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Conducting Support Group Meetings for People Living with HIV_Handbook for support Group Organizers |
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Conducting Support Group Meetings
for People Living with HIV
Handbook for Support Group Organizers
January 2007
POPULATION FOUNDATION OF INDIA
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POPULATION FOUNDATION OF INDIA
Conducting Support Group Meetings
for People Living with HIV
Handbook for Support Group Organizers
Contact details:
Program Management Unit—The Global Fund Project
Population Foundation of India (PFI)
B-28, Qutab Institutional Area,
Tara Crescent, New Delhi-110016, India.
Ph: +91-11-42899770
Fax: +91-11-42899795
Website: www.popfound.org
E-mail: mary@popfound.org
Acknowledgments:
Our sincere thanks to Mr. KK Abraham, Mr. N Kumar and the team in
'Access to Care and Treatment' (ACT) program for their useful comments
and suggestions in developing this handbook.
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
TABLE OF CONTENTS
Abbreviations
Preface
Introduction
Starting a new support group for PLHA
How to plan for conducting a support group?
What to do on the day of support group meeting?
Facilitation of the support groups
Involving family members and caregivers in support groups
Conducting support groups for PLHA on ARVs
Mobilizing resources for conducting support groups
Learn more about support groups
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Appendices:
1. Support group—some basic guidelines
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2. Sample agenda of an SGM
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3. Examples of various methods used in support groups for PLHA
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4. An indicative list of issues discussed in a psychosocial support group.......... 30
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POPULATION FOUNDATION OF INDIA
ABBREVIATIONS
AIDS - Acquired Immuno-Deficiency Syndrome
ARV - AntiRetroVirals
ART - AntiRetroViral Therapy or Treatment
CBO - Community-Based Organization
DLN - District Level Network of people living with HIV
HIV - Human Immunodeficiency Virus
IDU - Injecting Drug Users
INP - Indian Network for People living with HIV and AIDS
MSM - Men who have Sex with Men
NGO - Non-Governmental Organization
PFI - Population Foundation of India
PLHA - People Living with HIV and AIDS
SGM - Support Group Meeting
SLN - State Level Network of people living with HIV
TB - Tuberculosis
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
PREFACE
In early 1990s, in a discriminatory environment with near lack of support from family members
and friends, many people living with HIV in India were beginning to organize themselves to
provide support to one another. Many established PLHA networks in different parts of India were
started in this manner—as an informal meeting of like-minded PLHAs who were desperate to meet
others in similar situations. Today, these support groups have rapidly grown into networks and
provide various services to PLHAs in different parts of India and also advocate for their rights.
Currently, Indian Network for people living with HIV (INP+) has more than 20 state level PLHA
networks and 100 district level networks. Many more networks are still emerging.
Population Foundation of India (PFI) is managing the program "Access to Care and
Treatment—ACT" which is supported by the Global Fund to Fight Against AIDS, Tuberculosis and
Malaria (GFATM). One of the activities of this program is strengthening and actively engaging dis-
trict level PLHA networks of INP+ in the six high prevalence states. Besides other activities, every
month, these district level networks organize support group meetings (SGM) for PLHAs who may
or may not be on antiretroviral treatment.
Though conducting SGM is a typical component in the services provided for and by PLHAs,
there was no empirical study in India that aimed to understand why and how these support group
meetings are conducted; what are the experiences of PLHAs attending these meetings; and how
effective these meetings are. Hence, PFI conducted a multi-state exploratory and descriptive
study on SGM to better understand these issues and came out with a report.
One of the felt needs expressed by the staff members of the PLHA networks who participated
in the study was to have guidelines on how to organize support group meetings so that across
the networks there will be some commonalities in organizing the support groups and enhance the
effectiveness of support group meetings. PFI agreed to this expressed request for developing a
handbook since it is felt necessary to have some common minimum standards for conducting SGM
by the networks supported by it. The findings of earlier study were used in developing this
handbook.
We, at PFI, believe that this handbook will be useful for not only emerging and established PLHA
groups and networks but also to NGOs and CBOs working with various marginalized populations—to
start support groups for PLHAs identified in their constituencies. Thus, we hope that this handbook
will serve as one of the tools to improve the quality of life of PLHA in different parts of India.
