Lights! Camera! Action! It’s not exactly the phrase you’d expect to hear in The Scarborough Hospital’s Chronic Kidney Disease Program. Yet last month, a film crew taped a 15-minute video designed to help new dialysis patients cope with emotional and physical challenges of living with kidney failure.
“The idea came up three years ago: a video focusing on the stories of our dialysis patients,” explains Elizabeth Anderson, Clinical Resource Leader for Chronic Disease Management at TSH. “By having actual dialysis patients tell their stories, we’re hoping it will impact new patients in the program, and help them make an earlier decision to start dialysis in a timely manner.”
For Paulette Lewis, a Nurse Practitioner in the kidney clinic for the past eleven years, the video will be a valuable educational tool.
“Many patients who come to us are reluctant to start dialysis. After all, it’s not like something you do for a few weeks and be done with it: dialysis is for the rest of your life,” Paulette explains. “The symptoms of kidney failure are very insidious; many patients don’t feel a thing and then, all of a sudden, it’s like they drop off a cliff. This video will help new patients understand that, once they start on dialysis, it can make a positive difference in their lives.”
The video focuses on eight patients, one Nephrologist and one Nurse Practitioner. The original intent was to be clinically focused – touching on the modalities, vascular access and training – but after three focus groups of dialysis patients provided their input, the project took a 180 degree turn and will now focus on the emotional and psychological impact dialysis has on a patient’s life.
“Patients in the focus groups talked openly about the need for emotional support, and the emotional rollercoaster they went through when they learned they required dialysis,” explains Pat Taylor, Patient Care Manager for Chronic Disease Management. “The younger patients wanted to be connected with people their own age, with jobs and young families, homes and marriages, to understand that dialysis can happen and you can still maintain a great quality of life.”
That’s exactly why dialysis patient Wayne Tam was keen to participate in the video.
“I learned ten years ago that I had kidney problems, but it’s only been in the last year when my kidney function fell below 15 per cent, and it was recommended I start dialysis,” explains Wayne, a young professional. “When I started, there was a lot of support on the physical challenges, but the emotional support was more difficult. I used to be very active, spontaneous, and with dialysis, I had to readjust my lifestyle.”
Wayne fell into an eight-month depression and spent most of his time in bed, until he forced himself to do something. He discovered photography, and that gave him the mental focus he needed to get back to living a normal life.
“I think if this video was available to me when I first started dialysis, it would have helped me avoid the emotional pitfalls,” Wayne adds. “I will share how I went through the emotional part of it, how I worked my way out of it. I hope what I have to share will give someone else a way to understand what’s happening to them.”
The video is expected to be completed in mid-December, and a video launch is planned for sometime in January. It will also be offered to other renal programs in the province.