End stage kidney disease (ESKD) is a chronic health condition in which the kidneys no longer function well enough to meet the needs of daily life. Treatment options for patients with ESKD include dialysis or kidney transplantation (KT). Living donor kidney transplantation is considered to be the best treatment option for patients who are eligible. Many studies, including our own, have shown ethnic inequities in access to KT.
The South Asian Kidney Guide Project
This project will be the first to address ethnocultural barriers to kidney transplantation among patients who belong to the South Asian community, and have ESKD. Our first step in developing this educational tool is to (1) conduct focus groups and interviews with patients and community members. Through these focus groups we will be able to identify the specific needs and current gaps in information that are important to patients from South Asian backgrounds. With this information, we will (2) develop and translate a culturally appropriate education guide to better inform patients, families and the community about kidney transplantation. Finally, we will (3) test this guide among South Asian patients by assessing patients’ transplant related knowledge and readiness to pursue transplantation, before and after using the guide.
- Community survey: We are in the process of preparing a community survey to administer to South Asian Canadian patients with chronic kidney disease and to family members and friends who are closely involved with them, to find out about any concerns, issues and barriers patients are experiencing in relation to exploring KT as a treatment option.
- Patient and professional advisory councils: We are networking with South Asian community organizations in order to convene patient and professional advisory councils with representation from the community. To this end, our team has been working with the Council of Agencies Serving South Asians (attending its Annual General Meeting in July 2017, and presenting at its Health Equity Summit in September 2017), to partner with and raise awareness of kidney health and disease among its member organizations.
- Focus groups: As part of our ongoing Barriers to Living Donor Kidney Transplantation study, our researchers are identifying potential participants from South Asian communities to invite to take part in future focus groups that will be conducted in the languages of these communities. We are preparing translated research materials as part of the planning for these groups.
- Publicity: Our group is in talks with OMNI Television and with Channel Y 24X7 (with Dr. Harpreet Singh Bajaj) to arrange opportunities for interviews or guest talks to spread awareness of kidney health and transplantation among South Asian Canadians.