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Good Practices ACT HIV Global Fund PFI |
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GOOD PRACTICES
In Facilitating Access to Care and Treatment
A Study of District Level Networks for People Living with HIV/AIDS
POPULATION FOUNDATION OF INDIA
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GOOD PRACTICES
In Facilitating Access to Care and Treatment
A Study of District Level Networks for People Living with HIV/AIDS
POPULATION FOUNDATION OF INDIA
B-28, Qutub Institutional Area
Tara Crescent
New Delhi –110 016
E-mail: popfound@sify.com
Tel: +91-011-42899770
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Design and Printing
New Concept Information Systems Pvt. Ltd.
E-mail: nc.communication@gmail.com
Ph.: 26972743, 26972748
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Table of Contents
1. BACKGROUND AND CONTEXT
5
2. GOALS
7
3. DEFINITIONS AND CRITERIA
8
4. METHODS AND ACTIVITIES
10
5. RESULTS AND LEARNINGS
12
5.1 RESULTS – GOOD PRACTICE AREAS AND SUMMARY
12
5.2 ORGANISATIONAL FUNCTIONING AND DEVELOPMENT (OFD)
15
OFD Case Study 1: Good documentation in Imphal East, Manipur
5.3 ADVOCACY (ADV)
16
ADV Case Study 1: Village level advocacy meetings in Guntur district, Andhra Pradesh
ADV Case Study 2: Advocacy with Sangli ART Centre for increased services to PLHA, Maharashtra
ADV Case Study 3: Ensuring access to ART through railway concessions in West Godavari, Andhra Pradesh
5.4 DIRECT SERVICES (DS)
19
DS Case Study 1: Support group meetings in three DLNs of Andhra Pradesh
DS Case Study 2: Support group meetings in Kovilpatti Government General Hospital, Thoothukudi, Tamil Nadu
DS Case Study 3: Nutrient supplements provided at support group meetings in Kolhapur, Maharashtra
DS Case Study 4: Training in preparation and sales of nutrition powder by network in Bellary, Karnataka
DS Case Study 5: Meditation and cultural activities promote psychological well-being among PLHA in
Belgaum, Karnataka
DS Case Study 6: Combining medical camps with support group meetings increases access to care and treatment
in Bellary, Karnataka
DS Case Study 7: Village level mapping identifies care and support resources for PLHA in Madurai, Tamil Nadu
DS Case Study 8: Coding bottles with symbols helps PLHA remember their medicine dosage and timing in
Kolhapur, Maharashtra
DS Case Study 9: Volunteering for Family Health Awareness campaign strengthened linkages with Primary
Health Centre in Kanchipuram, Tamil Nadu
5.5 LINKAGES AND REFERRALS (LAR)
28
LAR Case Study 1: Linkages for widow pension and income generation in Guntur, Prakasam and Vishakhapatnam,
Andhra Pradesh
LAR Case Study 2: Resource mobilisation through linkages in Guntur, Andhra Pradesh
LAR Case Study 3: Mobilisation of medicines through linkages in Kadapa, Andhra Pradesh (also DS)
LAR Case Study 4: Facilitating linkages among PLHA in neighbouring districts, the ART Centre and NGOs,
in Churachandpur, Andhra Pradesh
LAR Case Study 5: Linkages and Referrals with counselling services in NGOs and VCTC in Prakasam, Andhra Pradesh
LAR Case Study 6: Multiple networks in Tamil Nadu are linked with shelter and educational institutions for
children infected and/or affected by HIV/AIDS
LAR Case Study 7: Government - Positive Network linkages benefit women in Aurangabad, Maharashtra
(also ADV, DS)
LAR Case Study 8: Linkages with private pharmaceutical company helps in procurement of ART at concessional
rates in Aurangabad, Maharashtra
LAR Case Study 9: Linkages with counsellors from VCTC and PPTCT strengthen services to people infected by
or at risk of HIV in Theni, Tamil Nadu, and Aurangabad, Maharashtra
5.6 GREATER INVOLVEMENT AND/OR EMPLOYMENT OF POSITIVE PEOPLE (GIPA)
39
GIPA Case Study 1: GIPA through placement of DLN staff in hospital in Belgaum district, Karnataka
GIPA Case Study 2: Involvement of Positive Network at women’s sub-jail programme in Tiruchirapalli,
Tamil Nadu, enhanced uptake of VCTC services
GIPA Case Study 3: Involvement of PLHA in support to women availing PPTCT services at Kovilpatti General
Hospital, Thoothukudi, Tamil Nadu
GIPA Case Study 4: Network helps build capacity of doctors in HIV Management in Thanjavur, Tamil Nadu
5.7 MISCELLANEOUS (MISC)
42
MISC Case Study 1: Positive Speakers’ Bureaus of East Godavari and Guntur districts in Andhra Pradesh
MISC Case Study 2: Positive Speakers’ Academy in NTP+, Thane district, Maharashtra
MISC Case Study 3: Positive Marriages in Kadapa, Andhra Pradesh
6. RECOMMENDATIONS
46
7. REFERENCES
48
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Acknowledgments
Population Foundation of India is indeed grateful to the PLHA who
had expressed their views without any hesitation. PFI gratefully
acknowledges the immense support received from all the District
and State Level Networks of 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. PFI is thankful to SAATHII for
undertaking this study and acknowledges its impressive efforts of
meeting the stakeholders and beneficiaries determinedly.
Prelude
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. The year 1 programme evaluation
had identified good practices carried out by the district level
networks that are worth of documenting and make available
for wider dissemination. Acting on this recommendation, PFI
commissioned this study to Solidarity and Action Against The HIV
Infection in India (SAATHII) for documenting the good practices
by the district level networks of people living with HIV/AIDS.
Hope this document would be of significant use to networks of
people living with HIV/AIDS across the country and to Managers
implementing care and support programmes.
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1
Background and Context
The Population Foundation of India (PFI) is one of the Principal Recipients of
the Global Fund grant (R4) for the programme Access to Care and Treatment
that offers care and support services to PLHA. The programme focuses on setting
up and strengthening district level networks for People Living with HIV/AIDS
(PLHA) called as District Level Networks (DLNs), Treatment Counselling Centres
(TCCs), Positive Living Centres (PLCs) and Comprehensive Care & Support
Centres (CCSCs), advocacy with corporate sector for setting up ART Centres at
corporate health facilities, build the capacity of programme functionaries and
conduct special studies.
INP+ is engaged in providing treatment education, counselling, ongoing care
and support and follow up services for people living with HIV/AIDS – including
those receiving anti-retroviral treatment from the ART Centres established in
the six high HIV prevalence states through:
District Level Networks for care and support services.
Treatment Counselling Centres located at public sector ART Centres to
provide treatment education, counselling and linking PLHA to DLNs for
follow up, care and support services and promoting treatment adherence.
Positive Living Centres for care and support services including opportunistic
infections management.
DLNs serve the purpose of empowering people living with HIV (PLHA),
identifying their needs, helping them access treatment and services, exercise
their rights, evolve solutions and provide an enabling environment. The TCCs
have been set up at the government anti-retroviral therapy (ART) Centres in
the six high prevalence states, and provide supplementary services such as
adherence counselling and link to other care and support services.
Many DLNs and TCCs established by the ACT project have provided appropriate
and timely solutions to the problems experienced by PLHA. Many have evolved
innovative good practices within the existing system. Such practices are
essential for the long-term sustainability of the programme, for catalysing
decentralised HIV/AIDS responses and to enhance the continuum of care and
support beyond ART provision.
Based on field visits, PFI and INP+ identified 23 District Level Networks (seven
in Andhra Pradesh, five in Maharashtra, six in Tamil Nadu, three in Karnataka
and two in Manipur) and two Treatment Counselling Centres in Tamil Nadu
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as having evolved good practices that could serve as models for replication
and scaling-up. In July 2006, PFI appointed Solidarity and Action Against The
HIV Infection in India (SAATHII) to document the good practices (including
those previously identified and those identified during the field work) based
on evidence generated from the organisations, their beneficiaries and external
stakeholders, using qualitative research techniques.
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2
Goals
The goals of this study were to document and analyse good practices of
DLNs in five states of high HIV prevalence, share this information with other
stakeholders, and promote cross-learning across district/states.
The following specific questions were addressed:
1. What are some of the correlates of good practices in district-level networks
of PLHA and treatment counselling centres?
2. What recommendations can be made for future initiatives to initiate and/or
strengthen the technical capacity of such institutions?
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3
Definitions and Criteria
3.1 Access to Care and Treatment
Access to care and treatment is defined to include all those ways in which PLHA are
enabled to receive quality care and treatment when they need. Care and treatment
broadly encompasses diagnosis, treatment (ART, OI prophylaxis and management),
referrals and follow-up, nursing, counselling and palliative care, as well as support
to meet economic, social, legal, psychological and spiritual needs. (UNAIDS 2003,
MAAS-CHRD 2006).
3.2 Good Practices
The concepts of good practices, promising practices, and best practices have
been borrowed from the business sector and have now permeated in the fields
of science, technology, development and industry. These terms have lately also
been adopted in the arena of public health:
Best practice: “[It] is a practice that upon rigorous evaluation, demonstrates
success, has had an impact, and can be replicated.”
Good practices and promising practices: “These … are … practices or
approaches that have not been evaluated as rigorously as ‘best practices’, but
that still offer ideas about what works best in a given situation.” (INFO)
In the HIV/AIDS arena, the Joint United Nations Program on HIV/AIDS, uses the
term ‘best practice’ to refer to the accumulation and application of knowledge
about what is working and not working in HIV prevention, education, treatment
and care, in different situations and contexts. (UNAIDS)
Figure 1: Manipur District Level Networks –
Categorisation of Good Practices
5
East Imphal (EIM)
4
Churachandpur (CCP)
3
2
1
0
OFD
ADV
DS
LAR
GIPA
MISC
Categories of Good Practices
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In a more conservative approach, UNESCO adopts the term “good practice”
to refer to an “approach, frequently innovative, tested and appraised, which
points to its success in other contexts. A good practice is the innovation that
makes it possible to improve the present and therefore intends – or can intend
– to be a model or a standard in a given system.” (UNESCO)
For the purpose of this study, the following working definition of good
practice was used:
A good practice is a programme, strategy or activity undertaken by the
DLN or TCC that has demonstrated a direct role in improving access to
care, support and treatment, in improving organisational function and
sustainability and/or in decentralisation of services to PLHA.
3.3 Criteria for Selection
For this project, good practices were selected in two ways: (i) Previous
identification by PFI and INP+ during their field visits, and (ii) A subset of
those that were identified by SAATHII, in consultation with PFI.
Once the list of good practices emerged, several were selected for follow-up
and analysis. These included good practices based on the following criteria:
a. They went beyond merely carrying out funders’ mandates.
b. They suggested potential for replication and scaling up in other districts.
c. They could be substantiated by triangulation of evidence.
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4
Methods and Activities
The study was qualitative in nature, and involved the following key activities
and methods.
