Exploring barriers to living donor kidney transplant for African, Caribbean and Black communities in the Greater Toronto Area, Ontario: a qualitative study protocol

Abstract

IntroductionLiving donor (LD) kidney transplant (KT) is the best treatment option for many patients with kidney failure as it improves quality of life and survival compared with dialysis and deceased donor KT. Unfortunately, LDKT is underused, especially among groups marginalised by race and ethnicity. African, Caribbean and Black (ACB) patients are 60%–70% less likely to receive LDKT in Canada compared with white patients. Research from the USA and the UK suggests that mistrust, cultural and generational norms, access, and affordability may contribute to inequities. To date, no Canadian studies have explored the beliefs and behaviours related to LDKT in ACB communities. Research approaches that use a critical, community-based approach can help illuminate broader structural factors that may shape individual beliefs and behaviours. In this qualitative study, we will investigate barriers to accessing LDKT in ACB communities in the Greater Toronto Area, to enhance our understanding of the perspectives and experiences of ACB community members, both with and without lived experience of chronic kidney disease (CKD).Methods and analysisHospital-based and community-based recruitment strategies will be used to recruit participants for focus groups and individual interviews. Participants will include self-identified ACB individuals with and without experiences of CKD and nephrology professionals. Collaboration with ACB community partners will facilitate a community-based research approach. Data will be analysed using reflexive thematic analysis and critical race theory. Findings will be revised based on feedback from ACB community partners.Ethics and disseminationThis study has been approved by the University Health Network Research Ethics Board UHN REB file #15-9775. Study findings will contribute to the codevelopment of culturally safe and responsive educational materials to raise awareness about CKD and its treatments and to improve equitable access to high-quality kidney care, including LDKT, for ACB patients.

Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study

“…Other studies have also reported that African and Hispanic American patients were less willing to communicate their need for LDKT 43 , 71 compared to White participants. Our ongoing analysis of qualitative data collected from members of ACB, South Asian, and Chinese Canadian communities 24 suggest that this may be related to mistrust of the Canadian health care system, 72 , 73 gaps in transplant-related knowledge, 74 potential stigma associated with kidney failure, and cultural norms around privacy concerning health issues. 75 , 76 Patients may also have concerns about the impact of donation on the donor; therefore, they avoid talking about LDKT with their parents, children or other relatives.…”

“… 12 , 13 , 14 , 15 , 16 , 17 Frequently, the term “race” is used to ascribe individuals to groups based on ancestral origin, which is assumed to contribute to genetic, cultural, educational, and socioeconomic characteristics of group members. Instead, we use the term “racialization” 18 , 19 , 20 , 21 , 22 , 23 , 24 to emphasize the complex historical, social, and political processes that form the racialized categories. This term also indicates that the processes forming and reinforcing those categories are, frequently and to a large extent, driven and informed by values, judgments, biases, and sociopolitical structures external to the affected individuals and groups.…”