Status positive: Supporting women immigrants and refugees with HIV/AIDS

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A routine blood test is part of the process for anyone seeking landed immigrant status in Canada. Yet, for some people entering this country—in particular those from countries where HIV/AIDS is endemic—the test may reveal an HIV positive status. Suddenly, the stress of being a new immigrant or refugee is compounded by a stigmatized illness. Being in a new country, not necessarily speaking English or French, and not having any idea of where to get support is an extremely isolating experience. Add to that HIV positive status and children to look after and the situation quickly becomes overwhelming.

In 2005, an estimated 39 million people were living with HIV worldwide; 17.6 million of them were women. According to the Public Health Agency of Canada, between 1998 and 2004 there were 15,876 new HIV infections and 2,989 AIDS cases in Canada; 467 of the new HIV infections and 340 AIDS cases involved immigrants and refugees. Women accounted for more than half (51.6%) of the new HIV infections and almost 42% of the AIDS cases.

With Canada’s Citizenship and Immigration system ill equipped to provide the necessary support and information for newcomers with HIV/AIDS, AIDS Service Organizations (ASOs) and government-funded projects help fill in the gaps. However, stigma is a major barrier even to seeking help. Refugees in particular may be afraid to disclose their HIV status for fear of deportation or, in some cases, for fear that family members back in their home countries would be in danger if their status were known. This keeps many people from seeking the help they need.

The Government of Canada’s Federal Initiative to Address HIV/AIDS provides funding for HIV/AIDS prevention and support programs and research and public awareness through the Public Health Agency of Canada and ASOs across the country. The Initiative’s goals include: prevention of new infections, slowing disease progression and improving quality of life, reducing the socio-economic impacts of HIV/AIDS, and supporting global efforts to prevent infection and address the impacts of the disease. The Initiative describes three policy priorities “to guide federal action on HIV/AIDS”: 1) partnership locally, nationally and globally, especially with community-based initiatives; 2) integration of health-care programs and services to address barriers and improve accessibility; and 3) accountability through annual reporting in the World AIDS Day Report (published annually on December 1st). In collaboration with community organizations, researchers and others, the federal government helped create a national framework for action on HIV/AIDS in Canada from 2005 to 2010. This so-called “blueprint for action on HIV/AIDS” was released in October 2005 with the strategy document Leading together: Canada takes action on HIV/AIDS.

A collaborative federal strategy on HIV/AIDS is commendable; however, the lack of women’s involvement in HIV/AIDS research and decision making is a significant problem that results in limited access to treatment and supports specifically for women. In 2005, a number of HIV-positive women, HIV/AIDS organizations, and women’s health and women’s rights groups in Canada formed the coalition Blueprint for Action on Women and HIV/AIDS to increase women’s involvement in Canada’s HIV/AIDS strategy. The Canadian Women’s Health Network is a member of the coalition which released its “manifesto” and a report card on women and HIV in Canada prior to the 2006 World AIDS conference in Toronto.

Some programs and supports prove exceptions to the rule. Here are three projects that demonstrate some of the successful community-based initiatives to support women immigrants and refugees with HIV/AIDS in Canada—from a community kitchen in Vancouver, and community theatre in Ottawa, to a training and support pilot project for refugees in Montreal. 

Sahwanya Community Kitchen: Bringing African women with HIV together in Vancouver

For African women living with HIV, Vancouver can be a lonely place. This didn’t surprise me, a woman from Rwanda who arrived in Vancouver in 2004 and experienced the isolation first hand. But the experience did make me think about what might be done in response. A conversation with Dr. Rolando Barrios, a Vancouver doctor working with patients with infectious diseases really brought the situation home: Dr. Barrios said that he sees African people with HIV dying in Vancouver, not from lack of access to treatment, but due to sheer isolation.

My first suggestion was to arrange hospital visits for patients to ease the isolation, but Dr. Barrios knew that this idea wouldn’t work. In his experience, most African people living with HIV don’t want to be publicly identified, lest they suffer from discrimination and stigma associated with HIV and AIDS. We both agreed that what would work was a program that Positive African women could choose to attend and meet other women from African countries. And so the idea of the Sahwanya Community Kitchen was born.

