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Assessing PLHA expectations HIV Global Fund PFI |
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Assessing PLHA
Expectations Regarding
Care and Support Services
with a view to Strengthen
Networks of PLHA
POPULATION FOUNDATION OF INDIA
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Assessing PLHA Expectations Regarding
Care and Support Services with a view
to Strengthen Networks of PLHA
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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Acknowledgments
Population Foundation of India is indeed grateful to the PLHA who
participated in this study and shared their views without any hesitation.
PFI gratefully acknowledges the immense support received from all
the District Level Networks (Prakasam and Vishakhapatnam in Andhra
Pradesh; Belgaum and Dharwad in Karnataka; Chennai and Madurai
in Tamil Nadu) and three State Level Networks. Mr. K. K. Abraham,
Mr. Kumar and his team from the Indian Network for People Living
with HIV/AIDS (INP+) had spared their invaluable time sharing their
views and ultimately contributing to the successful completion of the
study. It is needless to say that without useful comments and insights by
INP+, this report would not have taken a good shape.
PFI is earnestly thankful to the Medical Officers and ART In-charge
at the following ART Centres: Guntur, Vishakhapatnam, Madurai,
Namakkal and Hubli for extending their cooperation and the local
service providers in the districts.
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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. On the basis of programme needs and experiences,
PFI identifies issues that need attention and conduct special studies to
provide possible solutions. These special studies are seen as integral
elements of the programme and the results are expected to feed the
programme to improve coverage, effectiveness and ultimately profit
the beneficiaries.
The study entitled “Assessing PLHA Expectations Regarding Care and
Support Services with a View to Strengthen Networks of PLHA” is one
such study that PFI had conducted during the phase 1 programme.
Hope the findings and conclusions of the study presented in this report
would be of significant use to managers implementing care and support
programmes for the benefit of people living with HIV/AIDS.
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Context
PFI led NGO/private sector initiative committed to provide care and
support services to 160,000 People Living With HIV/AIDS (PLHA)
across six HIV high prevalence states over a five year period starting
from April, 2005 under the Access to Care and Treatment (ACT)
project supported by The Global Fund (Round 4),
The Indian Network for People Living With HIV/AIDS (INP+) is one of
the partners in the project and has its affiliated state level and district
level networks. The District Level Network (DLN) is set up by PLHA
and for PLHA. Therefore, the networks of PLHA have been identified
as one of the strategies to ensure that this commitment is achieved
effectively and thereby improve the quality of life of PLHA. However,
the ground reality is that many PLHA are not and do not want to be a
part of these networks. Anecdotal evidence suggest that several PLHA
prefer to seek treatment, care and support services independent of
the network. As a result of this, one was not sure whether or not they
receive appropriate follow up and counselling that they may need
at various stages of disease progression. This tendency of PLHA not
to seek services at DLN may have implications of its utilisation and
its long-term sustainability. No systematic information exists on why
many PLHA do not wish to become part of the networks and if there
is any other model of providing treatment, care and support, services
within the larger networking system.
Several people in the field of HIV/AIDS feel that the profile of many
PLHA who do not seek services through the network has a direct
bearing on the nature and type of services that are relevant and
acceptable to them. For example, it is likely that some PLHA due to
their social, economic and demographic status may be more sensitive
to the need for greater anonymity than others and may not want to be
part of DLN. It is also likely that there may be varying expectations
about the quality of care and support services due to the attitudes
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to life, psychological conditions and life style of PLHA. It is hypothesised that the
expectations of PLHA already enrolled at the networks are different from that of
non-enrolled.
In view of this, a special study was initiated to explore the nature and range of
expectations of the PLHA with regard to the treatment, care and support services
with a view to strengthening the capacity of DLN to meet these expectations and
accordingly enable DLNs to make an action plan.
For meeting these goals, PFI conducted a study among PLHA, local service
providers and DLN staff in Tamil Nadu, Karnataka and Andhra Pradesh.
Purpose
• Provide a strategic direction to the networks of PLHA in providing quality care
and support services to PLHA.
