Reena Davis was diagnosed with kidney disease in her early 20s and was told she might need hemodialysis in the future. But knowing dialysis might happen and actually experiencing it are two very different things. More than 20 years after her diagnosis, Davis experienced sudden kidney failure, and the abrupt transition to hemodialysis caught her off guard—physically and mentally.  

“I was feeling pretty miserable, like life wasn’t mine anymore,” she recalls.  

At the time, Davis was a part-time fitness and yoga instructor who loved staying active. But the creation of a fistula and the intense fatigue caused by hemodialysis left her unable to participate in physical activity the way she had before. In the first month, she also wasn’t permitted to drive herself to and from dialysis appointments, which compounded her feelings of lost independence.  

Davis is not alone in struggling with these life-altering changes. Many people on hemodialysis identify mental health as a major concern. The Mind the Gap research project was created in response to these needs, leading to the development of a novel pilot program that will offer mental health counselling to people as they complete their in-centre hemodialysis sessions.  

“It’s going to be a game changer,” says Davis, noting that the program will offer patients tips and coping strategies they can use immediately to address their concerns.  

Identifying and prioritizing mental health concerns 

Mind the Gap began in 2016 as Triple I, one of Can-SOLVE CKD’s Phase 1 research projects. Early work focused on gathering insights from patients, caregivers, and clinicians about the challenges of hemodialysis care and ideas for improving it.  

These findings laid the foundation for Phase 2, when the project evolved into Mind the Gap and zeroed in on mental health. Guided by patient partners like Davis, the research team surveyed 332 people on hemodialysis and their families, along with 164 care providers, to better understand mental health challenges.  

After collecting the survey data, the Mind the Gap team hosted a prioritization workshop with multiple people with facility-based hemodialysis experience, including patients and their caregivers, clinicians, researchers, and decision makers. Together they identified the five top mental health challenges:  

1. Loss of control (Sub-theme: Displacement) 
2. Lack of acceptance/adjustment to the situation 
3. Lack of trust in health care providers and/or system 
4. Dialysis-related symptoms 
5. Feeling overwhelmed (Sub-theme: Difficulty coping) 

This process led to the proposal of the novel pilot study to offer counselling during hemodialysis sessions. The pilot is set to launch later this year at Seven Oaks General Hospital in Winnipeg, Manitoba. 

Project coordinator Ashley Seitz says working closely with patient partners has been essential. “I learn so much every time I have a conversation with them,” she says. “They bring their experience to the project, and their voices are just so powerful.”  

Closing the gap

Reena Davis, who received a kidney from her cousin, sees great value in the counselling pilot program. After her own experience on dialysis, she became a mental health counsellor and now has a clearer view of how she could have handled things if she’d had proper mental health support during that difficult period.  

“Now I can see what might have been different if I’d had certain tools in my tool bag and managed my mental health more at that time,” she says.  

Russell Malabanan, a Master’s student who led the survey, agrees that mental health in dialysis care is often overlooked. “Mental health affects everyone, same as physical health, but for some reason it’s not as talked about,” he says, noting the lack of mental health resources that exist for the broader population, let alone for people dealing with the unique challenges of dialysis. 

In May, Malabanan traveled to the Canadian Society of Nephrology’s annual meeting in Vancouver to present a poster of the survey results to the broader kidney community. The poster spurred many comments from patients at the meeting, who said it was encouraging to see this kind of research being done and described it as long overdue. “They told me they felt reassured that we were doing this research and that it would be impactful,” he says.  

The Mind the Gap team is also working to ensure the project meets the mental health needs of Indigenous people in a culturally competent and relevant way. Indigenous people experience kidney disease at three times the rate of the general population and face unique challenges, especially those living in remote areas.  

Earl Halcrow, a Cree man from Nisichawayasihk First Nation in Manitoba, is sharing his perspective with the research team as an Indigenous patient partner. He notes that Indigenous people in rural Manitoba often have to travel long distances—or even relocate—for dialysis, which can have a major impact on mental health.  

“It’s a hard life. Hemodialysis takes a toll on you,” he says. But he adds that talking to health care professionals can be helpful and people on hemodialysis should be encouraged to seek counselling and support when they can. “I wish for projects like Mind the Gap to get more funding and for more of us [hemodialysis patients] to break out of our shells and talk about what we’re going through.” 

Learn more about Mind the Gap.