Reflections on equity issues in iKT

The practice of integrated knowledge translation (iKT), when done successfully, is built around truly equal partnerships between academic researchers, community representatives and research users. But equality can be a tricky thing.

In this blog Dr. Cindy Holmes, Adjunct Professor in the Faculty of Health Sciences at Simon Fraser University and 2013 Research Trainee, shares her experiences working on an iKT research project with a community that experiences social exclusion and discrimination.

For more KT conversations visit KT Encounters.


Reflections on equity issues in iKT

 

For the past three and a half years I have been working with a research team of trans, Two-Spirit and gender nonconforming (T2SGNC) [1] people to answer three questions:

  • What makes a place feel safe and that I belong?
  • What does wellbeing look like to me?
  • What needs to change to create more safety, belonging and wellbeing for T2SGNC people in our community?

This research grew from my personal experience as a loved one of trans and gender nonconforming people, and a long history of working as a community advocate and educator in lesbian, gay, bisexual, trans, queer and Two-Spirit anti-violence and health movements.

Although I have a clear stake in health equity research and social justice for T2SGNC people, I am also a white, cisgender [2], middle-class academic and benefit from unearned privileges that may limit what I see and understand about T2SGNC people’s lives. Add to this the history of widespread exploitation and harm that T2SGNC people have experienced in research due to colonialism, cissexism, transphobia and heterosexism [3-5], and the importance of having T2SGNC community members as equal research partners is clear.

Ensuring that T2SGNC community members shape and drive all aspects of this research project has been (and continues to be) integral to its success, and has provided many insights into how to facilitate equity in iKT research.

 

Establishing community ownership

In recognition of the realities of privilege, inequitable power relations and history, I started this project with an extensive community engagement phase. I created an advisory group with T2SGNC community members which developed and planned the research to ensure it would be meaningful, respectful and accountable to T2SGNC communities.

Early on, the T2SGNC community advisory group stressed the distinctions between ‘consultation’ versus ‘control’, and ‘engagement’ versus ‘ownership’. As a result, we chose to use the term ‘co-researchers’ rather than ‘research participants’ to recognize our community partners as experts and full collaborators in the research and to honor the diverse forms of knowledge within the research team. We also established criteria for selection of co-researchers that, as part of our commitment to anti-racism in iKT research, would prioritize those who experience multiple forms of marginalization and include a majority who were Indigenous and of colour.

“We chose to use the term ‘co-researchers’ rather than ‘research participants’ to recognize our community partners as experts and full collaborators in the research.”

The project itself, conducted on the ancestral and unceded territories of the Musqueam, Squamish, and Tsleil-Waututh nations, in Vancouver BC, used a community-based participatory action research methodology called Photovoice. This used co-researcher photography, storytelling and critical reflection to gather and analyze data, and identify strategies for social action to support T2SGNC safety and wellbeing. These strategies have included collaborative presentations and photo exhibits at community events and academic conferences, t-shirt design and fundraising, writing and publishing.

 

Equity challenges in iKT

The process of doing iKT (and doing it well) is time consuming and cannot be rushed. This is particularly apparent when working across ethical tensions that stem from varying experiences of privilege and/or marginalization. These tensions are well documented in feminist, critical race, and Indigenous community-based participatory research literature, but are not often discussed in iKT projects.

  • Understanding the difference between equity and equality: Although iKT methods are often described as a transformative approach where all collaborators benefit as equal partners, it is important to acknowledge the impact of different social locations and accompanying experiences of privilege and/or marginalization. As the Race Matters Institute describes, "The route to achieving equity will not be accomplished through treating everyone equally. It will be achieved by treating everyone equitably, or justly according to their circumstances." We need to explore what it would look like if we focused on equity as a process towards achieving equality in iKT.

  • Language is not neutral: Not only is it important to find a shared language (as Chris McBride noted in his earlier post), but we must also consider the implications of that language in terms of stigma, discrimination and systemic oppression. Early on, Indigenous trans and Two-Spirit advisory members raised concerns about incorporating Indigenous identities under the umbrella of “trans” (something I had done), pointing out how this contributes to the erasure of Indigenous gender diverse people and their knowledge. As a result we added “Two-Spirit” to all our materials. The community also preferred the terms “safety and wellbeing” over “violence and mental health” (which I used in my original proposal) highlighting the ethical importance of studying resiliency and not only problems of violence, depression and suicide, particularly given the pervasive stigma and marginalization T2SGNC people experience.

  • Creating culturally safe spaces: We saw it as essential to conduct our research in spaces that were culturally safe, welcoming and accessible to diverse T2SGNC community members, specifically those who were Indigenous, of colour, poor or homeless, sex workers and/or living with disabilities. But finding these spaces was extremely challenging. In some cases, this involved advocacy with organizations and institutions to help them understand why Indigenous smudging ceremonies should be allowed (where cedar, tobacco, sage, and sweetgrass are burned for cleansing and healing), or why bathrooms should be gender neutral. 

 

Implications for iKT researchers

  • Recognize power differentials: Often, the iKT and community-based participatory research literature acknowledges power differentials between academic and community organizations but not those across diverse social locations of race, ethnicity, gender identity and expression, sexuality, class, education, age and ability. As researchers, our strategies for respectful engagement must integrate an analysis of these equity and power differentials, and we need to develop best practices for iKT that integrate critical inquiry about equity.

