural areas.
Such events should be organised at the taluka
level and must be made compulsory in schools
and colleges. Youth volunteers could also be
enrolled in such programmes. There must be a
volunteer programme setup, wherein interested
people could devote few hours in a week for
the PTE programme. Such schemes would also
reduce the burden on the peer workers and create
greater awareness and acceptance regarding
the issue.
Confidentiality has been a key concern in the PTE
programme not just for the clients but also the
peer workers. This served as a limitation for the
PTEs. In some areas they might face problems
like villagers insult or abuse them. These instances
had proved to be deterrent for the PLHA to join as
PTEs. To retain the person in PTE programme it is
necessary to have regular meetings and update
them about the targets to be accomplished. DLN
officers also established a rapport with the peer
workers and made sure that their health and
other concerns were met with.
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Peer treatment education and
volunteerism
The participants believed that volunteerism
could not be a long-term option for PTEs as
either they were unemployed or earned very little
from petty jobs. Their families expected them
to earn and share the familial expenses. If they
engaged in voluntary work for permanent basis
their economy of the family suffer. Also the PTEs
had precarious health condition which required
attention and money. They could fulfil all their
roles as per the job expectation if they are paid
workers.
Cost effectiveness of PTE
programme
If the PTEs are paid for their job, more work and
time could be expected from them. This could
increase performance and efficiency leading to
higher cost effectiveness. The PTEs expected
honorarium, travel allowance and nutritional
support from the organisation.
Sustainability of the PTE
programme
For sustainability of the PTE programme, PTEs
should be provided with proper stipend because
their work consumes a lot of time and many of the
PTEs are financially not stable. They had to work
somewhere else for the money. If they received a
monthly stipend they could work more efficiently
and effectively. Other systems of rewards and
recognition like felicitation functions for PTEs
who had achieved their targets could also prove
helpful in sustaining the programme.
EHS modules
and supportive tools
The EHS modules were found to be very effective
by the respondents. They extensively made
use of pictures, posters and flip charts in their
sessions. They also made use of the EHS training
modules which were in Marathi and quite easy
to understand. Pictorial representation of data
and information was much easier to understand
and recall. Respondents are quite keen on using
more such resource and IEC materials as they
were much more effective and interesting.
Hence, such materials and resources should be
made readily available and there must be group-
training sessions held for PLHA. Combining
various techniques and resources the training
and information sessions could be much more
successful.
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Manipur
The Manipur State-level Consultative
Workshop for Peer Treatment Educators
was conducted on 22nd March 2005
in Imphal. There were 23 participants hailing
from various districts of the State and all had
participated in the day-long group discussion.
The following findings have emerged as a result
of four group discussions.
Objectives and components
of PTE
The following objectives of peer treatment
education had come up as a consequence of the
group discussion:
• The primary objective was to use the peer
treatment education as a strategy for harm
reduction amongst the intravenous drug
users.
• To identify the potential clientele and induct
them in the PTE programme.
information on access, adherence and
benefits of the treatment.
• Capacity building of PLHA and identifying
service delivery points for the PLHA.
• Creating awareness about issues of PLHA
in the communities, amongst the service
delivery organizations and other agencies
thereby reducing stigma and discrimination.
• Strengthening the support system by
providing family counselling and educating
on home-based care.
• The primary objective was to use the
peer treatment education as a strategy for
harm reduction amongst the intravenous
drug users.
• Using PTE approach as an educational and
counselling tool for the PLHA on Anti-Retroviral
Therapy (ART); especially to communicate
about the significance of the regular intake of
the medications without a miss.
• Employing PTE approaches as a motivational
tool for PLHA in the local communities, so
that those who are not on ART are prepared
to initiate the treatment.
• Assisting the PLHA in the local communities
to access and adhere to the ART treatment.
The components of peer treatment education
were identified as –
• Promoting the spirit of volunteerism and
activism.
• Providing complete knowledge and adherence
to ART.
• Techniques and tools of individual and family
counselling.
• Support group meetings.
• Referral and follow-up services.
• Helping the PLHA to lead a quality life • Handling of financial issues in case of needy
by providing them with the right kind of
patients.
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• Organising awareness programmes on HIV/
AIDS
• Documentation and reporting skills.
Effects of the PTE programmes
on the PLHA
The foremost effect of the PTE programmes
on the PLHA was capacity building and
empowerment in the areas such as referral
services for Opportunistic Infections (OIs),
pre-investigation requirements by PLHA, ART
treatment, nutrition etc. These initiatives had
resulted in a positive attitude and behaviour
change amongst the PLHA. The programme
also rendered a psycho-social support to the
PLHA and helped them to adopt a positive life-
style. The necessary knowledge and support
had assisted the PLHA to improve their health
status along with the ART treatment, which has
resulted in better treatment adherence. The PTE
programmes have provided a platform to the
PLHA to share their knowledge, experience and
problems with other peer members. The groups
also felt that the PTE programmes had resulted
• The programme also rendered a psycho-
social support to the PLHA and helped them
to adopt a positive life-style.
in enhanced participation by the PLHA in the
DLNs. The programme has helped in adding to
the number of volunteers to a certain extent.
Some PTEs admitted that despite the merits of
the peer treatment education approach some
of the PLHA were unable to benefit from the
services provided due to financial constraints.
Specific changes and improvements were
brought about in PTEs and PLHA in the areas of
knowledge, attitude, belief and behaviour along
with some specific changes desired for women
PTEs. There is an increase in the knowledge
level regarding ART treatment and the disease
which has helped the PTEs and PLHA to improve
their health status. They are able to acquire
information regarding the recent developments
in the field of HIV/AIDS and related issues.
Most participants reported that they had the
opportunity to develop strong inter-personal and
communication skills which help them in their
regular work of counselling and motivating the
PLHA.
Reportedly there is a remarkable change in their
attitude as well. The training has taught them
how to inculcate a positive attitude and brought
a positive change in their lives. It has also
instilled a spirit of altruism and volunteerism.
They have gained recognition in the community
and got active support from the PLHA. They
have developed a committed attitude towards
service of the PLHA in the community and
learnt to maintain confidentiality and work
professionally.
Many reported that their involvement with the
PTE programme has helped them in developing
a positive belief system. Earlier they looked down
upon themselves, which was due to the reflection
of society’s stigma and isolation towards the
disease and PLHA. They have been able to
canalise these negative thoughts into positive
collective action for themselves and others. They
hold the belief with conviction and spread the
message of the possibility of living normal and
happy life in their family and society. They now
hope to live a longer and healthy life in contrast
to their prior held belief that they are dying. They
believe that HIV/AIDS is like any other disease
and hopeful that soon there will be a cure.
The Peer Treatment Education has also
impacted their behaviour where they have
adopted a healthy lifestyle. The treatment has
caused a noticeable change in their health and
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they adhered to regular treatment. Along with
practising the desired behaviour in seeking and
following treatment regimen, it has helped them
to practice safe sex behaviours. It has further
helped them maintain a high self-esteem and
abstinence from unhealthy behaviours like
indulging in recreational drugs and alcohol.
Existing peer education
approach
Due to their sero-positive status the PLHA were
being stigmatized and harassed by their own
family members, police and organizations like
the Meira Paibi (A Women’s Group). The Peer
Treatment Education has helped the PLHA fight
this stigma and harassment through community
awareness initiatives and counselling. The
programme has helped them to return to their
normal life in their family and community.
Peer Treatment Education Programme has
proved useful in the enrolment and participation
of PLHA at various DLN. One of the participants
stated that “in the initial stage there had been
many hidden HIV cases in our communities.
Later with the PTEs concentrated efforts infected
people started to approach us asking when and
how they should start ART? What services exist
for them etc?” There is no doubt about the fact
that a PLHA is more open and communicative
while conversing with a PTE. This fact is well
utilized by the PTEs, who gather all information
about the problems encountered and needs of
the PLHA. This has helped them for adequately
mobilizing available resources from government
health facilities, family, and community.
While discussing about the existing Peer
Education Approach in the country most of the
participants remarked that it is an extremely
useful method which is one of the most widely-
used strategies to address the HIV/AIDS
epidemic. It helps the PLHA to know what they
wanted to know and also all about the disease,
treatment and available resources without the
fear of being discriminated and stigmatized.
Different funding organizations have different
styles of peer education approach in the state of
Manipur. There are no proper strategies in place
for peer work nor are the duties of PTE demarcated
properly. There is a sense of discontent among
PTEs on the issue of their honorariums and work
allocation. Duties of PTE are unclear and the
spirit of voluntarism is declining. There is a need
to frame a common policy of Peer Educators with
common facilities. Though Peer Education is an
important component in the care and support
programme the existing peer educator approach
in our country is in pitiable condition. It needs to
be improved, rectified and expanded.
HIV treatment adherence
There was a consensus regarding the ART
treatment adherence, as most viewed that
following regular treatment regimen is of
paramount importance in promoting and
maintaining health. Some respondents felt that
the two vital components of the treatment
adherence are correct dose and right time of
intake. A few respondents defined treatment
adherence as “to take medication regularly in
the right dosage and at the right time”.
The PLHA considered adherence as an important
aspect because it helps to prolong their life-
span. The impact of the treatment is positive
only when it is taken regularly and observing
necessary precautions. Treatment adherence
assumes vital importance as it helps in combating
drug resistance and delays the second line of
treatment which is a costlier as well as out of
reach for most PLHA.
Importance of ART:
Adherence issues
The peer treatment educators use a variety of
motivational techniques. The latent desire of
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every human being is to live longer and bad a
normal life. This innate desire of each individual
was the motivating factor to adhere to treatment
regimen. They are counselled about the worth
and dignity of every human life and are being
told that their life is equally valuable. Some
PTEs mentioned that they even deliberately
mentioned that there are no major side-effects
of ART drugs and there is nothing much to fear.
There is a need to maintain a “medication plan”
for right medicines at the right time. The PLHA
are advised to mark their check-up dates and
time for collection of ART in the calendar and
keep an alarm for the time of medication. The
family members are informed and involved in
helping the PLHA to maintain good health. The
family members are counselled and encouraged
to remind the PLHA about his/her medications
and follow-up dates, carry their medication
if the family had planned a travel. The peer
treatment educators also counsel the PLHA on
consequences of missing regular doses.
It was reported that the PLHA who were
alcoholic or drug-users often did not adhere to
the treatment. Illiteracy is also reported as one
of the causes for non-adherence as they find it
difficult to recall the name and the quantity of
the medicines they were to take. Some PLHA stop
intake of drugs as they developed side-effects of
the ART drugs and later it is difficult to convince
them to resume it.
The other causes related to non-adherence were
mentioned as –
• Treatment availability–not timely/not
assured/not continuous.
• Did not think it is very important.
• Poor motivation level.
• Fear of stigma (especially for women who
were on ART).
• Lack of awareness.
All the respondents shared that the above
reasons to be true for most people. In case of
IDUs, adherence to ART was difficult when they
happen to relapse into drugs. Some of the PTEs
added that most PLHA are keen on starting ART
but any kind of side-effects deters them to use
it further. In some cases, if they show slight
improvement they tend to take the issue of
adherence very lightly.
Efforts and initiatives for greater
adherence
The respondents suggested the following
measures for better adherence –
• The PTE must follow-up with the PLHA and
must provide all the required services and
support.
• Recruitment of group-specific peer counsellor
for each group e.g. women, MSM, IDUs.
• Awareness and education programmes for
the family members where they are taught
home-based care, ART, and how to maintain
a reminder like alarm, calendar for ART etc.
• Complicated treatment regimens.
• Travelling long distance from home.
• Financial constraints.
• Being too busy.
• Feeling sick or depressed.
• Forgetfulness.
• Too sick to take both physically and mentally
Challenges for PTE
There are various components of the programme
that are reported to be difficult to carry out.
Mapping of PLHA and frequent follow-up visits
are difficult to implement. Home visits posed the
greatest challenge in various situations such as
when the identified client was illiterate, client
was under the influence of any drug or alcohol
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during the meeting, was disinterested in the
topics discussed, was unwilling to disclose his/
her HIV status due to stigma.
The PTEs encounter financial constraints
while paying follow-up visits. Another problem
they faced was that of transportation in case
of inaccessible remote areas. Many a time
the addresses provided by the PLHA were
wrong, thus making it impossible for PTEs to
reach them.
A significant majority of the respondents
felt that the honorarium of the PTEs was
very meagre. Moreover, the programme has
faced greater setback after the honorarium
was withdrawn. A “decent” level of monthly
honorarium and travelling allowance need
to be re-initiated and enhanced, so as to
develop committed and consistent response
from the PTEs. The honorarium has been a vital
issue because the PTEs depend on the family for
financial support resulting in their disapproval
and discouragement to such voluntary work.
be due to different background and sexual
orientation.
Programme integration and
implementation
The current PTE programmes by and large are
found to be successful, nonetheless certain areas
need changes and additional inputs. The PTEs
being the chief executors of the programme
need to be equipped with necessary knowledge
and skills. The induction training must provide
complete knowledge of the disease and
treatment regime along with necessary skills like
counselling techniques, developing initial contact
• Some participants felt that PTEs lack
recent and up-to-date knowledge on
HIV/AIDS, many a time PTEs are not in a
position to answer all the questions of PLHA
pertaining to the disease and treatment.
Some participants felt that PTEs lack recent and
up-to-date knowledge on HIV/AIDS, many a
time PTEs are not in a position to answer all the
questions of PLHA pertaining to the disease and
treatment. Yet another challenge is absence of
standard/proper reporting and documentation
system which renders them directionless, many
a time.
In the case of PLHA from MSM group the PTEs
find it very difficult to establish working rapport
and contact them as they are not attentive and
easily available. MSM members are found to
be comfortable only with MSM-PTEs. There can
also be severe misunderstandings due to the
difference in the orientation and backgrounds
of the two groups. Some members observed
that the lack of cooperation and openness were
evident amongst the MSM-PLHA, which might
and follow- up with the clients, documentation
and reporting skills. The training must have
modules on positive living and interpersonal
communication.