Objectives
• Explore the nature and range of expectations of PLHA with regard to treatment,
care and support services.
• Assess the magnitude of the expectations of PLHA and prioritise them for
possible implementation.
The findings of the study would help INP+/PFI in designing strategies for
strengthening the capacity of DLNs and effectively addressing the expectations of
PLHA regarding treatment, care and support services.
Research questions
Are there differences in the expectations of PLHA (enrolled and non-enrolled) with
regard to treatment, care and support services? If yes
• How can the service system (DLNs) meet these expectations?
• Whether alternative ways to provide care and support services to PLHA are
needed?
Methodology
The study was carried out in two phases, namely, Qualitative phase (Phase I), and
Quantitative phase (Phase II).
Phase I: Qualitative phase — In-depth interviews
This phase was intended to explore the expectations of PLHA with regard to care,
treatment and support services. An attempt was made to search for patterns that can
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be programmatically responded to. This phase was also expected to throw light on
the expectations, perceived benefits and experiences of enrolling PLHA. In-depth
interviews were conducted at various levels involving PLHA (both enrolled and not
enrolled), DLNs/INP+ functionaries/board members and local service providers,
including NGOs.
Study area, PLHA and coverage
The consultations with INP+ revealed that amongst DLNs set up in the ACT
project, as in September 2006, the districts of Prakasam and Vishakhapatnam in
Andhra Pradesh, Belgaum and Dharwad in Karnataka, and Chennai and Madurai
in Tamil Nadu have higher number of non-enrolled PLHA. Geographical location
of DLNs was also a criterion in selecting the districts for study. Accordingly, the
study was carried out in these six districts.
PLHA included:
• PLHA, both enrolled and non-enrolled;
• PLHA on ART and not on ART;
• Functionaries of DLNs;
• Functionaries of INP+ Secretariat;
• Health care providers, both government and private, and NGO functionaries
working on HIV/AIDS.
A total of 84 PLHA were contacted, 28 from each state, equally divided between
those enrolled and not enrolled. Both males and females and PLHA on ART/not on
ART were covered, by and large equally. In addition, 22 in-depth interviews with
DLN/INP+ functionaries and 24 in-depth interviews with local service providers in
the districts selected were conducted.
Phase II: Quantitative phase
Using the insights from Phase I of the study, a survey was carried out among the
PLHA to assess the magnitude and patterns of expectations and differentials in
these expectations with respect to gender, ART status and enrollment status. The
survey also sought to quantify the perception of PLHA towards DLN as a channel of
meeting their expectations.
Specifically, the aim of the survey was to understand:
• What is the magnitude of each expectation explored during phase I?
• Where does DLN stand as a channel of meeting these expectations in the overall
support system?
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• Do these expectations significantly vary by gender, ART status and enrollment
status?
• What could be priority areas that DLNs can act upon?
Community-based surveys cannot focus on PLHA given the fact that many do not
easily disclose their HIV status in the community. Hence, structured interviews
were conducted with PLHA coming to five ART centres in the three states of Andhra
Pradesh, Tamil Nadu and Karnataka. The ART Centres covered during phase II
are: Guntur, Vishakhapatnam, Madurai, Namakkal and Hubli. These ART centres
selected in phase-II caters to DLNs covered in phase-I. At each ART Centre, 80
PLHA were interviewed.
Limitation of the study
As the PLHA were interviewed at ART centres, it is very likely that they are
symptomatic and the expectations stated in this study would reflect their perspective.
To minimise this limitation, the study asked a question — “When did you first detect
that you are HIV positive?” — and tested whether expectations of PLHA recently
infected vary from the expectations of those PLHA suffering since a long time.
Findings - Phase I
INP+/DLN perspective
Key tasks identified by INP+ and DLNs for strengthening DLNs include raising
awareness about networks, networking with NGOs/ICTC/ART centres, linkages
with government schemes, programmes for reducing stigma and discrimination,
extending treatment, care and support facilities at primary level, etc. Barriers
faced by the networks, both structural and functional, as revealed during in-depth
interviews include:
• Administrative and functional problems due to the presence of many peewee
networks and overlapping of jurisdiction;
• Lack of funds for creating awareness about the networks;
• Social stigma deterring PLHA from joining DLN;
• Lack of support from NGOs and healthcare facilities.