The word “sahwanya” in the Rwanda-Burundi region of Africa refers to the common struggles that bring people together—a fitting name for this collective of African women with HIV supporting one another socially, medically and spiritually.

Created for and coordinated by African women with HIV, Sahwanya Community Kitchen is a program where once a month women and their children get together to share food that they prepare together. Operating out of the Bridge Clinic in downtown Vancouver, the program provides an opportunity for women to make friends, share their needs and worries and learn new coping skills in a linguistically and culturally sensitive place. The women talk about how HIV affects their lives and communities in a stigma-free and non-judgmental environment. Organizers describe it as a place for ideas to be born, strength to be shared, and challenges to be met.

Women attending the kitchen for the first time are free to participate as they wish, although they are expected to sign a confidentiality agreement. Because they come from different African communities, some are less comfortable than others in identifying themselves as HIV positive. They worry about having their HIV status revealed in their communities, where everyone may know everyone else’s business. Organizers stress the importance of the confidentiality agreement, telling women “it is the law to guard confidentiality.”

After cooking together, and eating the meal that’s prepared, the women have some time to talk amongst themselves—sharing their everyday challenges or learning new skills from invited guest speakers while the children play down the hall, supervised by volunteers from AIDS Vancouver.

“We won’t live by hiding ourselves,” says Julia, one of the Sahwanya members. “We encourage people to bring family issues—that’s the point! But we don’t force anyone to talk.”

With the children out of earshot, women can speak freely without the worry of their children hearing. Disclosure of HIV status to family members and friends is a popular topic of discussion. Since the community kitchen began in June 2007, and most of the children who have attended are 8 years old or younger, disclosure to children has not been a major issue for the women—yet. But organizers are very aware that it will soon become an issue for many of the women. The possibility of children discussing their mother’s HIV status presents a difficult challenge for the women, who want to make their own decisions about how and when they disclose this.

The Positive Women’s Network and the Oak Tree Clinic help promote and support the program. And, along with supervising the children, AIDS Vancouver initially helped organizers with project development.

Sahwanya is one way to ease the isolation that African women living with HIV face. As it says on the poster, “Let’s break the chain of isolation and pull together for our common good.” The community kitchens are held on Saturdays once a month at the Bridge Clinic in Vancouver.

Jeanne Nzeyimana is the founder of Sahwanya whose goal is to make a positive impact on the Positive African women’s lives in Vancouver.

For more information, contact:
Sahwanya at (778) 998-2692 or e-mail sahwanya_ck@yahoo.com

The GOAL Project: University-community action on HIV/AIDS

What has been marinating in the kitchens on the Women’s Health Research Unit (WHRU) at the University of Ottawa’s Institute for Population Health is far from just another HIV and AIDS project. Created in 2004 in response to the increasing rates of new HIV infection within African and Caribbean communities in Ottawa, the Global Ottawa AIDS Link (GOAL) Project has grown significantly from its early days as the vital but resource-starved organization known as the “unproject.”

Immigrants and refugees from countries where HIV is endemic made up 19% of new male HIV cases and 70% of new female cases in Ottawa between 2001 and 2003. Motivated by this growing health concern, Ottawa community members and the WHRU got together to brainstorm how to address barriers to health and social care, systemic racism, stigmatization and discrimination faced by people with HIV/AIDS within the African and Caribbean communities in Ottawa.

After Toronto, Ottawa counts the largest African and Caribbean communities in Ontario and, according to the Ontario HIV Epidemiological Monitoring Unit, these communities made up over 16% of all new HIV diagnoses in Ontario in 2007. Yet supports for people from these communities affected by HIV and AIDS are still in the early stages of development. In the words of one woman working with GOAL, “We need forums through which we can meet to discuss overcoming cultural barriers and generational gaps. We need to communicate with service providers so that health service delivered in sensitive ways will really make a difference in the long run.”