Other components which need to be included in
the PTE programme are community mobilization
and awareness initiatives so as to disseminate
information about the programme and reduce
stigma. Group meetings in the community and
family counselling approach might be important
components in garnering family and community
support for the PLHA. Involving the local
community leaders in the advocacy training,
programme planning and development on issues
like accessibility and treatment adherence and
home-based care for the families of the PLHA
could prove effective.
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There was an expressed need for formation and
sustenance of self-help vocational training which
would ultimately aim at economic self-reliance
of PTEs. The major obstacle for programme
implementation and integration as perceived
by the PTEs was financial support to them. They
submitted that they have their own personal
financial problems and the expenses incurred
on programmatic visits add to their burden.
• There was an expressed need for forma-
tion and sustenance of self-help vocational
training which would ultimately aim at
economic self-reliance of PTEs. The major
obstacle for programme implementation
and integration as perceived by the PTEs
was financial support to them.
The issue of honorarium/TA had been the focal
point of discussion in all the groups. This is an
extremely essential issue for the PTEs as they
have to fight against family disapprovals and
resource crunch for effective delivery of the
programme. They roughly estimated that out of
the total number of PTEs in Manipur, only about
2% are willing to work on a purely voluntary
basis but the remaining look forward to earn
an honorarium as their financial condition is
precarious. Several of them added that in case
of widow-PTEs, where there is no family income,
honorarium is used for contacting and referring
the PLHA. As a result, after the honorarium was
stopped, they were compelled to withdraw from
the programme. The group therefore, was in
favour of full time PTEs on regular payroll.
Several PTEs asserted that the PLHA in Manipur
are so often harassed by the police personnel
and local “Meira Paibi” that it has caused
major hindrances for implementation of the
PTE programme. Another impediment was the
unavailability of the medicines in the remote
rural areas and also that the PLHA do not have
finances to visit the health service provider in the
area.
Some of the participants pointed out that in
spite of all HIV/AIDS prevention campaigns
the fear of stigma and discrimination is high
amongst the PLHA. The PTEs reported that
many PLHA keep hiding their positive status
and decline to participate in the programme for
the fear of stigma. The PTEs pointed out a state
specific problem of frequent “bandhs” or strikes
called by various political and regional groups
that hampered the successful implementation
of the programme.
Followuphomevisitsarethemostvital component
of the programme. Several respondents reported
that it was possible for the PTEs to meet the
PLHA once a month but at times it may happen
that the PLHA were not available at their homes
on the day of the visit. In such cases the PTEs
request their family members to ensure that the
PLHA was available on the next visit and the
date and time of the next follow up visit was
given to the family. However, some women-PTEs
reported that it was not feasible for them to pay
regular visits as they have family responsibilities
and various social functions to attend to. Some
PTEs expressed their concerns for not being able
to follow up regularly with clients. This is mainly
due to lack of support from the family members.
The literacy levels and carelessness of the PLHA-
clients also act as constraints in programme
implementation.
Most PTEs reported of having a private earning
system like poultry at their home, or a pan shop
and handlooms (for women-PTEs). There was
no fixed job for all PTEs. Most PTEs reported
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that they were doing this Peer Treatment
Education programme during their free time or
else on Sundays and holidays. Moreover, it was
only after completing their main jobs or other
personal responsibilities that they engaged
themselves in the PTE programme. Within the
groups some were even farmers and daily wage-
earners. Subsequently, some of them added
that the work of PTEs required substantial hours
of concentrated work and involvement which
affected their main occupational life. Some of
the PTEs who were unemployed reported that
they could afford to work in the programme
with limited enthusiasm and capacity as there
is no reimbursement for their travel cost. Most
of the female-PTEs were home-makers and were
managing the PTE activities along with their
family obligations. Some of the female-PTEs
reported that due to familial and social pressure
on many occasions they had to forgo PTE-related
work and delegate their responsibilities to other
PTEs.
The linkages to the following services were
suggested by the PTEs as measures towards
effective programme implementation:
• Medical care and referral services.
• Reimbursement of
diagnostic services.
HIV/AIDS-related
• Counselling and home-based care.
• Regular systematic training from basic to
higher level.
• Linkages with existing services of MNP+ like
Positive Living Centre, Drop-in Centres, etc.
counselling. However, there was greater scope
for development and improvement in the overall
functioning of the programme.
Profile of an effective PTE
A large majority of the respondents believed that
good health is the most important prerequisite for
a Peer Treatment Educator. Peer-led programmes
suffer set-backs because its members suffer
from perpetual unstable health conditions.
Besides sound health, they need medium level
of literacy, good communication and counselling
skills, leadership quality, high motivational level,
language skills, comprehensive and recent
knowledge on HIV/AIDS. Other essential qualities
are adjustment skill, commitment, sensitivity to
social issues, sincerity, honesty, good listening
skills, resourcefulness, time-management, spirit
of volunteerism, knowledge of referral centres,
and sense of cooperation and team spirit.
Continuity of the
PTE programme
Most participants felt that ultimately strong
political will of opinion-leaders and generosity of
donor community could lead to continuity of the
programme. However, at the local level strong
social support from immediate family members,
PLHA and community might help a great deal
in maintaining the stability and sustainability of
the PTE programme. Whole-hearted involvement
from the PLHA, encouragement of community
people/leader, and systematic capacity building
and empowerment initiatives also determine the
success of the programme.
Several participants reported that DLN staff
provided support and cooperation in the
areas of referral service for medicines, pre-
investigation requirements and some guidance
on various field level issues; they also received
some amount of support through training and
According to the PTEs, at an individual level
being infected and affected by HIV/AIDS was
the sole motivating factor, which drives them to
help others in a similar situation. Several effective
mechanisms could be adapted for the continuity
and efficacy of the programme such as the work
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of PTEs could be recognized by declaring award
for the best PTE, organising state-level annual
meet, publishing a quarterly newsletter for PLHA
etc. Eventually, several members felt that it is
the true spirit of volunteerism and dedication of
PTEs which could keep the programme alive.
be promoted by highlighting the importance of
PTE approach to the family, by bringing people
regularly in the meeting of DLN, sharing up to
date information and acknowledging and giving
special recognition to PTEs by the DLN and State
Level Networks.
Several PTEs believed that for sustaining their
participation in the programme they must be
provided with opportunities for professional
growth and involvement in project development,
decision-making and evaluation.
Strong debate surfaced on the issue of
volunteerism in PTE programme and the majority
upheld that PTEs should be paid staff, while
others thought that PTE should be volunteers.
According to the majority of respondents, monthly
remuneration of the PTE should range from
Rs. 1500/- to Rs. 2500/- (Rupees one thousand
five hundred to rupees two thousand five hundred)
depending on their experience and expertise. In
addition, actual travelling cost incurred by PTEs
should be reimbursed. Since majority of the PTEs
hailed from lower socio-economic strata, they
most often faced financial crisis. Many strongly
opined that, nationwide common policies need
to be framed for PTE programme in relation to
monthly remuneration.
Some of the members reported that most of
the PTEs dropped out of programme because of
their familial and financial problems. After the
withdrawal of honorarium of Rs. 400/-, many
PTEs dropped from the programme and joined
other NGOs. Several of them had to take up
other jobs for financial security of their family.
There were a minuscule number of PTEs as
volunteers because only the people who had
a sense of social responsibility and spirit of
volunteerism from their childhood along with
financial support of their families could continue
to remain voluntary PTEs. Nonetheless, few
participants considered that volunteerism could
There was greater need felt by the majority
of the groups where they expressed that the
network should bring an operational document
of common peer policy, roles and responsibilities
approved by all agencies which would help in
promoting and sustaining PTE programme.
Besides, the members need encouragement
in their work with greater psychological and
community support. There was an imperative
need felt to motivate the PTEs on positive living
before recruitment. They need more number of
workshops to clarify their doubts and a platform
to share their grievances and experiences.
Occasional motivational/spiritual talks could
be arranged for inspiration and subjective well-
being of PLHA.
Challenges in identification and
sustenance of PTEs
The main problems encountered in enrolling
PTEs were their incessant health problems and
financial constraints. For retaining PTEs in the
programme the management has to build a
positive rapport with them along with some
monetary incentives. They felt that training and
honorarium are important for them to be a part
of the programme. A few MSM reported that
stigma and discrimination was very high among
the peer group itself. The MSM are not readily
accepted by other PLHA. Therefore, it is difficult
to find MSM who are willing to disclose their
identity and work as PTEs. The group admitted
that educated and dedicated PTEs were rare and
therefore PTEs need to be adequately trained
and recruited in a formal manner.
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Attitude towards PTE
programme
According to many in the group, some people
in the community perceive the PTE approach as
a “money earning system” of a few motivated
PLHA and therefore do not offer their support.
Community groups assume that those in the PTE
programme identify PLHA and collect money
from government by submitting the “lists of the
PLHA”. Some of the local groups condemn the
PTE approach as they consider the approach is
ineffectual. A number of participants regretfully
reported that many people in their community
still consider that PLHA deserve the situation
and condition that they are in because of
their “past behaviour”. However, all PLHA show
appreciation and gratitude to the PTEs for their
selfless and productive services. Most PLHA
believed that they would be able to live a long
life with proper treatment, and that there was
a need to highlight the way of positive living of
PLHA to the general population.
A number of PTEs reported that at times there is
lack of cooperation from the programme staff;
most of the times they adopted task-oriented
approach and enquired only about targets being
achieved. Although they were aware of the
challenges faced by the PTEs in the field, they
make no attempts to help them.
Training and supervision
The training programmes must include state-of-
the-art information on HIV/AIDS, ART treatment
and need for adherence. Training tools like films, flip
chart, pictures, photographs, and IEC materials like
pamphlets/leaf lets, and posters are also needed
for imparting knowledge and skills to PTEs. Also
information and practical tips on home-based care
is essential. Training related to counselling skills,
techniques of positive living and communication
skills are needed for PTEs to work effectively.
Vocational Training also emerged as an important
area for training so that the PLHA are capable of
being self-sufficient and sustaining themselves.
It was claimed that the training material should
be in the language that can be easily understood
by the participants, training literature should be in
local dialect. The training conducted by DLNs has
• Most PLHA believed that they would be
able to live a long life with proper treatment,
and that there was a need to highlight the
way of positive living of PLHA to the general
population.
been found useful by the PTEs. It was very useful in
providing –
• Relevant and updated knowledge on HIV/
AIDS.
• Treatment education.
• Method of field visit.
• ART knowledge and home-based care for PLHA.
• Techniques for HIV/AIDS education and
adherence.
• Role model of positive living.
• Communication skills.
• Awareness regarding their rights etc.
As regard to duration of the training most
members felt that the three days training is too
short for so many significant areas of learning.
The contents need to be modified and more
sessions on family counselling, treatment
education, home-based care, and positive
living etc. should be added. A large majority
suggested that the methodology should be
entirely empirical and participatory, methods
such as group discussions, case discussion,
question-answer sessions; problem solving and
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role play would be effective. More time should
be devoted to the specific learning areas such as
treatment of Opportunistic Infection, positive
living, adherence, home-based care, nutrition,
issues of IDU, MSM, etc. In general most of the
PTEs responded that the training programme
they attended was useful.
Suggested areas of
further learning
During the group discussion most PTEs
expressed greater inclination for enhancing
• Most members sanguinely stated
that concentrated and sustained PTE
programmes lead to awareness building as
well as fostering and sustaining behaviour
change in the targeted audience.
and strengthening several areas of learning.
According to them following specific areas of
learning would help them in discharging work
more efficiently and effectively.
The participants collectively asserted that a
training modules in local language are imperative
as it will serve as a ready reference.
Programme activities to foster
behaviour change
Most members sanguinely stated that
concentrated and sustained PTE programmes
lead to awareness building as well as fostering
and sustaining behaviour change in the targeted
audience. If there is a sustained PTE programme,
it brings social acceptance of positive people in
the community and builds up motivation and
positive living. Many reported that in behaviour
change communication, stress should be laid
on risk factors that lead to HIV infection, re-
infection, and other subjects such as harmful
effects of alcohol/drug abuse, pregnancies,
introduce abortion, safer sex practices.
Several peer-led or peer-linked activities were
suggested as effective in facilitating HIV- related
treatment adherence and behaviour change
such as counselling, advocacy, street play, health
talks through electronic media/radio, focus group
discussions and regular meetings.
• Clarification of role and responsibilities of
PTEs.
• Comprehensive knowledge about ART
regimen, ART advantages, consequences
of non-adherence, side-effects, prevention
of secondary transmission to partners,
consequences of re-infection, second line
treatment and hepatitis co-infection.
• Counselling skill training with special focus
on ART (adherence, side-effects), Family,
Children.
• Communication and Interpersonal skills
• Practical sills on Positive Living and healthy
lifestyles.
• Leadership Training.
Care and support for PLHA
The group members acknowledged that they
are not confident in the care and support-related
work due to large coverage area, transportation/
communication problems, and complications
related to opportunistic infection of PLHA. The
reasons for not being confident were stated
as lack of financial support, lack of medicines,
and lack of skills in handling complex issues.
During the course of discussion some members
reported that they are confident in rendering
social and psychological support as they could
empathize with the members of PLHA, further
they are confident in the areas such as timely
field visit, regular follow up, referral service,
sharing information regarding the needs of the
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client, identification of PLHA, rapport building,
peer counselling, building trust and confidence
of PLHA. However, there are certain limitations
of the peer educator in providing and facilitating
care and support to other people living or affected
by HIV/AIDS, mainly because of several complex
issues such as social stigma, confidentiality and
poor health status of PTEs. The discrimination
faced from family members of PLHA and lack
of openness were cited as other constraints.
Sometimes it could be quite difficult to build a
rapport with new PLHA due to suspicions or lack
of disclosure by family members. The social and
economic responsibilities of families also limit
the PTEs from extending support to other PLHA.
According to some participants over the years
the attitudes of the local communities have
positively changed and PTE’s activities are seen
as a socially acceptable and charitable work.
Particularly the educated people of the local
community have shown moral and psychological
support to the PLHA and their families.
