Black History Month: February and Forever: Celebrating Black History today and every day
Every February, people in Canada are invited to acknowledge the Black History Month. This year’s theme is February and Forever: Celebrating Black History today and every day. As part of these celebrations, the CDTRP Team would like to focus on the inequities Black communities can face in the donation and transplantation process.
CDTRP’s Communications Manager Stéphanie, recently caught up with Princess Okoh, a first-year master’s student at the Institute of Medical Science at the University of Toronto and trainee within the CDTRP Education and Training Platform. Princess is interested in understanding barriers resulting in health inequities among marginalized populations, particularly those affected by chronic health conditions like kidney disease. She is currently a member of the Kidney Health Education and Research Group working on A.C.T.I.O.N., a project to improve access to Living Donor Kidney Transplantation in Ethno-racial Minority communities in Canada. In addition, she is aspiring towards a career in population health research and academia.
“Throughout my academic and professional career,” Princess says, “I have participated in several outreach programs with organizations providing medical services to rural communities affected by non-communicable diseases like chronic kidney disease and complicated by infectious diseases. Working in these communities has spurred my desire to acquire the requisite research skills to understand existing health disparities in marginalized populations and reduce these health inequities. Hence my reason for undertaking a MSc. degree in Medical Science and working at Kidney Health Education and Research Group.”
CDTRP was proud to support the early development of this work through a 2016 UHN CDTRP Innovation Grant led by Istvan Mucsi.
Understanding the barriers to accessing Living Kidney Transplantation in the ACB Communities
Chronic kidney disease is a significant cause of morbidity and mortality in Canada and worldwide. It can be progressive, leading to kidney failure. African, Caribbean, and Black (ACB) individuals are at an increased risk of kidney failure than white Canadians. Living Donor Kidney Transplantation (LDKT) is the optimal treatment option (from a medical standpoint) due to better quality of life and survival. However, ACB patients are 50-70% less likely to receive LDKT than white patients. This inequitable access to LDKT is due to an interplay of biological, economic, systemic, and social factors. In collaboration with community partners, Kidney Health Education and Research group at Toronto General Hospital is conducting research to identify and explore barriers to accessing LDKT in ACB communities in Toronto, Ontario, using an exploratory qualitative approach. Emerging themes from this qualitative study include:
- Mistrust in the health care system
- Stigma and privacy surrounding kidney disease
- A need for culturally tailored and preventive information
- Holistic Information on LDKT
Mistrust in the health care system stems from historical legacies of medical mistreatment, lived experiences of discrimination within the health care system, and lack of ACB representation in health care. In addition, mistrust affects willingness to utilize resources and engage in the information provided on LDKT by traditional (Western) health care systems.
Participants stated fear of stigma as a reason for the non-disclosure of kidney disease and the need for LDKT. A strong sense of privacy when communicating health issues was also expressed.
“We don’t understand, and we don’t believe that the system is for our best interest. So, there is that degree of suspicion and the suspicion could result in us not revealing information that could be valuable and also, at times, giving misinformation because we’re not understanding what’s happening.”
– ACB community member
Participants expressed that the health care system does not incorporate diverse ACB cultural values and religious influences in the information about kidney disease and treatment options such as LDKT. An illustrative quote from an ACB community member:
“Like, I just felt like I’m giving up my culture, like all the foods that I was, I grew up on, I feel like I have to like eat a certain way that I think more resonates with, um, Eurocentric and westernized cultures.”
They also emphasized the need for preventive information to prevent the progression of kidney disease and the pursuit of LDKT and holistic information on the process of transplantation, including other domains like psycho-social.
Findings from this research would help inform culturally competent educational frameworks and tools co-developed by the community to enable informed decision-making about LDKT for members of ACB communities.
ACB Organ Health – A University Health Network initiative
The Centre for Living Organ Donation at UHN has been working with patient partners, professionals and creatives from the African, Caribbean and Black (ACB) communities to develop and launch, in September 2021, the ACB Organ Health, a YouTube Channel dedicated to sharing experiences and knowledge of transplantation and living donation.
The ACB Organ Health YouTube Channel Advisory Committee plans, co-creates and helps promote engaging, informative and trusted video content and supporting resources for ACB patients, caregivers, clinicians and community. A pilot intervention of the A.C.T.I.O.N project, this initiative provides accessible education on organ health including preventative care. Ultimately, ACB Organ Health aims to start the discussion of transplant disparities in the ACB community, share educational content, help prevent individuals within the ACB community from having health complications that may lead to an organ transplant, and perhaps most importantly, and share their personal stories to encourage and inspire others.
If you would like to join the committee, share your story or use your skills and expertise to help grow the channel email email@example.com.