Supported Research

Lay Abstract

How to mitigate potential coercion Background: Given the substantial benefits of living donor kidney transplantation, there has been an emphasis on increasing living kidney donation rates in Canada and globally. While these efforts are critical and necessary, there has been little focus on ensuring that potential unintended consequences of promoting living kidney donation are understood and addressed, particularly in more vulnerable populations. This knowledge is critical to ensure promotion of ethical and voluntary living kidney donation practices. Women donate more kidneys than men in Canada (62%) and the United States (65%), yet receive <40% of the available living or deceased donor kidneys. This inequity has widened over time and has been reported worldwide. However, the factors producing and sustaining this health inequity remain unclear. Recent findings from our group’s research among South Asian men and women in British Columbia (BC) suggest that women may feel pressured to donate to their own spouse or child with some noting the need for approval from husband and in-laws when making living kidney donation-related decisions. Although our preliminary data is specific to the South Asian community, it raises significant concerns for women in general and racialized women, in particular. Thus, understanding the various factors that influence women in their decision to donate is critical to develop and promote living kidney donation practices that tackle rather than exacerbate existing health inequities. Purpose: The overarching aim is to generate evidence of the factors that shape decision-making among racialized women living kidney donors as the foundation for supporting ethical practices in living kidney donation. The broader research question is: how do cultural, social, structural, and interpersonal factors shape decision-making among these women, and how can they be best supported in kidney transplant programs to ensure ethical and voluntary kidney donation? Methods: Racialized women, >19 years, who live in BC and speak English will be invited to participate in the study. The information will be shared through the kidney transplant programs and community networks to ensure diverse participation. Semi-structured interviews will be conducted using an interview guide with short vignettes (stories/instances) followed by questions. This guide will be co-developed with the patient and donor partners and the research co-supervisors. All data will be audio-recorded and transcribed verbatim. Major ideas will be derived from the data; similar ideas will be clubbed together to make data manageable using a data management software. Anticipated Outcomes: The data will be used to develop supports and resources to aid ethical and voluntary decision-making for racialized women considering living kidney donation (for example, a toolkit, psychosocial or linguistic supports).
Patient Engagement: 2 women patient partners (a living kidney donor and a living donor kidney transplant recipient, both members of a racialized community) will be involved throughout the project including participant recruitment, data collection, analysis and knowledge translation phases.
Relevance to Patients/Community: The project addresses apparent gender and racial inequity in living kidney donation and transplantation that has widened over time and been reported worldwide. Understanding why racialized women donate more kidneys and how they make this decision is vital to ensure ethical and voluntary living kidney donation practices among these communities.
Conclusion: Given the paucity of data on this topic, this project will significantly contribute towards understanding this significant gender and racial inequity in living kidney donation and develop supports and resources for potential living kidney donors to ensure ethical and voluntary living kidney donation practices.