4.1 Desk Research
In July and August 2006, SAATHII’s team consisting of the team-lead and
programme managers reviewed the preliminary list of good practices identified
by PFI/INP+, and examined previous collections of good practices (e.g. UNAIDS
2000) and documentation methodologies (e.g. CCF 2006).
4.2 Data Collection and Validation
Data on good practices were validated in three ways:
Focus group discussions (audio-recorded with informed consent)
Individual and joint in-depth interviews (audio recorded with informed
consent)
Collection of additional evidence (documents, press-clippings, etc.)
Interactions with stakeholders included focus group discussion (FGD), in-
person, or telephonic interviews.
Confidentiality considerations: In the case of beneficiaries who were community
members (PLHA) other than District Network staff, no names were used in
reporting. In the case of facilitators and supporters, oral consent was
obtained for some who have been named, and the others have been treated as
anonymous.
During the process of data collection, additional good practices were identified
and shared immediately with PFI, and a subset of these were selected for
validation using the above steps. Three lines of evidence were deemed necessary
for validation:
1. Evidence from DLN staff
2. Evidence from beneficiaries, typically adult PLHA, but also occasionally
beneficiaries of advocacy events conducted by DLN staff
3. Evidence from other stakeholders, either individuals or organisations, who
had helped in the development of the activity or event identified as a good
practice. These are illustrated in Diagram 1.
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Diagram 1: Lines of Evidence for Validating Good Practices
DLN
Beneficiaries Good Practices
External
Individual/
agency
The data were collected during 250 person-days of field work.
4.3 Data Analysis and Report Preparation
Data collected and validated were summarised through collation of researcher
field notes and audio recordings. They were then coded according to category of
good practice (e.g. advocacy, networking, direct services: see Results section).
For each state, the good practices were enumerated according to category
(see Results section). Finally case studies were developed for all validated
good practices.
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5
Results and Learnings
5.1 Good Practice Areas and Summary
District Level Networks
The field work yielded 131 validated good practices in the 23 District Level
Networks.
These good practices are listed by state and district, with complete information
on field-visit dates, stakeholders contacted, types of interactions, information
gathered and supporting materials, where available.
Each good practice was classified under one or more of the categories listed in
the Table 1 below:
Table 1: Good Practice Categories, Codes and Examples
GOOD PRACTICE CATEGORY
Organisational functioning
and development
Advocacy
Direct services
CODE
OFD
ADV
DS
EXAMPLES
• Existence of vision and mission statement
• Existence of concrete objectives and activities
• Development of second-line leadership
• Fundraising strategies and sustainability plans
• Regular monthly meeting
• Involvement of HIV negative persons in Network
• Involving local professionals/influencers in advocacy/
advisory capacity
• Mechanisms to ensure cooperation and resolve conflict
among individual members
• Sound documentation procedures
• Advocacy with
• Family of Infected
• Communities (infected Groups)
• Communities, (At-risk Groups)
• Communities (General Populations)
• Healthcare providers
• Law enforcement
• District administration
• Educational institutions
• Insurance agencies
• Pharmaceutical companies
• Youth clubs/Fan clubs
• Elected people’s representatives
• Media
• Accompaniment to service provider (e.g. to ART clinic)
• Facilitating support groups
• Peer counselling
• Home visits
• Supply of food and/or nutrient supplements
• Delivery of medication
• IGP and micro-credit
• Training of caregivers
• Demand-generation for counselling and testing centres
• Positive prevention
• Services for infected and affected children
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GOOD PRACTICE CATEGORY
Linkages and referrals
Greater involvement and/or
employment of PLHA
Miscellaneous
CODE
LAR
GIPA
MISC
EXAMPLES
• Resource mapping and directory development
• Medical services (STI, TB, ART, OI)
• Psychosocial care and support services (Counselling
centres, psychiatrists, suicide-hotlines, etc.)
• Educational institutions
• Employment generation schemes
• Sources of nutritional support, food schemes
• Resources for orphans and vulnerable children (OVC)
• Short stay homes for adults
• Financial institutions (e.g. banks) for availing credit/
loans
• Humanitarian organisations
• Academic/research based individuals and institutions
• Youth clubs/Fan clubs
• In Regional/National Positive Networks
• In District AIDS Advisory Committee
• In Counselling and Testing Centres (PPTCT/ICTC/VCTC)
• In NGOs (HIV/AIDS Prevention and care & support
projects)
• In other developmental work such as Tsunami relief, etc.
• Arranging marriages among positive people
• Institutionalisation of advocacy through positive speakers
bureau
State-wise
The figures below summarise the good practices in various categories by state.
Note that the total numbers will be greater than the number of good practices,
because each good practice may fit one or more of the above categories: e.g.
a good practice may fall under Advocacy, Direct Services, and Linkages and
Referrals. At the analysis stage, some cross-agency good practices were identified,
i.e. those that involved collaboration among two or more networks.
Figure 2: Categorisation of Good Practices in Andhra Pradesh DLNs
Andhra Pradesh District Level Network – Categorisation of Good Practices
East Godavari (EGD)
5
Guntur (GUN)
Kadapa (KDP)
Prakasam (PRK)
4
Rangareddy (RRD)
Vishakhapatnam (VSK)
West Godavari (WGD)
3
2
1
0
OFD
ADV
DS
LAR
Categories of Good Practices
GIPA
MISC
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Figure 3: Categorisation of Good Practices in Karnataka DLNs
Karnataka District Level Networks – Categorisation of Good Practices
6
Belgaum (BGM)
5
Hubli (HUB)
Bellary (BEL)
4
3
2
1
0
OFD
ADV
DS
LAR
GIPA
Categories of Good Practices
MISC
Figure 4: Categorisation of Good Practices in Maharashtra DLNs
Maharashtra District Level Networks – Categorisation of Good Practices
25
Satara (SAT)
20
Aurangabad (AUR)
Thane (THN)
Kolhapur (KOL)
15
Pune (PUN)
10
5
0
OFD
ADV
DS
LAR
GIPA
Categories of Good Practices
MISC
Figure 5: Categorisation of Good Practices in Manipur DLNs
Manipur District Level Networks – Categorisation of Good Practices
5
4
East Imphal (EIM)
Churachandpur (CCP)
3
2
1
0
OFD
ADV
DS
LAR
GIPA
Categories of Good Practices
MISC
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Figure 6: Categorisation of Good Practices in Tamil Nadu DLNs
Tamil Nadu District Level Networks – Categorisation of Good Practices
5
Kanchipuram (KNP)
Madurai (MDR)
4
Theni (THE)
Tanjore (TNJ)
Trichy (TRY)
3
Thoothukudi (TTD)
2
1
0
OFD
ADV
DS
LAR
GIPA
MISC
Categories of Good Practices
Figure 7: Categorisation of Good Practices in Tamil Nadu TCCs
Treatment Counselling Centres - Categorisation of Good Practices
4
3
2
1
0
OFD
Kanchipuram (KNP)
Madurai (MDR)
ADV
DS
LAR
Categories of Good Practices
GIPA
MISC
5.2 Organisational Functioning and Development (OFD)
Good practices in this area may include such practices as sound institutional
charter, with concrete objectives and activities, plans for sustainability,
development of second-line leadership, innovative strategies to involve members
outside of the PLHA community in DLN structure, and good documentation of
organisational systems.
Good practices in OFD were identified and explored among DLNs in Andhra
Pradesh, Karnataka, Maharashtra and Manipur. Selected case studies are
described below:
OFD Case Study 1: Good documentation in Imphal East, Manipur
In brief: Imphal East Network of Positive People (IENP+) has institutionalised
good documentation practices in programmatic and administration areas.
Description: The ACT project provided both financial resources and
capacity building towards developing systems for documentation practices.
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IENP+ is one of the networks that has been able to utilise these inputs
for formalising register-based and computerised documentation systems.
Some of the documents that existed prior to inception of the ACT project
included registers for membership, meeting minutes, stock, cash and
ledger, and visitor records. The support group meeting register was one of
the important documents that was developed after ACT was launched.
Since initiation of the ACT project, IENP+ has begun maintaining several
documents, including records of correspondence, leave, forms and registers
for self-help groups, network membership, beneficiaries, counselling,
advocacy and referral.
In an interview, the network General Secretary described the rationale for
good documentation thus: “We are maintaining the registers because it
is the proof of what we are doing in the network. We need to show the
activities to any person who comes to the network. It is a must to maintain
documentation for each organisation. With the ACT project we are able to
maintain documents in a good and proper way. We have maintained separate
files for each activity: leave file, outgoing and incoming mail, notice file,
circular file etc. Earlier, for peer treatment educators (PTEs), we did not
have any format to report their monthly activities. So we developed field
monitoring visit format for the PTEs, which can also be used by other staff,
such as outreach workers and others.”
Speaking of the advantages of documentation, he added “Many people
cannot remember all what they have done in the past month or year. That
thing can be found out from our documentation. What activities we conducted
in the past, we recollect the information from the documents. With the help
of these documents new staff can understand the process, past activities of
the network, etc.”
Lessons learned: Capacity-building from mother NGOs or donor agencies
can help positive networks and other community based organisations
strengthen their systems.
5.3 Advocacy (ADV)
Advocacy to reduce stigma and discrimination, secure rights and mobilise
resources, constitutes one of the key activities of all DLNs. Targets of advocacy
are varied, and include families of PLHA, members of at-risk groups, the general
population, professions such as healthcare, law-enforcement, education,
government administration, insurance agencies, pharmaceutical companies,
elected people’s representatives, charitable organisations and fan clubs, to
mention a few. Good practices in advocacy were initially identified among DLNs
in all states, and were explored in all states but Manipur based on availability
of all three levels of evidence. Selected case studies are given below.
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ADV Case Study 1: Village level advocacy meetings in Guntur district, Andhra
Pradesh
In brief: Advocacy and sensitisation meetings organised by the DLN in
villages throughout the district, have demonstrated success in reducing
stigma from residents towards PLHA, securing support from local elected
body members for the cause of PLHA, and identifying new PLHA who are
then facilitated to access care services.
Description: DLN-Guntur organises village level meetings covering the
entire district. These initiatives have brought in increased awareness
among general population, hike in the disclosure and enrolment levels of
new PLHA. In most of the covered villages, as an impact of this initiative,
reported instances of stigma and discrimination cases have been reduced.
Initially the DLN struggled to organise these form of meetings in the
villages, as no one moved forward in listening to them. Later, after realising
that unless myths and misconceptions of the community leaders related to
HIV/AIDS are cleared, directly organising the village level meetings would
not be effective. Though the entire process of sensitising the community
leaders took a long time, it facilitated access and communication with the
general public at later stages.
Facilitator: A counsellor working in the DLN observed that rapport building
with the village level leaders at the onset is very much essential. Such rapport
would help them in accessing the general community and motivating them to
listen to them. She also shared that the impact of such meetings had been
very high as more and more people are voluntarily coming forward to undergo
HIV testing and counselling. This has helped and made easy for the DLN in
identifying new PLHA. Holding village awareness sessions at different levels
are very much important for community members, she added.
A beneficiary living with HIV/AIDS in one of the target villages added
that he had personally benefited from the advocacy meetings, both directly
through contact with the network and its services, and indirectly through
the reduction in misconceptions and thereby stigma in the village towards
people like himself.
