WITHOUT FAMILY CAREGIVERS, PD FAILS: INVESTING IN THE BACKBONE OF HOME DIALYSIS
AUTHOR(S) & CREDENTIALS: Urooj Khan, MSc — PhD Candidate, University of Toronto & Cassy Hemphill, Communications and Engagement Coordinator at AGE-WELL National Innovation Hub APPTA (Advancing Policies & Practices in Technology & Aging)
AFFILIATED INSTITUTION(S): University of Toronto, Rehabilitation Sciences Institute, Temerty Faculty of Medicine & AGE-WELL National Innovation Hub APPTA (Advancing Policies & Practices in Technology & Aging)
ACKNOWLEDGEMENTS: I would like to thank all the kidney failure patients who generously shared their stories with me, my grandmother whose strength and love inspired this work, and my supervisors for their unwavering guidance, support, and encouragement throughout this project.
About the Author
Urooj Khan is a second-year PhD student at the University of Toronto whose research centers on the support needs of unpaid family caregivers for peritoneal dialysis (PD) patients. Her interest in this area stems from her personal experience as a caregiver to her grandmother, who underwent both in-centre hemodialysis and home PD.
Inspiration & Problem Statement
Khan’s involvement in dialysis care began in a deeply personal context. When her grandmother was recommended to switch from in-centre hemodialysis (with thrice-weekly, multi-hour hospital visits) to home PD, Khan saw an opportunity for comfortable, home-based care. But what she encountered was a steep learning curve: daily PD tasks, little formal instruction, and escalating stress.
Over time, the caregiving burden became overwhelming, affecting both her well-being and the quality of care. After her grandmother’s passing, Khan reflected on how better support might have prevented caregiver burnout and improved patient outcomes. That reflection became the foundation of her doctoral work.
Project Overview
Khan’s PhD project is designed in three stages to deepen understanding and shape practical solutions:
- Scoping Review
A systematic mapping of what is currently known about the experiences, challenges, and support needs of PD family caregivers throughout the caregiving trajectory.
- Qualitative Study
In-depth interviews with PD caregivers and clinicians to uncover lived experiences, pinpoint critical turning points, and identify when and how support is most needed across the caregiving trajectory.
- Consensus Workshop
A participatory session bringing caregivers and clinical stakeholders together to interpret the evidence and co-create actionable strategies for caregiver support in practice.
The Importance of This Research
Home dialysis, particularly PD, offers patients flexibility and comfort while also being a more cost-effective option for Canada. However, it depends heavily on family caregivers. Without proper recognition and support, caregivers face burnout, stress, and adverse health consequences. This puts patients at risk for suboptimal care, hospitalization, or return to in centre dialysis.
Yet the clinical and policy landscapes often omit caregivers. At best, they might receive casual check-ins like “How are you doing?”, but rarely are they systematically assessed or supported. Ensuring caregiver resilience is essential not only for caregiver well-being but also for sustaining high-quality home dialysis models.
Policy & Practice Implications
Khan’s work underscores several potential shifts:
- Formalized caregiver assessment protocols — Incorporating structured check-ins and evaluations for PD family caregivers into routine PD care
- Targeted training and respite services — To reduce burden and prevent caregiver burnout
- Incorporation into funding and policy frameworks — Ensuring caregiver support is embedded in home dialysis programs and reimbursement models
- Integrated clinical pathways — Recognizing caregivers as part of the care team, with defined roles, support, and resources
These steps would move systems beyond a strictly patient-centric approach and toward one that equally values caregivers’ health and capacity.
Next Steps & Timeline
This project is currently in its proposal stage. The scoping review will launch imminently, and the qualitative study is scheduled to begin in 2026. The subsequent consensus workshop will build upon those findings to develop real-world recommendations.
Click here to read Urooj’s Policy Brief in full!
