Patients with CKD, their caregivers report challenges to involvement in research
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In addition to the everyday burden of chronic kidney disease, patients and their caregivers report that limited opportunities and the power imbalance between them and researchers create obstacles to meaningful involvement in research.
Further, according to the study, if researchers recognized the value of patients and caregivers in CKD research and worked on this relationship, these steps could increase patient and caregiver involvement.
“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,” study co-author Talia Gutman, PhD, of the University of Sydney, said in a press release from the American Society of Nephrology.
Researchers conducted semi-structured interviews with 18 adults with CKD and five caregivers who had previously been involved in research. Participants came from Australia, the U.S., the United Kingdom and Denmark.
Following the interviews, which lasted approximately 35 to 85 minutes each, researchers thematically analyzed the transcripts for common concepts. Researchers emailed the results to participants to receive potential feedback and additional concepts for the final analysis.
Analyses revealed the following six major themes keeping participants from research involvement:
- grappling with CKD diagnosis;
- bearing the responsibility of involvement;
- battling the “big agendas,” such as changing research culture;
- seeing the person behind the patient;
- sensitivity to complexities; and
- championing the patient voice.
“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,” Gutman and colleagues concluded. “Optimizing involvement in these ways may serve to better align research priorities, produce higher-quality research of greater importance to all stakeholders, and enhance implementation of findings to practice, resulting in better care and health outcomes for patients.”
In an editorial, Kevin J. Fowler, principal of The Voice of the Patient Inc. in Missouri, agreed with the mentioned limitations, writing, “The people living with kidney disease interviewed are recognized names in the patient advocacy community. Thus, the interview subjects don’t represent the average person living with kidney disease. It would be valuable to hear from people who are not as activated or who have made the decision to not contribute to research.”
References:
- Patient and caregiver experiences and attitudes about their involvement in kidney disease research. https://www.newswise.com/articles/patient-and-caregiver-experiences-and-attitudes-about-their-involvement-in-kidney-disease-research?sc=cwhr&xy=10007438/?ad2f=1&aid=764711. Published Feb. 7, 2022. Accessed Feb. 7, 2022.
- Advancing Patient-Centered Research: Enabling the Patient Voice to Be Heard. https://medicalxpress.com/news/2022-02-patient-caregiver-attitudes-involvement-kidney.html. Published Feb. 7, 2022. Accessed Feb. 7, 2022.
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