Specific concerns and needs of
PTEs: Women, IDUs and MSM
concerns of women
Women PTEs sometimes are scared to visit new
areas and unknown homes. In such situations
they reportedly lack skill in motivating the PLHA
as well as the family members. Several of them
reported that they are not able to work freely
in the community, as women they faced dual
stigma and discrimination. Most of the time
PLHA in the community suspect women PTEs as
Commercial Sex Workers when they visit their
homes. Also the neighbours of the PLHA are
suspicious about the women-PTEs visiting the
male members of the family. At times, men in
the community taunt and pass luring comments
at them. Thus most of them agree and wish to
visit only the women-PLHA in the community.
At home front they are required to look after
the family as well as they had to take care of
small children and, at times ill-husband. Above
all, the burdens related to poor health of the
family lack of finance for subsistence etc. are
important concerns that they are struggling
with. The women-PTEs added that they could
not visit the PLHA because of lack of money for
transportation.
The female-PTE work for the PTE programme
after finishing their household chores and
dropping their children at the school. They had to
strike a balance between their home and work as
a PTE, they sometimes found it difficult to make
their family understand and accept their role
as PTEs. The female PTEs managed work and
home by starting their day early in the morning
and finishing the domestic chores in order to
avoid any disruption and tension in the family.
A few stated that at times they sought support
of their family members or in-laws to take family
responsibilities. However, most of the time they
had to inform some responsible member of the
family about their plan before they left their
homes.
Needs expressed by women-PTEs:
• Educational support of their children
• Economic support for their livelihood
(particularly by widows).
• Women PLHA group for emotional and
advocacy needs.
• Family and community support
• Nutritional support.
• Day Care Shelter for income generation
programme.
• Medical and financial support.
• Increase in the number of support group
meetings.
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Concerns of MSM
The following concerns were expressed by a
few MSM members present during the group
discussion.
• Requirement of free and conducive treatment
facility in conditions such as OIs, STIs.
• Need for separate MSM Peer Counsellor at
ART centre (“A true sense of Peer”).
• Need for recruitment of more numbers of
MSM as PTEs.
• Fear of disclosure in family and friends.
• Mobility of MSM group making it difficult
to reach out, frequent changes of their
residential address/false addresses make it
difficult to contact them.
Concerns of IDUs
Following specific concerns were expressed by
some members of IDU group:
• Relapse prevention programme could be
launched in the light of high relapse rates.
• Over dose management.
• Need for separate IDU Peer Counsellor at
ART centre (“A true sense of Peer”).
• Poor health condition.
• Need safe needle exchange programme.
• Fear of sharing needles and syringes with
other current users while trying to interact
with them.
Community support
While discussing about the needs of PLHA in
the community, the members presented the
following concerns:
• Family and community support in terms of
acceptance and understanding.
• Sensitization of doctors, law enforcing
agencies regarding the rights and needs of
PLHA.
• Nutritional support.
• Medical support and availability of drugs.
• Financial support mainly for laboratory
investigations.
• Educational support of their children.
Stakeholder involvement
Participants of the groups identified range
from critical stakeholders that affected PTE
programme implementation and influenced the
behaviour change in the intended audience such
as NGOs, CBOs, Community Leaders, Pressure
Groups, Medical Departments, Law Enforcement
Bodies, MACS, District AIDS Committees,
Panchayati Raj Department, Political Leaders,
Meira Paibi, Government Health Departments,
Local Clubs, Families of PLHA, Donor Community,
Peer-networks, Religious Groups and Community
Leaders.
Time to time contribution has been made
by various stakeholders towards the PTE
programme, which has been in terms of human
power development, guidance and moral support,
financial support for programmes like preventive
awareness campaigns, condom promotion
and needle-syringe exchange programme,
and nutritional supplement. Further they could
greatly help in timely delivery of medicines
to PLHA, providing encouragement and
knowledge to PTE programme and referral
services. In addition the specialised NGOs and
government health departments could play an
important role in advocating for the programme
implementation and organize capacity building
programmes to enhance the required knowledge
and skills of the PTEs.
A large number of participants agreed that the
effectiveness and behaviour change outcome
seen among PLHA motivates the stakeholder
participation in the future programmes. However,
the stakeholders should be motivated to support
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PTE programme as this is a unique approach
based on peer-led initiatives.
Peer treatment education and
volunteerism
Participants mentioned several factors that
were responsible for spirit of volunteerism
amongst peer educators, in ideal circumstances
the volunteers hail from socially conscious and
sensitive family with spirit of volunteerism
inculcated from childhood. Moreover people
ready to volunteer for services usually hail from
financially sound background and have ample
free time for devoted work.
A few participants reported that they are willing
to work as volunteers as they had the ‘social
work ideology’ and have the willingness to make
a contribution to a cause. According to them
volunteers who are not paid were more effective
than the paid volunteers because they tend to
have greater dedication to the cause and hence
are more willing to make sacrifices. However,
today there are very few dedicated volunteers
available, hence it was felt that the salaried peer
educators would surely stay on in the programme
and carry forward the interventions to a newer
height.
Needs and issues of PLHA
Not on ART
The members felt that there was a greater need
to contact Non-ART PLHA more often as they
also require investigation of their current status.
The common needs were OI medicines, PPTCT for
women with non-ART to be treated with greater
acceptance and compassion in the health care
settings.
Sustainability
The Treatment Outreach Worker, social workers,
counsellors of TCC articulated that they had been
facing a great number of challenges in finding
and keeping the Peer Treatment Educators for
several genuine reasons. Following are some
of the challenges faced by them in finding and
retaining the PTEs:
• In the absence of any remuneration,
honorarium or travel expenses the PTEs find
it difficult to pay field visits and carry out their
roles. PTEs failed to reach out to the remote
areas of District.
• Low literacy amongst PLHA.
• Due to fear of stigma and discrimination
PLHA were not ready to disclose their identity
in their own community.
• Communication gap and misunderstanding
amongst the PLHA and the stakeholders.
• Lack of concentrated and systematic training
programmes for updating knowledge and
skills of PTEs.
• Lack of motivation building activities such as
occasional team building exercises, regular
meetings, organising motivational talks etc.
for PTEs and PLHA.
The treatment outreach worker, social workers,
counsellors of TCC mentioned that the PTEs were
usually selected through a democratic process.
They are drawn from the various client groups
and volunteers from the field as well as through
the networks of positive people.
To bring about greater sustainability and viability
in the PTE programme most members felt that
• A few participants reported that they
are willing to work as volunteers as they
had the ‘social work ideology’ and have
the willingness to make a contribution to
a cause. According to them volunteers who
are not paid were more effective than the
paid volunteers
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PTEs should be provided with adequate support in
terms of counselling, support group meetings and
regular medical support for OIs. The unsteady
political situation of the state resulted in poor
programme implementation. This is coupled with
disturbed law and order situation which at times
hinders the smooth flow of the programme.
Several members in the group suggested a
few urgent changes in the existing programme
such as-
• An efficient system of reporting should be
developed so as to increase accountability
and quality of work.
• Remuneration of PTEs is of utmost importance
which would bring greater accountability and
success to the programme.
• There must be periodical Refresher/
Orientation/capacity building training
provided by experts.
• Income generation activities for sustainability
of the programme by providing vocational
training to PLHA and support for micro credit
programme that could be fruitfully combined
with the existing peer programme.
• Greater involvement and active participation
of DLN for making such programmes
successful.
• Need for developing Peer policy with standard
roles and responsibilities with adequate
reporting and documentation system.
EHS modules
and supportive tools
The higher level functionaries like DLN’s officer,
TOWs, and counsellors of the programme stated
that they had made use of EHS modules, other
leaflets, IEC materials given by MACS, and the
counselling module developed by NACO. Apart
from this they claimed that they used their
“own modules” which possibly mean simplified
adaptations of IEC material that they developed
over the course of their work. The ability to adapt
and utilise materials to suit the local needs is
praiseworthy and at the same time points to the
need for locally suited IEC materials.
There is a need felt to further develop the existing
advocacy modules and emphasise on the
lobbying technique in EHS modules. Some people
were of the opinion that the modules were handy
but there is a need for supplementary training
materials, the modules were easy to follow but
these were not in local language. These modules
are very useful while giving training in treatment
adherence, training of PTE, ART side-effect,
home-based care programme etc. The examples
given in the modules are particularly useful in
making the sessions interesting and easy. Finally
most of them also suggested that the treatment
and training material must be available in local
dialect so that these are accessible to all.
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Nagaland
The Nagaland State Consultative
Workshop for Peer Treatment Educators
was conducted on 20th March 2007
in the township of Dimapur. Altogether 29
participants hailed from various Districts of the
State and participated in the day-long group
discussion. The following findings have emerged
as a result of four group discussions.
Objectives and components in
PTE approaches
The group members of the consultative workshop
unanimously opined that PTE programme entails
the following objectives:
• Creating a sense of solidarity among the
members of PLHA network.
• To identify PLHA and initiate them on ART.
• Conducting support group meeting at regular
interval to address emerging issues.
• Ensuring greater adherence to the
treatment.
• Counselling and referrals to other health
services.
• Forming support groups to guide and help
PLHA.
• Dissemination of basic HIV/AIDS
knowledge.
Knowledge about the disease and its treatment is
an indispensable component of the programme.
Initiating ART and motivating the PLHA to
adhere to the prescribed treatment is the prime
focus of the PTE programme and therefore all
PTEs should be well aware of the positive as
well as negative effects of treatment. In order
to meet the above mentioned objectives, it is
vital to reach out to the PLHA in the community.
The problems/issues related to individuals could
be effectively addressed through home-visits,
making it another important component of
the programme. Other components are support
group meetings, referrals, counselling, home-
based care etc.
Perceived effects of PTE
programmes
The programme is considered as a good platform
for identifying PLHA and to foster support
networks with stakeholders. Most members had
reported the following visible effects of PTE in
the community of PLHA:
• Greater adherence to ART.
• Awareness regarding the disease and its
treatment.
• Positive and healthy attitude towards living.
• Reduction in stigma and discrimination.
In relation to HIV/AIDS knowledge, there
has definitely been an increase in awareness
regarding all aspects of the epidemic. The myths
and misconceptions regarding HIV/AIDS held
by some of the members have been dispelled
and the PTEs made great difference in the
basic understanding and imparting knowledge
regarding the epidemic. Moreover there is also
a definite behaviour change amongst PTEs
themselves in terms of adapting to a healthier
lifestyle. They are able to curb certain behaviours
such as drinking or taking drugs and also they
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could practice and advocate healthy lifestyle
such as healthy eating, adherence to medication,
positive thinking and resting adequately.
As a result of PTE programme-related assignments,
participants had acquired relatively sound level
of information about ART and the requirements
for the same. This increase in knowledge led to a
greater acceptance of the disease and change in
attitude particularly for those who were already
on ART.
The main goal achieved by the programme
is networking of PLHA which primarily led to
greater solidarity amongst positive people in
Nagaland. An exchange of essential information
and life experiences proved extremely beneficial
to members. Secondly, useful information
regarding the availability of Government health
services and the services of NGOs in the field HIV/
AIDS is made available. Relatively the PLHA had
better access to treatment options. In several
cases aspects related to the programme such as
home-visits are specifically a success in garnering
support and understanding from the families of
the infected individuals. The programme also
contributed towards making the PLHA conscious
of their rights.
Existing peer education
approach
It was felt that the existing peer treatment
education programme is facing a severe
shortage of trained manpower. There is a greater
need for enhancing the strength of trained and
motivated PTEs that will finally lead to sustained
and successful programmes. In addition to PTEs,
more number of office staff is required for the
follow- up component, since it is not always
possible for the PTEs to follow-up all the PLHA on
ART for various reasons such as travelling cost,
health condition, lack of time, family problems
and, at times, stigma and discrimination issues.
It was also emphasized that the programme in
Nagaland should be designed in a way relevant
to the local context and not a straightjacket plan
applicable elsewhere. PTE approaches should be
designed only after assessing the field realities
and cultural contexts of the particular locale.
Honorarium emerged as a major concern of the
PTEs. It was felt that the PTEs need “decent”
remuneration including actual travel cost in order
to be motivated for their work. In fact, some
members pointed out that there are a few peer
education programmes where peer educators
are paid substantial amount of money varying
from Rs. 1500/- to Rs. 2500/- per month. One of
the participants raised a question; “Why PTEs will
not leave and go to join other programme where
their basic needs are met?” Most members felt
that as infected and affected individuals in the
community they are the main implementing
agents of the programme; hence, their needs
must be met.
HIV treatment adherence
Some members were of the opinion that the
issues of adherence to ART are mutual liability
of the doctor and the patient. However it was
argued that finally it is the patient who should
agree with the treatment regimen and adhere to
the treatment.
It was collectively agreed upon that ART was
indispensable for prolonging life of infected
people. It is a ray of hope for PLHA and hence
adherence is absolutely essential. Non adherence
could lead to drug resistance which would mean
an early death since majority of the people would
not be able to afford second line regimen.
Some of the concepts regarding Treatment
Adherence as mentioned by participants were:
• To take medicine on time.
• To discontinue certain harmful habits e.g.
alcohol consumption, drug use, and smoking.
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• Maintain a balanced diet.
• Get regular medical check-ups.
Importance of ART:
Adherence issues
PTE can educate the PLHA about the importance
of treatment adherence by disseminating
the updated information on treatment issues
through informative counselling. During the
Support Group Meetings or regular check-
ups PLHA can be educated on how to take
precautionary measures against opportunistic
infections, maintaining balance diet etc. Giving
life testimonies and examples of people living
healthy due to ART is exceptionally effective
and useful. PTEs give their own examples; they
also talk about the importance of adherence for
prolonging life for the sake of family members
especially young children. The lack of second
line treatment options is also mentioned to the
PLHA.
However, there were some problems in educating
people about the benefits of ART adherence.
For instance, habitual drinkers find it difficult
to control their drinking and adhere to the ART
regime. Then there are cases of women hiding
their HIV status from their family members, in
which case adherence became a problem. In
such cases, the PTEs involve and counsel their
families as well. Reasons like forgetfulness and
busy schedules are also very real and need to
be addressed in a practical manner. Women
particularly face a difficulty in adhering to the
drug regime due to the numerous domestic
responsibilities they have.
