Whether you’re a chronic kidney disease (CKD) patient or caregiver, navigating this long-term condition is a challenge. Researchers have identified this as a possible barrier for patients and caregivers participating in studies. However, to make strides in improving CKD care, we need patients to participate. 

Researchers from the University of Sydney in Australia interviewed CKD patients and caregivers to discover factors that supported their involvement or created challenges to research participation. Learn more about what they discovered from past research participants and what it could mean for the future of care. 

What The Researchers Did

Dr. Talia Gutman, Ph.D., and her colleagues conducted interviews with 23 adults with CKD and caregivers who had previously been involved in research in Australia, the United States, the United Kingdom, and Denmark. 

“We wanted to speak to patients and caregivers with lived experience of kidney disease to find out what drives their involvement, the challenges they’ve faced, and what has worked well to support them,” Dr. Gutman explains.

What They Found

After the interviews, researchers learned that participants faced many challenges, including:

• The burden of living with CKD
• The responsibility to seek out participation opportunities
• Obstructions of involvement by big agendas and power dynamics 

However, interviewers did learn the opportunities to maximize patient and caregiver involvement through:

• Seeing the whole person rather than just a patient
• Being sensitive to the complexities associated with financial reimbursements
• Recognizing the importance of the patient role

What It Means

From the findings, researchers developed a better understanding of patients’ and caregivers’ motivations for becoming involved and how to address barriers and provide adequate support. Gutman and her colleagues were able to create a practical framework tool for investigators, which may help them involve more patients and their families or caregivers in future studies. 

*Patient and caregiver experiences and attitudes about their involvement in kidney disease research. (2022, February 7). Newswise. Retrieved February 7, 2022, from https://www.newswise.com/articles/patient-and-caregiver-experiences-and-attitudes-about-their-involvement-in-kidney-disease-research