Offering Support and Connection to Patients Seeking Kidney Transplantation with Christina Schellenberg and Jody Max
Christina Schellenberg and Jody Max are two health care practitioners at St. Paul’s Hospital who are passionate about improving the overall health journey for patients living with end-stage renal disease and facing transplant. For many patients with kidney failure, transplantation has become the gold standard of treatment. Unfortunately, the wait for a deceased donor can be extensive, often taking many years. This can lead to dialysis, decreased quality of life, and overall diminished health. As a result, living kidney donation has become the preferred treatment of choice. The challenge facing patients is the onus for finding a donor, in large part, falls on their shoulders.
As recipients of the 2021 TRF funded Providence Health Care (PHC) Research Challenge award, Christina and Jody seek to empower individuals by implementing a support group for patients exploring living donation. In our interview with Christina, we learn more about this important project, how it meets patient’s needs, and what steps are being taken to ensure it works.
Tell us more about your connection to transplant?
Jody and I are social workers who work with patients affected by kidney disease. I work in the kidney care clinic and support patients who are moving towards living donor kidney transplantation by providing information, coaching and support. Jody is a social worker in the transplant program. She works with living donors in the pre-transplant donor clinic, assessing and advocating for donors, and supporting them through recovery. Jody also works with transplant recipients in the post transplant clinic setting.
What motivated you to initiate a support group around living donation?
I attended Canadian Blood Services’ Advancing Living Kidney Donation Forum in January of 2020 and was inspired by the work that is being done across Canada to increase living donor kidney transplants. It was eye opening – I was shocked to hear that living donor rates in Canada have gone down since 2008. We know that living donation is the best treatment option, so we started this group to help increase the numbers of living donor transplants. We have also heard directly from patients and their donor champions that they are often confused and anxious about how to find a living donor. Our hope is that our group is addressing some of the barriers.
You recently received a PHC Research Challenge grant funded by TRF. Tell us more about your funded project and what you hope to achieve with your research.
We are excited about the Live Donor Patient and Family Group that we facilitate monthly over Zoom and we want to know if the group is serving its intended purpose, which is to increase participant’s comfort in having conversations about living donor kidney transplantation. The goal is to determine what we are doing well with the group and how it can be improved to better serve our patients and their donor champions.
How do you envision your research will benefit patients and contribute to transplant relevant knowledge?
We hope that the research will help us improve the group which will in turn increase participant’s comfort level in talking about living donor kidney transplantation. We hope our research will show the benefit of this kind of support so we can encourage all programs across British Columbia and Canada to offer similar groups.
In what ways are you working to integrate the lived experience lens of patient partners in this project?
We will be inviting our two patient partners, who are both recipients of living donor transplants, to assist in the development of survey and interview questions. We recognize the wisdom and insight of our patient partners who can ensure that our questions will be meaningful and relevant while helping with the readability and usability of the questions.