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PFI Global Fund Mini Report |
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Understanding
Support Group Meetings
of People Living with HIV/AIDS
PBackground
Population Foundation of India (PFI) is
managing the program "Access to Care
and Treatment—ACT" in the six high HIV
prevalence states of India supported by
the Global Fund to Fight AIDS,
Tuberculosis and Malaria (GFATM). Indian
Network for People Living With HIV/AIDS
(INP+) plays a key role in providing care
and support services to PLHAs. One of the
activities of this program is strengthening
and actively engaging district level net-
works of people living with HIV. Besides
other activities, every month district level
networks (DLNs) organize support group
meetings for PLHA. The support group
meetings (SGM) are attended by PLHAs
who may or may not be on antiretroviral
treatment. A typical support group meet-
ing usually takes about 4 hours and about
25 to 30 PLHAs attend. The meeting pro-
vides an opportunity for people living with
HIV to share their life experiences,
and discuss about various issues related to
living with HIV.
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This study was conducted to assist DLNs
to better organize support group meetings
and maximize the benefits available to
PLHAs through these meetings.
In spite of the fact that support group meeting is an
important component of the services provided for and
by PLHAs, there is paucity of published material on
understanding why and how these support group
meetings are conducted; what are the experiences of
PLHA attending these meetings; and how useful these
meetings are. There is no dearth of relevant material
on the support group meetings for cancer patients and
alcohol/injecting drug users in western literature.
However, no systematic documentation exists on sup-
port group meetings conducted by and for PLHAs. In
the program, Access to Care and Treatment, DLNs are
organizing support group meetings in different ways. It
was not clear how DLNs plan and conduct support
group meetings and how the agenda/content of the
meetings are decided. Thus, it was important to know
these details and whether the variations in the content
and process of meetings affected the expected out-
comes of support group meetings.
Although, in general, support group meetings are
considered to be useful, there is almost no systematic
documentation from India on the effectiveness of sup-
port group meetings for PLHAs. For example, it is gen-
erally believed that these support group meetings pro-
vide a platform for PLHAs to share their experiences;
combat their loneliness; and improve their self-esteem.
Hence it was decided to explore the various benefits of
support groups meetings and document how PLHAs
perceive the usefulness of participating in these sup-
port group meetings. Thus, this study was conducted
to assist DLNs to better organize support group meet-
ings and maximize the benefits available to PLHAs
through these meetings.
Goal, Purpose and Research Questions
Goal: To assist district level networks to better plan and organize support group meetings; and to assist
PLHAs in maximizing the benefits of participating in the support group meetings.
Purpose: To describe the various ways in which support group meetings are being conducted by district level
networks of INP+ and to explore critical influences these meetings have on the lives of PLHA.
The study also intended to understand the usefulness of these support group meetings as perceived by PLHAs
who participated in them. This was not an intervention or evaluation study and, although the quality of life of
some proportion of PLHAs might have been improved by participating in support group meetings, measuring
effectiveness of the support group meetings was not the focus of the study. However, findings from this study are
found to be useful to improve the effectiveness of the support group meetings.
Research questions: The key research questions were:
1. How the support group meetings for PLHA in DLNs are planned and conducted?
2. What are the perceptions of PLHA on the usefulness of the support group meetings they had participated in?
3. How the support group meetings have influenced the lives of PLHA who participated in them?
UNDERSTANDING SUPPORT GROUP MEETINGS OF PEOPLE LIVING WITH HIV/AIDS
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Methodology
The study design was prospective, exploratory and
descriptive. The study population included PLHAs who
participated in SGM, staff of DLN responsible for plan-
ning and organizing SGM, board members of networks
and some of the experts with relevant expertise/expe-
rience. Among six states of ACT project, networks from
three states viz., Andhra Pradesh, Tamil Nadu and
Maharashtra were selected to take into account if any
regional variation were studied. One PLHA network
from the Union Territory of Pondicherry was also
included for the study. Out of the 10 networks chosen,
four DLNs are relatively older and are functioning prior
to ACT project so that the study could document differ-
ences in planning and conducting the support group
meetings if there were any.