Lessons learned: As decentralisation of care and treatment proceeds in
India, it is imperative to reach villages with advocacy events aimed at
mobilising local support for the cause of PLHA from a broad spectrum of
local constituents.
ADV Case Study 2: Advocacy with Sangli ART Centre for increased services to
PLHA, Maharashtra
In brief: The district level networks at Satara, Sangli and Kolhapur
collaboratively advocated with Sangli ART Centre to make ART services
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available six days a week so that people from adjoining districts could avail
these services, which had formerly been available for only one day a week.
Description: The Sangli ART Centre is the only public treatment facility for
PLHA from Sangli and neighbouring districts such as Satara and Kolhapur. It
was earlier only functional for one day a week, during the morning hours of 9
am – 1 pm. Owing to the limited hours, PLHA who went to the ART Centre at
Sangli had to return on successive weeks to get various tests done. This was
causing tremendous inconvenience to PLHA, including about 140 from Satara
district. To address this problem, the Satara DLN contacted its counterparts
in Kolhapur and Sangli, and learned that the problem was impacting PLHA
from all three districts. The three networks then joined forces with other local
NGOs in Sangli and organised a campaign “Doctor aamla jagayacha ahain”
meaning “Doctors we want to live too”. The primary demand of the campaign
and associated rally was to get the ART Centre to be functional six days a
week. This campaign received wide media coverage at local and state levels.
As a consequence, the Maharashtra State AIDS Control Society intervened and
directed the ART Centre to start functioning six days a week, with effect from
June 2006. Additional outcomes of the campaign and associated advocacy
activities were that a monthly meeting of doctors of ART Centre, district
level networks and other NGOs is held every second Tuesday of the month,
where any problem or issues regarding PLHA is addressed. Volunteers of NSP+
(Satara), NKP+ (Kolhapur) and Sangli network assist patients at the ART
Centre with follow-up and referrals.
A beneficiary, Mr. S. B is a 46 year-old man in Satara, and the sole breadwinner
of his family, consisting of a wife and three children. When he was diagnosed
he came into contact with the positive network NSP+, which referred him to
Sangli ART Centre and got his ART regimen started. His economic condition
was also not good, earlier he had to come three to four times a month for
various services such as CD4 count, sonography, and other tests. The ART Centre
was around 95 km from his house and going there every time was expensive.
Following the advocacy intervention of the positive networks, he reported that
the condition at the ART Centre had improved. As the ART Centre has become
functional six days a week he could adjust his time and go there. He began
volunteering for NSP+ and assisted in follow-up of other PLHA.
Lessons learned: Advocacy is often effective when agencies with similar
demands work in coalition with one another. Visible campaigns and media
coverage can assist advocacy efforts.
ADV Case Study 3: Ensuring access to ART through railway concessions in
West Godavari, Andhra Pradesh
In brief: Association of Positive People Living with Excellence (APPLE), the
positive network of West Godavari district, Andhra Pradesh, has advocated
successfully with the Indian Railways to provide travel concessions for
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PLHA. As a result, PLHA who were unable to afford to travel monthly to the
ART Centres, now have the opportunity to do so.
Description: In interviews with the President and General Secretary of APPLE,
it was learned that one of the main reasons that many PLHA living in poverty
are unable to continue their ART regimen, despite the free availability of
medicines, is that they are unable to afford the cost of monthly travel from
their homes to the ART Centre. One of the members of the network, who
used to seek treatment from the Tambaram ART Centre, learned of the travel
concession schemes available through the Railways in Tamil Nadu. Upon
approaching the local (West Godavari district in Andhra Pradesh) Railway
officials with a request to offer similar facilities, he was initially turned
away. His persistence was eventually rewarded with one of the railway staff
members suggesting that he get a disability certificate from a government
hospital physician. He subsequently approached the Superintendent of
Osmania General Hospital Dr. Bala Raju, and explained the issue.
The physician issued him a certificate stating that he was HIV positive and
may be eligible to receive travel concessions. The network then took up
the case and assisted the PLHA in further advocacy visits with the railway
officials. Four to five months after the initial intervention, the railway
offices finally sanctioned railway concessions to the applicant. At the time
of interviewing (17–18 August, 2006), only one individual had benefited
from the concession: another network staff member had applied for the
concession and was awaiting the response.
The beneficiary conveyed to the field team that he was contented at the
positive outcome after a long struggle.
The APPLE network has also initiated a ‘self fund’ through which PLHA
who were in dire need of funds could have their travel subsidised by their
economically stronger PLHA peers.
Lessons learned: Persistent advocacy by PLHA networks and individuals
can yield such benefits as railway concessions. This issue, may, however,
be taken up for advocacy at a large (state-wide, country-wide) scale by
positive networks and their allies, to secure railway concessions for all
PLHA who may need them.
5.4 Direct Services (DS)
District Level Networks in all states studied have distinguished themselves
through provision of a wide range of direct services, such as accompanying
PLHA on clinical visits, facilitating support groups at their premises or within
healthcare facilities at district/sub-district levels, assisting with income-
generation programmes, training of caregivers for home-based care, positive
prevention services, and services for children infected or affected with HIV.
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Good practices in direct services illustrate the principles of greater and
meaningful involvement of PLHA (GIPA and MIPA), and also establish
the credentials of DLNs and TCCs as service providers. Through direct
services, the PLHA groups are able to leverage more support and respect
from diverse stakeholders involved in care and support from government
and civil society sectors.
Good practices in DS are illustrated through the following case studies:
DS Case Study 1: Support group meetings in three DLNs of Andhra Pradesh
In brief: Three District Level Networks (East Godavari, Prakasam and
Rangareddy) have been successfully holding support group meetings at
different levels regularly. The support group meetings have helped create a
common platform to disseminate information, mutually share problems and
experiences of the PLHA and address common issues.
Description: Support group meetings have helped in enhancing enrolment
rates across all the DLNs. In DLN, East Godavari, the support group meetings
among ante- and post-natal women have additionally been significant as a
number of women are opting for institutional deliveries now.
Beneficiary 1: Mrs. N, a post-natal mother living with HIV attended a
support group meeting organised in her village, Recharlapet in an anganwadi
centre. She has two daughters; the first one whom she delivered at home is
mentally retarded. After her first delivery, an outreach worker of the DLN,
East Godavari approached and invited her to the support group meeting
that was organised at the anganwadi centre regularly. She has attended the
meetings couple of times and they had been an eye opener for her every
time. According to her, she has learned many useful aspects and benefited
through an institution based delivery. She had her second delivery with a
healthy child. After her own experience, she has been encouraging every
married and expectant woman in her locality to visit primary health centres
and prefer for institutional deliveries.
Beneficiary 2: Mrs. M was motivated by the outreach worker at a support
group meeting to learn about safe pregnancy and delivery. She learned
about institutional deliveries, HIV-testing, low cost nutritional food such
as taking leafy vegetables, fruits, high-iron content food and medication.
Since then she is visiting nearby PHC centres regularly.
SGM Supporter: Mrs. S is an anganwadi worker of a village. She described
their activities through the Anganwadi Centre for ante and post-natal care
to the women. The centre provides information on low cost supplementary
diet, distributes iron and folic tablets to the expectant mothers, publicises
the benefits of breast feeding, immunisation etc. Often the centre organises
exhibitions on nutritional food where preparation of low cost nutritional
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diet is demonstrated. Recently the anganwadi centre organised a breast
feeding campaign. She also noted that the centre organises awareness
sessions on sexual and reproductive health for adolescent girls, wherein the
DLN Outreach Worker provides information on HIV/AIDS. They recommend
all ante & post-natal cases to visit Government General Hospital for blood
test and medications. She instructs women to take medicines only after due
prescription from doctors.
Beneficiary 3: Mr. N, a PLHA and an auto rickshaw driver, while on one of
his visits to the ARV Centre of the Osmania General Hospital, learned of the
DLN and its activities including the support group meetings. He recollects
that the DLN Officer counselled and motivated him to attend support group
meetings. He then became a member of the DLN, and started attending the
support group meetings regularly, where he was able to exchange views
and share concerns with fellow PLHA. Mr. N is a beneficiary of a variety
of services from the support group, such as positive counselling, family
counselling, positive living training and information on HIV prevention and
care etc. He perceives the DLN as a forum that takes care of its community
to alleviate emotional stress, provides information on different service
delivery points including the care and support services.
Lessons learned: This case study personifies the good practice of forming
and developing support groups that function to disseminate information,
exchange personal experiences including setbacks and successes.
DS Case Study 2: Support group meetings in Kovilpatti Government General
Hospital, Thoothukudi, Tamil Nadu (also illustrative of GIPA)
In brief: Support group meetings in Kovilpatti Government General Hospital
assist PLHA by offering a safe and accessible space where they are free of
stigma and are able to meet discreetly. Additionally, the hospital venue
offers PLHA the benefit of interaction with doctors and paramedical staff.
Description: According to the DLN president, the main criteria for conducting
support group meetings (SGM) at Kovilpatti Government General hospital was
the convenience and comfort level of the PLHA. Initially, the meetings were
being conducted in the Thoothukudi town. Then the DLN realised PLHA were
attending the SGM from Kovilpatti and the neighbouring taluks. Since the
distance is about 60 km between Kovilpatti and Thoothukudi they had to
incur huge travel expenses. To avoid this travel expense, the DLN decided to
have SGM at Kovilpatti. Later, through the counsellor’s field visit, they came
to know from the PLHA that they are not comfortable if SGMs take place in
their own villages due to overt stigmatisation.
Then, the DLN Officer after discussing with the counsellors at GH contacted
a health department official who in turn advocated with the Superintendent
of Kovilpatti GH to provide space for monthly SGM in the hospital.
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The ICTC counsellors and the DLN staff worked together to prepare the
agenda for the meeting and invited doctors from other departments to
participate in the meeting and clarify doubts PLHA may have with regard to
treatment. They also indicated that due to this activity treatment adherence
is being followed up effectively. Till date four SGMs have been conducted at
Kovilpatti GH.
The GH counsellor, technician and DLN staff report the following benefits
of conducting SGM in the hospital premises:
SGM in a hospital setting helps PLHA to collect their medicines without
fail
Medical officers from all departments participate in the SGM.
PLHA feel that they are not stigmatised and discriminated.
SGM gives a hope for the PLHA that the government is there to provide
care and support for them.
Beneficiary 1: Wife of Mr. G who died of HIV, was motivated by the DLN
to undergo testing, when she contacted the DLN following her husband’s
demise. She tested positive but her children were negative. She started
attending SGM at Kovilpatti GH, and came to know more people who were
affected. The SGM created confidence within her and helped her to talk
more effectively about HIV/AIDS with her relatives. She was even able
to persuade her mother to attend the SGM. At present she works as a
volunteer for the DLN.
Lessons learned: Despite space constraints at the hospital, the practice of
conducting SGM in the hospital premises has been successful at multiple
levels. The roles of multiple stakeholders such as TANSACS Consultant,
Hospital Superintendent, Counsellors and the PLHA have enabled this
practice to be implemented.