Non-availability of certain drugs for treating
opportunistic infections and side-effects of
ART were also deterrents for adherence. A
few mentioned that in the absence of proper
education and counselling if a PLHA experienced
any drug related discomfort and side-effects
then they tend to stop those medications.
In Nagaland, state infrastructure is an acute
problem, and it is not possible for the PLHA to
travel for ART drugs. Other factors that pose a
hurdle to complete ART adherence are distantly
located ART centres and chronic financial
problems faced by PLHA.
Efforts and initiatives for
greater adherence
A great majority of the participants unanimously
opined that at the first instance there are
inadequate stocks of ART and OI drugs at the ART
centres so most often PLHA travel long distance
to find that there is no supply of drugs. Hence
most felt that centres should ensure that there
were adequate stock of ART and OI drugs at the
ART centres so that when clients come for ART
their trip was not wasted. Moreover, they could
be given bulk dosage to avoid frequent trips,
which would apparently motivate PLHA towards
treatment adherence. Such mechanisms would
greatly save time, energy, and money of people
on ART.
Counselling the PLHA regarding side-effects
and how to manage them is also essential. The
threat of drug resistance and its consequences
must also be properly explained. Support group
meetings, self-help groups for savings and
financial assistance for clients below the poverty
line should be provided.
• There were some problems in educating
people about the benefits of ART adher-
ence. For instance habitual drinkers find it
difficult to control their drinking and adhere
to the ART regime.
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Programme integration and
implementation
A major problem as regards to the programme
implementation as reported by the participants
is the lack of commitment of the PTEs. Earlier it
was due to very low remuneration of Rs. 400/-
but later even that was withdrawn which caused
many PTEs to drop out of the programme. Most
participants strongly asserted that at least travel
allowances were expected to be reimbursed so
that the peer educators did not have to pay
from their own pocket. One of the participant
very emphatically stated that “Voluntary social
work meant for elites not for us, it does not
fill our bellies”. Unlike other NGOs there was
no fixed salary in the PTE programme, hence
accountability was low. The burden was high
on those working since there was a shortage of
trained staff and peer educators. Inadequate
guidelines for work, was also stated as a reason
for improper implementation of the programme.
The PTEs are expected to work mostly without
proper supervision. As a result the PTEs feel
neglected and undervalued. They feel that they
were merely asked to meet the target, without
their individual needs been understood and
met. Since many of the PTEs are unemployed,
the problem of managing time for another
occupation and the PTE work generally does not
• Female PTEs though not formally
employed had to balance between family
responsibilities and the work of Peer
Treatment Education, thus they have
to plan their schedules carefully. Many
respondents stated that the responsibilities
of a PTE could be performed only during
Sundays and leisure times.
arise. Hence, the need for adequate remuneration
for them is quite pressing. Female PTEs though
not formally employed had to balance between
family responsibilities and the work of Peer
Treatment Education, thus they have to plan
their schedules carefully. Many respondents
stated that the responsibilities of a PTE could
be performed only during Sundays and leisure
times. However, this is also not too easy because
families of PTEs do not always approve their
honorary work.
There is a greater need for increasing manpower
in the PTE programmes and to recruit them as
full time paid staff. A comprehensive package
including travel allowance, formal training, IEC
materials and nutritional support for the peer
educators is considered a necessary. Availability
of IEC materials regarding ART, Opportunistic
Infections and other components would make
implementation of PTE programmes more
effective and easier, as of now there are very
little efforts and initiatives in this direction. Also
greater networking amongst PTE programme,
ART roll out units and community based
organisations is needed. Providing first-aid
training along with kits was suggested since
many PLHA live in remote and inaccessible
areas.
In order to make the PTE programme more
effective it was felt that it could be linked to other
health services such as counselling, home-based
care and general health investigations. Providing
nutritional advice and support, and networking
for solidarity were also some suggestions made.
Most of the participants felt that there should
be spiritual counselling and support that can be
arranged with church alliances and the support
of the local community.
It was generally agreed upon that the society
is not yet accepting the People Living with HIV/
AIDS. Thus the PTE approach could be considered
to be an effective method of organising and
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empowering PLHA in the community and the
best way to reach out to the infected and
affected clients. However, most respondents
reported that there was a huge gap between the
clients and the district and state level networks
due to absence of adequate number of PTEs.
PTEs are considered as the bridge between the
networks and the clients, so the success of the
programme implementation depends solely on
how national and state network representatives
treated the PTEs. Many participants feel that
the entire PTE programme should be based on
pure democratic and participatory principles,
where all had an identity and important role
to play. A few felt that within the networks
there were escalating issues of power politics
and autocracy, which not only affects solidarity
amongst PLHA but also affect programmatic
functioning and success.
Challenges for PTE
Large scale ignorance, illiteracy and poverty
make it difficult for PTEs to create awareness
about ART treatment and its adherence. Denial
of positive status by PLHA is another crucial
issue which PTEs have to grapple with often.
Some members discussed about the stigma and
discrimination by the neighbours and community
members of the PLHA which makes home visits
extremely difficult.
Most PTEs are unable to meet all PLHA every
month due to the large numbers of patients
and few PTEs. Moreover in Nagaland some of
the remote areas are not easily accessible and
require a lot of spending in terms of time and
money. Hence PTEs could meet the PLHA on ART
during the monthly support group meeting.
A large majority of participants reported that
due to lack of proper training and guidance they
felt poorly equipped and at times uncomfortable
while conducting peer counselling sessions.
Systematic and scientific training regarding
various aspects of supportive counselling and
adherence counselling should be imparted to
all PTEs, so that they are well equipped with
knowledge, skills of counselling and psychosocial
intervention.
Profile of an effective PTE
A minimum level of literacy was expected so
that the PTEs can make good use of the IEC
materials. Almost all participants felt that the
peer educators should have good interpersonal
skills, communication skills and he/she needs to
be a good and patient listener. Basic knowledge
of documentation can also be relevant.
Updated knowledge regarding HIV/AIDS,
medications and treatment procedure was
stated as essential requirements for the PTEs.
Being able to converse fluently in the local
dialect is also a must. Personal qualities such as
being smart, outgoing, enthusiastic and a good
planner are other qualities that a peer educator
is expected to have.
Continuity of PTE programme
All the participants felt that PTEs should be paid
staff with a good salary. The general view was
that the PTE programme cannot be implemented
well enough on the basis of volunteers. If PTEs are
regular salaried employees, there will be greater
accountability and commitment. It was largely
felt by groups that there should be a minimum
remuneration of Rs. 1500 per month. Some were
the of opinion that giving travel allowance and
supporting nutritional needs is also important.
All participants stressed on the fact that travel
cost is exorbitant because of inadequate public
transport system and location of PLHA in remote
places. In this light travelling allowance should
be a separate provision in the State of Nagaland.
Regular weekly and monthly review meetings
should be conducted where the peer educators
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can share and discuss their problems and related
issues.
Challenges in identification and
sustenance of PTEs
According to most members, identification of
PTEs is not considered a problem but retaining
of PTEs in the programme is a greater challenge.
The low remuneration served as a major
stumbling block in finding and sustaining peer
educators for the programme. Moreover, the
presence of other organisation with better
visibility and remuneration patterns in the field
make it challenging for PTEs to remain in the
programme.
Some members reported that at times it was
also difficult to identify PLHA who were on ART
because they did not wish to acknowledge their
HIV status publicly and therefore they may be
unwilling to participate in such activities due to
the fear of being discriminated against. Many
PLHA who are healthy may be unwilling to
disclose their status to other peers and the larger
community.
There are several challenges in sustaining
participation of PLHA members as many of them
were sceptical of enrolling in the PTE programme
as they are not totally convinced of the benefits
it could offer. There is still a high level of
ignorance regarding the issue of AIDS which is
the basic hindrance in such programmes. Many
of the people, women more than men, were shy
and are not used to participate in independent
activities outside the home; hence they did
not wish to be involved in such a programme.
Family members of PLHA discourage them to
participate in such activities which may lead to
disclosure of their HIV status. They are not willing
to take any chances as they fear discrimination
and ostracism by their local communities. The
fear of being discriminated against is very high
in remote rural areas where ignorance is high
and there are no facilities related to testing and
treatment.
Stigma and fear of being discriminated in states
is a major hurdle in enrolling new PTEs. Disclosure
of their HIV status and the subsequent public
reactions deters many people from becoming
involved in the programme. Participants also
spoke about the stigma and discrimination that
PTEs are subjected to, since their HIV status
was known in the community. The stigma was
particularly stronger if they happen to be CSWs
or IDUs.
There was a lot of hard work involved in terms
of travelling and locating PLHA. Health concerns
and managing them along with the voluntary
work was cited as another concern for enrolling
PTEs. But by and large it was the lack of
remuneration that posed the biggest obstacle in
participation and enrollment.
Training and supervision
Most members agreed that training plays pivotal
role in PTE programmes. The following training
tools, resources and services are needed for PTEs
to work effectively:
• A vernacular easy-to-follow training guide for
each state.
• Periodic training in health communication
and counselling by professionals.
• Training input in income generation based
on sustainability.
• Interaction and experiential learning from
inter-state PTE training programmes.
• Direct training by professionals and trained
people.
• Audiovisual and other means of information
and skills.
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• Technical knowledge on ART and its health • There was no refresher training and no
effects.
guidance in the field.
• Situational analysis skills and PRA.
• Networking among the different NGOs, CBOs,
and Govt. Departments etc.
The training programmes conducted by the
DLN officer were helpful in educating the PLHA
on treatment adherence, home-based care and
health communication. The training programmes
are mostly based on information sharing and
mock practice sessions. Techniques for reaching
out to clients were provided and important
aspects such as body language, establishing
rapport with client, eliciting information through
open ended questions were focussed upon.
It is felt that the training was comprehensive
and adequate. To improve it further it is felt
that trainers should provide training to PTEs on
regular basis by inviting professional experts
from the field.
• Dissemination of knowledge and skills from
trainers to DNO and then from DNO to PTEs
was not that effective.
• Language barrier.
• Irrelevant topics were focussed upon.
Suggested areas of
further learning
A largest majority of the participants suggested
that the following areas of learning should be
imparted in systematic manner by professional
trainers:
• Anti Retroviral Therapy.
• OI management.
• Home based care.
• First aid.
The participants acknowledged that they have
received technical support through training
and are assisted in organizing support group
meetings. Further, the participants mentioned
that they receive moral support and guidance
whenever required. Government departments
and donor agencies provided support in terms of
nutrition, IEC materials were also provided along
with updated information.
• Counselling.
• Communication skills.
PTE programmes and
behaviour change
Participants felt that life testimonies served as
an inspiration for positive living. The practical
and proper information about condom use, safe
Gaps in training programme
Some of the gaps identified by participants were
as follows:
• Lack of participation on the part of the
trainees.
• No training guide or reading materials were
provided in local language.
• In some cases poorly equipped resource
persons.
• Very short duration of training programme.
• The participants acknowledged that
they have received technical support through
training and are assisted in organizing support
group meetings. Further the participants
mentioned that they receive moral support
and guidance whenever required.
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sex through audiovisual means was considered
effective. The training programmes helped to
develop the communication skills of participants
and made them feel more in control of the
situation. Support group meetings were stated as
the most effective peer linked activity that could
foster behaviour change. Sharing of experiences
is also a good strategy. Musical troupes (musical
plays) attached to the DLN and use of other
creative means such as films and radio could aid
behaviour change.
Further it was suggested that such peer-led
activities be held on a weekly basis with monthly
support group meetings. Street plays and other
major creative activities can be focussed upon
2 -3 times in a year.
In order to lead such activities it was felt that a
peer educator must possess the following:
• Creativity.
• Good communication skill.
• Thorough understanding of the topic
(HIV/AIDS).
• Deeper understanding of lives of people with
HIV/AIDS.
• Knowledge on services available.
• Good in music and drama.
Care and support for PLHA
Some respondents felt that they are confident
about certain areas in care and support while
• It was felt that counselling was
necessary but the services are not adequate
and sufficient. Poor health and financial
constrains greatly debilitate the provision
or facilitation of care and support to
other PLHA.
the rest felt that they required more training
in counselling skills and advocacy. A need for
provision of greater nutritional support and
medical care for the PTEs was also expressed.
Participants felt confident about the work that
they did due to their ability to provide support
and understanding. They felt that they were
capable of providing information about the
disease and ART which was important. Being
HIV positive themselves they could relate to the
issues of other PLHA.
However, at the same time there were certain
factors that worked against peer workers due
to the fact that they were HIV sero-positive.
Their health need is one of the basic factors
hampering their role as peer educators. There
has to be proper availability of medical facilities
at ART and VCTC and PPTC centres even for the
PTEs. It was felt that counselling was necessary
but the services are not adequate and sufficient.
Poor health and financial constraints greatly
debilitate the provision or facilitation of care and
support to other PLHA.
Specific concerns:
Women, IDUs and MSM
According to the participants, greater attention
and sensitization to the specific needs of each
group such as women, IDUs, and MSM is
needed. Women PTEs did not get enough time
to work as PTEs because they had to manage
daily household chores. A greater need is felt for
remuneration by the women respondents so that
their work could be recognised and approved
by their family members. A systematic and
comprehensive PPTCT programme and attention
to gynecological issues is essential. The women
PLHA needed special medical attention during
pregnancy to avoid mother-to-child-transmission.
Providing information and counselling regarding
child care is also a must. Most of the women
are worried about their children’s future. Hence
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there should be care centres for positive children,
where all the support including education
is provided. Most importantly most women
participants felt that they should be attended
by female counsellors so that they could discuss
their issues comfortably.
For the MSM peer educators, stigma is a greater
challenge; hence few members felt that there
should be greater sensitization and awareness
regarding their needs even among the health
care personnel. There is self stigmatization
amongst MSM and a lot of them were in denial
regarding their condition.
For IDUs, substitution therapy is essential in
order to bring about behavioural change. Better
awareness on syringe exchange programme
among the IDUs is also needed. There should be
detoxification camps and more support group
meetings for IDUs.
