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Identifying And Addressing the Educational Needs of Patients from Marginalized Groups On Less Than Ideal Kidneys

Marie-Chantal Fortin
CRCHUM
Logistics
Virtual
Anticipated time commitment
2h/month
Application deadline
Type of Organ
Kidney
Opportunity Type
Research Partner
Theme
T2 - Practices for Donation

Kidney transplantation is the best treatment for patients with end-stage kidney failure. There is, however, a gap between the number of patients waiting for a transplant and the number of organs available, leading to the death of patients. Meanwhile, there are numerous deceased donor kidneys which are not used and discarded.

In the US, it is estimated that around 1 out of 5 deceased donor kidneys are discarded. Most of the discarded kidneys are less than ideal since the deceased donor had medical conditions such as high blood pressure or diabetes. However, using these less-than-ideal kidneys for selected patients could be a novel strategy to increase access to kidney transplantation.

We have shown in previous studies that patients support the use of less than ideal kidneys and that shared-decision making is important for patients and transplant professionals in the decision to accept or decline a deceased donor offer. Shared-decision making is a process where both the healthcare providers and patients participate in the decision making. However, patients require educational tools to provide clear information to engage in this decision-making process.

Discussion and education about less-than-ideal kidneys that lack cultural sensitivity could contribute to mistrust in the allocation process.

Therefore, it is of paramount importance to give patients from marginalized populations the opportunity to identify methods for developing educational resources tailored to their needs and realities.

Purpose of the study: In this study, we aim to capture patients’ and caregivers’ perspectives from marginalized populations by race and ethnicity on less-than-ideal kidneys and their education needs.

Methods:

  • Literature review on the existing educational tools developed for patients from marginalized populations.
  • Individual interviews and focus groups with kidney transplant candidates and caregivers from different ethnic groups (Black, Asian, South-Asian and Indigenous) about their perspectives on less-than-ideal kidneys and their education needs.
  • The content of the interviews will be analyzed, and the results will be used to develop educational tools that will be translated into different languages.
  • Participants will be invited to review the developed educational tools.


Anticipated outcomes: This research project will provide a new educational tool that will help patients participate in the decision-making process to accept or not a less-than-ideal deceased donor kidney.

Experience required

  • We will engage with patients from different marginalized populations to be part of the research team. They will take part in the different steps of the research study: design, data collection, data analysis, video development and assessment.
  • This project is seeking another PFD Research Partner for the study. Ideally, the PFD partner is an Indigenous deceased donor kidney transplant recipient. 

Potential roles for PFD Partners

  • The PFD partner will help us with the conduct of our study and to reach Indigenous communities.
  • The PFD partner will also assist us in the developmnent of educational tools for Indigenous patients.

Reimbursement

  • We plan to reimburse the time dedicated to this project at an hourly rate of $50/hour. We will also reimburse travel costs if needed.

How to get in touch

Name
Marie-Chantal Fortin
Job title
Nephrologist and researcher
Email
Phone
514-248-4760