DS Case Study 3: Nutrient supplements provided at support group meetings
in Kolhapur, Maharashtra
In brief: NKP+, the Network of Kolhapur for People Living with HIV/AIDS,
provides free nutritional supplements to participants of the support group
meetings (SGM). In addition to the nutritional benefit, this practice also
draws large numbers of people to the meetings.
Description: The impetus for this practice came during a support group meeting
when some members requested the network to provide better refreshments
during the meetings instead of providing only tea and biscuits. The DLN
consulted with PFI state office regarding this, and from December 2005, the
network started providing nutritional supplements to SGM participants. The
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nutritional supplements include seasonal fruits, dry fruits, cereals, pulses and
vegetables (such as tomatoes). These items are purchased by the DLN in bulk
and then distributed as small packets among all the participants, including
the caregivers and others who accompany the PLHA to the meetings. Some
of the participants carry the food packets back home, while others consume
the food at the venue, especially if seasonal fruits are given.
During the focus group discussion, DLN staff noted that nearly 40% of
the DLN members did not have proper knowledge about nutritious foods.
According to them, this distribution of nutritional supplements at the SGM
helped to teach the participants about various types of nutritious food
items, and their role in maintaining good health.
The network spends the entire budgetary allocation for each SGM, which
is about Rs. 1200 –1500, towards nutritional supplements, which are
purchased in bulk to avail discounts.
Beneficiaries: M, A and S shared their opinions of this practice in a focus
group discussion. M, a male commercial sex worker aged 24; A, a married
man aged 28; and S, a 26 years old female commercial sex worker and
mother of a four years old child, all expressed satisfaction with the SGM
concept as implemented by NKP+. They found the nutritional supplements
they received – mainly jaggery, groundnuts, and dates – as well as the
educational sessions on yoga, diet, and adherence to be very useful. Above
all, they appreciated the fact that all these benefits were available to them
in a safe non-judgmental place.
Four other beneficiaries expressed similar sentiments in individual in-depth
interviews.
Sustainability plans: The DLN plans to raise donations towards continuing
the nutrition supply, and has obtained commitments from private donors
towards this. Additionally the DLN has also approached the Merchant
Association at Kolhapur so as to get bulk donations of food items such as
pulses, wheat and rice. The proposed plan involves the Merchant Association
rotating the responsibility for such donations among its member-traders,
so that a particular merchant has to give his contribution may be only once
a year.
Lessons learned: Distribution of nutritional supplements during SGMs is
an innovative practice that serves multiple purposes such as (a) enhancing
nutritional status of PLHA, (b) increasing their knowledge and awareness of
the importance of diet and nutrition in health, and (c) providing motivation
to attend the meetings, during which other practices such as adherence to
medication can be inculcated.
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DS Case Study 4: Training in preparation and sales of nutrition powder by
network in Bellary, Karnataka
In brief: Nithya Jeevana, the network of Bellary district, Karnataka, has
trained a positive woman in preparation and sales of nutrition powder.
Besides benefiting the local PLHA community at large, this practice has
helped the woman get out of debt, and helped raise her self-confidence.
Description: Availability of adequate and affordable nutrition is a key need
for people living with HIV. In response to this need, the Bellary positive
network Nithya Jeevana trained M, a woman living with HIV to prepare
nutrition powder to augment the nutrition supply for PLHA. Through this
activity, the woman was able to get out of debt very quickly. Her powder is
getting such good word-of-mouth publicity that her neighbours and others
are asking for it and buying it. All this has greatly augmented her self-
esteem and self-confidence. The network is now exploring possibilities of
marketing the powder through mainstream outlets.
The beneficiary of this training, M, conveyed in an interview: “Nithya
Jeevana gave me training to make nutrition packets… I also had to get out
of debt…out of manual labour…I was also interested in doing this. Initially,
I used 1 kg of each ingredient…now the demand is more, so I am now using
5 kg of each…I manage my finances well on my own… I am out of debt now.
My original employees agreed to my working elsewhere to repay their loan,
now I have repaid all that and saved about 13,000 rupees. I have gained 5
kg weight. My children are also doing better”.
Another beneficiary, A, was receiving the nutrition powder for her child.
She said: “[My child] calls the nutrition powder ‘aapaa’. Whenever he wants
it he asks for it. He likes it very much. He has gone from 8 kg in weight to
11 kg now.”
In addition to providing income for the individuals involved in manufacturing
the packers, the practice also has psychological benefits in people feeling
better and seeing their children do better. Thus, this is a good practice that
helps both physical and psychological well-being of PLHA.
Lessons learned: The nutrition packet project is a very vital and cost-
effective method of providing the nutritional support that PLHA need to
improve their health. It could easily be scaled up within and across district
level positive networks.
DS Case Study 5: Meditation and cultural activities promote psychological
well-being among PLHA in Belgaum, Karnataka
In brief: Spandana, the positive network in Belgaum district of Karnataka,
involves its members in meditation camps and cultural activities such as
talent shows, music, dance and art, as part of its holistic approach to care
and support.
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Description: Staff of Spandana shared in a focus group discussion that they
had encountered high levels of depression amongst PLHA. They observed
that information on HIV management, diet, and ART – all serious topics
– were not serving to retain interest of PLHA in support group meetings,
and there was a consequent drop out of participants at these meetings.
This motivated the network to conduct cultural activities (art, music,
dance) during the meetings. These were well received and cause a
resurgence of interest in attending the meetings. Art therapy workshops
were conducted for children as well.
“People are dealing with a lot of stresses. If they get only serious information
at the SGM also they will soon become tired [of it]. They also need to have
some enjoyment. This makes them feel a little lighter. It helps them receive
the serious information. It also helps them understand that there is hope, that
they should be happy and have fun.” – beneficiary, also staff member.
Spandana also conducted a three-day meditation camp, following the Osho
method. V, a private donor who sponsored the camp, shared his thoughts
thus: “The meditation camp helped boost morale and confidence. I plan to
hold one every year from now on. In a group, tensions will go away. Once
tension is gone, [the feeling sets in that] we are among others like us…
Meditation technique is Osho’s method. It helps in people getting better
balance (centering). Frustration is reduced.”
Lessons learned: Meditation camps and cultural activities are part
of holistic approach taken by Spandana in rendering services to PLHA.
Collectively, these activities benefit members in terms of stress-reduction
and relaxation. This is seen by the network as important not just for itself,
but also as a necessary pre-condition for other care services the network
provides to PLHA.
DS Case Study 6: Combining medical camps with support group meetings
increases access to care and treatment in Bellary, Karnataka
In brief: Nithya Jeevana, the positive network at Bellary, has evolved
the practice of combining medical camps with support group meetings
(SGMs) at the taluk level. These have increased uptake of network services
by PLHA.
Description: Focus group discussions with Nithya Jeevana staff revealed
that travel costs were an impediment for PLHA in remote parts of the
district to seek medical services and attend support group meetings. In
collaboration with World Vision, a faith-based organisation operating in
the district, Nithya Jeevana decided to decentralise the support group
meetings from the district headquarters to the taluk level, and combine
them with medical camps.
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At the SGMs, medicines for opportunistic infections, information and
help for getting ART, follow-up for those on ART, counselling people to
get tested for HIV, and referral help for medical care are provided. Also
provided are support and advice on income generation programmes,
family/social support, and combating stigma and discrimination. A
government doctor, supported by World Vision, assists in the medical
camp on a part-time basis.
Travel to these meetings is subsidised, and food expenses met. More women,
especially widows, than men attend these meetings. This practice started
off with 40 members in January 2005. New members come via referrals from
the local Voluntary Counselling and Testing Centres. Over 60% of attendees
are in the 18–30 age group, about 40% are over 30 years old. Each month,
40–50 members join in the district as a whole. The taluk-wise break up of
the members attending as of July 2006 was: Hospet: 80+, Siriguppa: 60+,
Kudligi: 50+ (with drop-in centre of WV) and Bellary: 150+. World Vision
and the Freedom Foundation are among the organisations helping with in-
kind donations and subsidies.
In an interview with the network president, he said: “Initially, we had
about 25-30 people. They used to get medicines with the support from World
Vision… As the numbers increased, we thought if we could buy medicines
wholesale, we could save some money and buy more medicines for a larger
number of people… It was also difficult for us to conduct one large meeting
for the whole district. It is difficult for the people also. So, we decided to
conduct the meetings in the taluks. Then we consulted a doctor and asked
him if he would come to taluks and conduct medical camps. He agreed.”
A beneficiary, who found out that she was HIV positive when she had
gone to Freedom Foundation to get tested for tuberculosis, was referred
to Nithya Jeevana by a peer educator. She said: “I attended the SGM in
Siriguppa… There I saw that I am not the only one. There are so many
people like me. Moreover, the [World Vision] coordinator offered me a job…
as field worker.”
Lessons learned: The many kinds of interventions provided through these
combined SGM-medical camps augment both mental and physical (health)
components of quality of life for the PLHA. In addition, they also build
solidarity and strengthen what Nithya Jeevana president calls aatma-
dhairya – self-confidence.
DS Case Study 7: Village level mapping identifies care and support resources
for PLHA in Madurai, Tamil Nadu
In brief: The Madurai District HIV Positive People Welfare Society (MDPS+)
has initiated village level surveys to map resources for PLHA, and this has
also enabled rapport-building with the concerned agencies and individuals.
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Description: MDPS+ initiated the village level surveys with the objective
of collecting information on treatment resources such as hospitals and
laboratories, and developing linkages with these institutions to facilitate
referrals. After initiating the survey, the staff reported that they were
getting almost five to ten new cases every month referred by the agencies
that they had mapped. The mapping exercise helped the staff members
carry out some sensitisation with such stakeholders as doctors, NGOs, self-
help groups, police, and panchayat leaders.
One of the key informants, M, worked as a peer educator in the network,
and was part of the team conducting the village level surveys. She reported
that as part of the mapping exercise they try to get appointments to meet
the key contact persons, describe the network and its functions, and give
them their contact details. In the meeting itself the staff disclose their
positive status. Through this survey almost 17 of the agencies mapped
have referred PLHA to the network till now. At the time of interviews, a
resource directory was under development.
Lessons learned: Resource-mapping, a direct service of networks to their
community, is an important strategy that can promote referrals from and to
agencies.
DS Case Study 8: Coding bottles with symbols helps PLHA remember their
medicine dosage and timing, in Kolhapur, Maharashtra
In brief: The Network of Kolhapur for People Living with HIV/AIDS (NKP+)
enables PLHA who are illiterate or semi-literate to recognise their drug
dosage timings through a system of coding medicine bottles.
Description: Many of the network members are either illiterate or semi-
literate. Consequently, when medicines are given to PLHA by the ART Centre,
the clients are often unable to clearly understand written instructions
regarding dosage and timing.
The network has assisted its members by devising a system of symbols to
mark the medicine bottles. A single mark on a medicine bottle indicates
that it has to be taken once a day. Two marks or symbols on the medicine
bottle indicate that the medicine has to be taken twice a day (once in the
morning and once in the evening). Similarly three marks on the bottle
indicate that the medicine has to be taken thrice a day.