Service providers’ perspective
Suggestions from service providers indicate the need for increasing awareness,
networking with other stakeholders, ensuring confidence of PLHA, etc. in DLN as
an important link for PLHA and others.
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PLHA perspective
Both enrolled and non-enrolled PLHA have a range of expectations presented in Fig 1.
Fig. 1 – Expectations of PLHA with regard to care and support services
Coping with emotional needs
Addressing financial needs for
self and family
Information and facilitation
access to treatment
PLHA
Other individual expectation
Educational support for children
Nutritional support
Information and facilitating access to treatment
1. Increasing access to treatment for both ART and OI;
2. Facilitation in undergoing tests;
3. Facilitation in procuring medicines;
4. Free or subsidised medication for OI.
• The expectations of non-enrolled PLHA related to availability and
information provision for ART/OI, while enrolled PLHA are concerned more
about regular supply of ART.
• Enrolled PLHA identify the need for care and support and treatment for
their children too. Non-enrolled PLHA limit their expectations to accessing
treatment for self only.
Coping with emotional needs
1. Counselling to improve confidence and courage to live positively;
2. Opportunity to share experience and suffering;
3. Psychological support.
Enrolled PLHA were observed to be more articulate than non-enrolled.
• DLN to stand by even when the family deserts;
• DLN to instill confidence in the family through counselling;
• Solving problems arising in the family.
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For non-enrolled PLHA, psychological support was limited to the self. Enrolled
members view DLN as a support structure. Non-enrolled members are unsure from
where to obtain such a support structure.
Addressing financial needs for self and family
Expectations relating to economic and financial needs include:
1. Need for a job;
2. Monetary help (from government or elsewhere);
3. Job/loan from DLN;
4. Better job than the present one.
Expectations for addressing financial needs of self and family are similar for both
enrolled and non-enrolled. In essence, they want to be helped to remain financially
sound. Enrolled members specifically identified DLN for facilitating meeting of these
expectations, while the non-enrolled primarily expected government to help them.
While the enrolled wanted a job for financial sustenance, the non-enrolled wanted
a loan.
Educational support for children
1. Children’s education should be funded;
2. DLN should help admit the child in a hostel.
The expectations of enrolled PLHA are more specific than those of non-enrolled.
Both men and women are equally emphatic in expressing the need for education
for better future of their children. However, the emphasis on the need for education
for children was more among widow PLHA who are not supported by other family
members.
Nutritional support
1. Nutrition for basic food need;
2. Nutrition to support ART.
The need for nutritional support was more amongst PLHA who are on ART but did
not differ much by their enrollment status.
Overall, both enrolled and non-enrolled members have expectations relating
to a broader set of needs arising as a result of their HIV status — family issues,
reducing stigma, social acceptance, access to basic amenities, and psychological
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support. However, while enrolled PLHA appear to have accepted their HIV status
and identify needs associated with family, positive living, and treatment, the non-
enrolled have needs that relate to all aspects of life, reflecting an ambiguity in what
to expect and from where.
Channels identified to meet expectations
Both enrolled and non-enrolled PLHA identified the following channels to meet
their expectations:
• Government hospitals;
• DLNs;
• NGOs/CBOs;
• Family;
• Others (private sector, etc.).
Government organisations and NGOs are repeatedly mentioned as the main
channels. DLN also featured as an important channel, especially amongst enrolled
PLHA. Channels like family were identified more for psychological support.
Reasons for not enrolling
Question: In general, what according to you are the reasons for PLHA in general
not enrolling in networks?
Enrolled
• Lack of awareness about DLN
• Fear of disclosure of status
• Stigma attached to DLN.
