Enabling informed shared decision making about living donor kidney transplant for members of African, Caribbean and Black (ACB) communities
Innovative Approaches to Care Delivery, Public Health, and Equity, Diversity & Inclusion
Better access to live donor kidney transplant (LDKT) will save lives and improve the quality of life of ACB patients with kidney failure.
Moving sensitive, complex discussions about LDKT from a healthcare setting to closer to ACB communities will allow people to explore their options, and concerns at their own pace, in a patient-centred, culturally safe environment. We started to build capacity in community health centres to enable them to better support community members.
In collaboration with patient partners, community members we built a kidney health education website for ACB communities (https://kidneyhealthacb.ca/). We are also finalizing an anti-Black racism education module for nephrology professionals.
The Ontario Renal Network (ORN) initiated a working group to promote kidney health among ACB communities, of which I am a member. Our research results and deliverables will inform these efforts of ORN.
Compared to white patients, African, Caribbean and Black (ACB) patients with kidney failure are less likely to receive a living donor kidney transplant (LDKT). We used quantitative and qualitative methods to better understand knowledge, attitudes, risk perceptions, and considerations about kidney health and LDKT in ACB communities.
Patient education in Ontario is not culturally tailored, leaving ACB Canadians with unaddressed concerns about treatment options. We are also exploring information needs of ACB communities about kidney health. To start addressing this gap we created a website about kidney health for ACB communities (https://kidneyhealthacb.ca).
Using hospital and community-based recruitment, self-identified members of ACB communities in Toronto, both with and without lived experience of kidney failure completed standard questionnaires, or participated focus groups and individual interviews. Qualitative data is analyzed using reflexive thematic analysis, also informed by tenets of critical race theory.
Themes in our qualitative analysis include a desire for tailored and trustworthy information on kidney health and LDKT. Participants also expressed mistrust in the health care system, rooted in historic and current, generational and personal experiences of racism. This may impact willingness to engage with information provided by medical institutions. Participants emphasized that development of resources on LDKT will require collaboration with ACB communities to incorporate important cultural, preventive, and holistic elements e.g., nutrition preferences, spiritual and religious beliefs.
Our quantitative analysis suggested that compared to white participants, ACB participants had less transplant-related knowledge about the benefits of KT and LDKT. Mistrust in the healthcare system may contribute to this difference. Concerns about post-transplant medications and anticipated financial strain are also associated with KT decisions.
Edwards, B., Marshall, L.J., Ahmadzadeh, G., Ahmed, R., Angarso, L., Balaji, S. et al.: Exploring barriers to living donor kidney transplant for African, Caribbean, and Black communities in the Greater Toronto Area, Ontario: a qualitative study protocol.
BMJ Open. 2023 ;13(8):e073176. doi:10.1136/bmjopen-2023-073176
Hamid, M., Gill, J., Okoh, P., Yanga, N., Gupta, V., Zhang, J.C. et al.: Knowledge about Renal Transplantation among African, Caribbean, and Black Canadian Patients with Advanced Kidney Failure
Kidney International Report, 2023. DOI:10.1016/j.ekir.2023.09.018