Building a Safe House on Firm Ground (International, Led by Salamander Trust) the community need and vision
In 2013, the World Health Organization’s (WHO) Department of Reproductive Health and Research started the process of updating its 2006 guidelines on the sexual and reproductive health and human rights of women living with HIV, in light of rapidly changing treatment policies. In the 2006 guidelines, only one of the women acknowledged in the document was known to be living openly with HIV. For this update, the WHO decided to start the review process with a values and preferences survey of women living with HIV. Salamander Trust was selected to lead this process, and partnered with the ATHENA Network, the International Community of Women living with HIV (ICW Global), the Global Network of People living with HIV (GNP+), the Transgender Law Center, Red de Jovenes de Latinoamerica y el Caribe, ICW Asia-Pacific, and ICW Zimbabwe.
The core study team included two women living with HIV, both of whom were former chairs of the International Community of Women living with HIV/AIDS (ICW), who had established a certain level of trust among this community. One had a background in participatory approaches to development and social anthropology; the other was a translator and linguist and community mobiliser. Other core team members included an expert in community involvement, with a long track record of monitoring and evaluation in relation to gender justice; a human rights lawyer with a public health background; and a doctor with expertise in complex obstetrics and ethics. All had long track records in gender justice and commitment to community involvement. This was the first online participatory international community-based survey of women living with HIV.
ENGAGING COMMUNITIES IN RESEARCH
To ensure the meaningful involvement of people living with HIV throughout the survey, the core team invited 14 women living with HIV with diverse backgrounds, ages, and experiences from around the world to form the “Global Reference Group” (GRG). The role of this group was to support the core team in shaping and validating the research process. This was done through Skype-based calls, sharing of articles to inform GRG members about the guidelines update process, and email discussions.
The researchers sought to take a holistic approach to sexual and reproductive health and human rights. They designed a short holistic “quality of life and wellbeing” exercise which GRG members were asked to complete, in consultation with peers if preferred. This exercise invited them to reflect on the physical, sexual, psychological, material, and spiritual causes and consequences of their sexual and reproductive health and human rights. This presurvey process enabled GRG and core team members to develop a general understanding of the breadth and depth of causes and consequences of sexual and reproductive health and human rights experienced by women living with HIV, beyond a more conventional biomedical framework.
Another key part of the process from the outset was to adopt an appreciative inquiry approach to the process since, as one GRG member aptly stated, “often research on us asks us questions such as how we acquired our HIV which immediately throws us back into the trauma of what has happened to us. This can often reignite that trauma and can feel very disempowering.” By contrast this approach sought to focus on well-being (“what has worked well for you?”) and on suggested future priorities (“how can your health-care provider best help you to...?”).
After discussion with the WHO Reproductive Health and Research Department and members of Guidelines Review Committee, institutional review board approval for the survey was not sought, as this study was a consultative element of the guidelines development process. Ethical considerations were undertaken in line with the WHO 2001 Ethical and Safety Recommendations for Research on Domestic Violence against Women and the ICW 2004 ethical guidelines on involving women with HIV in research.14-15
The results of the presurvey exercise enabled the core team to shape questions, which covered all the issues raised by GRG members through the holistic exercise. These questions, designed to elicit a mixture of quantitative and qualitative responses, were piloted and pretested by GRG members before finalizing them. The resulting online survey included one mandatory section and eight optional sections based on priorities defined by the GRG. Survey questions were available in English as well as seven other languages (Spanish, Russian, French, Portuguese, Arabic, Bahasi-Indonesian, and Chinese). In order to extend access to the survey to women living with HIV who had no Internet access, and to act as a cross-check for online survey responses, focus group discussions (FGDs) were also conducted in seven countries. Six of the facilitators of these FGDs were also women living openly with HIV and these and other facilitators were already well known and trusted by respondents.
A total of 832 women living with HIV from 94 countries responded to the survey. Further, 113 women from 7 countries took part in 11 FGDs. The results produced a wide range of recommendations which, to reflect the holistic approach, were presented in the form of different sections of a house (Figure 15.2). Once again, the results were reviewed and validated by GRG members before finalization. The FGD responses echoed those of the online survey responses.
In order to ensure that all English-speaking respondents could access the results of the survey and make use of the findings in their own work, the resulting report was disseminated widely through e-mail, Internet, and social media. It was also translated into Spanish. To continue to ensure community involvement throughout the process, four peer-reviewed articles were coauthored by all core group members and some of the GRG members. Thus, each article had a majority of coauthors who are women living with HIV. These articles, highlighting the high levels of gender-based violence (GBV) and mental health issues (MH) experienced by women living with HIV, and explaining the participatory methodology, have all been published in open access peer-reviewed journals.16-20 The GBV and MH articles, which highlight the critical lack of attention to these issues in global HIV
Figure 15.2 Recommendations for how to achieve sexual and reproductive health and human rights for women living with HIV.
policy guidelines for women with HIV, have also been translated into Spanish. Further dissemination has included a Spanish-language webinar for Latin Americans; an abstract regarding UK-based findings has been accepted as a poster for the British HIV Association; another abstract regarding reported treatment side effects has been submitted to the Durban International AIDS Conference; and specific analysis of the Russian language findings was presented at the Eastern Europe and Central Asia AIDS Conference in March 2016. The original survey in Russian is also in use in a national-level research process among women living with HIV in the Ukraine. The survey questions and responses are also available for other women living with HIV to use via the Salamander Trust website.21
This presentation of three case studies using CBPR principles in HIV research demonstrates the power of CBPR to improve overall health and well-being for people living with HIV while contributing to the HIV research knowledge base. Similarities across studies include commitment to building and sustaining trust among communities, which is inherent in CBPR, inclusion of priorities of the affected communities within the research agenda (e.g., housing, addressing contexts of risks appropriate to their lives, recognizing and promoting sexual and health rights), and building capacity among those participating in the research process so that knowledge and resources remain with them.
Differences among the case studies examined here illustrate that CBPR does not require uniform methodologies. All three case studies used mixed-methods approaches that coupled qualitative and quantitative formal and participatory measurement tools. Community participation in the development of the research design and measurement tools also enhanced the quality and rigor of the data. Additionally, approaches can build on varied theoretical frameworks, as shown by those used in the case studies.
All three case studies meaningfully engaged people living with HIV in the research process. The outcomes also benefited society by providing evidence for policies to enhance quality of life for people living with HIV and increase selfefficacy for HIV prevention.