May 29, 2025

Together with the Canadian Association of Nephrology Administrators (CANA) and the Canadian Society of Nephrology (CSN), Can-SOLVE CKD co-hosted a joint symposium at the 2025 CSN AGM in Vancouver, BC, in early May.

The session, “Finding Our Way Home: Navigating Barriers in Home Dialysis”, featured presentations from Drs. Peter Blake and Raj Mehrotra, offering both Canadian and U.S. health system perspectives, followed by a panel conversation where a diverse group of presenters and patient partners spoke about the importance of including the patient voice and preferences in navigating home dialysis.

Patient partner video offers personal perspectives

The session began with a video featuring personal stories and reflections from patient partners Bonnie Corradetti (Calgary, Alberta), Arlene Desjarlais (Winnipeg, MB), Zamira Vicenzino (Vancouver Island, BC), and Julie Robinson (Vancouver, BC).

The video showcased four distinct experiences with home dialysis, including that of a caregiver, and offered a powerful glimpse into the lived experiences of people affected by chronic kidney disease (CKD). Topics included deciding on which dialysis modality to use, the benefits of home dialysis, and the emotional and physical challenges that come with it. Each story was unique and heartfelt, with a common thread around the need for patient advocacy, perseverance, and hope.

Panel highlights importance of shared learnings

The session concluded with a moderated fireside chat led by Dr. Robert Quinn and featuring Drs. Blake and Mehrotra, CANA Chair Janet Graham, and patient partners Arlene Desjarlais and Shelagh Brennan (Vancouver, BC). The panel fielded audience questions and highlighted the value of lived experience in clinical discussions. Caregivers played a vital role in the conversation, emphasizing the shared responsibility and resilience found in many patient-caregiver relationships.

Arlene, who was a caregiver to her late husband Glen, stressed the importance of attending doctors’ appointments, listening, and advocating for yourself or the person you care for. Speaking about her experience supporting Glen as he went through home dialysis, she shared, “You know how to live with it clinically, but you don’t know how to live with it practically.”

The conversation underscored the need for health care providers to engage meaningfully with both patients and caregivers. Understanding the emotional, practical, and social dimensions of CKD and home dialysis can lead to more responsive, compassionate, and effective care.