Table 2 Theoretical and Research Approaches & Guiding Principles

Theoretical approaches

Women-centred Community-based Research

- Involves the community of interest, women living with HIV, at all stages of research: developing research questions, research procedures and questionnaire; carrying out research; data analysis, and result dissemination.

- Appreciates the different expertise of community members and academic researchers and has them both being equal partners as part of the project.

- Understands the involvement of all different types of women and women at different stages of their life.

- Understands that women’s lives are busy and tries to accommodate their different needs with flexibility.

- Women living with HIV are involved as part of the national Steering Committee, provincial Community Advisory Boards (CABs) and Peer Research Associates (PRAs) in developing research questions and the questionnaire, as well as all other aspects of the study, including recruitment, troubleshooting data quality and interview challenges, knowledge translation and exchange (KTE), etc.

- PRAs are involved on various management committees and working groups; research decisions include input from the PRAs.

- Women living with HIV at various stages of life have been hired as PRAs.

- Flexible among all teams members, including working with PRAs schedules, holding PRA and team meetings in the afternoon for those with children and in the evening for those with jobs.

Critical Feminist Approach

- Analyzes the impact of structural inequalities, and gender-based marginalization and oppression.

- Holds gender as socially situated, complex, and non-binary.

- Understands the other diverse aspects of identity, power, and reality that shape individuals and communities experiences; recognizes how sexism, racism, classism, ableism, homophobia, transphobia, HIV-related stigma, and other axes of oppression intersect.

- Both CHIWOS’s process and its outcome goals are centred around principles of anti-oppression, an analysis of structures of power, and a vision of being transformative and action-driven.

- It is a community-based project which seeks to create a new research community of doctors, care providers, academics, students, activists, community members, and other stakeholders, driven by mutual respect and goals of social change.

- All involved receive training with a “What is CHIWOS?” presentation (available at www.chiwos.ca) and discussion of critical feminist and anti-oppression approaches.

- The team partakes in ongoing discussions of reflexivity regarding power, anti-oppression amongst any other issue that is raised.

Intersectionality

- Analyzes the overlapping and intersecting nature of identities and oppressions that shape individual lives and experiences, and an acknowledgement of the mutually supportive and constitutive nature of hierarchies and structures of power along different axes. Also acknowledges and values how identities and communities can be sites for resistance, resilience, and support.

- CHIWOS is attentive towards the diverse social positioning of the community of women. Recognizing the many intersecting identities that women living with HIV inhabit, we have tried to develop a research instrument that reflects the needs of trans women, Aboriginal women, immigrant women, women of colour, queer women, and other communities/experiences such as those of women with children, women involved in sex work, young women, etc. (recognizing that none of the groups are mutually exclusive). We have worked throughout the development process with stakeholder groups able to focus on different community needs to work towards a tool that is acceptable and respectful for the diversity of the women living with HIV community.

Research approaches

Anti-Oppression and Anti-Racism

- Related principles of anti-oppression further emphasize that women within and between societies are positioned differently and are differently impacted by the complexities of privilege and power relations.

- Maintain an analysis of oppression (sexism, racism, etc.) as central to our research goals and instruments as we try to capture the impact of racism and other forms of oppression on women’s experiences, but also to our process – for example, integrating an anti-oppression workshop into PRA training.

Social Determinants of Health

- Our project understands that social factors have key implications on health and that simply administering medical treatment is often insufficient to improve health. Poverty, gender inequity, and a multitude of other factors have a major impact on women’s vulnerability to health problems and (in)ability to access care and support.

- We developed the survey instrument with a keen eye towards capturing the many non-medical factors that impact women’s health status and care. In the formative phase focus groups discussions, we were sure to explicitly ask about structural barriers to care in order to capture people’s experience with some of these social determinants of health.

Guiding principles

Social Justice and Human Rights

- The research holds to emancipatory goals of creating meaningful change in affected communities, and to challenge oppression, improve health, eliminate barriers, and further social justice.

- We are engaged in action-driven research, setting out to assess the need for change to existing care and service provision models, and inform that change to better meet the needs of women living with HIV. We recognize that health disparities and unjust barriers to accessing good health/care are deeply entrenched and tied into large structures of oppression, but hope that the results of this work will contribute in meaningful ways to improving care for women living with HIV.

Meaningful Involvement of Women living with HIV/AIDS & Greater Involvement of Persons living with HIV/AIDS

- Women living with HIV must be recognized as equal partners in all stages of the project. All contributions and experiences are respected and valued; women living with HIV are recognized as experts in their own lives. These principles demand the intent to foster self-determination and agency in the community, and should be engaged in without tokenism.

- We assembled CABs in each province to bring together diverse perspectives and experience from women living with HIV.

- In order to ensure strong community voices, there is a PRA from each province on the National Management Team and Steering Committee, and PRAs lead other Working Groups.

- We worked closely with PRAs throughout development and implementation of the survey instrument through an extensive and iterative community-based consultative process, including women living with HIV and continue to do so in the new surveys.

Ownership, Control, Access, and Possession (OCAP™)

Definitions from First Nations Centre (2005):

Ownership, control, access, and possession, or OCAP™, is self-determination applied to research. It is a political response to tenacious colonial approaches to research and information management.

Ownership: Ownership refers to the relationship of a First Nations community to its cultural knowledge/data/information. The principle states that a community or group owns information collectively in the same way that an individual owns their personal information.

Control: The aspirations and rights of First Nations Peoples to maintain and regain control of all aspects of their lives and institutions extend to research, information and data. The principle of control asserts that First Nations Peoples, their communities and representative bodies are within their rights in seeking to control all aspects of research and information management processes which impact them. First Nations control of research can include all stages of a particular research project – from conception to completion. The principle extends to the control of resources and review processes, the formulation of conceptual frameworks, data management and so on.

Access: First Nations Peoples must have access to information and data about themselves and their communities, regardless of where it is currently held. The principle also refers to the right of First Nations communities and organizations to manage and make decisions regarding access to their collective information. This may be achieved in practice through standardized, formal protocols.

Possession: While ownership identifies the relationship between a people and their data in principle, possession or stewardship is more literal. Although not a condition of ownership per se, possession (of data) is a mechanism by which ownership can be asserted and protected. When data owned by one party is in the possession of another, there is a risk of breech or misuse. This is particularly important when trust is lacking between the owner and possessor.

- Recognizing the significant impact of HIV among First Nations communities in Canada, and the violent legacy and ongoing colonialism, CHIWOS is committed to working towards OCAP™ principles and building an ongoing relationship with First Nations communities.

- The creation of the CHIWOS Aboriginal Advisory Board: Prioritizing the Health Needs of Positive Aboriginal Women (CAAB-PAW) was a crucial step in working towards this in part, by reviewing and informing CHIWOS’s work, and to ensure CHIWOS strives to accomplish its goals for and with Aboriginal women.