AR Nanda
Executive Director
Population Foundation of India
New Delhi
December 2006
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POPULATION FOUNDATION OF INDIA
INTRODUCTION
The purpose of this handbook is to guide the PLHA groups, networks and
individuals who intend to start a new support group for people living with HIV or
to better organize the existing support groups. The need to have a handbook like
this was expressed by the various PLHA networks who were interviewed while
conducting a special research study on support group meetings of PLHA. This
handbook tries to fulfill that expressed need.
The study conducted by PFI has shown that support groups provide a platform
for PLHA to share their experiences; combat their loneliness; and improve their
self-esteem. Support groups provide PLHA a safe space to share their experiences
and gain new friendships; an opportunity to discuss about their health and other
emotional issues; help various sub-populations of PLHA including those who are
female sex workers and men who have sex with men to form their own peer
groups to share and mutually learn from one another's experiences. Support
groups also serve as an entry point to link PLHA to treatment, care and support
services available in the government and nongovernmental organizations.
In simple steps, this handbook tries to address the basic things that one needs
to know to organize a support group meeting for people living with HIV.
(Note: In this handbook, 'support group organizer' refers to one or more
individuals who may or may not be PLHA; a PLHA group or network; or an NGO.)
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
STARTING A NEW SUPPORT GROUP FOR PLHA
One or more PLHA may decide to meet with others like them and may organize
informal meetings with other PLHA which later becomes a support group. Also,
some existing PLHA groups or NGOs who are providing services to PLHA like drop-
in centers and referrals may want to start and run their own support groups.
If you want to start a new support group you need to:
• Assess whether there is a need for starting a support group: Identify some
persons who share your interest in starting, not simply participating in a
support group.
• Assess the needs felt or expressed by the PLHA whom you meet. Discuss with
them about your idea of starting a support group and get their suggestions.
• Discuss with and get suggestions from existing PLHA networks or NGOs who
are already running support groups for PLHA or other populations.
Who needs a support group?
• Once you have decided to start a support group for PLHA, you need to have
an idea about the nature of the group:
– Who will be the support group attendees?
– Is it going to be for those who have expressed interest in joining the
support group or is it for those who have felt the need for having a support
group?
– Whether you are going to start a group for specific subpopulations of
PLHA—men, women, IDU, MSM, and Hijras—or for a mixed group?
• Find out ways to reach out to PLHA who might be benefited by attending
support groups.
• Decide about the timeframe of the support group. Support groups can be
either ongoing or time-limited. An ongoing support group can run for an
indefinite period of time. A time-limited support group is set up so that the
group members know the exact date when the group will begin and end.
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Following is a list of things that needs to be taken into consideration while
deciding upon the timeframe of your support group.
Ongoing support group
• If you are planning to start an ongoing group then you need to decide on the
size of the group. Twenty to thirty members is a good number. You can start
with even smaller number. The size of the group greatly depends upon the
resources you have—resources in terms of staff and finance.
• In case more number of participants express their interest in joining the group
then you can think of starting another group.
• You can start as many support groups as you want but you should have the
resources to run and sustain the support groups.
Time-limited support group
• As the name indicates time-limited support group has a specific start and end
time. Most PLHA networks in India have little experience in running this kind
of support group.
• Time-limited support group means, if you start a support group for 20 PLHA,
then without opening that support group to other people, you will follow a
schedule to suit the needs of the group members and towards achieving a
commonly agreed goal (like having achieved adequate self-confidence to take
care of themselves). After 10 to 15 months the support group will be dissolved
since it is assumed that by that time the members would have developed
positive coping mechanisms and acquired necessary knowledge.
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
HOW TO PLAN FOR CONDUCTING
A SUPPORT GROUP?
For those PLHA groups already running support groups, new PLHA can be
'identified' by outreach; those PLHA attending government ART Centres; PLHA
brought to SGM by older participants of SGM; and PLHA who 'drop-in' by hearing
about the network through various resources (media, word of mouth, etc.).
Planning for the SGM
• To plan for the support group meeting to be organized, the staff in-charge of
organizing the support group meeting can have a 'planning meeting'.
