ACT Research Day 2010
April 29, 2010

AGENDA

12:00 pm
Registration and Lunch

Master of Ceremony
Angel Parks, AIDS Committee of Toronto

1:00 pm
Welcoming Remarks
Laurie Edmiston, Canadian AIDS Treatment Information Exchange

1:10 pm
HIV and Poverty
Tim McCaskell, Activist, Writer, Educator

At the beginning of the AIDS epidemic in the 1980s, the commonalities among people with AIDS (PWAs) helped promote the emergence of a PWA identity. Although there were always cultural, economic and social differences between people living with HIV, such differences were overshadowed by the commonality of an apparently inevitable early death. Just as important, the economic and social differences between them were mitigated by a social safety net which redistributed wealth and kept most people above the poverty line.

Since then, however, we have seen profoud transformation in our society. Neoliberalism, an economic and social philosophy that calls for the shrinkage of government, lower taxes and free trade, has been adopted and implemented by successive governments on behalf of our country's elites. This process has led to growing disparity among people living in Canada, disparity that has also disproportionately impacted groups already socially vulnerable because of their race, culture, immigration status, gender, etc. What is the impact of growing class differences on the spread of HIV and thei lives and needs of people living with HIV/AIDS?


2:10 pm
Break


2:30 pm
Theory and Practice of the Principle of Greater Involvement of People Living with HIV (GIPA)
Alex McClelland, Activist, Educator, Researcher
Michael Wilson, McMaster University, OHTN

The principle of Greater Involvement of People Living with HIV/AIDS (GIPA) is a key element of the HIV response. But the practical realization of this rights-based paradigm is often misunderstood or overlooked in practice. Operationalizing GIPA in our organizational work can take many forms and has multiple benefits. This session will discuss the GIPA principle through two presentations. In the first presentation, Alex McClelland will discuss some current initiatives on GIPA from around the world, including the GIPA Report Card, and the benefits and challenges of implementing the GIPA principle in research, interventions and policy development. In the second presentation, Michael Wilson will discuss findings related to the implementation of GIPA in community-based research (CBR) in the Ontario HIV/AIDS sector. Based on a survey (n=39) and in-depth, semi-structured interviews (n=25) with senior managers in Ontario AIDS service organizations, Michael and colleagues found that -- compared to researchers and frontline service providers -- people living with HIV/AIDS tended to be the least involved in all stages of community-based research projects. Qualitative data revealed complex barriers that make meaningful PHA engagement in CBR difficult, including: HIV-related stigma; health-related challenges; ‘credentialism’; lack of capacity to engage in research; other issues taking priority; and mistrust of researchers. Facilitating factors included valuing lived experience; training and mentoring opportunities; financial compensation; trust building; and accommodating the needs of people living with HIV/AIDS.


3:00 pm
Research on PHAs Health and Well-being


Families, HIV and Housing
Saara Greene, McMaster University

The Families, HIV and Housing study is a community-based research study aimed at investigating the housing needs and experience of parents living with HIV/AIDS in Toronto. Based on 17 in-depth qualitative interviews with HIV-positive African and Caribbean mothers, this paper will argue that although HIV-positive mothers experience a number of shared housing-related issues and concerns, these challenges are exacerbated for HIV-positive mothers from African and Caribbean communities. This is due to the multiple systemic issues that marginalize mothers as a result of their cultural, ethnic and racial history and their current social positioning as HIV-positive women from racialized communities in Canada.


