Supported Research

Lay Summary

Identifying the Support Needs and Care Priorities of Patients and Families During the Transition to Home Dialysis More Canadians are getting kidney failure and will need treatment to replace their kidney function (dialysis). There are many dialysis options, one of which is home dialysis. Home dialysis is being promoted by our healthcare system as it has many benefits. However, high levels of support are needed for it to be successful as the patient or family sets up and performs the dialysis themselves at home. Without this support, patients can experience overwhelming responsibility, and many find it hard to do home dialysis. This is especially true during the transition to home dialysis, which patients describe as a particularly difficult time. Little is known about the support needs and priorities in care for patients and families during this time, which makes it hard for programs to put successful interventions in place to support them. This leads to a need for research to be done in this area. We will identify care priorities and support needs for people transitioning to home dialysis in Canada. This project will be guided by input from patient and family partners, national and international home dialysis clinician leaders, front-line staff and health system administrators. This will be done in three parts. In part one we will observe and talk to people on home dialysis at important times throughout their transition. Patients will have the option of documenting their own experience in a way that fits best with them, including journaling or taking pictures. This will help us identify what is important to them at different stages. In part two we are going to bring people transitioning to home dialysis across Canada in focus groups to share their experience about what their needs were at different stages, and what factors impacted how these needs were met. This will help us identify broader support needs and care priorities. Lastly, we are going to have a two-day workshop where we will bring patients and family members, healthcare workers and administrators together to come up with ideas for ways dialysis programs could better meet these needs. This work will provide valuable information that will help us develop an intervention for use in clinical settings. It is our hope that by creating a more supportive transition experience that patients will have better outcomes on this type of dialysis and that kidney programs will have a better idea of how to address patient and family needs.