The qualitative research methods used were: key
informant in-depth interviews, group interviews, in-
depth interviews with PLHAs who participated in the
Among six states of ACT
project, networks from three
states viz., Andhra Pradesh,
Tamil Nadu and Maharashtra
were selected to take into
account if any regional varia-
tion were studied.
support group meetings and non-participant observa-
tion of SGMs. Informed oral consent was obtained from
all the study participants. The table below shows the
extent of interviews carried out:
Methods
Final sample size
Purpose
In-depth interviews with participants 24 PLHAs participated in SGMs
(on ART and non-ART)
To understand experiences and usefulness
of meetings
Group interviews with DLN staff
10 groups each with 3 to 4 DLN
staff (in charge of SGMs)
To find out why and how the support group
meetings for PLHA in DLNs are planned
and conducted
Key-informant interviews
8 board members of the district/state To find out how and why the support group
level networks having extensive
meetings for PLHAs in DLNs are planned
experience of working at grassroots and conducted
level and having sound insight of the To understand what support board members/
issues for conducting SGMs.
state level networks are providing in
organizing SGM
Support Group Meetings observed Six
Observations to see what kind of people
participated, their level of participation
UNDERSTANDING SUPPORT GROUP MEETINGS OF PEOPLE LIVING WITH HIV/AIDS
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Salient Findings
How support group meetings of PLHA are
planned and organized?
Planning for SGM
Prior to conducting an SGM, the staff of DLN organ-
ise a 'planning meeting' to decide about the content of
the meeting and the way to conduct it. The content is
usually decided based on the areas suggested by the
PLHAs attending the meeting or the issues raised during
the last SGM. The draft agenda is discussed with the
board members and their inputs are sought before final-
izing the agenda. The usual venue of SGM is DLN office,
but sometimes it is organized at government community
health centers or partner-NGO-run hospitals etc. Most of
the DLNs conduct SGMs on specific days in a month. The
duration can be anywhere from 3 hours to 6 hours—
sometimes a day-long meeting. Both old members and
new PLHAs are invited to participate in the SGMs.
Comfort for new PLHAs in the SGM
DLN staff orients new PLHAs about the functions and
concept of DLN and SGM. A brief counseling is also pro-
vided before they join the SGM. In SGM, they are intro-
duced to jovial older members and seated in between
them or they are seated next to the staff of the DLN so
that they feel welcomed. Some DLNs give the option of
just observing the proceedings of SGM and not intro-
duced to the group unless the new PLHA is comfortable.
Usually basic information about HIV/AIDS is provided in
almost all meetings for the benefit of new members.
Range of topics included in SGMs
Most of the time support group meetings start with a
prayer or welcome address, which generally follows intro-
duction of DLN and participants and experience sharing.
External resource persons (like Doctors, Lawyers, Social
Welfare department from District Collectorate,
Nutritionists etc.) are also invited in the SGMs to give
detailed information on nutrition, treatment issues, gen-
der, government schemes, legal issues etc.
Following topics are covered in most of the SGMs
regularly. The extent of information shared is decided
according to the need of group:
• Importance of joining network
• Why we need to attend SGM
• Basics of HIV/AIDS (transmission modes, difference
between HIV and AIDS, etc.)
• Antiretroviral therapy (ART)
• Importance of taking proper and adequate nutrition
• Importance of maintaining self-hygiene
• Nutrition
DLN staff maintains a register for documenting the
minutes of the meeting. These minutes are referred
while developing the agenda for the next SGM. Some
DLNs also take photographs of the meetings.
Socio-economic status of PLHAs
PLHAs who attend the SGMs are usually from the lower or lower-middle socio-economic status. PLHA from all
religions and castes could be seen attending SGM.
A limited number of female sex workers, men who have sex with men (MSM) and Hijras may also be attend-
ing the SGM. Even among the HIV-positive, MSM and female sex workers do not reveal their sexual orientation to
their fellow group members because of fear of discrimination.