Non-enrolled
• Home visits or regular contacts by network
• Lack of monetary benefit
• Not being able to meet travel expenses, and
other family issues.
From the preceding, the following issues emerge:
• Some PLHA prefer to seek services anonymously rather than through the
network;
• PLHA do not think that network of PLHA can maintain confidentiality;
• PLHA do not expect to benefit through DLN;
• PLHA would not like DLN staff visiting their home or making regular contacts.
Findings - Phase II
The series of specific expectations that came up in Phase I were rearranged in 15
mutually independent categories, to facilitate data collection and capture PLHA
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perspective better. The PLHA were interviewed at ART centres. At any ART centre
and on any given day 65 to 70% of the visiting PLHA are on ART (including follow-
up cases). In the present study 63% of PLHA interviewed are on ART.
Awareness and level of enrollment
Table 1: Distribution of PLHA according to various parameters
Parameter
Number of PLHA on ART
Number of PLHA not on ART
Number of PLHA heard about network
Number of PLHA not heard about network
Number of PLHA enrolled in network
Number of PLHA not enrolled in network
N
%
253
63
151
37
252
62
152
38
199
49
205
51
Total number of PLHA interviewed (N) = 404
Majority of PLHA are on ART and heard about networks. Almost half of PLHA
interviewed are enrolled in networks. This is possible as networks of PLHA usually
work/coordinate with ART Centres by referring PLHA for ART services. Also, many
times, network staff is present at ART Centre helping PLHA who are coming for the
first time and for follow-up services.
Profile of PLHA
Fig. 2 – Profile of Respondents (N=404)
70
60 52
50
48
40
30
20
10
0
Male Female
51
30
19
15-29
30-39
40+
61
21
9
9
UnmarrCieudrrently MarDriievdorced/SeparateWdidow/Widower
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Out of 404 PLHA, 17% are illiterate, 49% had some education, and 34% had
studied up to SSC and above. The mean age was 34 years for those on ART and
33 years for those not on ART.
Enrollment status
Table 2 – Characteristics of enrolled vs not enrolled PLHA
Characteristics
Sex
Male
Female
ART status
On ART
Not on ART
Enrolled in
Not enrolled in any network
any network Not heard about Heard about Total
%
network %
network %
45
40
54
35
15
55
11
46
60
27
31
56
13
40
13
69
Total
% (N)
52 (209)
48 (195)
63 (253)
37 (151)
The table shows that there exists a sizeable number of PLHA (both males and
females) who heard about networks but not yet enrolled. At the same time, around
13% of PLHA, regardless of their ART status, had heard about networks but not
enrolled.
Median duration and HIV status of children and spouse: The median duration
of exposure to HIV amongst PLHA was 29 months. Around 9% of their
children were HIV positive. A majority (57%) reported that their spouse is
also HIV positive.
Association with network: The data show that PLHA who have longer association
with networks are more likely to be on ART as compared to PLHA who have lesser
association with network. However, as the data were retrospective, it is not certain
whether they got enrolled first and then started ART or vice versa.
Around 13% of PLHA, regardless of their ART status,
had heard about networks but not enrolled.
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Magnitude of expectations
The expectations expressed by PLHA regarding care and support services fall into:
Expectations of PLHA regarding care and support services
• Emotional support for positive living
• Medicines to be made locally available for
opportunistic infections
• Expects someone to stand by when the
family deserts
• Free testing facility for CD4 and to start ART
• Solving problems arising in the family
• Financial support to help families
• Need for counselling on regular basis
• Financial help for children’s education
• Need to provide counselling to family
members
• Helping children seek admission in good
schools
• Information about antiretroviral treatment • Help admit affected/infected child in a hostel
• ART medicines to be made locally available • Provide regular job
• Provide food/ration
Though PLHA view these expectations as immediate, there are some statistically
significant differences between males/females, ART/non-ART and enrolled/non-
enrolled PLHA regarding these expectations.