Three beneficiaries stated in their interviews that the system helped them
immensely. Two of the three were married couples, both on ART. The husband
and wife spoke highly of the patient literacy provided by NKP+, which included
information on ART side effects and how to cope with them, and a telephone
number to contact in case of emergencies. According to them, the symbols
were a boon for people who lacked a formal education, such as themselves.
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Lessons learned: The system of marking bottles, though a simple innovation,
can greatly enhance client-friendliness of ART provision. This good practice
is worthy of immediate replication in other centres.
DS Case Study 9: Volunteering for Family Health Awareness campaign
strengthened linkages with primary health centre in Kanchipuram, Tamil Nadu
In brief: In the year 2005, the Kanchipuram Network of People living
with HIV/AIDS (KNP+) volunteered with the Family Health Awareness
Campaign (FHAC). This helped them mobilise clients for the health camps,
and strengthened linkages with the Saathanur Primary Health Centre.
Description: The Family Health Awareness Campaign, launched in 1999
by the National AIDS Control Organisation (NACO), is an effort to address
reproductive health issues in the community, especially in rural areas. It aims
to improve early detection and treatment of Reproductive Tract Infections
(RTI) and Sexually Transmitted Infections (STI) through community
involvement (Acharya et al. 2006). Health camps are the strategy through
which community members are mobilised for STI/RTI treatment.
In 2005, two KNP+ members voluntarily assisted healthcare providers at
Saathanur Primary Health Centre (PHC) in recruiting clients for a 15-day
camp for RTI treatment. According to PHC physician Dr. Arun Prasad, the
familiarity of the volunteers with STI/RTI syndromes, and their willingness
to discuss sexual histories, helped them in identifying cases and recruiting
clients to the camp.
The volunteers for KNP+ shared their contact information with the PHC. At
the time of the interview, the physician reported having referred six cases
to the network.
Lessons learned: Involvement in the FHAC, besides constituting a direct
service to clients, helped in building bridges between a Government Primary
Health Centre (PHC) and the network.
5.5 Linkages and Referrals (LAR)
The continuum of care for PLHA involves services and activities that extend far
beyond clinical care and treatment. The role of PLHA groups, whether DLNs or
TCCs, is critical in facilitating access of community members to the range of
care-continuum services through referrals and linkages.
Good practices in LAR include, but are not limited to, producing directories of
services and resources, referring PLHA to clinical and psychosocial care providers,
forging linkages with educational, financial institutions and employment
generation schemes (often with advocacy as a critical pre-requisite), services for
orphans and vulnerable children, and links with providers of other services.
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Instances of good practices in LAR are to be found in all states where DLNs and
TCCs were visited. Few practices are described below:
LAR Case Study 1: Linkages for widow pension and income generation in
Guntur, Prakasam and Vishakhapatnam, Andhra Pradesh
In brief: District Level Networks in the above districts have developed good
linkages with the government bodies like DRDA and Scheduled Caste/Backward
Caste (SC/BC) Corporations that helped in accessing grants for initiating income
generation ventures and pensions for widows living with HIV/AIDS.
Description: These linkages grew in response to the acute felt needs for
financial support to widows living with HIV/AIDS, many of whom were
younger than the lower age limit for eligibility to the widow pension scheme.
Through rapport and linkages built between the DLN and government bodies
such as the DRDA and SC/BC Corporation, monetary relief and disbursements
have been made available to families affected by HIV. Women living with
and widowed by HIV/AIDS have been receiving pensions and have been
able to mobilise grants to send their children to regular schools and obtain
low cost nutritional food. Grant assistance to initiate income generation
programmes for the widow PLHA have also been significant in securing the
lives of their children.
Specific instances: In Guntur, in 2005, seven widow PLHA received grant
assistance from Scheduled Caste Corporation of Rs. 10, 000/- to initiate
viable income generation ventures. Similarly in 2006, around 20 widow
PLHA were sanctioned grants worth Rs. 2,000 and a monthly pension of Rs.
200/- each from District Rural Development Agency (DRDA). Twenty women
have been sanctioned widow pensions in Vishakhapatnam as of year 2006,
and one woman in Prakasam has been able to avail of the scheme.
Beneficiary 1 is a PLHA widow with two children who benefited from
interventions by the DLN staff with the Mandal Development Officer (MDO),
who is the concerned official sanctioning grants to the widow PLHA. On
World Women’s day in 2006, the department issued Rs. 2000 /- initially as
a seed grant and Rs. 200/- towards monthly widow pension. The grant of
Rs. 2000 was invested in setting up of a beauty parlour at her home and
procuring related cosmetics and equipment. Now, with part time engagement
with the beauty clinic, she is able to earn some money to manage her family
including the children’s education. According to her, the widow pension
schemes have been helpful for the widow PLHA to establish similar self-
employment ventures ensuring them to sustain a self-dependent life. It has
been an opportunity wherein every woman even without an educational
background can earn livelihood and sustain her family.
Facilitator: Mr. Kaleb, Former Project Director, Joint UN CHARCA (Coordinated
HIV-AIDS Response through Capacity Building and Awareness) Project,
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mentioned that the project had been working in close relationship with
the DLN in Guntur. CHARCA project assisted the network in approaching
Government agencies including banks for accessing grants/loans for the
PLHA. CHARCA also facilitated the DLN in holding an advocacy event
with the State Level Bankers Committee to access loans/grants, District
Officials for old age pensions, DRDA for grants. Mr. Kaleb recommends
that district networks approach the District Collectors at the outset, to
familiarise them with PLHA issues and set the foundation for linkages
with the government system.
Lessons learned: This case study illustrates the benefits of linkages
(following prior advocacy) with government bodies like the DRDA, Scheduled
Caste/ Backward Class Corporations etc. for financial assistance to widow
PLHA and families affected by HIV.
LAR Case Study 2: Resource mobilisation through linkages in Guntur, Andhra
Pradesh
In brief: The Guntur DLN has been successful in mobilising monetary and
in-kind support for PLHA living in poverty through linkages with private
individuals and non-governmental organisations in the area.
Description: During a focus group discussion with DLN office bearers, a
respondent shared that in most counselling sessions, the clients who were
from poor socio-economic background requested the network to fulfill their
acute financial needs, and to provide educational and nutritional support
to their children. This overwhelming demand was raised at the DLN board
meeting and consensus reached on the need to develop strategic linkages
for resource mobilisation.
Mobilisation of local resources was not a new attempt as far as the DLN effort is
concerned. Even at the inaugural ceremony of the DLN on August 29th 2004,
Mr. Roshan Kumar, director of a local NGO named SEEDS suggested
they mobilise funds for infrastructure strengthening by approaching
philanthropists in the district. Mr. Roshan Kumar initiated the activity,
agreeing to donate two fans and two chairs instantly. As days went by,
the DLN members leveraged different resources for its infrastructure
development and mobilised support to the PLHA members from diverse
sources. To indicate a few, AMG India International, an NGO with varied
activities in and around Andhra Pradesh contributed educational and
nutritional support to 125 children of PLHA. M, a neighbour of DLN office
and a philanthropist donated Rs. 10,000/- and also agreed to provide a
piece of land in the near future to the DLN to construct a shelter home for
the PLHA. Ramesh Babu, the DLN President, expressed the view that the
practice of mobilising local resources is a continuous process and the DLN
is expecting to target and mobilise more resources either in cash or kind.
The next attempt will be to develop its own building rendering care and
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support to all PLHA requiring shelter, psychological support and treatment
under one roof.
Beneficiary: An elderly woman narrated the situation of her five-year old
HIV positive grandchild who lost both of his parents to AIDS around a
year back. A few months after the mother’s death, the DLN approached the
grandmother seeking details of the child such as the birth certificate and
HIV status report. For the last five months, the child has been receiving
educational and nutritional support through the DLN that were mobilised
from different individuals and agencies. Additionally, a monthly educational
support of Rs. 250/- is being provided by the DLN. While concerned about the
future of the child after her eventual demise, the grandmother is confident
of the DLN’s support to her grandchild continuing into the future.
Supporter: M, a neighbour of the DLN office, shared that he initially used to
observe the activities of the DLN and kept enquiring about its commitments
and activities. Learning of his goodwill, the DLN office bearers approached
him for support to poor PLHA. After an initial donation of Rs. 5000/-,
he felt so motivated that he continued his philanthropy. At the time of
the interview, he was planning to request other well-off neighbours and
relatives to come forward and help the PLHA.
Lessons learned: Linkages with well-wishers and NGOs are key to
sustainability of support to PLHA living with HIV. They also help to expand
the support base and reduce reliance on external sources (e.g. grants from
donor agencies).
LAR Case Study 3: Mobilisation of medicines through linkages in Kadapa,
Andhra Pradesh (also DS)
In brief: Through linkages with NGOs, private doctors, medical
representatives and stockists, the DLN Vimuthi Positive People’s Network
(VPPN+) in Kadapa district has been able to mobilise drugs for treatment
of opportunistic and sexually transmitted infections. These benefit those
PLHA who are hesitant to procure medications from government healthcare
facilities for fear of being stigmatised.
Description: Medical care is the prerequisite for all the PLHA. DLN feels
that meager counselling services are not adequate particularly for the poor
PLHA who had always been on request for medicines. The DLN hardly had
any financial aid and projects during its initial period of establishment. In
2005, during the Kadapothsavamela fair, Mr. Rajendar, a Condom Stockist,
met Mr. Sameer, the President of VPPN+ and was moved by the services
provided to the PLHA. He introduced Mr. Sameer to Mr. Prasad, a field staff
from Population Services International who provided certain insights on
the options of mobilising medicines for the PLHA from various donors. He
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suggested developing and distributing brochures/pamphlets among hospitals,
clubs, associations and interested individuals in seeking donations.
Facilitators: Mr. Rajendar and Mr. Prasad introduced the DLN to different
donors including certain medical representatives and medical agencies that
provided general medicines including for STIs. Private doctors issued free
samples of drugs for mouth ulcers. Medical representatives contributed
vitamin and antibiotics and government hospitals provided Oral Rehydration
Salts (ORS) to the DLN.
Facilitators-cum-beneficiaries: Four PLHA had advocated with the doctor
and nurses of the AASHA programme to contribute general medicines
giving assurance that, those will be used for poor PLHA. The mobilised
medicines were stored and distributed from the DLN office. According to
the interviewees, they face grave discrimination and stigma at the hospital
setting particularly from the healthcare providers and therefore had also
put forward a proposal before the DLN to provide a full time doctor and
supply of free medicines.
After providing medicines, there has been a significant increase in enrolment
rate of PLHA into the network.
DLN office bearers plan to visit and seek medicine contributions from the
general households. PLHA have been informing the general public on the
medicine support rendered by others and motivate them through awareness
sessions. PLHA have also been contributing medicines, which they have
collected from the AASHA programme. DLN is expecting to gain effective
outcome from this activity.
Lessons learned: In the words of VPPN+ president Mr. Sameer, “seeking
alternative and self-mobilisation initiatives for resources will ensure the
sustenance of any activity. Without the support from the general population,
PLHA cannot be mainstreamed”.
