Patient and Caregiver Experiences and Attitudes about Their Involvement in Research in Chronic Kidney Disease.
Talia GutmanAyano KellyNicole Jane Scholes-RobertsonJonathan C CraigShilpanjali JesudasonAllison TongPublished in: Clinical journal of the American Society of Nephrology : CJASN (2022)
The burden of CKD, limited opportunities, and power asymmetry between patients/caregivers and researchers were challenges to meaningful involvement in research. Building trust, awareness of opportunities, and recognizing the broad expertise and value of patients/caregivers, including and beyond their illness experience, may better support patient and caregiver involvement in research in CKD.