Gay Poz Sex: Finding your own way
Rick Julien, AIDS Committee of Toronto

The primary objective of Gay Poz Sex (GPS) is to implement an evaluate a sexual health and HIV prevention program for HIV-positive gay and bisexual men in a community-based research framework. The project is currently evaluating its positive effects on participants and the community through three surveys given pre-program, post-program and at a three-month follow-up, to assess any changes in participants' well-being and sexual behaviours. GPS is a collaboration of the AIDS Committee of Toronto with a team of researchers and HIV-positive men. The team works under the direction of the Poz Prevention Working Group, a committee sponsored by the Ontario AIDS Bureau. The program consists of seven two-hour, weekly meetings. The first two meetings explore participants' current understanding of sexual health and HIV disclosure through interactive exercises and brief presentations of educational materials from guides developed by the Toronto People With AIDS Foundation and the HIV/AIDS Legal Clinic of Ontario. The guides are provided to the participants. The final five meetings use Motivational Interviewing to help participants explore their individual current sexual behaviours. The participants are helped by the peer facilitators to identify areas of ambivalence, the pros and cons of their current sexual behaviours, challenges to making a change, desirable outcomes, fears and hopes, and strategic goal planning. Participants are assisted in focusing on goals that will positively impact their sexual health and the health of their sexual partners. The GPS presentation will review the importance of including PHA peers in program development and delivery.


Ontario HIV Fertility Study
Shari Margolese, Women's College Research Institute

As a result of the increased life expectancy and improved quality of life of people living with HIV (PLWHIV), and the fact that many of them are of reproductive age, many PLWHIV are considering having a family. This, in turn, leads to consideration of issues relating to fertility and pregnancy planning. Historically, PLWHIV were discouraged from making plans to reproduce. Now, the medical community is more accepting of these individuals' or couples' wishes to have children. However, relatively little data exists regarding those wishing to start families and the support, services and resources they require, especially in North America.

The Ontario HIV Pregnancy Planning Initiative (OHPPI) is a community-based program designed to assist PLWHIV in Ontario with their fertility and pregnancy planning needs. This initiative has been divided into four phases. Phase 1 is the background phase aimed to determine the need for fertility and pregnancy planning services for PLWHIV in Ontario, the availability of such services, and the barriers preventing access to these services. Phase 2 is the stakeholder linkage phase, and is aimed to identify and connect with key stakeholders, including HIV and fertility experts, obstetricians, pediatricians, psychiatrists, researchers, policy advisors and community members. Phase 3 is aimed to develop and pilot programmatic intervention that will lead to provincial capacity building, knowledge translation and improved health care. Phase 4 is the implementation, evaluation and further knowledge translation phase.

This presentation will outline the progress of the OHPPI and similar national initiatives, with an emphasis on the involvement of PLWHIV.


Mobilizing Ethno-Racial Community Leaders Against HIV/AIDS Stigma and Discrimination
Devan Nambiar, Committee for Accessible AIDS Treatment

Mobilizing Ethno-Racial Community Leaders Against HIV/AIDS Stigma and Discrimination is a community-based action research project developed by the Committee for Accessible AIDS Treatment (CAAT) in partnership with Asian Community AIDS Services, Africans in Partnership Against AIDS, the Alliance for South Asian AIDS Prevention, the Black Coalition for AIDS Prevention and the Centre for Spanish-Speaking Peoples. It aims to engage ethno-racial leaders from the media, faith-based and social justice sectors in the African/Caribbean/Black, East Asian, Southeast Asian and South Asian communities, to develop strategies to reduce HIV stigma and discrimination, and to enhance HIV prevention.

Building on a model of collective empowerment and capacity building used by CAAT in community-based research, this study includes the direct and meaningful involvement of PHAs in its design and research processes. The project team consists of community-campus partnership, a project advisory committee with community leaders, five PHA peer research assistants (PRAs). The PRAs received a series of trainings on project and outreach and recruitment, focus group facilitation, Nvivo data coding, data analysis and interpretation. In addition, PRAs are mentored and encouraged to take part in knowledge translation and exchange (KTE) activities, including conference presentations and community forums. This presentation highlights the strategies, benefits and challenges in integrating GIPA into research.


Moderator: Eric Mykhalovskiy, York University


5:30 pm
Closing Remarks
Hazelle Palmer, AIDS Committee of Toronto


6:00 pm
Networking Reception