Excellent and insightful review of the IM-HOME article.
I'm the grateful recipient of a preemptive kidney txp from a living donor. What struck me in reading your piece is that the same barriers to home dialysis (save for space at home) are barriers to living donation transplant: fear, lack of education, concern with resources, payment sys…
Excellent and insightful review of the IM-HOME article.
I'm the grateful recipient of a preemptive kidney txp from a living donor. What struck me in reading your piece is that the same barriers to home dialysis (save for space at home) are barriers to living donation transplant: fear, lack of education, concern with resources, payment systems, provider perspectives in evaluation, etc. I teach a course at my transplant center on "How to Find a Living Donor" and have encounter these same concerns in almost all patients - in part because the entire transplant structure is designed for decreased donation although living donation is clearly the best treatment. I am new to this space and wonder if you have written previously about living donation or if your company does VR education regarding living donation.
Thank you, Nancy! First off, truly appreciate you sharing, reading and following along. And you're spot on - these barriers exist across the board in transplant as well. I'd love to connect and learn more about your work and the course you teach. And yes, these are very relevant and timely areas for us, so I'm excited to see your note.
Program Overview: “How to Find a Living Donor” is a 90-minute, small group interactive session that provides education about living kidney donation and, most importantly, actively engages participants in the process required to find a living donor.
Need for this program: During their transplant evaluation kidney patients are frequently advised that their best option is to find a living donor, yet there is often little detailed guidance about finding a living donor beyond references to resources or advising patients to “talk to family and friends” and “share their story”. This approach often leaves patients with little understanding of exactly what they need to do, i.e., to whom should they talk? what do they say? what is their story? This program is designed to answer those questions and help patients clearly know what to do to find a living donor.
How this program differs from other programs: Although there are many available resources about finding a living donor, such resources are likely to be inadequate for many patients as it is an entirely different process to passively listen to or read information about seeking a donor rather than to actively engage in the process. Because it is absolutely essential that patients be active in their pursuit of a donor, as contrasted with most medical situations in which a patient can remain relatively passive, active learning and self-advocacy are critical aspects of this program that differentiate it from other programs. A second difference of this program is the consistent discussion of the emotional aspects of finding a living donor. The process of finding a living donor is inherently anxiety-producing, placing patients in an extremely uncomfortable and vulnerable position psychologically. Anticipating, validating and normalizing this range of emotions is intentionally designed to help patients move forward despite these formidable emotional challenges.
Program Description: Roughly the first third of the program provides basic education about kidney donation to assure that participants are able to have informed and accurate conversations with potential donors. The difficult emotional aspects of finding a living donor and the required sustained commitment are emphasized. The second part of the program involves participants actually writing a draft of their story. Participants first share with the group an outline of the key components they want to include in their story. Following feedback, a short time later everyone writes a first draft of their story and again shares this draft aloud for practice and feedback. The third part of the program discusses how and where to share their story, including the variety of options for sharing their story beyond individual conversations. Finally, participants list their decisions about how and with whom they will share their story and assign themselves deadlines (this information is not shared).
My background: I am a PKD patient and the incredibly grateful recipient of a pre-emptive transplant from an unrelated living donor. Beyond my immediate credibility as someone who used the process being described to find a living donor, I am a university professor. From my professional background I am accustomed to teaching and engaging individuals through active learning. Having experienced the entire transplant process myself, I am extremely sensitive to the emotional vulnerability of people who are often desperate, yet frequently incredibly frustrated and discouraged about finding a donor. The goal of this program is to move patients beyond their passive confusion or denial and share with them a pathway as to how they can move forward toward transplant.
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!6J-Z!,w_80,h_80,c_fill,f_webp,q_auto:good,fl_progressive:steep,g_auto/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F55686857-6b99-45a6-ac0f-09c9f023f2a0_500x500.png)
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Excellent and insightful review of the IM-HOME article.
I'm the grateful recipient of a preemptive kidney txp from a living donor. What struck me in reading your piece is that the same barriers to home dialysis (save for space at home) are barriers to living donation transplant: fear, lack of education, concern with resources, payment systems, provider perspectives in evaluation, etc. I teach a course at my transplant center on "How to Find a Living Donor" and have encounter these same concerns in almost all patients - in part because the entire transplant structure is designed for decreased donation although living donation is clearly the best treatment. I am new to this space and wonder if you have written previously about living donation or if your company does VR education regarding living donation.
Thank you, Nancy! First off, truly appreciate you sharing, reading and following along. And you're spot on - these barriers exist across the board in transplant as well. I'd love to connect and learn more about your work and the course you teach. And yes, these are very relevant and timely areas for us, so I'm excited to see your note.
Here's a brief description of the class.
"How to Find a Living Donor”
Nancy A. Marlin, Ph.D.
Transplanted, December 2018
Program Overview: “How to Find a Living Donor” is a 90-minute, small group interactive session that provides education about living kidney donation and, most importantly, actively engages participants in the process required to find a living donor.
Need for this program: During their transplant evaluation kidney patients are frequently advised that their best option is to find a living donor, yet there is often little detailed guidance about finding a living donor beyond references to resources or advising patients to “talk to family and friends” and “share their story”. This approach often leaves patients with little understanding of exactly what they need to do, i.e., to whom should they talk? what do they say? what is their story? This program is designed to answer those questions and help patients clearly know what to do to find a living donor.
How this program differs from other programs: Although there are many available resources about finding a living donor, such resources are likely to be inadequate for many patients as it is an entirely different process to passively listen to or read information about seeking a donor rather than to actively engage in the process. Because it is absolutely essential that patients be active in their pursuit of a donor, as contrasted with most medical situations in which a patient can remain relatively passive, active learning and self-advocacy are critical aspects of this program that differentiate it from other programs. A second difference of this program is the consistent discussion of the emotional aspects of finding a living donor. The process of finding a living donor is inherently anxiety-producing, placing patients in an extremely uncomfortable and vulnerable position psychologically. Anticipating, validating and normalizing this range of emotions is intentionally designed to help patients move forward despite these formidable emotional challenges.
Program Description: Roughly the first third of the program provides basic education about kidney donation to assure that participants are able to have informed and accurate conversations with potential donors. The difficult emotional aspects of finding a living donor and the required sustained commitment are emphasized. The second part of the program involves participants actually writing a draft of their story. Participants first share with the group an outline of the key components they want to include in their story. Following feedback, a short time later everyone writes a first draft of their story and again shares this draft aloud for practice and feedback. The third part of the program discusses how and where to share their story, including the variety of options for sharing their story beyond individual conversations. Finally, participants list their decisions about how and with whom they will share their story and assign themselves deadlines (this information is not shared).
My background: I am a PKD patient and the incredibly grateful recipient of a pre-emptive transplant from an unrelated living donor. Beyond my immediate credibility as someone who used the process being described to find a living donor, I am a university professor. From my professional background I am accustomed to teaching and engaging individuals through active learning. Having experienced the entire transplant process myself, I am extremely sensitive to the emotional vulnerability of people who are often desperate, yet frequently incredibly frustrated and discouraged about finding a donor. The goal of this program is to move patients beyond their passive confusion or denial and share with them a pathway as to how they can move forward toward transplant.