While the support groups are primarily for PLHAs, sometimes family members of PLHAs who are not HIV-pos-
itive are also allowed to be present in SGM. If PLHA could not come for SGM because of some reasons, their fam-
ily members (parents, siblings) attend SGM to know about any new information and to clarify their queries.
Spouses may come together or alone.
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The older members and the staff usually
encourage new members to share their
experiences. New PLHAs may be quiet for the
first few meetings but usually 'open up' in the
subsequent meetings.
Participation of PLHAs in SGM
Most of the support group meetings are observed to
have active participation of attendees with the help of
good facilitators. PLHAs are given equal opportunities to
communicate about their experiences. They are encour-
aged to discuss sensitive issues in separate informal dis-
cussions like women health issues or issues related to
relationships. The facilitators give a chance to each
member to talk; encouraging newcomers and other
PLHAs to give their perspectives or opinions about par-
ticular issue; and in making the newcomers feel com-
fortable. However, in some meetings, some members
(not necessarily older members) dominate the discus-
sions. Sometimes PLHAs contact the staff/counselor
after the meeting to discuss about their personal issues.
Barriers in attending SGM
Most of the PLHAs have pre-conceived notions about
SGM in terms of fear of the unknown or fear of discrim-
ination; however, after attending it once, the percep-
tions are changed. Other barriers in attending the SGMs
are: fear of disclosure, no one to take care of children
at home, timing and/or duration clashes with other
duties/priorities, sometimes self or spouse falls ill etc.
Issues to be addressed for
conducting SGM
The facilitators of the SGM are usually the staff in-
charge for organizing the meeting and most of them are
PLHAs. PLHA facilitators feel that their open status actu-
ally helps in building rapport with the new participants
and instilling confidence in them. But these facilitators
had no formal training on conducting/organizing SGM or
in facilitation skills. They expressed need for training for
facilitation skills, communication skills, HIV/AIDS treat-
ment updates, materials to read and distribute and also
guidelines and training for conducting SGM. Some of the
participants requested compensation for the daily wages
lost due to attending the meeting.
Articulated and unarticulated
benefits of attending support
group meeting: perspectives of
PLHA regarding usefulness of SGM
Some of the articulated benefits listed by PLHA are:
End of sense of isolation
"I was not sure about what others will do in such
meetings. But I was surprised to see so many people
like me. I knew I was not the only one…"
Alleviates depression
"I forget that I have HIV while I attend the meet-
ings." Initial suicidal ideation and tendencies changed
after I started attending SGMs.
Helps in letting down emotions
The experience sharing sessions in the SGM act as
effective channels to let down their emotions and help-
ing them in decreasing their mental burden.
'Rationalizing' as a mechanism to get
psychological comfort
PLHA feels that they are not alone in suffering from
the various problems but there are many others like
them.
Learning from others' experiences
"As I came to know how he handled that difficult sit-
uation of disclosing his HIV status to his wife I also came
to know how I can do that to my wife. It helped me."
Comparing one's situation to other’s and
getting a sense of comfort
"At least I'm better than them—some satisfaction
that I am not suffering to the extent some do."
Some get consoled that "Fortunately that did not
happen to me."
Safe space to share feeling and emotions
"It is based on mutual trust. I need not hide my
[HIV] status [in this group] and hence I need not hide
my feelings too."
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“But I was surprised to see so many
people like me. I knew I was not the
only one…"
Social support system ("The third network") -
PLHAs develop friendship, bond with one another and
ultimately developing strong social ties with other PLHAs.
"This relation is not blood-based [meaning it is not
through traditional family system] but because we have
one thing common with us. There are no caste or reli-
gious differences. Everyone likes everyone. This relation
is better than our [biological family] relationships."
Information from SGM
Before attending SGMs they did not have much
information about even the basic issues of HIV/AIDS as
the healthcare providers did not have sufficient time to
explain to them or because they were not explained in
an easily understandable manner.