“South-North and North-South knowledge sharing about human health and community research capacity is a big part of GOAL,” says Carol Amaratunga, Chair of WHRU and co-founder of the GOAL Project. In 2004 and 2006, GOAL delegates participated at Bangkok and Toronto International AIDS Conferences and cultivated partnerships with Thai and Rwandan universities, including a strong relationship with its Twining Linkage partner, la Ligue Universitaire de lutte contre le sida at the National University of Rwanda in Butare, Rwanda.
 
GOAL focuses on issues related to HIV and AIDS, but its mission is broader. Project organizers have studied and learned from the multitude of community-based research (CBR) projects—the success stories and the not-so-successful stories from St. John’s to Victoria.

In mid-2006, GOAL led six focus groups in Ottawa with members of the African and Caribbean communities and the service providers who work with them. One of the ideas that emerged was to host a workshop on the role of art as an HIV/AIDS prevention and health promotion tool. Approximately sixty people, including researchers, AIDS service providers, students, youth and theatre specialists attended the two-day workshop “Art-based HIV/AIDS prevention: Best practices.”  With a line-up of international, local and national guest speakers as well as performances by poets and actors, the event showcased a range of art forms such radio and TV soap operas, “forum theatre” from Rwanda, photography and even health-promoting hairdressers from Ottawa’s Operation Hairspray, as effective ways to communicate sensitive sexual health messages.

At the helm of the GOAL Project are women leaders from Ottawa’s African and Caribbean communities, such as Félicité Murangira, GOAL’s project coordinator and co-founder and current co-chair of the African and Caribbean Health Network of Ottawa. In 2006, Murangira was presented with the YMCA-YWCA Women of Distinction Award and the Planet Africa Volunteer of the Year Award. Community leaders involved in the GOAL Project set the pace and provide vision for the project which has received funding since 2005 from the Canadian Institutes for Health Research (CIHR), the Canadian Development Agency (CIDA) and Health Canada. The women work within the WHRU team and are supported in research endeavors by nearly a dozen scientists from the Institute of Population Health. GOAL Project’s founding team includes: Jack McCarthy of Ottawa’s Somerset West Community Health Centre, Department of Public Health of Ottawa; Melissa Rowe of the African Caribbean Health Network of Ottawa (ACHNO); Heather Smith Fowler; Dr. Lucie Kalinda, Félicité Murangira; and Carol Amaratunga.

The GOAL Project aims to provide a platform for the theory and practice of healthy community development. Drawing from domestic and international expertise and knowledge, it builds on past successes in community-based research and applies those best practices in the context of HIV/AIDS health services. Organizers hope that GOAL will serve as a model for community health services related to HIV/AIDS that will be adopted or franchised by other communities prepared to invest the effort over the long term.
For more information, visit:

University of Ottawa, Women’s Health Research Unit
http://www.whru.uottawa.ca/en-home.php

African and Caribbean Council on HIV/AIDS in Ontario
http://www.accho.ca/index.aspx?page=hiv_facts

Operation Hairspray, Ottawa Public Health
http://ottawa.ca/residents/health/living/sexual/hairspray_en.html

Refugee + Support Project

“Being at the same time a refugee, a woman, and a woman diagnosed with a chronic illness such as HIV is big! We cannot live forever. My wisdom tells me that we all have to die of something; and die one day we will. We must enjoy every new day and focus on living in a healthy way!”
– Participant of the Refugee + Project

For most newly arrived refugee women with HIV/AIDS, their first point of contact with social service or health support in Montreal is through the medical establishment. Doctors, nurses and social workers then refer women to the AIDS service organizations (ASOs) in the city. If they had landed in Toronto, these women would have had access to a greater selection of support networks and more highly developed community groups that cater specifically to women. Unfortunately, in Montreal such women-specific services are limited or nonexistent. One program that did provide support for women from sub-Saharan Africa is the Refugee + Support Project [le Projet réfugié plus], a three-year pilot project that wrapped up its programs in December 2007.