The members of group felt that holding regular
support group meetings for each of these specific
groups with a peer worker could be effective.
Fostering advocacy networks was also an
effective means of establishing solidarity. These
could aid the organizing of needle exchange
programmes or PPTCT interventions. However,
the efforts should not be limited to these since
peer educators can work as confidantes, and
help resolve other personal problems faced by
these groups.
Community support
The participants believed that the greatest
community support for the PTE programme would
be in terms of total acceptance of the PLHA and
encouragement for their programmes. Involving
the local community for organizing awareness
drives and health camps are therefore, essential.
Tapping resources such as local manpower for
implementing the programmes could also help,
it was also stated that the local community can
contribute resources in terms of community halls
and funds. It is also expected that the community
members particularly village heads, educational
institutes and religious bodies participate in
sensitization and awareness creation workshops
and seminars.
While discussing about the needs of PLHA in
the community, the members presented the
following aspects:
• Understanding, love and empathy from the
community.
• Care and support.
• Acceptance of PLHA as an individual in the
community.
• Non-discrimination by the society.
• Proper care and support system.
• Sensitization of doctors, law enforcing
agencies regarding the rights and needs of
PLHA.
• Nutritional support.
The first step should be towards building a
positive relationship with the community
leaders and maintaining good relationship with
local religious leaders. Most members expressed
beliefs that religious leaders could play a
significant role in communities to reduce HIV/
AIDS related social stigma and discrimination.
To a large extent organizing health awareness
programmes in collaboration with the community
could help. Raising awareness in the community
was considered a good method for dispelling
myths and reducing the stigma associated with
the disease.
Advocacy and networking are other techniques
that also work for the cause of PLHA. Legal
steps could be taken if the need arises; none of
the participants had experienced any form of
physical violence. Providing moral support to
those discriminated is essential so that the PLHA
do not feel isolated and depressed.
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Stakeholder involvement
and contribution
The critical stakeholders who can bring about a
potential change were listed as:
• Local community members.
• District and village level government
authorities.
• Govt. health systems and AIDS Control
Society (involvement at the grass roots).
• Community gate keepers who could prove
important agents in effecting change.
• Legal systems which can provide formal
support against discrimination.
• Donor community needs to focus and plan
programmes keeping in mind the local
contexts.
• Other peer networks for effective knowledge
dissemination and empowerment.
• Community elders and church leaders play a
vital role in shaping the community (members
are scared to go against the set norms of the
community, which are, governed by these
leaders).
Financial assistance and human resource in
organizing programmes is a much needed
contribution by the community. Access and
support from community gate keepers such as
village heads and local authorities is also crucial.
Legal systems can also contribute by providing
their services and legal protection against
discrimination.
Greater advocacy and sensitization initiatives were
required for garnering the support from all quarters,
thus demands good coordination of DLN and
SLN. The PLHA themselves can provide personal
testimonies at awareness platforms and positive
speakers’ bureau to give a first-hand account of
the disease. Many workshop participants felt that
the brotherly/sisterly affection within Naga society
can be invoked to some extent to collaborate in
such programmes to create solidarity.
Selection of PTEs
Counselling and support group meetings were
the first point of contact for PLHA and the peer
workers. In the course of these activities the
existing PTEs observed and interacted with the
PLHA. Observing their level of knowledge, lifestyle,
behaviour change and commitment level, a
reasonable idea could be obtained regarding
the individual PLHA. Looking at personal
qualities and also the overall educational, family
background and commitment level of PLHA they
were chosen as PTEs. Home visits were also quite
useful in providing a good idea regarding the
suitability of a PLHA for PTE work.
Suggestions were made by the members towards
newer strategies–
• A PTE must be motivated to participate and
actively contribute to the programme.
• Recruiting full-time paid PTEs.
• Committed and dynamic PLHA not on ART
should be included.
• Nutritional support to PLHA.
The churches, community leaders, tribal leaders,
students unions, youth groups, women’s
associations, village councils and local self-help
groups can play a key role in implementing the
programme. All the stakeholders can be instrumental
in encouraging and organizing awareness
programmes and sensitizing the community.
• Strengthening of support group meeting.
• Capacity building for PTEs and staff need
urgent attention.
• Increase the involvement of churches as the
church is the biggest platform for raising
awareness and garnering support.
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Peer treatment education and
volunteerism
Being unemployed many of the PTEs were
working as volunteers. A few felt that
volunteerism might work only for a short
duration; hence for sustainability remuneration
is considered essential. Due to the lack of
financial rewards corresponding to the load of
work there was low commitment to the cause
of PTE programme. Those who were employed
elsewhere found very little time to devote to
PTE work. Women also struggled to balance
their role in their homes along with PTE work,
but their family members were not happy. The
fact that PTEs were also HIV positive means
that they also need to take extra care of their
health which is possible only if they had some
source of income and could take adequate
rest. Occupation, domestic work and other
issues were an important priority for most of
them. Voluntary nature of work meant that it
was “unimportant” by their family members.
A few members brought the discussion on
principle and philosophy of peer education
model, however the members reported that
in order to promote volunteerism it was
absolutely essential that the programme
makes reimbursement of travelling expenses,
if not a monthly salary. On the same issue
there was great divide of opinion amongst
the members. Further, providing training and
holding support group meetings for the PTEs
were also suggested. Getting feedback from
peer educators and inviting them to seminars
and conferences to share their experiences
could also serve as a motivating factor for
voluntary PTEs. Time to time acknowledgment
of the work of PTEs is essential as to build their
motivation and morale.
According to many members volunteerism
amongst PTE is generally short lived. A sense
of solidarity is seen as a motivating factor for
volunteering, but the divide within group, hard
work and stigma could be major deterrents for
volunteerism. Most participants repeatedly
felt and expressed that there was a lot of
hard work involved in a peer educator’s role,
compared to which there was no remuneration
provided. Their health requirements and
financial problems make it impossible for them
to work without any payment.
Cost effectiveness of PTE
programme
Most members believed that in the absence
of cost data and the budgetary allocation of
the programme, it would be inappropriate to
discuss the area of cost effectiveness. However,
regarding the effectiveness they opined that if
the programme aims to achieve sustainability
and success of the PTEs programme, it needs
to remunerate PTEs so that they can devote
full time in the programme. It will also foster
more dedication and higher commitment from
the PTEs. Accountability will also be higher
according to the participants if the PTEs were
salaried staff.
Support group meeting
The monthly support group meetings served as
good platforms for interacting with others having
• According to many members
volunteerism amongst PTE is generally
short lived. A sense of solidarity is seen as a
motivating factor for volunteering, but the
divide within group, hard work and stigma
could be major deterrents for volunteerism.
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similar problems and issues. The exchange of
information and support generated a sense of
oneness and we-feeling that is desirable. Key
information such as CD4 count, nutrition and
health tips, and availability of testing centres
also prompted people to attend the monthly
meetings. The ‘positive living’ concept which
was stressed upon during the meetings is also a
motivating factor which gives hope and support
to the PLHA.
Common needs and issues of
PLHA not on ART
It was felt that there was a lack of adequate
information especially regarding side effects of
ART. This issue needs to be addressed, especially
considering the dangers of non-adherence.
Members’ inability to deal with the side effects
of ART was one of the chief reasons for non-
adherence. Nutritional support and Rehabilitation
of IDUs were suggested as essential. At the
same time travelling expenses for regular testing
of CD4 counts may be provided. The increasing
numbers of debilitating cases and infected/
affected orphaned children suggested that there
was an urgent need for residential care centres
for infected and affected children.
Sustainability
The current knowledge of PTEs regarding the
locally available services and resources was
satisfactory. PTEs identified the following aspects
and service delivery points–
• That ART is available free of cost in public
health facilities.
• Referrals of clients to DLNs and other service
providing centres.
• Support from the community and churches.
• NSACS office and ART centre in Kohima.
• State referral centres.
• Community-based organization and NGOs
working for the prevention of HIV/AIDS.
• Service delivery point (NGOs).
• Probable Referral centres.
EHS modules and
supportive tools
(Responses from counsellor, DLN officer, social
worker).
All the respondents made use of the EHS modules
and IEC material provided by PFI and Engender
Health Society. They found it extremely useful
since it was simple and could be easily followed
by the PTEs. The EHS modules were valuable
resources which served as reference guides for
the peer workers, which helped in keeping their
knowledge refreshed. The modules were useful
during the various training sessions provided
by the DLN officers as well, due to the simple
language used. However to improve upon the
existing resources, it was felt that there should be
more IEC materials about ART drugs, treatment
issues and HIV/AIDS in general using various
audiovisual aids and materials. There was also a
need expressed to have informative pamphlets,
preferably in the local language regarding the
local service providing centres.
By and large all the participants are quite
familiar with the resource manuals and are using
the resource materials provided in their work
on a regular basis. The counsellors, DLN staff
as well as outreach coordinators were satisfied
with the resource materials and are keen on
recommending its use to others as well.
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Tamilnadu
The Tamilnadu State Consultative
Workshop for Peer Treatment Educators
was conducted on 12th March in Chennai.
Altogether 26 participants participated in
the workshop who hailed from the state and
participated in the day long group discussion.
The following findings have emerged as a result
of four group discussions.
Objectives and components
of PTE
The participants viewed peer education in
holistic fashion, according to the participants,
peer education treatment programme had the
following objectives–
• Educating the PLHA, their families and
the community on all aspect of HIV/AIDS
treatment and care.
• Providing information regarding the
importance of the regular anti-retroviral
treatment and adherence.
• Help improve the quality of life for the PLHA
by building confidence and providing support
and encouragement.
• Providing information regarding home-based
care.
• Testing and counselling for both the individual
and family.
• Helping the PLHA as well as their families to
cope with the infection.
• Providing practical advice, helping in personal
and medical aspects of client’s life.
The follow-up visits by PTE was identified as a
major component of the programme which
effectively deals with psychological and
treatment problems of the PLHA. The other
component was helping and attending the
monthly support group meetings of the members
of network.
Perceived effects of the PTE
programme
The effects of the programme were reported
to be positive, the group responded that the
programme provides encouragement and
psychological motivation both to the PLHA
as well as the peer educators. The programme
offered a positive outlook towards life and
gave them hope. It helped them in updating
their knowledge on treatment and medication.
The education through the programme has
benefited not only the person himself but his
family members also. Right information and
counselling provides hope and encouragement
to the families, as a result of which they accept
the HIV infected individuals and are able to
take better care of him/her. The support group
meetings had offered a platform to the PLHA
to clear their doubts, discuss various issues and
ventilate pent-up feelings to peer members. The
group admitted that there is an increase in the
number of PLHA since the beginning of the PTE
programme.
The participants felt that as PTEs they had access
to information that they did not have earlier.
After the initial shock, fear and hopelessness
that they experienced after knowing their HIV
status, the PTE programme helped them change
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their attitude significantly. The availability of
treatment and medication gave them hope and
confidence to live. All the participants were proud
of being associated with the PTE programme
due to the fact they could reach out and help
other people like them. They have acquired
information on how to maintain regular drug
regimen despite the side effects, managing
Opportunistic Infections, maintain personal
hygienic, and dealing with children who have the
infection. The programme has brought about
changes in maintaining healthy life behaviour
e.g. diet, sleep and exercise patterns etc. which
earlier were given least importance. It has led to
lifestyle change and greater attention is given
to regular check-ups and medication, practice
of safe sexual practices amongst sero-positive
couples.
Apart from the above-mentioned lifestyle
change the programme had helped the PTEs in
developing interpersonal and communication
skills. The group reported a significant change
in the attitude of peer educators as well as
their audience. PTEs clearly visualised that
suicidal ideation, fear and insecurity, a fatalistic
attitude towards life were replaced by hope, self-
confidence and optimism in targeted PLHA. They
had developed courage to deal with difficult
situations and had begun to accept harsh reality
in a pragmatic manner, which is manifested in
the form of willingness to disclose their HIV status
to other infected people and help them in every
possible way. The programme has tremendously
• During the support group meetings
participants interacted freely, in the process
sharing they felt concerned about each
other and often became closer than the
family member.
helped the PTEs in all aspects of dealing with the
disease and leading their lives more positively.
After association with the PTE programme they
were better equipped to help others like them.
The programme had proved extremely effective
for the PLHA, the PTEs play a major role in
motivating PLHA to come for the treatment and
lead a healthy life. The PTE epitomise a positive
person living a healthy life for the PLHA. This
instils confidence in the PLHA to live a normal,
healthy life just like any one else. It is a great
consolation for PLHA to see a HIV sero-positive
person being so active in life, and trying to help
another positive person to lead a healthy life.
The PTEs had also helped in changing the attitude
of family members of PLHA, most of the times,
they succeed in convincing the family members
to be careful in terms of diet, medication and rest
of the PLHA. They endeavoured to neutralize the
negative reactions of the families towards the
PLHA and counselled the members to provide
the necessary care and support to them. The
participants substantiated their views with
various case studies, wherein their efforts had
directly resulted in positive changes. For instance,
a PTE from the group narrated how one of his
clients was discriminated against by community
members but after the PTE discussed with the
village Panchayat, the issue was resolved. The
support group meetings were considered to have
a positive impact on both PTEs and the PLHA.
During the support group meetings participants
interacted freely, in the process sharing they felt
concerned about each other and often became
closer than the family member.
Existing peer education
approach
The existing peer education approach was
considered to be effective and essential, however
the participants expressed their concern for
improvising the programme for better results.
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There was an urgent need for having greater
number of trained PTEs especially for follow-
up visits. The need for actual travel allowance
was considered most pressing as lack of proper
remuneration served as a dampener to the peer
education work. In addition refresher training
programmes and incentives/motivation could
be provided to encourage greater participation.
It was suggested that a large scale convention
should be held once a year for all the PLHA of
the state, wherein the PTEs could share their
experiences, get motivated and bring about
greater solidarity in the PLHA fraternity. The
participants felt that the peer education approach
should rope in celebrities, young students and
volunteers in order to make their work more
effective and built awareness in the society.
There was also an expressed need for a general
medical camp to be conducted for the PLHA.