  • Establish conflict resolution guidelines: Too often we tell a neat and tidy story about iKT, but in reality, it is messy. Conflict resolution guidelines and terms of reference documents should be developed at the beginning of a project. iKT researchers and community members benefit from sharing examples and developing best practices for conflict resolution at the outset of a project that are informed by intersectional analyses of social power relations and health equity frameworks.

  • Commit to critical self-reflection: As academic iKT researchers, we have to be open to ongoing learning, acknowledging our mistakes and being willing to make changes along the way, even if it goes against what we originally planned. We must commit to ongoing critical self-reflection about positionality and power in our research and be flexible and willing to change. 

 

To do iKT well takes more time and more resources than traditional top-down research. While in-kind donations are essential, we cannot minimize the importance of adequate and designated funding (such as resources for honoraria for community collaborators and Indigenous elders, food and transportation subsidies). Both funding agencies and academic researchers need to understand that good iKT requires the flexibility to spend time discussing reciprocity, ownership and control at the outset of a project, and adjusting time frames and budgets to support meaningful, equitable and accountable partnerships.

 

The research was funded through a MSFHR Research Trainee Award (2013-2016) in the Faculty of Health Sciences at Simon Fraser University under the supervision of Dr. Marina Morrow. The co-researchers are: Daniel, Bon Fabian, Abby Hipolito, Liz ‘Raven’ James, Wade Jazen, Sandy Lambert, Cherese Reemaul, Velvet Steele, Ann Travers, Stefen de Villiers and Chase Willier Nirkwuscin. More than 15 community advisory members guided the initial development of the project and a group of five advisory members remain involved: James Kelly, Kimberly Nixon, Kyle Shaughnessy, Chase Willier Nirkwuscin and Caroline White.


Dr. Cindy Holmes
Adjunct Professor in the Faculty of Health Sciences at Simon Fraser University

Dr. Cindy Holmes is a community engagement consultant, educator and researcher with over 25 years’ experience in community health and social work. Cindy has taught courses on gender and health at Simon Fraser University and the University of British Columbia and has recently worked as a consultant with the new Trans Care BC program of the Provincial Health Services Authority in BC. Cindy is a white, queer, cisgender woman and a loved one of trans and gender diverse people.

Cindy currently lives and works in the ancestral and unceded territories of the Musqueam, Squamish and Tsleil-Waututh people in Vancouver BC.


Notes and references

  1. ​Transgender or trans is an umbrella term that describes a wide range of diverse people whose gender identity and/or gender expression differs from what they were assigned at birth. It may include those who identify as transsexual, Two-Spirit, bigender, genderqueer, cross-dressers, gender variant, gender fluid, or simply man or woman. The term Two-Spirit is used by some Indigenous people to describe the diverse roles and identities of lesbian, gay, bisexual, trans, queer, and/or gender-diverse Indigenous people in North America. Gender nonconforming refers to individuals who express their gender in ways that differ from societal expectations and/or stereotypes related to gender. Some gender nonconforming people identify with the broad umbrella category of trans, while others do not.
  2. Cisgender refers to someone who identifies with the gender they were assigned at birth.
  3. Bauer, G.R., Hammond, R., Travers, R., et al. (2009). “I don’t think this is theoretical; this is our lives”: How erasure impacts health care for transgender people. Journal of the Association of Nurses in AIDS Care, 20(5), 348–61. Available here.
  4. Travers, R., Pyne, J., Bauer, G., et al. (2013). ‘Community control’ in CBPR: Challenges experienced and questions raised from the Trans PULSE project. Action Research, 11(4), 403–22. Available here.
  5. Scheim, A.I., Bauer, G.R, and Pyne, J. (2014). Avoidance of public spaces by trans Ontarians: The impact of transphobia on daily life. Trans PULSE E-Bulletin, 4(1). Available here.

The opinions expressed in this blog post are those of the author and do not necessarily reflect the views of the Michael Smith Foundation for Health Research.

Comments

Thank you Cindy Holmes for bringing these ideas and issues to discussion here. These are important things for researchers to be thinking about.

Thank you to Dr. Holmes for her thoughtful and thought-provoking reflections on the complex considerations involved in iKT research. I particularly appreciate the three priorities she highlights for iKT researchers: recognizing power differentials, establishing conflict resolution guidelines, and critical self-reflection. I echo her call to funding agencies to recognize the importance of prioritizing funding and resources for the beginning stages of a project, to allow for the mutual planning discussions that are so essential to carrying out iKT research with integrity.

Way to go Cindy!!! I am forwarding this blog to the diverse people working on our ‘equity intervention’ team, and we will link it to our equity tool kit!at https://equiphealthcare.ca/ As you will see, we are posting other related resources, and we are ‘in development’ of many other tools. People seem to find these tools helpful in direct care! We are broadening from
Equipping primary health care for equity to Equipping health care for equity, and with our new grant for emergency units will be adding a lot more tools – and we need more related to trans, Two-Spirit and gender nonconforming folks. Thanks so much! this is such important work, and your work is directly 'useable' -

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