Funded by the Public Health Agency of Canada as part of the Federal Initiative to Address HIV/AIDS, the project provided multilingual training of support workers and assistance for refugee women with HIV/AIDS to access health, legal or community services. Project organizers based at the Centre de ressources et d'intervention en santé et sexualité (CRISS) [Centre for resources and intervention on health and sexuality] established peer support groups and helped create a network for better communications and referrals among the ASOs and other service providers. According to the women participants, peer support was an important element of the Refugee + Support Project and helped them form close friendships and a support network that has extended beyond the term of the project. In the words of one participant: “We share common issues—estrangement from and commitment to family, financial worry, strong faith in God—so communing in a non-threatening setting is valuable.” 

Women supported each other using the buddy-system pioneered by cancer survivors in Montreal’s “Hope and Cope” groups, although the system was not without challenges for HIV-positive refugees. Women from the same country were not necessarily eager to provide peer support to a compatriot because of fears about their HIV status being revealed to their community. Issues related to stigmatization, disclosure and discrimination related to HIV and AIDS are well-recognized barriers to health intervention programs, public education and prevention efforts.   

Participants of the project initiated and assisted with events and activities. The health and wellness workshop for “HIV information overload,” for example, was organized by participants in July 2007 to talk about how to find accessible information about HIV/AIDS medications, treatment and nutrition. The women had access to the Internet to search for HIV-related health information; however, word-of-mouth was the most common way to exchange information. “In so many ways and for so many reasons women and men experience migration and HIV-related health matters differently. That is why it is nice to have activities that are women-only so that we can talk openly,” said one participant.
 
As a pilot project, the Refugee+ Support Project was limited to a three-year term of funding, therefore an effective evaluation was important to capture what was learned. When asked about the strengths and weaknesses of the project, the women offered candid feedback that organizers hope will be useful to other groups or service providers assisting women migrants to manage HIV in Canada. Their comments relate to four different themes:

  1. Women’s leadership – Organizations can better support women’s leadership and on-going education. Integrating the skills of women and capitalizing on their knowledge and networks here in Canada and in home countries is very valuable. Many women associated with the project were highly educated and at least one woman with senior-level experience in HIV/AIDS activism and education commented that she was disappointed that there was little outlet for her skills. Projects geared to women refugees should aim to involve women in program design, implementation, monitoring and evaluation.  
  2. Linking women to provincial, national and international opportunities and supports – Organizations can actively network across borders, linking with efforts in other Canadian jurisdictions and internationally. Women can be encouraged to apply for provincial and national opportunities open to persons with HIV/AIDS (PHAs). The Canadian AIDS Society (CAS), for example, offers a range of scholarships, and awards monies to attract and include women from countries where AIDS is endemic. In June 2008, CAS is sponsoring a PHA forum that emphasizes leadership development and provides networking opportunities for PHAs across Canada.
  3. Thinking outside the HIV/AIDS box – Organizations can help women reach organizations that are outside of what has been called the “AIDS ghetto.” This could mean referring women to training and skill-building programs offered through the YWCA and other local non-profit organizations. It incumbent on ASOs serving women to cultivate collegial and professional relationships over time—in Canada and overseas.
  4. Project viability – The viability of a project or program is dependent on the viability of the ASO housing it. In this case, the project design had a number of strengths and weaknesses. Its effectiveness was limited by the viability of the ASO where it was housed (the organization has since closed). For such a project to remain pertinent to the women it serves, the host ASO must recognize that women and their needs are diverse and evolving; the organization must show leadership and be comfortable with change and unexpected developments that invariably present challenges.

The Refugee + Support Project confirms that asylum-seeking and refugee women diagnosed with HIV have specific health and social needs when they arrive in this country. But it also confirms that the gendered dimensions of the refugee experience for those managing HIV are under explored in Canada. Having a more complete portrait and broader understanding of asylum-seeking and refugee women’s experiences from the time of their arrival is a starting point. Organizers of the Refugee + Support Project suggest charting the experiences of immigrant and refugee women with HIV/AIDS over time as they navigate various channels of support and services. This information could then be used to improve services, inform policy, promote understanding and create awareness.

Laura M. Bisaillon is a PhD student in Population Health at the Institute for Population Health and Research Assistant to the GOAL Project at the Women’s Health Research Unit, University of Ottawa.