The group felt the need for greater networking
with various government and non-governmental
agencies to enhance the collaboration and
efficacy of the PTE programme.
HIV treatment adherence:
Importance and issues
According to the participants ‘Treatment
Adherence’ in HIV treatment refers to the various
medications and the method of consuming them
on time in the right doses. The group seemed
to be well informed about the benefits of the
treatment adherence. The participants shared
some of the benefits like; the treatment helps in
boosting CD4 counts, reduces the frequency of
OIs, helps in leading a healthy and normal life,
improves the quality of living.
PTEs serve as an important link between the
health-care professionals and the PLHA. To a large
extent they facilitate the health-care of PLHA in
the community, they take on the responsibility of
referral, counselling so that PLHA are motivated
to access health-care services. They also explain
to the clients that the failure to follow the
treatment regime would render the treatment
useless and second line drugs would be needed
which are often unavailable and costly.
Regarding educating the PLHA about the
importance of treatment adherence the group
stated the following:
• During the meeting of a PLHA, the PTEs give
comprehensive information about ART and
explain the importance of regular treatment
regime. In addition PLHA are informed about
the side effects of certain drugs like NVP.
• The PTEs make follow-up visits and
motivate the PLHA to adhere to ART. Most
of the PLHA need motivation and constant
encouragement to carry on the medication.
• The PLHA are explained the harmful effects
of discontinuing ART and the possibility of
drug resistance.
• General awareness is created amongst PLHA
so that any fears or doubts regarding the
treatment or disease are cleared.
The group also discussed the difficulties faced
by the PLHA in adhering to the treatment.
Many of the PLHA do not have good education,
they are mostly masons, migrant workers, civil
and industrial labourers. Their income is most
often very meagre and hardly get enough to
feed themselves and their family members.
That makes it all the more difficult for them
to maintain minimum standard of nutritional
level and hygienic. One of the main concerns
of the PLHA is that they are not sure whether
they can take the medication for life long. Many
PLHA have the risk of losing their income or
even face unemployment due to side effects of
ART. There are certain beliefs of the PLHA which
discourages treatment adherence; many PLHA
believe that there is not much harm in skipping
their medication for a day or two during some
social events or while travelling. Some PLHA on
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ART are afraid of taking the medication due
to the various side effects. It is challenging to
nullify these belief systems of the PLHA. Another
problem is that a large number of medicines are
to be consumed (pill burden) for some people
especially children. Travelling to the ART centres
is also burdensome financially and physically for
the people who are at times too sick to travel
long distances and cannot even afford to spare
cost of travel. Inadequate support from family
especially for female patients is cited as a reason
for non-adherence. MSM also stressed on the fear
of discrimination from their MSM community, if
they started ART.
Identifying the infected individuals is difficult
since many of them do not wish to reveal their
HIV status. The participants further added that
on identifying the individuals many of them
disliked being watched over and didn’t like the
repeated visits by the peer educators. Some
group members added that it is extremely
difficult for the PTEs to visit and counsel clients
who are in the state of ‘denial’ about their
HIV status. Persuading all such people to take
ART regularly, despite many side effects were
reported to be tough. Frequent follow-up visits
were difficult for the PTEs particularly women.
Women PTEs discussed about the awkward
situations they have to endure when they visit
the homes of male PLHA. Their repeated visits
would often raise doubts amongst the local
community and make it difficult for the patient
as well as the peer worker. Some participants
had very unpleasant experiences of some male
clients making sexual advances at female PTEs
due to their repeated home visits. Hence it is not
always possible to maintain follow-up visits. On
the other hand, HIV positive women are easily
convinced if the PTE is female and are also more
comfortable conversing with them.
Another intricacy is the illiteracy of the some
PLHA, in such cases dispelling the myths
regarding the illness and treatment becomes an
uphill task due to the side effects of the drugs
and long-term nature of the treatment. Most of
the participants agreed that many of the PLHA
on feeling better with the medication stop the
medication and start smoking, taking drugs,
alcohol etc. therefore, continuous follow-up is
tedious and frustrating.
Efforts and initiatives for
greater adherence
The following efforts and initiatives were required
towards achieving better treatment adherence
amongst PLHA:
• Maintaining confidentiality.
• Sensitisation programmes for health workers
when dealing with MSM, CSWs.
• Broadening the training to include topics like
opportunistic infections, counselling skills
etc.
• Ensuring the support and cooperation of
health officials and other hospital staff.
• Providing nutritional support.
• Arranging some financial aid for travel.
• Increasing the number of PTEs.
• Maintain the ratio of PTE: PLHA is 1:10 for
regular follow-up.
Programme implementation
and integration
The group discussed various problems in
implementing the PTE programme, during the
process some significant points emerged. First and
foremost reason for the under-achievement of
their target was the fluctuating health condition
of the PTEs. Being HIV positive themselves, the
PTEs need to look after their health. Hence, the
need for non-infected people’s involvement in
the programme was felt. Secondly, they felt
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inability of PTEs to meet all the expectations of
the PLHA, which de-motivates them to a great
extent. They either do not have the power or
the resources to fulfil those needs. Thirdly, there
was a lack of capacity building initiatives for the
PTEs. They need to be trained and equipped
in dealing with various situations and must
possess recent and updated knowledge in the
field. In order to facilitate the PTE programme
the group felt that they required greater training
and motivation, especially for follow-up home
visits. The respondent suggested that better
information resources in local languages with
more comprehensive training modules are
needed for high performance. It was suggested
that if continuous refresher training programmes
were organized in every 3 months it could lead
to better implementation and integration of
the programme. In addition, training should be
provided on specific health issues like TB, home-
based care, counselling and documentation,
etc. that would make a difference in the work of
peer educators. The training programme must
also serve as a platform for PTEs to share their
personal experiences and discuss issues pertaining
to the programme. The group felt that the PTE
programme must include non-infected people as
well, so that the sero-positive people would not
feel discriminated against.
Another obstacle in the programme
implementation is locating houses of PLHA in the
community. Many a times these addresses given
by PLHA are incorrect and incomplete. Some
participants expressed the need of devising
innovative strategies for maintaining data bank
of PLHA and locating addresses of PLHA.
The group felt that if peer educators had more
decision-making powers they could be more
effective in their work and be able to effect
positive change. Increasing the number of peer
educators and providing identity cards to them
were other suggestions given by participants.
Networking is an important element of effective
PTE programme, the group members considered
linkages to other services are imperative. They
believed that there must be professional tie-
ups with agencies providing training services
especially in the areas of counselling, personality
development and communication skills. Amongst
other services, networking with agencies
providing care and education to the children
of PLHA was given importance by the group.
Some mentioned other services like medical
services, home based care programmes, condom
promotion, Yoga and meditation programmes
etc. could be part of the training programme.
The group opined that the resources and
human power have been inadequate leading to
overburdening of the existent staff. Moreover,
PTEs do not get any monetary returns or
recognition for the work done. This has caused
frustration and de-motivation amongst the
PTEs. Apart from these, a common concern for
remuneration was voiced by the PTEs as it was
difficult for them to spend their own money to
make follow-up visits to distant places. According
to the group members the remuneration was
considered as the main motivating element,
since financial issues would then cease to be
stumbling blocks in performance.
• The training programme must also serve
as a platform for PTE to share their personal
experiences and discuss issues pertaining
to the programme. The group felt that the
PTE programme must include non-infected
people as well, so that the sero-positive people
would not feel discriminated against.
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Challenges for PTE
According to the respondents, the PTE work
involved many compromises and sacrifices. Their
work as PTEs was on a voluntary and part-time
basis; thus the women PTEs have to take care of
their family, children and household duties and
then make time for field work. Balancing several
duties simultaneously proves to be a tough job;
especially when the PTEs themselves have to
look after their health.
Despite years of experience they still encounter
several problems and difficulties in helping the
PLHA. Locating the houses of PLHA is difficult
due to the inaccessibility, high travel costs and
long distances. In many cases, the addresses
given by the PLHA are incorrect. Many PLHA are
not keen about PTEs making visits to their homes
• A PTE has to have a range of personal
qualities and work skills to be able to deliver
services efficiently. The basic quality which
was considered important was dedication
towards the work and the ability to work for
little or no remuneration.
The PTEs are expected to meet targets in the
absence of any travel allowance or honorarium.
This makes it difficult for the PTEs to garner
support of their own families. The families of
PTEs do not support such honorary work as it
consumes time and energy which could otherwise
be utilised for paid jobs.
Profile of an effective PTE
A PTE has to have a range of personal qualities
and work skills to be able to deliver services
efficiently. The basic quality which was
considered important was dedication towards
the work and the ability to work for little or no
remuneration. The extensive field work required
for the job can be quite demanding, hence the
PTE must be a highly motivated individual. He/
she must be aware of the responsibility and hard
work that the PTE job entails. He/she needs to
be flexible and confident enough to deal with
various issues. Since the PTE has to encourage
other PLHA to lead a positive and healthy life,
he/she must first believe in it. Counselling is a
daunting task, considering the fact that the PTE
himself is also suffering from the disease, he/she
must be able to remain unperturbed and give
support and hope to others.
as their community members look at them with
suspicion. Few of the PLHA are unmarried and
this is the reason why they do not want the PTEs
to visit their houses, for instance a female PTE
visiting an unmarried male or vice versa arouses
curiosity and undue attention of the community
members. Another problem is that PLHA are
still in denial stage, they find counselling such
involuntary clients extremely difficult. An
additional disadvantage is the lack of support
from the hospital and health professionals, which
makes it more difficult for the PTEs to implement
the programme. Also, there is a dearth of trained
PTE, as a result the current peer treatment
educators are over burdened.
Some expressed that educational qualifications
should not be given prime importance, they felt
that a basic level of education was essential to
work independently and effectively. Complete
knowledge and fluency of the local knowledge
was considered critical so that he/she can
communicate sensitive issues in a manner that
is comprehendible to the people. Getting the
message across to the target audience was
believed to be the ultimate aim, for this purpose
good communication and counselling skills
are vital. Being able to effectively interact with
diverse groups, requires qualities like patience,
motivation and the ability to devise creative
means of providing information. One aspect
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which was repeatedly talked about was the need
to have updated knowledge in the subject and
allied issues. In fact participants stated that if a
peer educator is not sure of certain information
he/she should refrain from providing it. He/she
must be able to convey information in a creative
and correct ways with the help of pictures and
models.
Personal qualities like optimism and
determination were also stated as qualities of
a good peer educator. PTEs must also possess
leadership qualities and be confident enough to
deal with personal issues that the client shares.
Continuity of PTE programme
The group maintained that for the continuity
of the PTE programme, providing remuneration
was an essential criterion. Out of the four groups
that participated only one felt that PTEs should
be volunteers and not a paid staff member. The
reason for this was that if the peer educators
worked as paid staff there would not be the
same degree of dedication. They articulated that
their work was inspired by a genuine willingness
to help and not to earn money. Nonetheless,
reimbursing the travel fares and other expenses
borne during field trips would be appreciated.
While the other three groups agreed on this,
they felt that merely travel reimbursements
were not sufficient. Since the peer educators
were themselves HIV sero-positive they too
had many expenses. Women PTEs who didn’t
work elsewhere felt that they would get better
support from their families if their work was
paid. Remuneration could also be in terms of
benefits and concessions. Providing them with
awards, gifts and free medication would be a
great source of motivation for the PTEs who had
to bear the travel expenses. Further it was also
suggested that the peer educators be provided
with other resources such as medical kits, and
nutritional support or medical expenses since a
lot of them had lost their jobs due to the illness.
Another factor affecting the continuity of the PTE
programme was the problems faced in enrolling
fresh PTEs. It was difficult to get committed
people for this voluntary work. Though people
were available but only few agreed to do the
work. In order to recruit new PTEs it is essential
to provide them monetary benefits like travel
allowance, food and accommodation. Some
members proposed that women PTEs should be
paid extra money for sustenance.
Yet another aspect for better performance and
retention was the allocation of areas for home-
visits. The PTEs wished for a choice when areas
were allocated. This would help them to carry-
out their duty well. They feel that they will be
able to reach out to a larger number of people if
their choice was considered.
Lastly, the group opined that the most important
aspect for continuity of the programme was
to keep the motivational level of the PTEs high.
However some members expressed that there is
a lack of communication skills amongst the PTEs,
also there are the problems of less education,
information, unclear goals, and targets. This
could be achieved by organising regular or
interim training programmes on capacity and skill
building of PTEs.
Overall suggestions to retain PTEs, the following
efforts could prove useful:
• Provide reasonable honorarium and
conveyance to PTE.
• Provide greater input for capacity building
training.
• Provide income generation trainings to PTE.
• Motivate every PLHA to work for the common
cause.
• Encourage PLHA to regularly attend support
group meetings.
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• PLHA who match the PTE profile could be
identified.
• Arrange resource persons from various
medical and technical fields to train PTEs at
network level.
• Regular counselling, consultancy and support
for PTEs.
• Built team spirit and team leaders.
family counselling, updated information on HIV/
AIDS and its treatment, home-based care, and
self-development could be added to the training.
The group opined that resource materials may
be given to the PTEs in a kit bag containing
stationary, pamphlets, demonstration models,
condoms, educative literature containing enough
information about nutrition, OI management,
ART should be provided during the training.
Attitudes toward PTE
programme
There are mixed reactions of the PLHA towards
the PTE programme, some of the PLHA
appreciated the programme and expressed they
are benefited from the services while others
did not like the PTEs visiting their homes. The
latter were more conscious of their sero-positive
status and were fearful of stigmatisation by the
family, friends, neighbours and community. They
considered it better to pass on the necessary
information through the telephones rather than
personal meetings. Otherwise PTEs must make
arrangements to meet the PLHA in general
hospitals or ART centres. It was reported that in
some of the cases the PLHA even changed his
residence to avoid repeated visits by the PTEs.
The PTEs have not been able to get the full-hearted
support of the community and all PLHA due to
negative attitudes towards the programme. They
however endeavour to transform the negative
feelings to favourable attitudes by counselling
the PLHA and their families. The PTEs submitted
that they succeed in most cases through their
patience and dedication.