• During the 'planning meeting', the staff can review the proceedings of the
previous meeting (and refer to the minutes of the meeting in the register)
which help them in deciding the content for the next SGM. For example, if the
PLHA had expressed that they need information on legal issues related to
PLHA then the DLN staff make arrangements for bringing a lawyer to the next
SGM to address them.
Before organizing a support group it is important to carefully plan the following:
• Date, time and venue of SGM
• Agenda
• Resource persons
• Identifying and inviting PLHA for SGM
• Preparing for logistics at the time of meeting
• Dividing the responsibilities among the staff.
Deciding the agenda of SGM
• Decide the agenda based on the emerging needs identified from the
discussions in the last SGM or needs expressed or suggestions given by PLHA
who attended the previous meetings.
• Get the inputs of the board members of the PLHA networks and other
individual activists.
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• In the first one or two meetings you can focus on explaining the group about
the importance and the purpose behind organizing a support group. As a
support group organizer it is important for you to understand the group
dynamics—the type of interactions that happen within the group since most of
the members might be new to support groups and they might not know or
understand the meaning or concept behind attending the support group.
Day, Venue, and Time of SGM
Day
• After getting suggestions from PLHA, choose days that are convenient for most
PLHA to attend.
• You can organize SGM on weekends because most PLHA might be on holidays
or it can be organized on particular weekdays. Check with your members if you
want to conduct the support group on Sundays since some people might want
to attend Church in the morning. You can then think about organizing two
support groups on different days in a month.
• Often it is better to conduct SGM on a particular day in a month (for example,
every second Saturday or every third Sunday). This will help the participants
in remembering the days as well as to plan for SGM in advance (example: can
finish some of the activities in advance so that they can keep that day free
from other commitments).
Venue
• You can organize the SGM in your office if there is enough space to hold a
meeting for that many number of people.
• You can also organize SGM in other neutral places like community health
centers; space provided by NGOs or government hospitals.
• Some small group members even donate their space on a rotational basis.
Time
• A typical SGM of 20 PLHA focusing on sharing some information and
psychosocial support through experience-sharing can take at least 3 hours.
• You can conduct an SGM from 3 to 6 hours depending upon the agenda and
the resources (including time) available to you and participants.
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• Be sure to convey the start time and the duration of the SGM in advance to
everyone to avoid undue delays in starting the SGM.
• You need to allow a 'bathroom break' if the group meets for longer than
an hour.
• If the meeting is planned for more than 3 hours it is important to organize
meals (lunch) for the participants. Otherwise, you can provide snacks
and drinks.
• Finishing time: You might need to extend the meeting length in certain situations
where emotional issues have surfaced during the meeting that requires additional
time in order to provide support to a member. But the entire group should make
the final decision as to whether to stay or leave. The facilitator or co-facilitator
can always stay later to talk to a member who needs additional support.
Check the meeting space for:
Privacy—it is important that people feel comfortable attending a meeting.
Size—it is important that the room be large enough to accommodate all the
members and also offer the opportunity to break out into smaller groups if
needed.
Seating—Circle format—the preferred seating arrangement for a support
group is to sit in a circle. The circle format allows everyone in the support
group to see all other members. People communicate using their voice, but
most people like to see facial expressions and body language to
communicate more effectively. The circle format also allows eye-to-eye
contact, which is important in establishing a sense of trust among members.
The circle format may be difficult for larger groups. If the group is too large
to accommodate the circle format, consider splitting the members into two
or more circle groups.
Ensure for adequate lighting and ventilation.
Source: www.hcvadvocate.org—Hepatitis C Support Group Manual.
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Contacting and inviting PLHA for the SGM
• You might have already gathered the contact details of PLHA and also got their
permission in what ways you can reach out to them.
• Thus, by calling them or sending them a mail, clearly convey the details
regarding the date, time and venue of the forthcoming meeting.
• You might also ask your older participants to invite and accompany other PLHA
identified by them.
• You might also receive calls or enquiries from new PLHA who are referred from
NGOs, government hospitals, etc.—where you have left the information
regarding SGM.