Building self-confidence and self-esteem
"…willpower, because of HIV I should not always be
worried but work like any other person."
"I enjoy living each day" and "now that I know about
HIV/AIDS I also go back and tell four other persons
about how in spite of HIV we can live like anybody else."
"Now I no longer have guilty feelings. I was feeling
bad about myself and blaming myself for the situation
and continuously worried about that.”
Changing perspectives on having HIV
"I feel this is like any other disease. We have ART
now. Don't the people with Diabetes and BP [hyperten-
sion] take medications and live for a long time."
"This is a small insect in your blood, should we keep
worrying about that always."
"If I did not have HIV, I would not be planning for
the future. But now, we know we are going to die
sometime or another and I take care of my family bet-
ter; plan for my children and stopped bad habits
(meaning quit smoking and drinking alcohol)."
Below is the list of benefits of attending the SGM
which were not often articulated by PLHA but they
came out during the interviews with the participants
and key informants:
• Monetary help by means of education of their chil-
dren, groceries for needy PLHA, small-scale self-
employment (buying goats, setting up petty shops),
development of self-help groups, etc.
• Knowledge on government and bank schemes.
DLNs are also doing advocacy with such organisa-
tions so that PLHAs can avail maximum benefits
from the schemes.
• Resolving family conflicts. When family members
attend SGM they accept PLHAs in the family.
Sometimes network leaders also play "mediator" or
"matchmaker" role for PLHAs when conflicts arise
between family members and PLHAs.
• Increasing self-esteem and decreasing self-stigma.
Sometimes SGMs also help them in developing lead-
ership qualities.
• Health benefits as SGMs enhance knowledge of
PLHAs in
J PLHA-sensitive healthcare providers or clinics
providing quality services
J Availability of free CD4 testing
J Enabling them to take informed decisions about
starting ART
J Giving awareness about not getting involved with
quacks for wrong treatment
• Sexual and reproductive health and rights—In SGMs
safer sex practices are discussed and condom
demonstration is performed with a special emphasis
to sero-discordant couples. DLNs also refer needy
PLHAs to VCTC and PPTCT programs, gynecologists
and STI specialists. However, other than condom no
contraceptive method is being discussed.
• Motivates women who are unaware of their status
to undergo HIV testing and also helps with mediat-
ing conflicts with their husbands.
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How the support group meetings have
influenced the lives of PLHAs who
participated in them?
SGM or DLN per se enables PLHAs to have informa-
tion on a range of issues on a single platform, while
other sources may not be catering to all the needs of
PLHA at one go. For instance, doctors usually do not
have time to talk in detail about the basics of HIV/AIDS,
no proper and systematic follow-up counseling is prac-
ticed for addressing the needs of PLHA, their family
members do not get adequate information on treatment
issues etc. On the other hand, the network through its
various activities provides tailored information and
client-oriented counseling. SGM as one of its activities
helps PLHA to discuss sensitive issues like disclosure of
positive status, not infecting others, sexual health etc.
SGMs, especially for PLHAs on ART, help in promoting
adherence as in this forum they get to understand the
importance of ART and the effects of missing a dose.
The results of the study show that support group
offers the individuals various direct and indirect benefits
and also leads to having new perspectives in life. The
participation assists the individual in understanding the
self and others. Also, this study describes that through
support groups, PLHA participants are better aware and
capable of dealing with the situations that are common-
ly encountered by other participants. It is also under-
stood that support groups assume great significance as
they provide opportunities through which social support
is available to the participants. Social support is provid-
ed in the form of mutual guidance, providing monetary
and emotional support, and providing feedback. As dis-
cussed earlier, support groups are regarded as the 'third
network', the primary network being kinship and neigh-
bour relations, and the secondary network being vari-
ous professional support systems like the relief offered
by social-welfare and health-care settings. It has been
found that the information and psychological support
they get from the support group members are comple-
mentary to the psychological support they get from
their families, friends and spouses. The group helps
them in coping up with the problems they face; help
them prepared for anticipated challenges; remove the
feeling of abnormality and make them more capable of
dealing with potentially traumatic experiences.