Training and supervision
The group believed that training and supervision
are an indispensable component of the
successful PTE programme. The group rated the
training they received as satisfactory, however
they added that certain areas like individual and
Gaps in the training programme
Various opinions and suggestion were expressed
regarding the training programmes as members
identified several gaps. Though the training
programme covered relevant and important
topics such as condom use, OI management,
dealing with ART side effects and nutrition, the
participants felt that there should have been
more interactive discussions so that PTEs could
share their experiences. The group demanded
that the duration of the training programme
must be increased in order to cover the topics
comprehensively. There must be refresher-
training programmes for ensuring a long-term
learning.
Another gap in the training was that the
learning material was not in a standard format
and had to be altered for local use. Some basic
facilities such as food and water during training
programmes could be improved upon. Some of
the very important areas need to be covered such
as communication skills, counselling methods,
street theatre and innovative methods. There
was an expressed need for dealing with issues
of specific groups such as pregnant women,
children, CSWs etc.
PTE programmes and
behaviour change
Awareness is the fundamental aspect to bring
about a behaviour change, information provided
on practical issues addressing the queries of
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PLHA, so that the programme successfully targets
behaviour change. Providing access to condoms
and providing education on importance safer
sex practice. There are other important elements
like being a role model to the other PLHA so that
they can get inspired. There should be emphasis
on individual level counselling to the PLHA,
which could lead to behaviour change. Using
case studies of positive people could be the
best way to motivate people. Apart from these,
there should be camps conducted by colleges
and other educational institutions to promote
awareness; local theatre and innovative means
like street plays and puppet shows could be very
effective and interesting. Regular support group
meetings were most effective particularly to
handle with groups of MSM and CSWs who face
severe discrimination from all quarters.
awareness in the community and bring rights-
based approach for the positive people. There
are a number of government schemes that
are available for PLHA, the PTEs strive towards
obtaining the schemes for the PLHA.
Specific concerns:
Women and MSM
The group discussed many of the issues
pertaining to women and MSM. The group
members opined that many women PTEs carry
out their household activity during the week
and fulfil their role as a PTE on weekends. The
female PTEs discussed about the important
household responsibilities and adjustments
they have to make to pursue responsibilities of
PTE. The most important thing for female PTEs
The group listed the following peer-led activities
as extremely useful for bringing about behaviour
change in the community:
• Regular support group meetings.
• Street plays and creative communication in
local art forms.
• Mass media programmes such as TV, radio,
newspapers.
• There are other important elements
like being a role model to the other PLHA
so that they can get inspired. There should
be emphasis on individual level counselling
to the PLHA, which could lead to behaviour
change.
• Targeted intervention in schools and
colleges.
Awareness programmes should also be timed
at a convenient slot where most people could
attend. It was suggested that the support group
meetings be held once a month.
Care and support for PLHA
The PTEs concentrate on PLHA and their families
for providing of necessary care and support. The
PTEs refer the PLHA to the service providing
agencies in case of need. They also make sure
that the service delivery system is responding
properly and the PLHA receive the desired
service. They are involved in advocacy, promoting
was to secure the trust and cooperation of their
family members so that they could focus on the
work undertaken and balance their roles. It was
also expected that female PTEs gave complete
information about their field visits; this has help
in winning the confidence of their in-laws and
other family members. This issue was particularly
relevant for PTEs with young children who had to
be looked after by relatives or neighbours. The
fact that PTEs’ work is mostly unpaid thus the
family remembers views their engagement as
futile and unimportant. In many cases of PTEs,
family members do not favour honorary work,
considering the sacrifices that needed to be done
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for it. The cost of travelling and other expenses
are exorbitant for most PTEs, added with this
the exertion and hard work in the field always
became disputable topic for female PTEs.
At the field level, sexual harassment was one
of the chief concerns for women PTEs. Even
in support group meetings some men would
approach them and ask for sexual favours.
This has created a lot of unpleasant feelings in
them and such problems of women PTEs led to
misunderstanding and suspicion at home.
As regards to MSM, no care was provided because
in most possibilities their friends and family had
abandoned them. Being single and unmarried
most of them are not steady in one place; hence
it is difficult to track them down. Problems like
unsteady income, family discrimination make
them vulnerable to various addictions like drugs
and smoking. Some MSM members reported that
the society has a negative attitude towards MSM
and therefore the PTEs who are visiting them are
also stigmatized. This negatively affects the PTEs,
same holds true in the case of working with IDUs.
For MSM some special requirements were noted
by the group–
• Initiating the CBOs for MSM and more MSM
PTEs needs to be recruited.
• Increasing and make available the number
of IEC materials on MSM issues.
• Capacity building of MSM PTEs.
• As regards to MSM, no care was provided
because in most possibilities their friends
and family had abandoned them. Being
single and unmarried most of them are not
steady in one place; hence it is difficult to
track them down.
• Arrange advocacy meeting with the police
officials to address MSM problems.
• Special programmes should be developed for
MSM in target areas such as prisons.
As other PTEs, MSM and IDUs also have not
been able to sustain in the programme for long.
According to the group they realize that they had
poor concentration and perseverance. It is found
difficult for them to prevent MSM and IDUs from
indulging in high risk behaviours. Reportedly the
relapse rate is high among them.
Efforts and initiatives to retain MSM volunteers
in the programme:
• Arrange many advocacy programmes to
support MSM and help them to control police
atrocity on MSM community.
• Arrange job opportunities to MSM and help
them to avoid prostitution.
• Increase the number of service delivery
projects for MSM.
Community support
The group admitted that community support
would certainly help the PLHA to lead a better
life. They identified the following as their
expectations from the community–
• Protect them from discrimination, character
assassinations etc.
• Support and encouragement to family of
infected person.
• Media awareness and advocacy.
• Legal rights on family properties, insurance
etc.
• Providing more employment opportunities as
and when possible.
• Income generating schemes for their
welfare.
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The MSM face a double discrimination; firstly,
because of their sexual orientation and secondly,
due to their HIV sero-positive status. They
also reported being easy targets of the police.
Therefore, the MSM wish for social recognition
of their sexual orientation and protection from
the police.
Stakeholder involvement and
contribution
The group identified the following stakeholders
those who could be the potential contributor to
the PTE programme–
• Government hospital staff.
• Opinion leaders of community.
• SHG groups.
• Women’s groups.
• SocialOrganizationslikedoctor’sassociations,
Lion’s Club, Rotary Club etc.
• Corporate Houses.
• Legal groups.
• Human Rights Groups.
The participants perceived the role of
stakeholders as an important one. They felt
that the stakeholders could help by donating
money for general health camp or conducting
advocacy programmes. Some of the members in
the group expressed that provision of nutritional
supplements for the infected people and their
family during the programme would be of great
help. A few members suggested that some
potential stakeholders themselves could organize
medical camps or sponsor for medical camps.
For general medical camps, school premises
are used and the local leaders arrange for food.
Some community volunteers come forward
and mobilize people for the camp. Some social
organisations and citizens’ groups also support
by sponsoring and organising health events.
There could also be donations in the form of
books, bags, clothes and shoes for the children of
PLHA. Free professional advice and consultation
from the experts such as lawyers, bankers, and
medical personnel could be very useful.
The PTEs must initiate the involvement of
important stakeholders by inviting them to
the awareness programmes or any other
programmes organised for the PLHA. In order
to generate their long-term support, their efforts
must be appreciated and recognised occasionally
in the felicitation programmes.
Selection of PTEs
Members of the discussion said it is somewhat
difficult to select PTEs and equip them on several
areas such as HIV/AIDS information, education
and communication skills, and treatment
adherence etc. The PLHA do not like to reveal their
HIV status easily and lack of support from the
community also leads to frustration among PTEs.
Hence, many volunteers are sceptical about taking
up the challenge. Counselling and giving support
to PLHA is sometimes a complex task, when the
PLHA do not accept the reality and they speak
harshly to them. Home visits are considered mind-
numbing as the travel costs are not reimbursed
and there are several issues involved in it such as
confidentiality and community response.
There are NGOs that help the PTEs to select a
person to become a PTE. There are also doctors
who refer people who are potential PTEs. Many of
them come voluntarily as they wish to contribute
to a useful cause. Being infected themselves they
wish to help others like them.
Suggestions for newer strategies
The members of the groups provided the
following suggestions for newer strategies–
• The field coordinators need to have a
concrete action plan which can be reviewed
periodically.
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• Frequent capacity building programmes for
PTEs.
• Networking should be done with other
organisations and the state.
• Social workers should be involved in
documentation, facilitating activities
of groups, planning and evaluating the
outcome.
• Create income generation programme for
PLHA.
• Provide ID cards to PTEs, which is given
priorities at Government Hospitals when
PTEs accompany and refer PLHA for OIs and
other health emergencies.
• Need some structural changes in PTEs
programmes to create sustainability and
avoid PTE attrition.
developed in them. Hence a few group members
felt that reimbursement of travel expenses
and free medication would be sufficient for
motivating the PTEs. On the other hand-some of
the participants suggested volunteerism can be
promoted by encouraging non-infected people
to assist in programme implementation. This will
also reduce the discrimination of existing PTEs.
Cost effectiveness of
PTE programme
Maximum number of the respondents felt that if
PTEs are paid for their work, their responsibilities
and accountability are much higher. Salaried
peer educators could strictly be monitored as
compared to the volunteers. A salaried PTE
could make more number of home visits per day
because of their financial viability.
Sustainability
• While the dominant view is that sacrifices
could be made for the cause of HIV/AIDS,
volunteerism cannot be a long term option.
Thus, for all practical purposes the PTE
approach should be based on paid workers
as most of them hail from very poor socio-
economic background.
Peer treatment education and
volunteerism
While the dominant view is that sacrifices could
be made for the cause of HIV/AIDS, volunteerism
cannot be a long term option. Thus, for all
practical purposes the PTE approach should
be based on paid workers as most of them hail
from very poor socio-economic background.
Interestingly, some participants also felt that
being volunteers a sense of responsibility has
Greater networking and advocacy could ensure
that experts in the field could provide their
advice and treatment at subsidised rates or free
of cost. The concept of positive living served as a
source of optimism and motivation for the PLHA
as well as PTEs.
For the cause of sustainability of the programme
the respondents believed that paid staff could
certainly help to a great deal. Secondly, more
attention and care is required to organize and
conduct the programme. There is also a quality
in performance and more accountability in the
functioning. The participants also felt that there
would be less worry for paid staff as they will
not be bogged down by financial considerations.
Hence, there is a need to develop clear incentive
system to sustain volunteers.
EHS modules and
supportive tools
Most of the participants are quite familiar
with the EHS modules as they are frequently
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using them. They felt that the modules give
vital information in a simple manner on some
topics, however there is an expression of interest
for greater coverage in several other aspects
such as latest information and advancements
related to HIV/AIDS, basics of counselling, and
motivational skills for greater adherence etc.
Many said providing case studies and counselling
information will also be practically relevant.
This would certainly add greater value to the
IEC material. The current format is found to be
effective and overall most PTEs are satisfied with
the modules.
Regarding the programme implementation,
participants showed a great deal of enthusiasm
and dedication. Many of them said they are
proud of their contribution to the noble cause and
hence wish for some changes in the programme
including reintroduction of remuneration in the
PTE Programme.
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Conclusions and
Recommendations
Peer treatment education has emerged to
be a powerful approach to look into the
multitude of problems faced by PLHA.
Improving the quality of life of PLHA calls for
a comprehensive multi-pronged initiative. It
is imperative to strengthen the existing PTE
approaches and expand its scope by providing
the essential support and resources. These
consultative workshops held in six states had
provided a platform for PTEs to voice their
concerns and suggest alternate ways for
achieving the objectives of peer treatment
education. The opportunity was well utilised by
the participants to express their appreciation,
concerns and opinion.
Numerous suggestions were made by the
respondents and thoughtful ideas were shared
during the workshops. Overall Peer Treatment
Educators (PTEs) were satisfied with the ongoing
PTE programme and were keen on its continuation
with certain added impetus. The PTEs felt that
the programme had definitely benefited them
as well as the PLHA in several ways. Providing
information and increasing awareness levels
was a key goal that had been met to a large
extent. Increasing access to ART and adherence
to the treatment regimen were success areas of
the programme. The PTEs were proud of their
work but felt that lack of remuneration was
hampering their motivation and efficacy of the
programme.
1. Remuneration and
additional support
Remuneration emerged as most critical
issue for all most all PTEs; thus to enhance
the efficacy and involvement in the PTE
programme, adequate remuneration for
the PTEs should be resumed. The field visits
were generally demanding for the PTEs
due to long distance travel and
inaccessible areas. In such cases the
PTEs had to spend considerable amount of time,
money and energy. Greater attempt should be
made to bring about greater accountability
and commitment amongst the PTEs. Travelling
allowance for PTEs, nutritional support and
non-monetary rewards such as recognition,
felicitation functions may be introduced in the
programme.
Most PTEs are unemployed and hail from poor
economic family background. In the absence of
dedicated voluntary peer educators, programme
organisers have to settle for someone who
may lack aptitude but shows interest in the
programme. This trade-off could be settled
by offering a reasonable remuneration (as
suggested by PTEs Rs.1000 to Rs.1500 a month
in some state consultative workshops) for Peer
Treatment Educators.
For women PTEs remuneration is of greater
significance, particularly for those women who
lost their husband or currently caring for their
sick husband. Most women who are working as
peer educators have not been in employment
before joining the PTE programme. Due to
deteriorating physical health, it would be useful
especially if women PTEs were considered for
regular nutritional support scheme.
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2. Income generation,
micro-credit and vocational
skills training
Most people infected in the country today are
in dire financial and material needs. It is well
established fact that PLHA need and expect
concrete benefits from their involvement in
the programme e.g. money, medication, food,
support, opportunity to participate in income
generation schemes etc. Thus integrating
income generating activities, micro-credit, and
vocational skills training for those infected and
those who care for them is crucial.