Variations of expectations by ART status and gender
Females expressed greater need for support than males on issues related to family,
such as support when family deserts (p<0.01), solving problems in the family
(p<0.01) and counselling to family members (p<0.01). Treatment-related needs
such as information on ART and its availability at local level are expressed more by
PLHA who are already on ART than those who are not (p<0.001). However, both
males and females have equally expressed the need for information on ART and its
availability at local level.
Similarly, availability of medicines for Opportunistic Infections locally and free
testing facility for CD4 are most immediately sought by PLHA on ART (98%), while
financial support for family or self (91% vs 86%, p=0.000) and help for children
for school admission was expressed more by females than males (88% vs 77%,
p=0.000). Enrolled PLHA are also equally in need of this support. No differences
between enrolled and non-enrolled exist, possibly because many of these
expectations have not been met by DLN for enrolled PLHA.
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PLHA see government as a channel to setting up the systems
for treatment related issues, while DLNs are seen to be for
information provision and as a facilitator too.
Overall, females require support on family issues; PLHA on ART require support on
treatment related to ART and OI management.
Channels identified for meeting expectations1
Government emerged as the single largest channel in case of information about
Antiretroviral Treatment (81%), availability of ART medicines in proximity (82%),
availability of medicines for Opportunistic Infections in proximity (81%) and free
testing facility for CD4 and to start ART (85%). Following the government, networks
of PLHA was also identified as an important channel for meeting expectations
related to treatment, especially in case of information about Antiretroviral
Treatment. PLHA see government as a channel to setting up the systems for
treatment related issues, while DLNs are seen to be for information provision and as
a facilitator too. For issues related to family/self (such as emotional support, to stand
by when family deserts, solving problems of family and counselling), however,
networks of PLHA is the preferred channel.
Gender differentials
More females than males prefer DLN to provide regular counselling to self/family
(63% vs 57%), information on ART (62% vs 54%), support for free testing facility
for CD4/ART (51% vs 38%), employment opportunity (50% vs 42%), and provision
of ration (53% vs 42%). Expectations of females increased when they identified
DLN as a channel, to support on free testing for CD4 and initiate ART, employment
opportunity and provision of ration.
Differentials by ART status
PLHA on ART prefer DLN to make sure that ART medicines and medicines for
opportunistic infections are locally available (at district, village level) than PLHA
not on ART (51% vs 44%). Also, interestingly, as females preferred DLNs to solve
problems arising out of HIV positive status, PLHA on ART also prefer DLN to come
1 Percent values are calculated amongst males and amongst females separately for sex to look at the differentials.
Similarly for ART status and enrollment status.
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Enrolled PLHA want DLNs to facilitate loan from the government
while non-enrolled want money to clear their debt.
forward and solve family problems arising out of HIV status (52% vs 44%). This has
an implication for DLNs on what to focus when they deal with females as well as
PLHA on ART. On issues related to treatment/medicines, DLNs are seen more as
facilitator.
Differentials by enrollment status
While enrolled PLHA would want DLNs to meet their expressed requirements,
they seem to have understood the limitations of DLNs but lack clarity about what
expectations DLNs can meet (children’s admission in good schools and help admit
in a hostel) and what they cannot (provide job, food/ration).
While enrolled PLHA thought the DLN’s capacity is limited on certain issues (job,
food, support to children), they would like DLN to stand by when their family
deserts and solve problems at family level. Enrolled PLHA still expect DLN to
support them on family issues and counselling to family members. Non-enrolled
PLHA want DLNs to help them admit children in good schools/hostel, offer job
and food/ration. Enrolled PLHA want DLNs to facilitate loan from the government
while non-enrolled want money to clear their debt. Males or females, ART or not
on ART or enrolled or not enrolled, the requirement of financial support is
equally felt.
Since the expectations vary according to their enrollment status, DLNs need proper
planning to meet these needs in order to retain enrolled PLHA in the networks and
further to make the entry easier for those who are not yet enrolled.
Addressing the limitation of the study
To minimise this limitation stated earlier, the analysis was done taking into account
the duration of the infection. The study asked: When did you first detect that you
are HIV positive? — and tested whether expectations vary by PLHA recently infected
(six months) vs PLHA suffering since long (more than six months).