Organizing support groups if you have large membership
(if more than 30)
If you have a large number of PLHA who would like to attend support groups,
then depending upon the staff and financial resources you might need to prioritize
which members to call for the support group. The following are some of the
strategies adopted by some experienced PLHA networks:
• You can arrange two or three separate SGM in a month using different staff or
volunteers. However, this depends on the availability of adequate number of
staff and/or volunteers and their time; and also financial resources.
• You can invite different members on a rotational basis if only one or two SGM
are organized per month.
• You can prioritize whom to call taking into account different factors like how
long they are attending and who would be more benefited by attending the
support group.
• You can divide the larger group into two or three small groups and ask some
trained volunteers (who might be previous SGM attendees) to organize SGM in
different localities simultaneously.
Identifying external resource persons
You can invite external resource persons to SGM to explain certain topics. The
topics can be decided based on the needs expressed by the SGM attendees. The
various topics and the type of resource person usually invited are listed below.
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• Nutrition (Nutritionist or counselor)
• Treatment issues (Doctor or VCTC counselor)
• Government schemes (Social Welfare Department from District Collectorate Office)
• Legal issues (Lawyer)
• Gender issues (NGO activists)
Inviting external resource persons
• Send letter of invitation with information about your objectives and target
group as well as how long you expect them to speak for.
• Ask the resource persons what information they need and whether they
require overhead projector, charts, etc.
• Make sure that the resource persons know where the meeting venue is and
how to reach it.
• If you have funds to run a support group then you can even think about
providing a small honorarium to the external resource persons for their time
and efforts.
Preparing for logistics at the time of SGM
• Based on the activities that you are planning to do in the particular meeting,
you need to arrange logistics.
• If you are planning to conduct a group work, you need to have chart papers
and marker pens.
• If you are going to screen an educational session on nutrition, you might need
a television and video player.
Dividing the responsibilities among the staff
• You should divide the responsibilities among the SGM organizing team. In the
pre-planning meeting you can discuss about how to divide the responsibilities
among yourselves. This will avoid confusion and duplication of work.
• The roles and responsibilities of the staff organizing support group can change
from one meeting to other. It may be necessary not to assign the staff
organizing the support group with a specific task for all the meetings. You can
keep changing their roles from meeting to meeting—to avoid monotony.
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WHAT TO DO ON THE DAY OF SUPPORT
GROUP MEETING?
On the day of Meeting:
• Greet and welcome the participants. Someone specifically needs to take care
of this task.
• Register the name of the participants in the meeting register. They can give a
short name or a nick name. Some may even want to give a pseudonym since
they might be concerned about confidentiality.
• If participants are willing, you can get their signature. If the support group is
funded by an external agency, the signed participant list will serve as a
supporting document that can be produced at the time of evaluation.
• Make arrangements for documenting the minutes of the meeting. This can be
done by one of the staff or a volunteer.
Welcoming new members
• New members may not be comfortable about being in a group of unknown
people. They may not know what to talk about and how much to reveal about
themselves.
• If a new participant comes for the first-time, then someone (like counselor,
social worker or field staff) can orient that person about the role and functions
of the network, and SGM. A brief orientation about the organization and
support groups can be provided to these new persons before they join the
support group. To make the new PLHA feel welcomed, they can be introduced
to older members and seated in-between them or they can be seated next to
the staff of the network.
• New PLHA attending the SGM for the first time can be given the option of just
observing the proceedings of SGM in the initial one or two support groups. Unless
the new PLHA feel comfortable, they should not be introduced to the group.
Establish ground rules
Ground rules need to be stated in every meeting if new members keep
joining in.
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• Make sure that all the group members agree to these ground rules.
• Members should be able to suggest modifications or additions.
• This process also promotes ownership of these rules by the group members
and helps in having personal control.
• Listening, compassion and empathy are important characteristics of all
participants. Explain what those are.
Some suggested ground rules:
(Adapted from: Starting A Support Group—©Empowerment Concepts 2004
and Hepatitis Support Group Manual, www.hcvadvocate.org)
1. Everyone will have a chance to speak, but will not be under obligation to do so.
2. Everyone agrees that any and all information disclosed in this group is private
and totally confidential.*
3. All expressions of feeling, including laughing and crying, are allowed with the
exception of physical violence.