LAR Case Study 4: Facilitating linkages among PLHA in neighbouring
districts, the ART Centre and NGOs, in Churachandpur, Manipur
In brief: The Manipur Network of Positive People (MNP+) has assisted PLHA
in other districts facilitating CD4 testing and ART services in Churachandpur
by facilitating appropriate linkages.
Description: PFI state office, earlier this year (2006) had requested the
DLN to help clients from other districts as those districts do not have
proper CD4 testing facilities and ART services.
For the last two to three months (from the date of data collection) the
DLN has started helping clients from other districts as well. Till date the
DLN had referred about 44 clients (from other districts) to Churachandpur
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ART Centre, and there are more clients from other districts who have gone
directly to the ART Centre without first coming to the DLN.
Beneficiary: In an interview with a beneficiary from the adjoining Bishnupur
district, he said: I am a 36 years-old man from Bishnupur district. I live in
a nuclear family with my wife and two children. I was tested positive five
years ago. Due to the various health complications, I visited doctor and he
prescribed me medicine for ART. But in the Bishnupur district, there is no ART
Centre. So, I have to go either to Imphal or Churachandpur. Geographically,
Churachandpur is near to our home compared to Imphal. So, I visited ART
Centre Churachandpur and where I met the counsellor of the Churachandpur
DLN. She advised me to come and visit the DLN for more services and support.
With their help I got free ART from the centre. They also advised me to visit
the DLN every month when I come for my medicine. The DLN has also helped
me obtain medicines through [an NGO] Shalom.
Now, my health condition has somewhat improved. I can work in the field
for my children’s education. Earlier for my treatment, we had spent all our
resources and my children could not go to school.
Lessons learned: While decentralisation of care and support at the district
level is ideal, the pace of decentralisation may not be uniform across
districts. Hence DLNs can play an active role in supporting PLHA from
districts where services are not available.
LAR Case Study 5: Linkages and Referrals with counselling services in NGOs
and VCTC in Prakasam, Andhra Pradesh
In brief: Referrals among the DLN, VCTCs and key NGOs in the district provide
effective linkages to a variety of counselling services for people living and/or
affected by HIV, including couples counselling, child counselling and peer-
counselling.
Description: A Focus Group discussion with the DLN staff of Positive People
Network (PPN+) in Prakasam, revealed the process of building effective
linkages with local NGOs and VCTC Counsellors. In May 2005, the DLN engaged
in a resource mapping of the district to identify and prioritise different
service delivery points in the district for its member PLHA. The DLN initiated
rapport and networking with different NGOs. PASCA (Planned Action Service
Committee for Achievement), an NGO engaged with HIV/AIDS prevention
activities, played a vital role in strengthening the DLN services through
counselling the referred PLHA from the DLN.
The VCTC associated with the Government General Hospital referred PLHA
for enrolment to the DLN after testing and counselling services. In turn,
the DLN was able to refer their members to the VCTC for such couples’ and
child counselling.
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Facilitator: Mr. Veeraiah, the Project Manager of a local Ongole based NGO
PASCA briefed about his organisation and its HIV/AIDS related services
since the year 2000 for the vulnerable groups including the street and
migrant children, commercial sex workers and PLHA. The operational area
of PASCA is Tangutur and Ongole mandal of Prakasam district. He shared
that, in initial period, as part of organising a medical camp in Ongole,
the DLN approached PASCA to render support and involve in its referral
activities. The PASCA team extended the fullest possible support to the
DLN initiating a networking system with other NGOs too in the district.
PASCA and the DLN mutually coordinated referral services that brought in
effective service delivery to the PLHA. PASCA referred many PLHA to avail
services of the DLN at its drop-in-centres. In this way, the DLN and PASCA
succeeded in reaching hitherto unreached PLHA in the district.
Another NGO, Lakshmi Development Society also refers PLHA from commercial
sex workers background to the DLN for availing services like psychosocial
support and positive peer-counselling.
Lessons learned: Effective networks with the local NGOs and VCTC in
the district have improved the mutual referral systems wherein the PLHA
enrolment rate increased and follow up through service linkages have been
made effective.
LAR Case Study 6: Multiple networks in Tamil Nadu are linked with shelter
and educational institution for children infected and/or affected by
HIV/AIDS
In brief: Five district level networks. Thoothukudi (TTD), Tanjore (TNJ),
Trichy (TRY), Theni (THE), Madurai (MDR) have developed linkages with
a residential institution named “Reaching the Unreached” (RTU) at
Vethalagundu (Theni district) where children (infected and/or affected by
HIV/AIDS) are given care and educational support till their graduation.
Description: This good practice evolved out of an initiative by Mr. Pitchaimani
of Theni, who, in 2000–2001, first made contact with RTU in order to admit
his own child, as he was facing financial difficulties. After forming the Theni
HIV positive network in 2001, the network started referring children from
Theni. The agency (RTU) originally began as a shelter for destitute women,
including widows. It is these women who eventually took on the role of
caregivers to children infected and affected by HIV.
Later on, in the year 2005, when Mr. Pitchaimani moved to a leadership
position at the State Level Network, he arranged an advocacy meeting at RTU
with the help of members from other district networks such as Tirunelveli,
Thoothukudi, Perambalur, Chennai, Kanchipuram, Trichy, Dindikul, Madurai
and Pudhukotai. The purpose of the meeting was to sensitise the RTU staff
on issues of HIV infected and affected children and also to inform the
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networks about the service availability at RTU. So from that year other
DLNs began referring children of economically weaker PLHA to RTU.
Testimonies from members: During focus group discussions with staff of five
District Level Networks (Thoothukudi, Tanjore, Trichy, Theni and Madurai),
there was unanimous acknowledgment of the role played by Mr. Pitchaimani
in establishing contact with RTU, and catalysing referrals of children from
various district level networks.
Figure 8: Number of Infected and Affected Children’s
referred by DLNs to RTU
50
40
THE
TTD
30
MDR
TNJ
20
TRY
10
0
2003
2004
2005
2006
No. of Referrals by DLN year-wise
Beneficiary 1: “I have been a member of Thoothukudi District Level Network
for the past one year. I have two children and my husband doesn’t take care
of the family well. I met the DLN staff in the government hospital when I
went for a check up during my second pregnancy, where they assisted me and
accompanied me to receive the hospital services at the GH. With the help
of the DLN I have participated in the support group meetings conducted by
them in the hospital. Attending the support group meetings and the meeting
at the DLN office gives me psychological support. Though my first son is not
infected with the virus, my second child is HIV positive. In the meetings, I
have shared with the DLN my inability to bring them up and they told me
about this institution. It was then that I felt that at least my children could
receive good care and proper education for a bright future. RTU has helped
my children in manifold ways, my second child was sick most of the time
before moving to Reaching the Unreached, but now the child is doing fine
after his/her shift to the institution.”
Beneficiary 2: “I have two children: the first one, my daughter, is 5 years
old and HIV negative, and is studying at RTU. My son who is 3 years old is
HIV positive and is living with me. Initially when the Thoothukudi network
told me about the institution, I was very much upset and confused about the
prospect of admitting my child to the institution. My family members were
also against the idea of admitting the child into the institution. Against all
of their wishes I decided to admit my daughter into RTU to provide her a
good education and ensure her bright future. I am sure my daughter will also
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understand that I have done this for her welfare only. My daughter is also
enjoying the environment and she is very happy with the women who take
care of her.”
Challenges: As the graph shows, the majority of referrals to date have
been from Theni. This is partly a consequence of the challenges imposed
by long-distances, inhibiting referrals from networks situated farther away
from the care centre.
Lessons learned: This case study illustrates the good practice of referral
and linkages, and also the benefits of sharing information across positive
networks. It stands as a testimony to the impact of advocacy.
LAR Case Study 7: Government-Positive Network linkages benefit women
living with HIV/AIDS in Aurangabad, Maharashtra (also ADV, DS)
In brief: The Network of Aurangabad District People Living with HIV/AIDS
(NAP+) has successfully developed linkages with the Aurangabad Municipal
Cooperation for donations of sewing machines, that have been distributed
to women from the PLHA community, and are additionally being used by
the network for training members in sewing. Links with the Government
Polytechnic have enabled the network to avail the services of a lecturer who
conducts classes in sewing and social marketing at the network premises.
Description: Since the inception of NAP+ in June 2004, women members
– many of them widows—had been actively seeking means of income
generation. In the process of making enquiries they came to know that
Aurangabad Municipal Cooperation (AMC) was granting free sewing machines
to women below poverty line. At that time, the standard protocol was
that local leaders (Nagar Adhyaksh) could recommend two women each,
to the AMC Mahila Bal Kalyan Samiti department. The network president
Mrs. Sunita Kathar approached the President of Mahila Bal Kalyan Samiti,
Dr. Gyanda Kulkarni and told her about the organisation. Following several
repeat visits for advocacy and strengthening linkages, the network, with
the guidance of Dr. Gyanda Kulkarni, submitted a grant proposal for 41
sewing machines to AMC in August 2004. With continuous follow up
the DLN succeeded in obtaining sewing machines in January 2006. The
network then distributed 31 machines to women members who had skills
and interest in sewing. The network retained nine sewing machines at
the network premises to provide training to others who wanted to learn
sewing. Through links with the Government Polytechnic, the network has
been able to avail the services of a teacher who conducts classes at the
network premises six days a week, from 3 pm to 5 pm. Under the training
programme, the lecturer also provides them training on social marketing.
Facilitator 1: Dr. Gyanda Kulkarni, Education Officer and President of Mahila
Bal Kalyan Samiti, stated in her interview that she had always wanted to do
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something to assist women with HIV, and when DLN president Mrs. Sunita
Kathar approached her, she was willing to help her. She assisted DLN in
developing the proposal for the machines.
Facilitator 2: Dr. Thorat, Principal of Government Polytechnic
Aurangabad, helped the network to get free sewing classes under a
Central Government programme aimed at generating employment
opportunities. The only criterion was that there should be more than
30 students per batch. So when DLN approached him he was more than
willing to help them.
Beneficiary 1: Mrs. K became a member of the DLN in January 2006. Her
financial condition was very bad as she was the sole breadwinner and had
lost her husband to the disease. The DLN then gave her a sewing machine and
also provided her training on basic sewing which included making petticoats,
blouses, salwar kameez, frocks, curtains, falls, etc. She underwent two months
of training following which she was able to supplement her family income
through sewing. She is in all praise of DLN, and now wants DLN to help her
scale up the business through making school uniforms.
Key informant interviews with five other women revealed similar
narratives.
Challenges: More initiatives for social marketing of the finished garments
are needed to strengthen the income generation component of this
activity.
Lessons learned: Resourcefulness in learning about existing government
schemes and advocating with the concerned departments can help foster
strong linkages. The linkages need not be restricted to monetary or in-kind
donations, as illustrated by the practice of having free classes donated by
the polytechnic. These good practices may be considered for replication by
networks in other districts.
LAR Case Study 8: Linkages with private pharmaceutical company helps in
procurement of ART at concessional rates in Aurangabad, Maharashtra.
