Back in 2009 when I began to be involved in the programs of my AIDS Service Organization (ASO) I honestly wasn’t aware of muchthat they were doing. First I heard of the Positive Prevention – Train the Trainer course, but I didn’t sign on to do it until their second go round. It was during that course I learned of the GIPA Principals. I then applied to sit on the Board of Directors and they were bringing in some facilitators to teach us about GIPA/MIPA.
So what exactly is GIPA/MIPA?
GIPA is the Greater Involvement of People living with HIV/AIDS. MIPA is the Meaningful Involvement of People living with HIV/AIDS
Every course or training I have done since then has been based on the GIPA Principles, working with my peers, and I help my ASOs provide the programs that will educate and help my peers and I on how to live better with the virus.
This March I was invited back to Montreal by ACCM (AIDS Community Care Montreal) to participate in a new facilitator training that I believe has been a long time coming. Having been involved in the HIV community at the local, Provincial and National levels and being online in social media, I've seen there is a need for a program that will see PHAs train the recently diagnosed. Who, after all, is better to learn from than their peers. And from ACCM comes a program that begins that discussion, called the My Life With HIV project.
The Program Introduction (Reprinted with permission.)
The program My Life With HIV is inspired by the reflections of people living with HIV (PHAs) regarding their needs and services as provided through the public health system. According to a self-generated needs-assessment survey (ACCM, 2011 Needs Assessment Survey), which reached 186 PHAs via five clinics and two ASOs in Montreal:
24% of respondents were not on treatment; 16% of those were women and 84% were men. 75% of those not on treatment identify “starting medication” as a “very important” information topic.
Only 17% of those not on treatment agreed with the statement “I am knowledgeable about HIV treatment” and 56% checked “I prefer to participate in face-to-face discussions about HIV treatment”.
What makes this program innovative is that after having contacted national and local organizations, as well as conducting Internet research, there appears to be no support group models for newly-diagnosed people considering treatment, in English or French, in Canada.
The My Life With HIV program is a series of six workshops of three hours each, addressing newly diagnosed HIV positive people who are treatment-naïve and considering starting antiretroviral treatment. The program aims to improve HIV positive persons understanding of the daily and long-term effects of treatment and to provide them with practical tools to improve their overall health. It is composed of specific modules that people living with HIV can do in a group setting, thus enabling them to transmit the acquired knowledge to other people living with HIV who are unable to attend the workshops.
My Life With HIV targets newly-diagnosed, treatment-naïve, English and French speaking PHAs throughout Canada by providing a welcoming and safe space to encourage participation from all walks of life. The target age range is 20 to 60 years old.
Through discussions in support groups, HIV positive participants will have the opportunity to identify challenges in their lives at both the individual and societal levels (e.g. changing sense of identity, navigating new and complex treatment information, stigma, disclosure, etc.) and to be linked to a community of people going through similar stages in terms of their relationship with the virus. By vocalizing their thoughts and sharing their experiences with others, they are able to develop their own strategies to cope and address these challenges.
This project also seeks to promote the health of PHAs by increasing their treatment knowledge and channeling their intention to explore the merits and drawbacks of starting treatment. This is done through both informal one-to-one support and a workshop series. The workshops encourage participants to recognize their own health needs, identify the barriers to achieve those needs, and to develop the strategies necessary to surmount those barriers. In this regard, our activities provide the space and tools for PHAs to become active social agents towards improving their overall health and wellbeing. Ultimately, the program will create a space for treatment-naïve people living with HIV to develop the knowledge and confidence to understand and address their ow health needs.
As a measure of success, and in respecting the GIPA/MIPA principles, a person living with HIV who has completed the workshop series and possesses facilitator skills would be the perfect facilitator for the following series. With a brief facilitator training, My Life With HIV program can be a meaningful example of a program ‘by and for’ PHAs.
Expected Results and Follow Up
- Integration of the program “My Life with HIV” into your organization
- Improvement, adjustment, modification
- Reflect your local reality
- Keep open the communication
Participants came from several destinations across Canada.
- Positive Living North, BC (2)
- Positive Women's Network, BC (1)
- PWA Toronto, ON (2)
- ACCKWA - AIDS Committee of Cambridge, Kitchener, Waterloo & Area, ON (2)
- ARCH – HIV/AIDS Resources & Community Health – Guelph ON (Formerly AIDS Committee of Guelph Wellington (1)
- AIDS Committee of Ottawa, ON (1)
- AIDS St-John, NB (2)
- AIDS New Brunswick, NB (1)
- AIDS Coalition of Nova Scotia (1)
- Healing Our Nations (Atlantic Canada) (1)
The Training was facilitated by Project Coordinator Sylvain Beaudry
Sources used in the development of the program:
The Greater Involvement of People Living With HIV (GIPA)
One Foot Forward: A GIPA Training Toolkit
Funding came from:
- Government of Canada, Ministry of Health HIV/AIDS Community Development Program
- Gilead Sciences, Canada Inc.
As stated in the “expected results”, this is not a one size fits all program as we learned in the training. Over the two days we contributed to the training by sharing what is happening in our ASOs and how it might look when we bring it home. I have spoken with a staff person at my ASO about the program and there is interest to hear more about it, what we learned and have us do a workshop sometime later this year.