4. All should agree that they will not release any information that is shared by
any member of the support group to any external agency or individual.
5. Participants should feel free to get up and move around during the course of
the meeting should they feel the need to do so.
6. If any member has any suggestions or criticisms then they are encouraged to
voice them to the group facilitator or staff.
7. Everyone should agree to always arrive on time—this is a courtesy to other
group members.
8. Everyone agrees that only one person speaks at a time.
9. Everyone agrees that they will not interrupt others—it is disrespectful to the
person speaking and to the other group members.
10. Everyone agrees not to monopolize the conversations.
(*Explain how it is very important that what is said in the support group stays within the group,
and is not discussed outside the structure of the group. People have to feel safe to share their
thoughts, feelings, frustrations and fears. They will not do this if there is a danger that what they share
will be discussed outside the safety of the group).
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11. Everyone agrees to keep any discussion in the first person—always use "I".
12. Everyone agrees not to discriminate other PLHA from marginalized groups like
sex workers, injecting-drug users, men who have sex with men and Hijras.
13. Everyone agrees not to attend a meeting under the influence of any non-
prescribed drugs or alcohol.
Meeting proceedings
• You can start the meeting with a prayer song or with welcome address by the
staff or the network leader. You can even ask for a volunteer from the group
to sing a prayer song.
• During the welcome address you can give a brief introduction about your
network and its functions. This is important especially if some PLHA are
attending the meeting for the first time.
• Ask the participants to introduce themselves. The names of the participants
can be introduced by a game which also serves as an 'ice-breaker'. For
example, the participants can be asked to introduce persons sitting next to
them or those persons whom they have not met before.
• You can use your creativity to avoid monotony and make the group more
interactive in nature (please refer to box-3 for some examples).
• You can share the agenda of the meeting with the participants.
• Start the session by providing basic information about HIV/AIDS. This will help
the new members.
• Following this, there can be an 'experience-sharing' session in which the
participants are allowed or asked to talk about the concerns/issues of
importance to them.
• After this, there can be a session from an external resource person.
You can invite external resource person to deal with specific topics like
nutrition or ART.
• Refreshments like tea or coffee can be served during the break hours.
• Lunch can be served once the meeting is over.
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Basic information that can be provided during each SGM:
• Basics of HIV/AIDS (modes of transmission, difference between HIV and
AIDS, etc.)
• Importance of taking proper and adequate nutrition
• Importance of maintaining self-hygiene
• Brief information about antiretroviral therapy (ART) and treatment adherence.
Topics that can be dealt by the support group organizers:
SGM organizers might take some topics in detail. For example, those topics could be:
• Nutrition
• Antiretroviral therapy (ART)
• Why we need to attend SGM?
• Importance of joining PLHA network.
(Note: Topics that can be handled by external resource persons are given in
the previous section.)
Documentation
• You can depute one person (like a social worker or volunteer) as a note-taker
to document the proceedings of the SGM especially regarding the decisions
that were taken during the meeting and what actions to be taken as a follow-
up. Sometimes the co-facilitator can be a note-taker.
• Maintain a separate notebook (register) to document the proceedings of the
SGM. This register can be later referred to when developing the agenda for the
next SGM.
• You can also take photographs of the proceedings for documenting those
meetings. However, before taking any photographs get the group consent
from the participants.
• Documentation of the follow-up activities of the issues raised in the meeting is
also needed. For example, follow-up of discrimination in the local hospital
(mentioned in the support group) would be to meet with the hospital
authorities. If the hospital management introduces anti-discrimination policy in
that hospital after the network intervention then it is a success story, which
needs to be documented.
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FACILITATION OF THE SUPPORT GROUPS
Facilitators:
• The facilitators of the SGM can be the staff in-charge of organizing the support
group meeting.
• The facilitators can be either PLHA or professional social workers.
• You can have PLHA as facilitators since their open status might help them in
building rapport and instilling confidence in the participants.
• The facilitators or co-facilitators can be of either gender. The gender of the
facilitator usually needs to match the gender of the participants. If there is a
mixed group (men and women) then the facilitators can be a man and a
woman.