In brief: DLN developed linkages with pharmaceutical company CIPLA for
ART drugs at the concessional rates with 20% discount, and around 25
people have benefited till date.
Description: Prior to the availability of ART from the state network NMP+
at Pune through the TAAL project, the situation in Aurangabad was such
that most of the Aurangabad network members needing anti-retroviral
therapy had to go to Mumbai for ART treatment. Following meetings with
one of the medical representatives of CIPLA, the Aurangabad network was
able to partner with CIPLA for obtaining ART drugs at 20 % discount.
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Beneficiary 1: Mr. T is 33 years old and was diagnosed in 2006, under the
PPTCT programme. He was referred to the DLN from the PPTCT centre. When
his CD4 count was discovered to be below 200, he had to be put on ART and
was sent to Mumbai. The tedious process and travel involved made him turn
to a private practitioner in Aurangabad; however he was not able to afford
the market rate for ART. The network enabled him obtain ART from CIPLA
at the discounted rate. He was so satisfied by the help that he started
volunteering for DLN as a peer counsellor at the Government Medical College
Hospital PPTCT Centre. Subsequently he joined as the Treatment Education
Officer at the DLN.
Three other beneficiaries reported similar benefits of the linkage with CIPLA
in their key informant interviews.
Lessons learned: In districts where ART Centres or government/network-
aided free ART is not yet available, linkages with pharmaceutical company
can benefit those who are unable to afford the retail price of medicines.
LAR Case Study 9: Linkages with counsellors from VCTC and PPTCT strengthen
services to people infected by or at risk of HIV in Theni, Tamil Nadu, and
Aurangabad, Maharashtra
In brief: Through effective linkages and rapport with counsellors from
VCTC and PPTCT centres, the Theni District Network for HIV Positive People
(TDNP+) and Network of Aurangabad by People Living with HIV/AIDS (NAP+)
have been able to increase referrals, counselling, and follow-up services.
Description: TDNP+ and NAP+ have developed strong linkages with the
counsellors from VCTC and PPTCT centres in the district.
In Theni, the network initially invited counsellors from VCTC and PPTCT to
explain the network activities. At present, the network members attend
monthly meetings of counsellors organised by local NGOs. TDNP+ staff assists
in management of hospital attendees. Counsellors refer PLHA to the DLN. They
also help with follow-up of ICTC attendees diagnosed positive. Counsellors
refer PLHA to the TDNP+. In focus group discussions, the counsellors testified
the effectiveness of their links with the positive network.
In Aurangabad, the network NAP+ was formed initially at the VCTC of
Government Medical College Hospital, Ghatti. The doctor in charge of the
VCTC (Dr. Bajaj) helped to initiate the network, and spread word of the
activities of the network to other doctors. The close association between
the network and the VCTC continues to be sustained through linkages
maintained by staff of the respective units.
Doctors from the VCTC and the newly formed ART Centre in Aurangabad
conduct information sessions for NAP+ members on OI, STI, importance of
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hygiene, etc. Most members enrolled at the network are referrals from VCTC
and PPTCT centre of GMCH. Effective monitoring of PLHA is possible through
the efforts of NAP+. Space has been given by the VCTC to peer-counsellors
and volunteers from NAP+. The VCTC counsellor reported that the presence of
peer counsellors has also alleviated his own counselling load.
The Treatment Education Officer at NAP+ testified the relevance of the
NAP+-VCTC linkages in his own life. He was diagnosed positive at the VCTC
and referred to NAP+. Soon he became a volunteer for the network and
used to work informally at the VCTC as a peer-counsellor. Eventually he
gained employment in the network as Treatment Education Officer.
Lessons learned: HIV Counsellors play a key role in motivating individuals
to get tested, and in providing support to people diagnosed positive.
Maintaining effective linkages between counsellors and district level
network can benefit PLHA in areas of follow-up and other services.
5.6 Greater Involvement and/or Employment of Positive
People (GIPA)
While the very existence of PLHA groups such as DLNs is evidence of the GIPA
principle in action, in this section we consider specifically the involvement
and/or employment of PLHA in Regional/National Positive Networks, District
AIDS Advisory Committees, NGOs, Counselling and Testing Centres (PPTCT/
ICTC/ VCTC), NGOs (HIV/AIDS Prevention and Care & Support projects), and in
capacity-building for healthcare providers.
GIPA Case Study 1: GIPA through placement of DLN staff in hospital in
Belgaum district, Karnataka
In brief: Placement of a Public Relations Officer of Spandana, the Belgaum
Positive Network, in the government hospital, has helped increase uptake
of counselling and testing services at the hospital.
Description: Spandana, the DLN, initiated this practice. The placement of
the PRO has had a very good impact both on the membership of the network,
as well as with regard to access to the services offered by the hospital. It
has been very helpful that the PRO is (a) a PLHA, (b) a member of Spandana
staff, and (c) present at the hospital where HIV positive people come into
contact with the VCTC services of the hospital. The referral process has been
stronger because of the PRO’s presence.
As one of the DLN staff members puts it “Before we set up the PRO at the
hospital, we had very low registration with Spandana. After setting up the
PRO, there are about 60 referrals per month. Of this, about 60% are actually
registering with us…The PRO is the first and public face of Spandana.”
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A member of the PPTCT staff at the hospital substantiated this increase in
uptake of services by acknowledging that about 80% of her clients agree to
meet the PRO, and that there is an increase in number of clients availing
PPTCT services because of PRO’s presence.
Lessons learned: This case study illustrates the importance of the “first and
public” face of a DLN being present at the hospital when people find out
that they are HIV positive. The counselling process is helps in confidence-
building when another person is able to say “I am also a PLHA”, and offers
oneself as an example. This gives considerable boost to the morale, hope,
and comfort of the clients.
GIPA Case Study 2: Involvement of Positive Network at women’s sub-jail
programme in Tiruchirapalli, Tamil Nadu, enhanced uptake of VCTC services
In brief: The District Level Network in Tiruchirapalli district, Tamil Nadu,
partnered with a private hospital at an awareness programme in the
women’s sub-jail, which motivated several inmates to go in for voluntary
counselling and test.
Description: A private hospital – American Hospital – has been conducting
HIV awareness programmes at the district sub-jail every Friday. One of the
problems faced by the group was the indifference of the prison inmates
to information on HIV, resulting in low rates of voluntary counselling and
testing. Consequently, the counsellor Ms. Elisabeth, then associated with
the hospital approached the positive network with a request to depute a
member who could motivate the prison inmates for VCTC through positive
speaking. In an interview with the field-team, she recalled that the
programme involving the positive speaker drew an unprecedented audience
of approximately 300 prison inmates.
Positive speaker Ms. Latha shared that she had been assisted by the
network through its support groups and also helped her with CD4 testing.
This had developed her faith in, and commitment towards, the network.
When the network was approached by the hospital for positive speaking,
she readily agreed. During the programme she engaged the audience
intensely, and received many queries about HIV. After the programme
many women came forward voluntarily for HIV counselling and testing,
and also enquired about the positive network. Eleven women tested
positive.
Lessons learned: Greater involvement of positive people can motivate VCTC
uptake in such populations as prison inmates. Positive networks located
in towns and cities where prisons exist, can potentially get involved in
prison interventions, as they are likely to have great success in engaging
the prisoners and motivating them for getting counselled and tested.
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GIPA Case Study 3: Involvement of PLHA in support to women availing PPTCT
services at Kovilpatti General Hospital, Thoothukudi, Tamil Nadu
In brief: All women attending the ante-natal mother programme at Kovilpatti
are being counselled and tested for HIV. DLN staff is providing supportive
services to those testing positive. This good practice has enabled DLN to
be recognised by the hospital staff as a provider of useful services, and
illustrates GIPA in action.
Description: Peer field staff of the DLN are following up women who
have undergone voluntary counselling and have tested positive. From the
initial stages of being tested and until the delivery of the child, peer staff
accompany the women throughout their hospital rounds. Upon delivery,
they conduct monthly follow-up until the child gets tested for HIV at 18
months. If the child is confirmed to be positive the DLN helps them to
receive medical and other assistance from government and NGOs. According
to DLN staff, the objective of assisting pregnant women at the ICTC is to
facilitate timely access to clinical tests, help identify new HIV infections,
and illustrate the role of the DLN as a service provider. The role of the DLN
has been commended by counsellors at the hospital and by women who
have benefited from their support.
Beneficiary 1: Ms. E has been a member of this DLN for the past year. She
has two children and reports being neglected by her husband. She first met
and was assisted by DLN staff in the government hospital during her second
pregnancy. The DLN staff helped her in receiving the hospital services at
the GH, and enrolled her in support group meetings. When the second child
was diagnosed HIV positive, the DLN assisted the mother in admitting him
into a care and educational institution ‘Reaching the Unreached’ as she
lacked the resources and support system to raise the child herself.
Lessons learned: While the primary objective of the described activity was
to enhance the identification of PLHA, it has additionally helped the DLN
to build up a good relationship with the hospital staff and improve service
delivery for the PLHA. This good practice also illustrates the benefits GIPA
can have in program functioning within clinical settings.
GIPA Case Study 4: Network helps build capacity of doctors in HIV Management
in Thanjavur, Tamil Nadu
In brief: The Thanjavur district level network has helped organise a training
programme for doctors from Primary Health Centres (PHCs) and Taluk level
hospitals in the district. This programme has resulted in increased referrals
from these institutions to the Thanjavur ART Centre.
Description: With support from Arockiaagam, an NGO, the Thanjavur
network initiated and facilitated a training programme on HIV/AIDS for
about 80 physicians from the primary and secondary health care facilities in
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Thanjavur district. The purpose of the training was to provide an overview
of HIV and OI management, publicise the services of the newly opened ART
Centre, and promote referrals to the centre.
The network first consulted with the Deputy Director of Health Services, who
recommended that they get permission from the District Collector. After
securing the necessary clearances and permissions, the network conducted
the programme, which was inaugurated by the Collector, and involved ART
physicians from Madurai and Thanjavur as resource persons.
The doctors who attended the training programme were aware of the
basics of HIV/AIDS, and also had theoretical knowledge on HIV/AIDS
clinical management. However, they lacked practical experience in clinical
management of HIV/AIDS cases. The training programme focused on clinical
management of OIs and STIs at PHC level, referring the cases to the district
hospital for ART. The resource persons also informed the physicians of the
diverse range of services available at the district hospital for PLHA.
According to resource person Dr. Parthasarathy, ART Medical Officer,
Madurai, the participation and involvement of the Deputy Director, Health
Services and Joint Director, Medical Services, contributed to the success of
the programme.
A staff member from the supporting NGO Arogyam noted that the Thanjavur
network was one of only two in the state that been able to carry out the
training programme and utilise funds effectively.
Dr. Jayaseelan, ART physician at the Thanjavur Medical College Hospital,
who was one of the resource persons at the training, reported an increase in
effective referral of PLHA from the PHC and Taluk hospitals to the ART Centre;
approximately 8 – 10 cases referred from each facility every month.
Lessons learned: Involvement of positive people and networks in capacity-
building initiatives for health care providers serves the dual purpose of
increasing knowledge levels, decreasing stigma and raising the profile of
the community. Inclusion of the District Collector, and key health/medical
officials was pivotal to the success of the programme.
