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Support groups for PLHIV

By Moses Bateganya | 17 Jul, 2013

Dear community, am trying to find out if any programs have evaluated the role of PLHIV support groups. Would appreciate if people could share some resources on whether these interventions have had any impact on HIV related outcomes.



Celestina Nkiruka Onuoha Replied at 12:34 PM, 18 Jul 2013

Dear Moses,
PLHIV support group activities help to build hope for patients when they
see others that have same problem.
It is a good forum for them to bring out their problems. It increases/
prolong their lives. The forum helps to take care of their psycho-social
It creates more time for lectures on adherence (Timing of ARV's,
consequences of missed appointment) etc. It increases Community and family
HIV testing.
It helps to minimize stigma and discrimination in the facility, community
as well as family. Reduces self stigma among PLHIV.
Thanks so much.

Webster Mavhu Replied at 1:52 AM, 24 Jul 2013

Just to let you know that our paper, which describes how support groups are
helpful to HIV adolescents, has been published and is available at:

Pamela Marks Replied at 10:19 AM, 13 Nov 2013

Dear Moses,
our project, USAID ASSIST, is actually doing some work on this area, not the support groups per se but looking at how the chronic care model impactsHIV services. There are several elements of the CCM which include patient self management and community to name 2 of them. patient self management component involves utilizing PLHIVs who have been adhering and doing well on treatment to help support other patients who may have been recently diagnosed or starting treatment. They would provide support through adherence support and sharing their own experiences to motivate their peers. This activity is currently being done in Uganda, and we will be looking at how the elements of this model impact patient outcomes.

karen Gordon-Boyle Replied at 8:30 AM, 14 Nov 2013

Dear Moses, I have interviewed PLHIV who have shared how support groups have helped give them a new lease on life, some have even met their new life partner within the support group setting. Do you need quotes or are you asking for a scientific paper on the matter?


Believe Dhliwayo Replied at 10:27 AM, 14 Nov 2013

Peer Support by PLWHA has been a model that has saved so many lives , I
guess including mine. Clinical information regarding ARVs , adherence and
dealing with side effects are explained using a layman's language. This
helps recently diagnosed to envision and have an idea of how to cope with
their diagnosis , I should quickly point out that this mostly applies to
individuals in the community whose interaction level is the same.

The more educated and professional the more peer to peer for PLHIV gets
complicated unless if its North America , in Africa you would rarely have a
support group of professionals living with HIV.

Efforts are underway to establish these support groups.

Believe Dhliwayo

Sexual Reproductive Health Rights Technical Advisor

Coalition of Women Living with HIV & AIDS -

Makda Building 1st Floor.

Next to (NBS) New Buidling Society Bank -

Along Colbry Road -Area 3 - Old Town.

P.O. Box 2874| Lilongwe Old Town | Malawi - Africa

Email: |


Tele: 265 175 4336 - Ext: 106 | Cell: 265 998 340 910 | Int. #: +1647 557

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Moses Bateganya Replied at 12:51 PM, 14 Nov 2013

Pam, Karen all
Thank you for your comments and suggestions. I have been looking for papers that evaluate the impact of support groups in PLHIV. We have identified about 19 articles but lack any evaluation or program reports showing what support groups have been able to achieve and the services they support.


Gitau Mburu Replied at 3:49 PM, 14 Nov 2013

Dear Moses,

Here are a couple of articles based on the work of the International HIV AIDS Alliance in Uganda that could be helpful. We part of these publications were drawn from program evaluation. We have cited those on the publications themselves, but in case you can't retrieve them, do contact me through ITM or otherwise.

1. Hodgson I, Nakiyemba A, Seeley J, Bitira D, Gitau-Mburu D. Only connect – the role of PLHIV group networks in increasing the effectiveness of Ugandan HIV services. AIDS Care. 2012;24(11):1368–74.
2. Mburu G, Iorpenda K, Muwanga F. Expanding the role of community mobilization to accelerate progress towards ending vertical transmission of HIV in Uganda: the Networks model. J Int AIDS Soc. 2012;15(Suppl 2):17386.
3. Kim YM, Kalibala S, Neema S, Lukwago J, Weiss DC. Meaningful involvement of people living with HIV/AIDS in Uganda through linkages between network groups and health facilities: an evaluation study. Psychol Health Med. 2012;17(2):213–22.
4. Mburu G., Ram, M., Skovdal, M., Bitira, D., Hodgson , I., Mwai, G. W., Stegling, C. & Seeley , J. Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV. Journal of the International AIDS Society. 16, (Suppl 2):18636

Besides these examples, I know that MSF have published examples of peer support groups in mozambique, which might be useful as well.

Gitau Mburu Replied at 1:19 PM, 15 Nov 2013

Dear Moses,

Below are a coupe of studies from the Alliance that you might find useful

1. Hodgson, Nakiyemba, Seeley and Gitau-Mburu. Only connect- the role of PLHIV gropu networks in increasing the effectiveness of Ugandan HIV services. AIDS care. 2012; 24(1):1368-74

2. Mburu G, Iorpenda K, Muwanga F. Expanding community mobilisation to accelerate progress towards ending vertical transmission of HIV in Uganda: the Networks model. J INt AIDS Soc. 2012; 15(Suppl 2):17368

3. Kim et al. Meaningful involvement if people living with HIV/AIDS in Uganda through linkages between network groups and health facilities: an evaluation study. Psychol Health Med. 2012; 17(2)213-22.

4. Mburu G, et al, Resisting and Challenging Resisting and challenging stigma in Uganda: the role of suport groups of people living with HIV. JIAS. 2013, 16(Suppl 2): 18636.

MSF have also researched around this in mazambique, and we have cited their work in the following study:

Mwai GW, Mburu G, Torpey K, Frost P, Ford N, Seeley J. Role and outcomes of community Heath workers in HIV Care in sub-saharan Africa: A systematic review. J Int AIDS SOc. 2013. 16:18586.

Pamela Marks Replied at 8:49 AM, 21 Nov 2013

Hi all,
In our project the issue we have run across is also dealing with is that there seems to be no clear guidance on the "how to" of a support group or use of expert patients. Our project, USAID ASSIST, has been working from our lessons learned to develop guidance on how expert patients can be recruited, supervised etc. Expert patients are just one element of peer support groups.
Anecdotally from my previous work as a clinician in Guyana using HBC workers who were PLHIV, I saw marked improvement in my patients. Some presented with issues of not being able to accept their diagnosis or disclosing, and with support, later themselves became peer mentors and patient advocates. Unfortunately seems that more needs to be done to document and to ascertain the benefits of support groups etc.

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