IMPACTS OF RESEARCH THAT ARE MEANINGFUL AND IMPORTANT TO PATIENTS LIVING WITH CHRONIC KIDNEY DISEASE AND THEIR CAREGIVERS
Miss Rebecca Wu1,2, On behalf of all BEAT-CKD Investigators
1The University of Sydney, Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia
Aim: To identify the impacts of research that are meaningful and important to patients with chronic kidney disease (CKD) and their caregivers.
Background: It is widely acknowledged that research outcomes should have a meaningful impact on patients, however, the specific impacts that hold importance for patients and caregivers remain unclear.
Methods: We convened a national workshop involving patients with CKD and caregivers (n=31) and health professionals (n=66) from Australia. Across ten facilitated breakout groups, participants discussed the meaningful and important impacts of research. Transcripts were analysed thematically.
Results: Six themes (impacts) were identified. ‘Enhancing daily living’ encompassed reducing symptoms and complications and minimising the burden of treatment. ‘Generating societal awareness and acceptance’ involved destigmatising kidney disease and fostering a greater understanding of CKD among the community. ‘Improving access to care’ included eliminating geographical barriers, providing financial support, and increasing awareness for early detection of CKD. ‘Strengthening agency in decision making’ captured empowering patients for making informed decisions and for self-management. ‘Achieving a breakthrough in treatment’ was about finding a cure and making innovative advancements in dialysis technology. ‘Offering hope for future generations’ reflected the potential for research to improve the lives of the next generation of patients, and this could include, in the case of genetic kidney disease, their children.
Conclusions: Improved daily living among patients with CKD, societal acceptance, empowerment for decision-making and self-management, and enhanced access to care have been identified as impacts of research that are meaningful and important to patients with CKD and caregivers.
Biography:
Rebecca is a research assistant at The University of Sydney and centre coordinator at the Centre for Kidney Research. Rebecca has a background in nutrition and dietetics and is passionate about improving health outcomes through engagement and partnership. As part of the Better Evidence and Translation – Chronic Kidney Disease (BEAT-CKD) team, Rebecca’s work focuses on fostering collaboration among researchers, health professionals, and patients to enhance the lives of individuals living with chronic kidney disease.