Year One Summary

Introduction

From a medical perspective, living donor kidney transplantation (LDKT) is the preferred treatment option for eligible patients with end stage kidney disease (ESKD). Access to LDKT is lower for patients from populations marginalized by race and ethnicity in Canada compared to White patients. However, few interventions have been carried out to improve equitable access to LDKT for these populations.

The A.C.T.I.O.N. project, led by the Centre for Living Organ Donation at University Health Network and Providence Health Care Research Institute at Providence Health Care, aims to identify barriers to accessing LDKT in the South Asian and African, Caribbean, and Black (ACB) communities in British Columbia and Ontario, and pilot interventions to reduce these inequities. This report summarizes activities and findings from the first nine months of the project, which was launched in September 2019. Due to COVID-19, the deadline for the Year 1 deliverables report was extended.

Barriers to LDKT

In Year 1, the British Columbia and Ontario project sites conducted qualitative research (in addition to quantitative research in Ontario) to understand barriers to LDKT in South Asian and ACB communities.

South Asian Community in British Columbia

Between January and March 2020, adult kidney transplant (KT) recipients and living donors with a South Asian background were recruited for in-person and telephone interviews in English or in the participant’s preferred language.

The interviews found that the nuances of South Asian culture influenced how recipients and donors related or interacted with the KT pathway. Participants expressed a general level of satisfaction with the healthcare teams involved in their care. Additional analysis is currently underway to further determine the relationship between South Asian culture and patient’s pursuit of LDKT, including the social complexities of identifying a suitable donor.

Participants also emphasized improving LDKT information comprehensibility and accessibility (including the provision of resources for non-English speaking patients). Such guidance could be provided through in-person assistance or peer support, with the involvement of family throughout the process being suggested as a source of additional support for patients. Within community spheres, participants felt that education and media outreach would be valuable tools to increase awareness of LDKT in the broader South Asian community while simultaneously supporting patients in pursuing LDKT.

In order to further understand barriers to LDKT in the South Asian community and inform the design of the pilot project intervention, additional focus groups with the broader South Asian community will be held.

ACB Community in Ontario

Between January and June 2020, data was collected from ACB individuals with lived experience in ESKD and KT, general ACB community members, as well as nephrology and transplant healthcare professionals across the Greater Toronto Area.

ACB KT candidates were less likely than White patients to have a potential living donor identified, were less likely to take action towards LDKT and had a lower likelihood of sharing their need and interest in LDKT with others. Yet, the majority of participants indicated that they were ready to accept a living donor, if one was offered. Potential gaps in knowledge around the KT process were identified among patients and community members, but patients with ESKD from ACB communities were aware of most of the advantages of LDKT, similar to other patients.

Barriers to finding or becoming a donor may be influenced by prominent beliefs around donation, as well as the common sentiment of guilt associated with asking someone to be a living donor. Uncertainties about the risks of living donation were concerning for potential donors and recipients, indicating the importance of comprehensive communication about the short- and long-term impacts of LDKT. Cultural norms around the privacy of health-related dialogues may also be implicated in the above results. Importantly, participants indicated that these barriers may be reduced through culturally tailored education and communication developed and delivered by community. Concerns about the cost of post-transplant medications and the financial strain imposed on donors were voiced by both patients with ESKD and community members. These concerns will need to be addressed when considering appropriate social and financial assistance to render LDKT financially neutral for both donors and recipients.

Importantly, overarching ideas of systemic mistrust were prominently expressed by ACB community members in relation to both general healthcare experiences and KT-specific pathways. This mistrust highlights the sentiment that the healthcare system and specifically, the transplant system does not meet the needs of the ACB community. In order to build trust between ACB communities and the healthcare and transplant systems, measures to increase representation of ACB communities at all levels of healthcare must be implemented.

In order to further understand barriers to LDKT in the ACB community and inform the design of the pilot project intervention, additional focus groups with ACB individuals with lived experience in ESKD and KT will be held.

Improving Access to LDKT

To support the development of culturally competency educational materials and clinical pathways for the A.C.T.I.O.N. project, an environmental scan was conducted to identify existing resources, including culturally tailored resources, aimed at educating patients and the public on chronic kidney disease (CKD), LDKT, and other chronic diseases in Canada and internationally.

Educational initiatives to improve access to LDKT should include a patient’s social network, and be conducted in a comfortable location, early in the patient pathway, and in multiple brief sessions. It is suggested to implement the use of various media formats for the education of patients and social networks around LDKT, and it is recommended that broader nephrology staff be trained to provide comprehensive LDKT education at earlier time points in the patient pathway. Patients and caregivers can additionally be trained on how to approach potential donors, where this training can be supported by providing patients and potential donors with the opportunity to speak with diverse groups of living donors and recipients. Culturally tailored LDKT education interventions have been tested internationally, and have included the provision of transplant navigation assistance, culturally appropriate education through house calls, culturally competent web-based education, interpretation/translation services, and the involvement of faith leaders in communication about LDKT. Importantly, interventions should be multi-level in order to address systemic health inequities and the creation of subsequent educational material should be a community led initiative to ensure increased conversations around LDKT with accurate medical information. This will allow individuals to make informed decisions within their own systems belief.

Recommendations and learning from the environmental scan and literature search will be discussed with community, patient, and professional advisors, and their recommendations will inform the design of the pilot project. Systemic racism must be acknowledged and addressed within the pilot project to increase equitable access to LDKT. In addition, key principles and target areas identified through the research conducted in British Columbia and Ontario will guide the details of the intervention at each site.

Cultural Competency in LDKT

To inform the co-development of a cultural competency training program, an environmental scan was conducted to identify existing cultural competency training curricula and resources in Canada. The framework used to guide this scan acknowledges the systemic roots of marginalization and supports building awareness of personal biases and power dynamics and how they impact healthcare experiences of populations marginalized by race and ethnicity. Existing cultural competency training resources included a range of educational content and activities to support self-reflection and continued learning.

Evidence indicates that existing strategies for improving cultural competency in healthcare have not been effective in improving the health outcomes or experiences of populations marginalized by race. The A.C.T.I.O.N. pilot project will design and implement cultural competency training starting with nephrology and healthcare professionals to ensure proper assessment of systemic bias as well as the creation of a safe and inclusive space for diverse community members to be involved in treatment. In addition to addressing power relations and systemic racism within cultural competency training, the A.C.T.I.O.N. pilot project will explore race-based data collection and review options for embedding culturally-sensitive LDKT decision support tools for patients and clinicians. Any interventions in the pilot project must acknowledge systemic racism and issues of mistrust in order to be effective and ensure a holistic approach to personalized care.