Explore Transplant, The Early Years

Saint Louis, MO – This month we caught up with Christina Goalby, MSW. Christina is the co-creator of the Explore Transplant Provider Training Programs. She’s responsible for the development of Explore Transplant’s Master Trainers and helps to oversee the quality of ET Trainings. Christina has been a nephrology social worker for more than 20 years. Today she’s a Health Literacy Education Manager at Health Literacy Media, the organization that partners with and administers ET’s programs and services.

Christina talks to us about ET’s early days and why she believes in equal educational access for dialysis patients, their families and the health care providers who help them.

Q: Hi Christina. To begin, I’m wondering if you can describe how you got your start working for Explore Transplant and what it was like getting programs and provider trainings off the ground in the early days?

In 2008 Amy [Waterman, ET Founder] recruited me from the world of dialysis where I had been working since 1996. I remember that Amy had applied for a big grant, which she was going to use to roll out her Explore Transplant (ET) education to dialysis providers. The print and video education that Amy had developed was already in existence at this time, and it had been proven to increase patients’ knowledge and confidence about taking small steps toward transplant and living donation. If she were to win the new grant, she wanted me to help her create live training sessions for dialysis providers to learn more about transplant education and decision-making.

Since I knew this space really well, I was going to be her training co-leader. Of course she won the grant and won me over too. That’s when I switched jobs from out-patient chronic dialysis to Washington University School of Medicine where she was then a professor.

I was actually really nervous because the trainings meant that I was going to be standing in a series of big rooms with a mic in my hand, teaching my colleagues for the very first time about a new program. It was a lot of newness at once, but at the same time I was really excited to help my colleagues and educate a large group of dialysis professionals. In the early days of the trainings we rolled them out to many people. I remember that we did 12 trainings in our very first year, which is a lot! It was very fast and furious, no doubt, but the feedback was so positive!

The really nice thing about how the trainings started is that a large number of the participants were my colleagues working in the same region as me, so I was really familiar with the area, the culture of the dialysis centers there, and the needs of my peers.

Q: Could you talk more about the original print and video education on which the trainings were based and your role in shaping those over the years?

The Explore Transplant and Living Donation family of programs currently consists of three parts, however this was not always the case. In the beginning, we started with Explore Transplant, which included four guided videos, brochures, and fact sheets for kidney patients, with additional information about how their families or communities could help them explore transplant. The program gave patients the tools to make an individualized plan choosing which transplant-related steps were right for them and sharing these with their families and medical teams. Coupled with the Explore Transplant Training Seminars, patients became more ready to pursue transplant and take steps towards living donation with the support of their dialysis providers.

Over the past several years, the transplant community came to us asking for education support that focused more on living donation for potential recipients and their loved ones, so we developed the Explore Living Donation program with two parts: one called For Kidney Patients and one called For Family and Friends. Each part of the program was designed to help their respective audiences learn about the advantages of living donation compared to waiting for a deceased donor transplant, different types of directed donation and paired exchange programs, the process of living donor evaluation, surgery and recovery, and the risks and benefits of donating.

The ELD program, which is still thriving today, is now combined into one program and continues to address commonly held concerns about living donation and shares real-life transplant stories of donors and recipients. Kidney patients and their loved ones also receive supplementary resources to help them start the process of finding living donors.

Q: What was the immediate reaction to the trainings? How did people respond?

The thing that struck me was that my peers were so relieved that there were going to be these resources out there for them to access easily. They had never had this before and so it was a big deal to know you would have the tools you needed to educate patients about transplant and do so chair-side, at the dialysis center. People were really grateful for the support.

Q: Why are you passionate about helping educate people about transplant? Where did this come from?

When I graduated from graduate school, I knew that I wanted to work in health care, specifically to help people who had chronic diseases. I think this area called to me, because patients with an invasive chronic disease really deserve and need a lot of extra support and I felt ready to lend that support. Chronic disease doesn’t just affect the patient, but their whole family.

I actually fell into the renal area, which was not something I was that familiar with. But, once I started working with the patient population in dialysis centers I stayed with it for 20 years. I think I did so in part because the difference we can make and the difference the education makes is huge. To really empower someone and give them the tools to make decisions with their families kept me engaged. Also, to know what a difference the right training makes for providers and to hear how it helps them make their work easier is a huge highlight of my job.

Q: How did you develop the “bones” of the training, deciding which components to include and what people would really need?

Print and video education was already developed by Amy and were proven to be one of the best practices in the field for educating patients with kidney failure. Because it was not feasible for Amy and her research team to go chair-side and talk to patients all over the country, we needed a more systematic approach. Ultimately we landed on the fact that we could be most effective at reaching individual patients and their loved ones chair side by training the people who were responsible for helping them, meaning the providers. Amy wrote a grant to allow us to develop a train the trainer model. She had the transplant education background and I had the dialysis background. As co-leaders who were educating dialysis providers, we needed to have someone who could understand the needs of that professional community. We were able to formulate the training based on my experience working with my colleagues in the field. We were able to directly address the issues that I knew the people that I worked with were already grappling with, since I has been embedded in that world for so many years.

Q: Are there any stories or parts of your job that stick out for you when you think about all of the people you’ve interacted with over the years?

I think there are a few things that we talk about during the training. First, I definitely believe that there should always be enough education even if there are not enough kidneys available for transplant. Everyone deserves the same access to knowledge and the decision-making toolkit. I’d also add that learning the theory, meaning the Transtheoretical Model of Behavioral Change, which is behind the trainings and understanding how to employ it properly has really resulted in a shift in the way I think about educating patients. And I see that for dialysis providers, their lightbulb comes on when they finally understand how to educate patients and to do it in a way that can get through to people. Thinking about it now, the theory has so many applications beyond just transplant. Providers always say that knowing the theory helps them change their approach entirely when approaching patients because it changes your way of thinking before it changes your way of doing.

Q: What are the greatest challenges to contend with and the joys you have working in your field?

The challenge is that across my field, we still don’t have standard education that is accessible to every provider out there. This needs to be the case, we have to work really hard to make this happen. Even though we have done 120 + trainings for ET, we need to do more. Every provider needs to be able to be educated and have the materials they need to reach every patient. The second challenge is that I still notice that there are too many patients coming to dialysis without any prior knowledge of transplant. Education about all of the options needs to start sooner.

As far as the joyful parts of my job, it would be the fact that the trainings really do work. To be able to educate providers and then see a significant change in what they know, their confidence and their ability to educate patients, this has been really moving.

Q: If you were talking to a random stranger who didn’t really know about or wasn’t particularly interested in transplant related issues, what are the key kernels of info you’d want them to walk away knowing?

There is not enough info publicly about the need for transplants and living donation. The kidney is one of the organs that’s most in need, it’s the most expensive to maintain, because dialysis costs a lot in the long run when compared to a transplant. People should know this. More info needs to be put out there about the need, getting society to speak more commonly about this issue might really make a difference and help shift the statistics of who is getting involved. More people might come forward to inquire about being a living donor than those who already are.

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