Support group meetings serve multiple purposes.
They are useful in socializing; sharing and getting infor-
mation; getting peer and professional counseling; and
getting psychological and emotional support. As seen
under the previous section, SGM benefits PLHAs who
attend as well as who do not attend SGM. For example:
the advocacy activity of the networks that resulted in
age relaxation for widows living with HIV (or who lost
their husbands to HIV) will be useful for even those
PLHAs who had never been to SGMs. In addition to the
unique benefits of attending SGM, it serves as one of
the many entry points for PLHAs to get various servic-
es from the networks and other agencies (linkages and
referrals). SGM is closely linked with community mobi-
lization and organizing for rights.
There is still scope of improving SGMs at different
levels by different stakeholders.
The networks involved in conducting SGM need to:
• Document success stories and lessons learnt out of
the advocacy activities carried out on the issues
identified in SGM
• Initiate bereavement support meetings for spouses
and negative family members
• Train the SGM staff on facilitation skills
• Ask one of the network staff to co-facilitate the SGM
• Not use certain English terms and jargons which
may not be understood by all PLHA
• Link up with community organizations working with
various marginalized groups like MSM, FSW, and IDU
so that there can be cross-referrals.
Other stakeholders need to have great role to play in
making SGM more effective through:
• Preparing operational guidelines for conducting var-
ious types of SGM effectively
• Preparing a training manual for training facilitators
and co-facilitators of SGM
• Conducting training programs on organizing SGM for
facilitators and co-facilitators of SGM
• Capacity-building in documentation of the lessons
learnt in conducting SGM
• Conducting training on how to be sensitive to the
needs of PLHA from various subpopulations (MSM,
Hijras, IDU, FSW) in SGM and how to mobilize these
subpopulations of PLHA
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Various methodologies in support group meetings
1. Mini-dramas
Some DLNs organize mini-dramas to convey
messages—providing information about HIV
disease/treatment; showing discrimination in health-
care settings; conveying that network is there to sup-
port them (Drama titled 'Even if your relations leave
you network will not").
2. Debates ('Pattimandram')
Some DLNs in Tamil Nadu organize structured
debates, which are called 'Pattimandrams' (in line with
the local culture to talk for and against a particular
issue and then trying to come to a consensus).
Some examples of debate topics:
• "Whether taking ARVs is beneficial to PLHA?"
• "Whether HIV-positive mother can breastfeed her
child?"
3. Dance and songs (cultural programs)
Once in a while some DLNs organize 'cultural pro-
grams'—especially on certain days like World AIDS
Day—in which PLHA and people from marginalized
groups also perform.
4. Songs by participants during SGM
To break the monotony in SGM, the participants are
encouraged to sing their favourite songs—songs can be
religious, classical or from cinemas.
5. Food recipes demonstration
In addition to telling what to eat and how to cook
nutritious food, some DLNs may even demonstrate
cooking some nutritious and tasty foods. Some of the
recipes that had been taught in a DLN include 'Egg
bajji' and "Murungaikai Kootu" (Drumstick sidedish).
6. Games
Various games are also used in some DLNs as
'warm-up' exercises or as energizers. In one DLN, a
'laughing session' is held routinely in which the partici-
pants have to just laugh without any reason (based on
the local tradition of having 'laughter clubs'). Through
some games, messages are also conveyed. For exam-
ple, in the 'clapping hands' game, the participants are
asked to start with clapping with one finger first, then
two fingers and so on. They will be explained that as
more fingers join the sound becomes louder. This is
used to demonstrate the strength of joining forces and
joining hands to achieve common goal.
POPULATION FOUNDATION OF INDIA
B-28, Qutab Institutional Area, Tara Crescent, New Delhi - 110 016
Tel.: 011-42899770, Fax: 011-42899795
Email: popfound@sify.com Website: www.popfound.org