On October 5, 2017 at Toronto General Hospital, our research team hosted the first in a series of focus groups involving participants in our Psychosocial and Ethnocultural Barriers to Living Donor Kidney Transplantation (LDKT) project. The purpose of these small discussion groups is to better understand the barriers and challenges experienced by people living with end stage kidney disease (ESKD) as they make decisions about what renal replacement therapies to pursue—that is, some form of dialysis versus deceased donor or living donor kidney transplant. Dr. Marta Novak and Dr. Rinat Nissim facilitated this session which brought together four participants.
Our participants shared the unanimous opinion that in Canada, very few people are aware of the life-changing impact of chronic kidney disease. They believed this was because although ESKD is life-threatening, renal replacement therapies make it possible to restore at least part of one’s kidney function, and so the impacts of kidney failure are somewhat invisible. The participants felt well informed about kidney disease and its treatments, but they felt that a lack of awareness about kidney health and disease in the general public made it more difficult for them to initiate conversations about organ donation and kidney transplant, especially living donor kidney transplant, with members of their social networks. Our participants were quite complimentary about the quality of care their renal teams provided, but also felt that their healthcare providers’ knowledge of and communication about Ontario’s wait list system for deceased donor kidney transplant was inconsistent.
The ages of our focus group participants spanned five decades. From the anecdotes they shared, it was clear that their decision making about kidney transplant was shaped by different considerations at different ages. A 35-year-old with chronic kidney failure may find dialysis treatments extremely disruptive to their routines and their ability to work, and yet may also be quite concerned about outliving the typical lifespan of a transplanted kidney. A 70-year-old retiree might not find that dialysis affects their ability to work, but while a single kidney transplant might serve them well for the rest of their lifespan, they may be reluctant to approach younger family members or friends to be potential living kidney donors.
We sincerely thank our participants for sharing their experiences and insights. Our team will be organizing further focus groups selected from communities that research has shown are less likely than others to pursue kidney transplant (especially LDKT), including South Asian, South East Asian and Muslim Canadians.