3. Selection criteria for PTEs
Basic minimum selection criteria for a PTE must
be established so that there is some level of
consistency in the profile and standardization
of work done. A certain minimum level of
education up to middle school is essential so
that the peer educator could effectively use IEC
tools, handle and maintain some basic records
and documentation. The PTEs are expected
to discharge all their duties efficiently like
imparting information, counselling, home visits,
referrals and support to the PLHA. The role of a
Peer Treatment Educator is crucial, one needs to
have a desired personal profile, e.g. commitment
and motivation towards the cause, a positive
self and public image. PTEs should be screened
for attitude, skills, motivation, availability,
accessibility, credibility and their ability to inspire
trust and get along well with others.
felt inadequate in handling various work-related
problems/situations. All PTEs across states may
undergo systematic and long-term trainings on
various significant spheres, such as counselling
skills (psycho-social, nutrition and hygiene),
health education/communication, healthy life-
styles, organizing skills for group meetings,
documentation and reporting, confidentiality
rules, home-based care, ART adherence and
rights of PLHA.
As per the need-assessment and competency
mapping specific training sessions may be
organised on a regular interval. More number
of participatory, experiential training and
orientation programmes would ensure exposure
of the PTEs to accurate and updated information
and learn practical job related-skills with more
professional attitude. Regular training sessions
with more comprehensive modules that address
topics relevant only to their work, with various
adult learning pedagogies and methodologies
such as facilitated small group discussions,
simulation exercises, training games, case study,
role play techniques could be used. Moreover,
attending such need-based programmes could
also serve as a motivating factor for peer
educators to remain in the programme.
5. Core training curriculum
The training curriculum must be packaged for
the specific audience. Following areas may be
included in the training manual of peer educators
that might prove beneficial:
4. Training input for PTEs
Almost all PTEs opined the training and capacity
building remains the most crucial element of the
PTE programme, the success of the programme
depends on the trained and committed human
power. In addition to the repeated suggestions
of the PTEs for regular training sessions, they
corroborated with the fact that most often they
• Almost all PTEs opined the training and
capacity building remains the most crucial
element of the PTE programme, the success
of the programme depends on the trained
and committed human power.
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• Specific tips for and alternatives for lifestyle
change.
• The medical aspects of the disease.
• Sexuality and susceptibility to HIV.
• Sexual health counselling and preventive
measures.
• Treatment adherence.
• Voluntary counselling and testing (VCT).
management of information. Regarding report
writing it was felt that a standard proforma,
formats may be pre-designed and maintained
for documenting individual sessions, field visits,
group meetings, etc. The supportive tools
which could help in making the job of PTEs
easy and effective were IEC materials, monthly
action plans, charts for on ART adherence, and
various aids to remind them about schedule for
consuming the medicine etc
• Legal and ethical issues.
• Positive living.
• Home-based care
• Individual and family counselling
• It is imperative in the programme to
consider certain minimum facilities for
conveyance by hiring bicycles for those
who request for the same during their
field work. More particularly such support
and arrangement would be a great boon
to the north-eastern states, where civic
infrastructure was almost absent.
In addition, training curriculum should include
the rights of PLHA, confidentiality rules, they
also need information on referrals for further
diagnosis, treatment of OIs and ART, as well as
palliative care.
7. Local conveyance
In all states, travelling to the dwelling of PLHA
was a major concern as they were mostly located
in the remote and inaccessible areas. Reportedly
a few PTEs already utilizing their own resources
such as money, bicycles and motor bikes to
reach out to the PLHA. Thus, it is imperative in
the programme to consider certain minimum
facilities for conveyance by hiring bicycles for
those who request for the same during their
field work. More particularly such support and
arrangement would be a great boon to the
north-eastern states, where civic infrastructure
was almost absent.
Locating the PLHA in the communities is a
difficult task as many of the clients provide
incorrect addresses for the fear of disclosure; thus
there was a greater need to regularly update the
database of PLHA and those PLHA not desirous
to have PTEs visiting their homes may be called
to the Treatment Counselling Centres or Positive
Living Centres.
8. Recognition and encouragement
6. Supportive tools
PTEs should be given orientation on basic
documentation and report writing skills so that
they could maintain proper and standard field
records. The programmes in all states should
develop and maintain standard systems for
Peer Treatment Educators require high level of
motivation and commitment to sustain as there
are innumerable hardships and challenges in the
field. The major factors in motivating individuals
are recognition, increased involvement in
meetings, monetary benefits, working conditions
and inter-personal relations that determines
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the overall success of the programme. Thus,
adequate and clear policy/mechanisms should
be developed to increase job satisfaction and job
performance of PTEs. Some mechanisms may be
introduced to keep peer educators motivated.
Those may be public recognition for good work
(those open to disclosure), providing Certificates
of Merit, career growth opportunities, prospects
of participating in higher level trainings and
conferences.
9. Specific group identity:
PTEs intervention
The gender element was also strong with regard
to the home-visits. The majority opinion was that
there need to be uni-gender home visits for follow-
up. There must be a gender-specific allotment of
peer educators for home visits. Home visits for
women PLHA need to be conducted by female
PTEs and likewise for men. Similarly, PTEs from
MSM community should deal with MSM PLHA
and also an IDU PTE for PLHA who are IDUs.
Visiting male PLHA especially those employed
had to made only during late evenings, thus
there should be some measures taken to ensure
the safety of the PTEs during the field visits,
The PTEs highlighted the issues of the specific
groups affiliation such as IDUs, MSM and
positive women within the PLHA and PTEs.
Empathetic understanding of a member
towards his/her own specific group remains
always higher, for example a MSM peer member
could empathise and accept the other peer
member. MSM is a distinct group within PLHA
who face greater discrimination. They do not
reveal their status easily even in health settings.
Hence special efforts were required to handle
the issues of the group, without them feeling
discriminated against. Hence for true nature of
peer intervention there is a need to have a peer
educator from within the MSM group as because
their needs and issues were different and had to
be handled with care and sensitivity. It may be
therefore suggested that PTEs must belong to
the same distinct group as their clientele so that
they are able to reach out effectively.
10. PTE approach:
Additional thrust
A useful suggestion of “identity card” made
by several PTEs could be considered for
implementation in each state. The identity
cards for the Peer Treatment Educators will help
peer educators gain access into the communities
without facing unnecessary harassment by
authorities or community gate keepers. Having
an ID card could help to maintain a proper
record of the number of PTEs involved in the
programme and also the drop-out rates. It could
also serve as a symbol for the recognition of the
work done by the peer educators and give them
a sense of formal recognition.
A number of participants suggested having Day-
care centres for the children of PLHA and PTEs. If
their children were looked after, the peer workers
would be able to focus on their work in a better
manner. The need for the day care centres was
also felt by PLHA particularly women who were
working. Special care and nutrition was needed
for HIV infected children. Day-care facility may
be arranged with special provision for nutritional
support, group treatment and education for the
children in the community.
11. Availability of relevant
material for PTEs
Improved and updated IEC material in local
languages may be made available for PTEs in the
field. For the awareness sessions such as condom
usage, home-based care, there was a need for
providing models so that demonstration and
interactive sessions could be held. There was also
a need for more audio visual resource material
which would be much more effective than simply
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providing the information in counselling sessions.
Handy literature may be made available in the
form of posters or pamphlets that could be given
to PTEs. This would serve as a quick guide for
recollecting the information given in workshops.
12. Synergy in PTE strategy
across networks
At present there are many networks of PLHA
working in the field using the various PTE
principles and approaches. However, each of
them functions independently with varied
objectives and goals. Thus, there is a greater
need to have a common PTE programme across
all organisations working in the field. As a result,
duplication and overlap may be curtailed to a
large extent, at the same time greater sense of
uniformity and solidarity in the PTE programme
may emerge. This kind of networking initiatives
amongst various stakeholders would be beneficial
in achieving overall objectives and goal for Peer
Treatment Education.
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State-wise Comparative
Chart of Recommendations
Recommendations
State
1. Andhra
Pradesh
State-wise Comparative Chart of Recommendations
Remuneration/
Reward System
Selection/Profile ofSupport Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
Monthly
Honorarium
should be
restarted.
Recommended
sum is
Rs. 1000/- to
Rs. 1500/- per
month.
Educated,
communication &
rapport Building
skills, knowledge
on HIV/AIDS,
self motivated,
leadership
qualities, patience,
flair for learning,
empathetic,
outgoing, respect
for others and
commitment to
work.
Bicycle and a Cell phone
identity Cards
Monthly action plans,
charts for on ART
adherence, various aids
for reminder.
Topics like treatment
adherence.
Assimilation of
communication skills, rapport
building.
Recent knowledge about HIV/
AIDS, STD management.
Individual, family and
pediatric ART counselling.
Group counselling, home-
based care and training
and skills for role plays,
organisational skills for small
meetings and large scale
support group meeting.
Regular feedback sessions
to address individual level
concerns and issues of PTEs.
Skill building training
workshops for the PTEs.
Updated knowledge in all
relevant areas to keep them
abreast with the challenging
and dynamic field situation.
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Recommendations
State
2. Karnataka
State-wise Comparative Chart of Recommendations
Remuneration/
Reward System
Selection/Profile of Support Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
Resume monthly
honorarium
and Travel
allowance.
Effective
communication
Skills.
Fluency in local
language and area.
Personal qualities
like confidence,
smart and
high level of
commitment.
The prospective
PTE must not have
too many personal
responsibilities.
Incentives like
nutritional support
should be provided.
At least for 5 to 7 days
training input.
The training must cover
Opportunistic Infections-
like T.B, behaviour change
communication, community
outreach, STI and RTI,
report writing and finance
management.
State-wise Comparative Chart of Recommendations
Recommendations
State
Remuneration/
Reward System
Selection/Profile ofSupport Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
3. Maharashtra
Introduce either
an honorarium
or a reward
system for
achieving
targets and
improved
performances.
Medium level
literacy.
Basic knowledge
of the HIV/AIDS
treatment,
medications.
Local language
and culture.
Good
communication &
interpersonal skills.
Other qualities like
empathy, positive
demeanour and
commitment were
desirable.
Increase more
number of PTE
volunteers.
Support literature
and material in local
language.
Flexible duty timings and
regular meetings.
Need for separate MSM/
women PTEs support
group meetings.
Specialised programme
for PTEs.
Regular counselling
sessions or small group
meetings facilitated
by experienced and
qualified worker to help
PTEs resolve with their
burn-out syndrome.
Provide guidance
and support to build
confidence and skills.
More number of
awareness programmes
in rural areas.
More proficient resource
people and specialised
Doctors.
Sessions and discussions
should be made livelier by
encouraging participation
through case discussions,
questions/answers, anecdotes
and life stories etc.
Medium of instruction need to
be local language.
IEC materials in local
language.
Short-films on relevant topics
could be shown.
Role play/street plays or some
other creative skills to be
taught.
Short sessions for specific
groups such as MSM, CSWs,
IDUs.
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Recommendations
State
4. Manipur
Recommendations
State
5. Nagaland
State-wise Comparative Chart of Recommendations
Remuneration/
Reward System
Selection/Profile ofSupport Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
Monthly
Medium Level
Transport and
remuneration of literacy, Good
communication facilities
for the PTE
communication &
such as a bicycle and a
should be
counselling skills,
cell phone.
introduced.
Amount may
range from
leadership skills.
Knowledge about HIV/
AIDS treatment and
referral centres.
Formation and
sustenance of self-help
groups.
Rs. 1500/- to Personal qualities
Impart vocational
Rs. 2500/-
like adjustment skill, training.
depending on resourcefulness,
their experience commitment,
and expertise. sensitivity to social
Reimbursement issues, sincerity,
of travel
honesty, good
costs may be listening skills, time
considered.
management, spirit
of volunteerism and
Films, flip-chart,
pictures, photographs,
IEC materials like
pamphlets/leaf lets,
posters are also needed.
Standard/proper
reporting and
cooperation with
documentation system
others.
to be put in place for
Recruitment of group- better direction and
specific peer counsellor performance.
for each group e.g.
Women, MSM, IDUs.
Training has to be of a longer
duration for 5-7 days.
Training on Counselling Skills,
Techniques of positive living
and communication skills are
needed for PTEs.
Up-to-date and recent
knowledge and education in
HIV/AIDS treatment and care.
State-wise Comparative Chart of Recommendations
Remuneration/
Reward System
Selection/Profile ofSupport Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
A minimum
remuneration
of Rs.1500 per
month was
considered
essential.
Must have a
minimum level
of literacy, good
interpersonal and
communication
skills.
Had to be a
patient listener.
Must be smart,
outgoing,
enthusiastic.
Transport and
communication facilities
such as a bicycle and a
cell phone.
More IEC materials on
ART drugs, treatment
issues and HIV/AIDS in
general using various
audiovisual aids and
materials.
Informative pamphlets,
leaflets preferably in the
local language could be
made available.
Ready information
and contact details
regarding the local
service providing
centres.
A vernacular easy-to-follow
training.
Periodic training in health
communication and
counselling by professionals.
Training input in income
generation based on
sustainability.
Interaction and experiential
learning from inter-state PTE
training programmes.
Direct training by
professionals and trained
people.
Audiovisual and other means
of information and skills.
Technical knowledge on ART
and health effects.
Situational analysis skills and
PRA.
Networking skills should be
taught.
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Recommendations
State
6. Tamilnadu
State-wise Comparative Chart of Recommendations
Remuneration/
Reward System
Selection/Profile ofSupport Needed
Effective PTE
Resources –
Training Input
Infrastructure/Material
Provide
reasonable
honorarium and
conveyance to
PTE.
Other benefits
like nutritional
support,
free medical
attention
during health
emergencies.
Most desirable
quality is
dedication and
high level of
motivation.
Skilful in
communication
and diplomatic.
Ability to work
for little or no
remuneration.
Other qualities
are high level of
commitment and
responsibility.
Resources such as
medical kits, and
nutritional support or
medical expenses.
Duration of the training
programme must be increased
to five to seven days.
Topics such as Individual and
Family Counselling, updated
information on HIV/AIDS and
its treatment, Home-based
Care, self-development must
be included in curriculum.
Training should be provided
on specific health issues like
TB, Care and Counselling, and
Reporting & Documentation.
PTEs’ need for greater support
from other programme staff
and health professionals.
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