PLHA with recent status of HIV expressed greater need for support for self when
the family deserts and help for children’s admission in a hostel, whereas those
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suffering from long have greater need for information on ART and free testing
facility. In other respects, the expectations of the two categories appeared to be
similar. To ascertain this condition, a logistic regression analysis was carried out
considering the expectations (those expectations that were found significant in
bivariate analysis) as dependent variables and effects are controlled using age,
sex, education, income, marital status, spouse’s HIV status and children’s
HIV status.
The logistic regression results (for someone to stand by even when the family deserts
as a dependent variable) show that PLHA who had exposure to HIV for more than
six months were three times more likely than their counterparts to seek support
when their family deserts them. Except for this variable, no other expectation was
observed to have varying expectations significantly according to symptomatic or
asymptomatic stage.
Discussion
This section lists the findings about expectations of PLHA and identifies the
implications for DLNs’ planning and programming.
During phase I, the expectations were found to vary according to the enrollment
status of PLHA in the networks (enrolled vs not enrolled) and also with respect to
ART status (ART vs non-ART). For example, in relation to information and facilitating
access to treatment, expectations of non-enrolled PLHA are related to information
provision and availability of ART and OI, while enrolled PLHA felt a greater need
of treatment and regular supply of ART. Furthermore, enrolled PLHA identified
treatment needs related to their children as well, while non-enrolled PLHA limit
their expectations for self only.
In phase II, a majority of PLHA are on ART, have heard about networks and nearly
half of them are enrolled in networks. Since the interviewed PLHA were those visiting
ART centres, the findings — 49% enrollment, 63% PLHA on ART and 62% PLHA
heard about networks — need to be seen with caution.
The mean age of PLHA was 34 years, with equal proportion of males and females;
majority were currently married, and also majority studied above primary level
of education. The bivariate analysis showed that age factor does not predict the
likelihood of enrolling in network. The likelihood of enrolling is more among
females, and also where the spouse and children are HIV positive.
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Since the stigma attached to PLHA discourages enrollment there
is a need to make it clear that without the consent of those
enrolling, their status will not be made public.
Many PLHA (79%) are willing to join the network. Local service providers (Doctors,
VCTC, NGOs) suggested a media campaign (documentary films, street plays,
hoardings and advertisements) to generate awareness. The stigma and confidentiality
issues should be addressed while using these media. It should be noted that DLNs
were reminiscing not enough cooperation from either NGOs or the private sector in
providing information about DLNs.
Since the stigma attached to PLHA discourages enrollment there is a need to make it
clear that without the consent of those enrolling, their status will not be made public
(both at the time of enrolling and during the outdoor activities). How to mitigate the
stigma attached to networks is in itself a challenge.
The majority of the enrolled have been suffering from the disease for more than
two years. The fact that as many as 80% of PLHA waited for two years to enter into
care supportive system after they were detected with HIV also highlights that DLNs
need to strive to approach PLHA in the initial stages. One way is to coordinate with
VCTCs and explain the need to contact such PLHA and create awareness.
The treatment related needs such as information on ART and its availability locally
was expressed by PLHA who are already taking ART than those who are not. Also,
availability of medicines for OI locally and free testing facility for CD4 are preferred
by PLHA on ART. The financial support for families/self and children for school
admission was expressed more by females than males. Also, females prefer to have
someone to stand by when their family deserts and expect some one to solve the
problems arising out of their HIV status. This has implications for DLN — when
The fact that as many as 80% of PLHA waited for two years to
enter into care supportive system after they were detected with
HIV also highlights that DLNs need to strive to approach PLHA
in the initial stages.
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dealing with females, the focus needs to be on family level issues, children’s
education and financial support. Similarly, when dealing with PLHA on ART, the
focus needs to be on treatment issues including ART and OI management. With
regard to economic support, although the difference between enrolled and not
enrolled PLHA is not statistically significant, it is important to find that half of the
PLHA contacted expressed this need. The qualitative phase highlights that enrolled
PLHA prefer economic support in the form of loan, while not enrolled PLHA want it
for clearing their debt.