• However, there are certain instances where a homogeneous group might be
needed and the facilitator should be of the same gender as that of the
participants. For example, if there is going to be a discussion on sexual and
reproductive health issues of HIV-positive women, participants might prefer to
have a women-only group and prefer women to facilitate/co-facilitate the
discussion. Otherwise, the participants might not be able to discuss freely and
openly about such sensitive topics.
Difference between facilitator and co-facilitator:
• As a support group organizer you should be able to clearly define the role of
the facilitator and the co-facilitator.
• The facilitator's main role will be to moderate the group discussions. The co-
facilitator will be helping the facilitator in moderating the SGM by watching the
group members actively and make sure that all the members participate in the
discussion and also to get their feedback.
• A co-facilitator is highly recommended for larger groups (e.g. if more than 15
members).
• Two persons can take turns in being a facilitator or co-facilitator.
If the facilitator is a PLHA: While it would be good to have an openly HIV-
positive facilitator, the organizer should make sure that the facilitator takes
adequate breaks and have a co-facilitator. Also, the turn of being the facilitator
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can be rotated between this HIV-positive person and another person—to avoid
burnout. However, some PLHA facilitators may not want to be open about their
status and we should respect their decision of whether and when to be open about
their status. These persons might also need support from the organizers as
nondisclosure to other PLHA attending SGM might be an additional stress for them.
Qualities of an effective facilitator:
The qualities of an effective HIV support group facilitator include:
• Knowledge of HIV/AIDS: A person does not need to be an expert on HIV,
but should be knowledgeable about HIV to some extent to help correct
inaccurate information.
• Trust in others and their capacities (co-facilitators and participants).
• Ability to create an atmosphere of confidence among participants.
• Compassion: Feeling empathy for people.
• Conflict: Ability to deal with conflict and effectively manage potential con-
flicts between group members.
• Communication skills: Ability to listen and to convey that you understand
what is being said.
• Non-judgemental: Ability to be open to members' experiences and not
make judgements based on what they have done or what they tell you.
• Flexibility in changing methods and sequences as needed.
Sources: Adapted from Hepatitis C Support Group Manual, www.hcvadvocate.org. Web Version 2.5
July, 2006 and http://www.lymphnotes.com/article.php/id/280/
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INVOLVING FAMILY MEMBERS & CAREGIVERS
IN SUPPORT GROUPS
• Often we tend to forget the importance of offering a support network for
family, partners, friends, and caregivers of PLHA. Just like people living with
HIV, their loved ones need information and emotional support.
• Family members, partners, and friends may sometimes feel powerless when
they are confronted with the fact that someone they love may get sick. Those
who have lost their loved ones may need support as well since they have to
deal with issues surrounding the death.
• If a PLHA is on treatment, one person will be taking care of that PLHA. There
can be emotional issues in the relationship between PLHA and their caregivers.
Thus, the caregiver might also need support and counseling on strategies to
help the person on treatment.
• Thus, though the support groups are primarily for PLHA, sometimes family
members and partners of PLHA who are not HIV-positive can be allowed to be
present in SGM.
• If a PLHA could not come for SGM because of some reasons then their family
members, partners or other caregivers can be allowed to attend the SGM to
get to know about any new information and to clarify with any queries and
then share with PLHA.
• In case of the sero-discordant (one of the couples is HIV-negative) or sero-
concordant couples (both husband and wife are HIV-positive) the couples can
attend together or alone—depending on the composition of the group and
their willingness. Some PLHA networks separately organize support groups for
couples.
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
CONDUCTING SUPPORT GROUPS
FOR PLHA ON ARVs
In all support group meetings, basic information about ARVs needs to be
provided and discussed. But, here we will focus on conducting separate support
groups for PLHA on ARVs since they might need specific support for adhering to
the treatment regimen prescribed by the doctor. These PLHA might thus be
benefited by attending support groups exclusively for PLHA on ARVs.
After you have adequate number of PLHA (about 15 to 20) who are on ARVs,
you can start a separate support group for them. This support group can be a
mixed gender group and non-parental caregivers of the children can also be
invited. These PLHA might also continue to attend the 'general' support group
meetings for PLHA.