5.7 Miscellaneous (MISC)
In this category are included practices and systems such as the development of a
positive speakers’ bureau as an advocacy tool, and positive marriage bureau.
MISC Case Study 1: Positive Speakers’ Bureaus of East Godavari and Guntur
districts in Andhra Pradesh
In brief: The DLNs of East Godavari and Guntur have institutionalised
Positive Speakers’ Bureaus each comprising around 70 PLHA members at
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the district level. Interactions with the staff of both networks revealed
that there was an unanimous acknowledgement of the role played by the
Positive Speakers’ Bureaus in establishing rapport with the general public,
in encouraging the newly identified PLHA to be part of the DLNs and also
enhancing their knowledge by disseminating information on HIV/AIDS.
The Positive Speakers’ Bureau further plays a significant role in positive
prevention amongst PLHA.
Beneficiary 1, a member of the Positive Speakers’ Bureau, (East Godavari)
was cheated by quacks and lost Rs. 1 lakh or two for his HIV treatment.
After learning the DLN and its activities, he enrolled, and started attending
the support group meeting. He then also readily accepted the offer to join
the Positive Speakers’ Bureau. Now he is actively involved in disseminating
information on HIV/AIDS. On many occasions, participants of the support
group meeting expressed doubt of his positive status considering his
outwardly healthy physique. However, he was able to convince them all
by explaining that initially most people with HIV positive status appear
outwardly healthy, but become sick if they do not start to take medicines
and become self caring. He has thus helped dispel stereotypes of PLHA
through his PSB activities.
Beneficiary 2, a female PLHA, underwent depression and trauma upon
learning of her status. The Counsellors at Government hospital, Guntur
referred her to the DLN, Guntur where she was initially oriented on HIV/
AIDS. She got opportunity at the DLN in getting to learn more about other
PLHA and their conditions. Later, she underwent training under the AASHA
campaign and has served five mandals of Guntur district as a Positive
Speaker. As a positive speaker, she is very much involved in advocacy, and
attributes therapeutic value to her training and experience as a positive
speaker in helping her overcome personal grief.
Lessons learned: Information received through the positive speakers’
bureaus benefit the PLHA directly, and indirectly through sensitising the
general community. Mandal level activities of the PSB further aid the project
of decentralisation of care and support services.
MISC Case Study 2: Positive Speakers Academy in NTP+, Thane district,
Maharashtra
Since December 2005, NTP+ has been implementing activities in positive
speaking, with support from a UNICEF project. PSA was originally developed
as a means of sustainability for NTP+. Members themselves have developed
a curriculum and course content for the Positive Speakers Academy, which
includes such areas as personality development, sex and sexuality, myths and
misconceptions. NTP+ has also trained one or two positive speakers in other
districts such as Satara and Pune.
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Key members of the DLN have been involved in PSA activities, and are very
outspoken about their status and the need to reach out to other PLHA and
society at large through the PSA.
Ms. S, a member of NTP+ first made contact with the group in 2005.
Inspired by the support she received at the network, she became a regular
member and participated in trainings and counselling sessions. Driven by
the conviction Majha sarke mi ekti nahi yein pan ajoon lok aheinthein jein
majha sarkhein cha ahein (I am not the only person, there are also other
people who are like me), she grew passionate about speaking in public.
The issues she addresses as a speaker include: positive living, health and
hygiene, diet and adherence to medication. Among her achievements as
a PSA member is an interview in Loksatta newspaper in which she spoke
about her child’s negative status, and shared her tips on healthy living.
She feels PSA training has given her enough confidence to speak in front
of 1000 people. She reports that she has gained confidence in speaking to
friends and family from her experience with the PSA.
Ms. B, the DLN staff member, said that PSA training had helped her a lot
in building her confidence and in answering questions. She illustrated this
with the example of an event organised by MSACS on ‘World AIDS Day’
attended by the Maharashtra Chief Minister and other dignitaries. She was
asked to make an impromptu speak, and was able to do it, the result of
confidence built through the training she has received through the PSA.
In addition to positive speaking at advocacy events like Larsen and
Toubro’s work place awareness and sensitisation programme, Central Board
of Workers’ Education (CBWE) etc., members of the PSA also give interviews
in newspapers, radio shows and on television in which they also publicise
their email and other contact information. By doing so, they have been
successful in raising the profile of the organisation, generating awareness
and understanding, and letting other PLHA know of their services.
An event in which PSA members were involved: the Dabbawala Campaign
on World AIDS Day 2005.
Lessons learned: This case-study shows how capacity building at community
level and positive speaking can help in mainstreaming, thus helping in
reducing stigma and discrimination faced by PLHA and in improving their
condition.
MISC Case Study 3: Positive Marriages in Kadapa, Andhra Pradesh
“ … Sure, we cannot predict of what will happen tomorrow, however, we can
certainly plan carefully for our future”.
Leading a life without a spouse is very difficult for PLHA, many of who are
young widows with children. Keeping this concern in mind, the DLN President
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Mr. Sameer thought of the option to perform marriages among the positive
people. He discussed this issue in different support group meetings and invited
suggestions from the members as well as from the general community. Most of
the PLHA appreciated the opinion of performing marriages among the positive
people. After ten days of the proposal, a positive woman and man came forward
and sought help from the DLN in getting married. By June 2006, four such
marriages among four positive couples had been facilitated by the DLN.
Some women PLHA were worried about the fact that they had already lost
their first husband and were not sure of risking a second bereavement if
they got married. The DLN staff sought the help of a counsellor at a private
hospital in convincing them. DLN received enormous support from certain
members from the general public. The DLN has a plan to perform more
marriages among the positive people in the future at the district level.
Beneficiary 1 Mrs. C lost her husband in the year 2003 to AIDS when she
was not aware of her positive status. In the year 2004, when she learned
about her sero-status, she became depressed and contemplated suicide.
Meanwhile, she met the DLN president, whom she had known for quite
long, and subsequently became a member of the DLN. A neighbour of Mrs. C
was HIV positive and caring for his terminally ill wife and two children. He
approached the DLN President and communicated his intention of marrying
C since she was also a widow. The same proposal was also presented to
his wife who too agreed to the idea. The DLN staff took one-month time
to mobilise support for the general community, and finally performed the
marriage in mid 2006.
Facilitator: Mr. K, a photographer by profession works for several print
media in the district, and is also involved in a fan association. Once in the
year 2003, he happened to meet the DLN President, and was inspired by
DLN’s services and assured to render possible support to the network. In
the year 2005, when the DLN President decided to perform marriages among
Positive People, he discussed the same with K and requested for possible
support in performing such marriages with out any problems and obstacles
from general community. Mr. K made his presence at the marriage function
and mobilised media to cover the event in newspapers and telecast in
visual media. Mr. K has been a constant source of external support to the
endeavour.
Lessons learned: Positive marriages are a way to enhance quality of life and
mutual support for PLHA. They require broad community and family support
to be successful, and the DLN can help facilitate the process.
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6
Recommendations
Despite downward revisions in national estimates of HIV prevalence, ensuring
universal access to care and treatment remains one of the most pressing issues
on India’s HIV/AIDS agenda.
A recent study on access to care carried out by the Maharashtra Association for
Anthropological Sciences (MAAS-CHRD 2006) in three districts of Maharashtra,
Andhra Pradesh and Orissa, recommended the following ways in which access
could be measured:
• Studies of enablers and barriers to care
• Situational analyses using qualitative methods
• Studies of disease burden and coping mechanisms
• Studies to document needs of PLHA at different stages of illness
• Studies to determine response of public, private, and NGO sectors to needs
of PLHA.
The present study identified enablers of care that had been developed by
District Level Networks in 25 districts. It examined several activities in the
areas of networking, direct services, linkages, referrals and advocacy that are
worthy of continuation and replication by other DLNs.
The activities varied with respect to the degree of impact, and scale of
replicability. While activities such as the support group meetings were high on
both criteria, others such as the marking of symbols on medicine bottles clearly
need to be scaled up to benefit communities with low levels of literacy. It is
hoped that the selected case studies will allow DLNs learn from the collective
experiences and enable transfer of good practices across states and districts.
Through our examination of district level networks in this study, some themes
were found to be associated with high numbers of good practices. These
include:
• Presence of charismatic and committed leaders at the district and state
levels (too many to mention).
• Existence of other projects in addition to the Access to Care and Treatment
project, enabling synergy and resource-sharing across projects. Examples
include the UNICEF project for positive speakers that strengthened advocacy
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in the Thane network in Maharashtra, and projects being supported by
Faith Based organisations in northern Karnataka and Manipur.
• The role of key external individuals such as physicians and government
officials who leveraged their own resources or skills to enhance the access
to care and treatment through linkages with the networks.
• Information sharing and collaboration across networks. Strong examples
are the advocacy involving multiple networks (Satara, Kolhapur, Sangli)
that resulted in enhanced hours and access at the Sangli ART Centre in
Maharashtra, and the information sharing across networks in Tamil Nadu
that has resulted in over 100 children infected or affected by HIV being
referred to the care home ‘Reaching the Unreached’.
With India’s National AIDS Control Plan (NACP-III) emphasising both
decentralisation of care and increased involvement of communities
in managing interventions, the need to strengthen the capacity of district
level positive networks is high. The present study offers the following
recommmendations for organisations involved in building capacity of DLNs:
• Help build and strengthen leadership, both first and second line.
• Actively involve DLNs in development of additional programs (e.g. through
training in planning, proposal writing)
• Promote district level experience sharing and review meetings of DLN staff
with diverse stakeholders
• Promote inter-DLN exchange at state (and national) levels
• Invest in initial and periodic institutional assessment of networks, including
visioning exercises and SWOT analyses
• Enhance skills in documentation and communication for DLN staff.
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7
References
Acharya, A. K. Yadav, and N. Baridalyne (2006) Reproductive Tract Infections/
Sexually Transmitted Infections in Rural Haryana: Experiences from the Family
Health Awareness Campaign. Indian Journal of Community Medicine. Vol. 31,
No. 4.
MAAS-CHRD (2006) Access to HIV/AIDS Care: a study among people living with
HIV/AIDS, Dissemination Report, Pune, India.
INFO. The INFO Project: John Hopkins Bloomberg School of Public Health
Information and Knowledge for Public Health (INFO) Project http://www.
infoforhealth.org/practices.shtm
UNAIDS (2003) Handbook on access to care and treatment: a collection of
information, tools and resources for NGOs, CBOs and PLHA groups. Geneva
UNAIDS (2000). Summary Booklet of Best Practices in Africa. Issue 2, Summary
Booklet Series. Switzerland: Geneva. http://data.unaids.org/publications/irc-
pub02/JC-summbookl-2_en.pdf
UNESCO. (accessed 2006) International Bureau of Education, Good practices and
Evaluation. http://www.ibe.unesco.org/AIDS/Good_Practices/GoodPractices_
home.htm
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POPULATION FOUNDATION OF INDIA
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Tara Crescent
New Delhi –110 016
E-mail: popfound@sify.com
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