Better Education for Patients and their Families
Nothing is more difficult for a sick patient than asking someone – a friend, a co-worker, a loved one – to consider undergoing surgery on your behalf. Nothing, that is, except maybe not knowing what to do about an offer that comes out of the blue from a spouse, a parent, or a child.
Interview studies of kidney patients reveal patients are anxious about explaining complex, scientific information to people who might donate (“I’m no doctor, how do I talk about this?”). They feel embarrassed when they don’t receive a response or the relationship seems to become strained. They worry that they will be putting a loved one in harm’s way; or feel guilt at the thought of a failed result “(what if I reject the gift that I’ve just been given?”). Humility keeps some patients – especially women and minorities – from even beginning to consider receiving a transplant from a living donor (“I don’t deserve this”).
These emotional barriers can be overcome through better educational programs for patients. Knowledge and skill deficiencies are major obstacles to considering and finding a transplant from a living donor. Not knowing who to ask, lacking basic information or having misinformation about transplant and living donation, and not possessing the skills needed to undertake a living donor search rank as top barriers. One study found that 71% of respondents reported not knowing how to ask someone for a kidney. A later study indicated more than 75% of kidney patients felt they were not adequately educated about live donation.
Interviews with health professionals support these conclusions. One study found that 56% of dialysis clinic managers reported feeling dissatisfied with the transplant education programs at their own clinics and 57% believe their educators are not given enough time to educate their patients. In another study that surveyed kidney doctors, only 43% reported that their patients received more than 20 minutes of transplant education.
Supporting patients with kidney failure means doing a better job educating them about the decision to seek a transplant, and it means giving them the skills and tools they need to make the difficult process of asking as easy as possible. Our system isn’t doing that right now. We can do better!
Better Donor-Candidate Education
- Education and personal support.
- “There isn’t anything out there for people.”
- “There is no central website for living kidney.”
- “After I donated it was as if I didn’t exist to the hospital anymore.”
- “There’s a good little bit of information, but there were times when it felt like “this isn’t enough, there should be more.”
- Unbalanced advocacy.
- “Too much focus on the risks and things I wouldn’t be able to do.”
Transplant Education Standards
Waitlist Zero is currently developing transplant education standards for kidney patients and living donors based on a comprehensive review of the most promising transplant education practices that have been implemented to date.
The goal is to develop a set of best practices that can be implemented within the transplant field. Currently, voluntary standards for transplant education do not currently exist for kidney patients and donors. Developing these standards and seeking broad consensus for their use within the field is important because federal agencies often use voluntary standards in providing oversight for programs that they fund.
Once WaitList completes a draft of potential standards, based on a comprehensive literature review. Waitlist Zero will then apply to become an accredited developer, circulate them for comments within the transplant field, and then open them up to public comment. This process will accredit the standards and lay the foundation for extensive adoption nationally.
WaitList Zero Education Design Principles
Based on the education best practices that emerge from the Transplant Education Standards Project, WaitList Zero will implement, evaluate, refine, and replicate programs that infuse best practices. Our education programs, aim to close patient knowledge and skill gaps founded on the following education design principles:
- Content balances between the risks and benefits of living donation and addresses patient, donor, and support network perspectives.
- Support and guidance helps patients work through the anxiety and guilt associated with asking for a kidney and addresses fear surrounding concerns for the donor’s health.
- Research-based strategies, tools, and testimonials help patients to recognize and manage emotions, cope with discouraging news, and envision life post-transplant/post-donation.
- Research-based strategies and tools help patients to build skills needed to communicate health needs and identify potential living donors.
- Content, visuals, and testimonials consider cultural diversity in order to make readers/users to feel comfortable and welcome while greatly improving learning.
- Content is accessible to adults with varying levels of education.
- Financial planning tools, fundraising strategies, and other content ensure that transplant and donation is equitably available even to those from lower socio-economic strata.
- Content addresses varied learning preferences through cognitive (e.g, infographic), emotional (e.g, video testimonial), and social (e.g, social media) domains.
Transplant education standards do not currently exist for kidney patients and donors.