For the majority of expectations, NGOs and family are least preferred. The majority
depended on government and DLNs. DLN is the preferred channel for regular
counselling to self and family members. DLN should continue to provide emotional
support to PLHA, extend counselling support to families, and solve family problems
arising out of HIV status. DLN is seen as a facilitator particularly for treatment i.e.,
getting the CD4 test done, help obtain a loan etc. which some DLNs are already
providing. The data suggest the enhancement of the activity will yield better results.
This can help in increasing the coverage.
The analysis on comparison of PLHA who have less period of association with
PLHA having longer association with DLN revealed that it takes time to receive
support from networks upto the satisfaction of PLHA. The data clearly shows that
over a period of time, the PLHA who express less or lack of satisfaction now, will
have encouraging attitude in the coming period. Meanwhile, one thing to remember
is that if networks do not address the issue of anonymity, many PLHA may drop out
of the system. This observation is supported by another fact that several PLHA do
not think DLN can maintain confidentiality. Always, DLN has to ensure the sensitive
nature of PLHA is protected and respected. There exists another opportunity to
DLN — in spite of the fact that enrolled PLHA do not think networks can maintain
confidentiality, 88% would be willing to continue in the networks. This is largely
due to the experience or strong belief that DLNs stand by when family deserts and
it solves family problems arising out of HIV. DLNs should capitalise this opportunity
to use these PLHA to widen their reach. As enrolled members are having positive
DLN should continue to provide emotional support to
PLHA, extend counselling support to families, and solve
family problems arising out of HIV status.
Assessing PLHA Expectations Regarding Care and Support Services 19
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attitude towards continuing in the networks, it is useful that DLNs seek support from
these people to reach and convince others who have not yet enrolled.
Implications for Programme Managers
The following actions can improve coverage by the networks and help to meet the
varying expectations of PLHA:
• Prepare documentary films to raise awareness and benefits that it offers, street
plays, hoardings and advertisements. Nevertheless, the present data suggests
addressing the stigma issue while using these media. This would be an attempt
towards increasing the awareness and coverage.
• DLN is indispensable to make sure that they approach PLHA in the initial
stages of infection to avoid disease burden in future and clear their myths/
misconceptions. One of the ways is to coordinate with VCTCs and explain
them the need of contacting such PLHA. At the same time, DLNs can take an
opportunity to show documentary films (as discussed above) regarding networks
so as to make it voluntary yet informed decision of PLHA. The coordination with
VCTC and government hospital is vital in improving the coverage.
• On confidentiality issue, it is suggested that at the time of enrolling a PLHA and
during the outdoor activities, DLNs must make it clear that without the consent
of PLHA, their HIV status will not be made public. Also, it should be made sure
that PLHA’s sensitive nature is protected and respected.
• When dealing with females, the focus needs to be on family level issues,
children’s education and financial support. Similarly, when dealing with
PLHA on ART, the focus needs to be on treatment issues including ART and
OI management. This helps spread word of mouth about the flexible nature of
DLNs and accordingly contribute to increase coverage.
• DLN should continue to provide emotional support to PLHA, extend the
counselling support to the families of PLHA and try to solve family problems
arising out of HIV status.
• Facilitate for CD4 test, in the process of ART initiation. Since providing job may
not be possible to DLNs, efforts need to be concentrated around linking them
with schemes that benefit PLHA. Wherever possible, facilitate the process of
PLHA seeking loans.
• Linkages needed with other stakeholders. However, as seen earlier, some of
the stakeholders are not supportive of DLNs. Therefore, this requires care and
proper planning.
• PLHA already enrolled have strong belief or experience that DLNs stand by
when family deserts and it facilitates solving family problems arising out of
HIV. DLNs should capitalise this opportunity to use these PLHA to widen their
spectrum of activities and reach.
20 Assessing PLHA Expectations Regarding Care and Support Services
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