A qualitative study exploring patient and caregiver perspectives and experiences on disaster management in kidney care

Study Lead

Dr. Jamilah Dei-Sharpe

McGill University

Overview

This study aims to obtain the perspectives of patients with kidney diseases and their caregivers who have been directly or indirectly impacted by a disaster. Our goal is to understand the experiences, perspectives and healthcare needs of patients with kidney diseases before, during and after a disaster. To strengthen disaster management in healthcare and improve the support for patients and caregivers faced with unexpected disruptions and events.

Participants’ commitment is minimal. The study requires a commitment to a 45-60 minute interview and time to read the consent form.

Eligibility

Patients with kidney disease must:

  • Be 18 years or older

  • Be able to provide informed consent and participate in a phone or virtual interview

  • Have experience with kidney replacement therapy (dialysis or transplant)

  • Have experienced a disruption in their kidney care due to a disaster

Caregivers must:

  • Be 18 years or older

  • Be able to provide informed consent and participate in a phone or virtual interview

  • Have experience caring for someone who received kidney transplant therapy (adult or pediatric; living or deceased)

  • Have cared for a patient whose treatment was disrupted by a disaster

Type of Participation

Interview

Diagnosis

Chronic Kidney Disease, Pediatric Kidney Disease

Treatment

Conservative Kidney Management, Hemodialysis, Palliative Care, Peritoneal Dialysis, Transplantation

Topic

Caregivers, Peer Support, Quality of Life, Self-Management, Symptoms

Location

All provinces and territories

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