The process of conducting support group for PLHA on ARVs is similar to that
of the 'general' SGM. However, the content and the discussion of the ARV support
group will be focused on providing information about ARVs and adhering to
treatment.
Keep the focus of the discussion on the challenges faced by PLHA in adhering
to the treatment regimen/schedule; success stories of PLHA who have near 100%
adherence; and discussion on innovative ways of taking medications on time
without missing any dose.
Below is a list of things that can be learnt by a PLHA by attending this support
group:
• What are the various indigenous ways used by PLHA to remind them of taking
their medications on time and without missing doses?
• What are the ways by which one can avoid running out of drugs during travel?
• How to recognize some of the side-effects of ARVs earlier?
• What to do to avoid some side-effects of ARVs?
• What questions to ask the doctor during the clinical visit?
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POPULATION FOUNDATION OF INDIA
You can invite external resource persons (like a doctor or a counselor) to brief
the group about issues related to ARVs and to clarify any technical queries the
group might have.
Remind the group that the information shared in the group is to mainly provide
them some background information about ARVs. They need to consult their
doctor in relation to the specific ARV regimen they are on.
Make sure that the facilitator corrects any misconceptions or misinformation
being conveyed in the group discussion. If some PLHA are focusing mainly on
the side-effects of ARVs, encourage them to also talk about the positive things
they are experiencing after they had started taking ARVs.
You can allow PLHA who are hesitant to take ARVs (even though they are
eligible) to attend the support group for PLHA on ARVs. The idea is to clarify any
misconceptions they might have about ARVs. After seeing many healthy PLHA
who are on ARVs and after hearing their testimonies, they might now be willing
to take ARVs.
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
MOBILIZING RESOURCES FOR CONDUCTING
SUPPORT GROUPS
In general, organizing a small support group does not require much money if
all the participants can take care of their travel expenses and share the expenses
towards food or refreshments.
However, often the support group meetings are also attended by PLHA from
lower socioeconomic class thus making it difficult for them to pay for their own
travel expenses especially when they are coming from suburban areas or far away
from the support group venue.
Some PLHA networks get support from local or national agencies for
conducting support group meetings. Depending upon the number of attendees
and type of venue, the expenses may come around anywhere from Rs. 1000 to
Rs. 3000.
A budget should always be prepared at the beginning of the planning stage
irrespective of whether the support group is funded by any external agency or
not. You have to estimate all the possible expenses. A model budget for
conducting a 3-hour support group meeting for 20 PLHA is given below.
Item
Amount
Refreshment and Lunch
Rs. 40 per person x 20 = Rs. 800
Reimbursement for local travel
expenses for those who need
(actual expenses)
Rs. 500 maximum
Reimbursing local travel expenses of Rs. 200
the external resource person
Total
Rs. 1500
(Note: The venue charges and stationery charges are not included here. It is
assumed that the meeting is held in the office space of the PLHA network or an
NGO.)
If the support group is not funded, often the expenses you budgeted can be
covered by volunteers and/or in-kind donations, but it is important to have a
realistic picture of support group expenses.
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POPULATION FOUNDATION OF INDIA
The following are the various ways of mobilizing resources for support groups:
• Donations from members of the support groups including a nominal
membership fee.
• Identifying suitable sponsors for the SGM—who can support partially or fully.
(For example, sponsoring for refreshments).
• Donations from local business agencies.
• In-kind donations from local NGOs or CBOs (example: offering a free space for
meeting; donating packets of rice; etc.).
LEARN MORE ABOUT SUPPORT GROUPS
There are many resources to help you learn more about running and
facilitating an effective support group for PLHA.
1. Some experienced PLHA networks may offer training on how to start or
effectively run a support group. If not training, at least they might allow you
to attend some support groups so that you can learn by participation. You
need to call or mail them about any such opportunity. You might get a list of
PLHA networks at the district level from the office or website of Indian
Network for People living with HIV and AIDS (INP)—www.inpplus.net.
2. If you do not have any PLHA network nearby, then you can identify and attend
other types of support groups conducted in your local area to learn from them.
For example, support groups for cancer patients and alcohol anonymous.
