A ground-breaking, community-based Canadian study exploring the relationship between housing and health for people living with HIV has been honoured with the second Robert Carr Research Award. Positive Spaces Healthy Places: HIV, Housing and Health Research in Action – a 5-year longitudinal study funded by the Canadian Institutes of Health Research – documented the impact of housing on both the physical and mental health-related quality of life for people living with HIV.
Results from the study showed that approximately half of participants experienced unstable housing, over 30% were at risk of losing their homes, and 87% were unable to meet basic food, clothing and housing costs. Unstable housing was also associated with lower CD4 counts, higher viral loads and higher mortality rates.
“We all know intuitively that housing is critical to good health,” says Sean Rourke, principal investigator for the Positive Spaces Healthy Places study. “But we didn’t have the hard data we needed to make a strong case to persuade our governments to invest in housing and support services.”
“The study has become an essential tool for informing policy makers of the critical need for housing within the HIV sector, and it’s facilitated an increase in funding for housing and support services,” says Keith Hambly of Fife House, a project partner. “With our new housing and support services, we’ve seen measurable positive differences in people’s health outcomes and quality of life.” The project has also sparked similar research and practice initiatives in other parts of Canada, specifically in British Columbia, Alberta and Quebec.
Positive Spaces Healthy Places also became a model for conducting collaborative research guided by the needs of people living with HIV. Begun in 2005 in Ontario, Canada, the study was a true partnership among AIDS service organizations, people living with HIV, academics and provincial and federal policy makers. The question came from the community, and the community – both service providers and people living with HIV – were an integral part of the research. The study made a particular effort to engage Indigenous people as partners on the research team and as study participants.
One of the study’s key strengths was its embrace of research as a form of collective action. People living with HIV worked together with researchers to gather information, build a case, solve problems and craft solutions.
“People living with HIV were engaged at every stage of the research – from designing the study through to data collection, analysis and disseminating the findings,” says James Watson of the Ontario HIV Treatment Network, one of the project partners. “Meaningful peer involvement translated into better participant engagement, more complete data collection and a stronger connection between the community and researchers.”
Over a five-year period, peer research associates conducted interviews with over 600 people living with HIV in Ontario. Many participants were from hard-to-reach or underrepresented communities; they shared stories with their peers in the hopes of helping to demonstrate the link between housing and well-being.
As part of its commitment to human rights, the study provided training and meaningful employment for 15 peer research associates, most of whom have since gone on to work with other research teams and to train other peers across Canada.
"It makes us proud and grateful to see Robert's vision so beautifully captured in this research which combined all the elements he believed in: real community involvement, participatory action research and results that can change peoples' lives for the better," says Carolyn Gomes, Executive Director of the Caribbean Vulnerable Communities Coalition.
The findings from Positive Spaces Healthy Places have helped to build a critical mass of evidence about the importance of stable housing to the HIV care cascade and the health and well-being of people living with HIV. Housing is now recognized as a critical part of health and health care in key policy documents, including: Ontario, Canada’s new HIV strategy, efforts by places such as New York State to end the AIDS epidemic and the National HIV/AIDS Strategy in the United States.
As a social justice advocate and activist, Robert Carr was committed to collaborative research that honoured and improved the lives of people living with HIV. Positive Spaces Healthy Places fully embraced these goals. "Positive Spaces Healthy Places was the overwhelming winner of a nominations scoring process which included representatives of each of the Award sponsor organizations,” says Mary Ann Torres, Executive Director of ICASO. “That it performed so well amid a pool of excellent programs from around the world speaks to the quality and impact of the program."
The Robert Carr Research Award is a joint initiative of the International AIDS Society, the International Council of AIDS Service Organizations, Human Rights Watch, the Caribbean Vulnerable Communities Coalition, the Global Forum on MSM & HIV, and the Johns Hopkins Centre for Public Health and Human Rights. The winning research project, Positive Spaces Healthy Places, will be announced at the 21st International AIDS Conference in Durban, South Africa during the Robert Carr Memorial Lecture on 19 July 2016, 18:00-19:30, Global Village Room 2, International Convention Centre.
The Positive Spaces Healthy Places research team would like to dedicate this prestigious award to the community team members who contributed so much and who died during or after this project: Marisol Desbiens, Michael Hamilton, Devica B. Hintzen, LaVerne Monette, Jim Truax, and Pius White.
For more information about the Award, please visit www.icaso.org/robert-carr-research-award-and-memoriallecture. For more information about Positive Spaces Healthy Places, please visit www.healthyhousing.ca.