The Muslim Kidney Guide Project
Patients with End Stage Kidney Disease (ESKD) require Renal Replacement Therapy (RRT), consisting of dialysis or kidney transplantation, to survive. In comparison to dialysis, kidney transplantation, specifically living donor kidney transplantation, results in a longer and improved quality of life for the patient. However, various barriers limit access to kidney transplant and living donor kidney transplant, resulting in patient suffering and premature death.
In Ontario, approximately 5% of patients with ESKD are of Muslim background. Muslim Canadian patients may be half as likely to receive living donor kidney transplantation (LDKT) in comparison to Caucasian Canadians. Additionally, Muslim Canadians may be less inclined to register for and consent to deceased organ donation compared to Caucasian individuals. Language barriers; lack of awareness of topics such as the benefits of kidney transplantation, LDKT and transplant-related knowledge; and misconceptions on the position of Islam on organ transplantation may all be important factors that prevent Muslim Canadians from benefiting from kidney transplantation (including LDKT).
The aim of the kidney guide project is to identify and understand the barriers that prevent Muslim Canadians from pursuing transplants and considering living donation. Based on the data gathered from this study and in collaboration with Muslim patients, community members, scholars, mosques and various Islamic organizations, we aim to develop a culturally and religiously competent education toolkit tailored to the Muslim community. This kidney transplant guide will inform patients, their families, and broader communities about advanced chronic kidney disease (CKD) and ESKD, deceased donor kidney transplant (DDKT) and LDKT. This guide will also cater to multiple language groups to reflect the broad ethno-cultural backgrounds of Muslims within Canada. Through this initiative, we aim to help Muslim Canadians to consider kidney transplant and living donor kidney transplant. We want to reduce current existing inequities in access to kidney transplant and living donor kidney transplant, so that all patients, including Muslim Canadians can benefit from the best treatment for kidney failure.
Many Muslims shy away from the topic of organ donation as they believe it is something not deemed permissible by Islam. In this regard, however, it is important to point out that many leading bodies of Islamic scholars throughout the world have passed rulings attesting to the fact that organ donations are permissible in Islam. Please see the brochures listed under “Resources” for more details.
Recent Activities (2017)
- Community survey: We are in the process of preparing a community survey to administer to Muslim Canadian patients with chronic kidney disease (CKD) and to family members and friends who are closely involved with them, to find out about any concerns, issues and barriers patients are experiencing.
- Patient and professional advisory councils: We are networking with community organizations and imams in order to convene patient and professional advisory councils representing the diversity of Muslim Canadians. Our first meeting of the professional advisory council took place September 22, 2017, bringing together imams, community health professionals, nephrologists, physicians and researchers to advise on the content and areas of need related to the Muslim kidney guide.
- Focus groups: As part of our ongoing Barriers to Living Donor Kidney Transplant study, our researchers are identifying potential Muslim Canadian participants with ESKD to take part in future focus groups to help us identify and understand issues, beliefs and barriers in relation to kidney transplant among these patients.
- Networking and sponsorship: Our research group was proud to sponsor the Muslim Medical Association of Canada’s first Bioethics Conference in April 2017, which reviewed a number of common biomedical issues from an Islamic perspective, including organ donation. We continuously seek collaboration with organizations that serve the needs of Muslim Canadians.
In Memoriam: Professional advisory council member Hiba Yusuf