3. Look at publications on other types of support groups that may help guide you
through the process of starting your own group. Below is the list of some
sources on support groups for PLHA and other persons suffering from chronic
illness.
• Gail Barouh Support groups: The Human face of the HIV/AIDS epidemic.
LIAAC, New York, 1992.
• Starting a Support Group—Empowerment Concepts 2004.
• Hepatitis C Support Group Manual. www.hcvadvocate.org. Web Version 2.5
July, 2006.
• http://www.lymphnotes.com/article.php/id/280/
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
APPENDICES
APPENDIX 1
SUPPORT GROUP—SOME BASIC GUIDELINES*
Have a regular time, date, and meeting place so that people can depend on
when and where the meetings will be.
As an outreach activity, ask members to bring a friend who might be
interested.
Advertise your meeting well in advance. Post announcements in
hospitals, NGOs and CBOs (if they permit it).
Have a contact person listed with your announcements so people can call for
more information.
Have a time limit for the meeting and stick close to it.
When you are having group discussions have a time-limit for speaking and
enforce it. Make sure everyone who has something to say gets a chance to speak.
Have a little social time for people to chat with each other.
Treats are good too! Refreshments tend to make conversation easier.
Have an outside presenter sometimes—but not always. Ask the group what
they'd like to do at future meetings.
Try to give all participants a sense of ownership and inclusion. Find roles
for everyone who is willing.
Asking people to do specific tasks. Just asking for "help" may not get many
responses.
*Source: www.lymphnotes.com, http://www.lymphnotes.com/article.php/id/280/
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POPULATION FOUNDATION OF INDIA
APPENDIX 2
SAMPLE AGENDA OF AN SGM
(Below is an actual agenda used in one of the SGM organized by an experienced
PLHA network. Words within square brackets are comments.)
9.30-10.00 am
Registration
10.00-10.15 am
Welcome address & Introduction
[e.g., by PLHA network leader]
10.15-10.30 am Self-introduction of the participants
10.30-11.30 am Experiences-sharing [moderated group discussion]
11.30-11.45 am Tea-break
11.45-12.30 pm Basics on HIV/AIDS & ARVs [by PLHA network staff]
12.30-1.00 pm
Nutrition for PLHA [external resource person's
presentation & discussion]
1.00 pm
Lunch
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CONDUCTING SUPPORT GROUP MEETINGS FOR PEOPLE LIVING WITH HIV
APPENDIX 3
EXAMPLES OF VARIOUS METHODS USED
IN SUPPORT GROUPS FOR PLHA
1. Mini-dramas
You can organize mini-dramas to convey messages—providing information
about HIV disease/treatment; showing discrimination in healthcare settings, etc.
2. Structured debates
You can organize structured debates (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' to inform the participants include:
• "Whether taking ARVs is beneficial to PLHA?"
• "Whether HIV-positive mother can breastfeed her child?"
3. Dance and songs (cultural programs)
You can organize 'cultural programs'—especially on certain days like World
AIDS Day—in which PLHA and people from marginalized groups can be given a
chance to perform.
4. Songs by participants during SGM
To break the monotony in SGM, you can ask some volunteers from the group to
sing their favorite songs—songs can be religious, classicals or from popular cinemas.
5. Food recipes—Demonstration
In addition to telling what to eat and how to cook nutritious food, you may
even demonstrate cooking some nutritious and tasty foods.
6. Games
You can organize various games as 'warm-up' exercises or as energizers.
Through some games, messages can be conveyed. For example, 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.
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POPULATION FOUNDATION OF INDIA
APPENDIX 4
AN INDICATIVE LIST OF ISSUES DISCUSSED
IN A PSYCHOSOCIAL SUPPORT GROUP
• Disclosure of HIV status
• Children's future
• Opportunistic infections and treatment
• Stigma and discrimination faced by PLHA in healthcare settings
• Depression and coping mechanisms
• Basics of HIV/AIDS
• Property inheritance and legal aid
• Pros and cons of getting married to another HIV-positive person
• Conception and giving birth to a 'negative baby'
• ARVs and side-effects
• Co-infections (TB, Hepatitis-B, etc.)
• Life insurance and medical insurance
• Financial assistance and availability of suitable jobs
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