PATIENT AND CAREGIVER INVOLVEMENT IN IDENTIFYING AND DESIGNINIG INTERVENTIONS FOR RESEARCH IN CHRONIC KIDNEY DISEASE: A SYSTEMATIC REVIEW
Miss Rebecca Wu1,2, Mr Javier Recabarren Silva1,2, Miss Anastasia Hughes1,2, Mrs Allison Jaure1,2
1The University Of Sydney, Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia
Aim: To evaluate the involvement of patients and caregivers in the identification and design of interventions for research in chronic kidney disease (CKD).
Background: Patients and caregivers are rarely involved in identifying and designing interventions to be evaluated in research and as such, the interventions may not address their needs and priorities.
Methods: Electronic databases were searched to April 2024 for articles that described the involvement of patients and caregivers in the identification and design of interventions for research in CKD. The findings were synthesised using a framework that addressed the type of intervention, purpose and reason of involvement, population involved, mode of involvement, and impacts of the involvement on the intervention.
Results: We identified six studies that involved patients with CKD (n=129) and/or caregivers (n=23). Interventions included a patient navigator program, an arts-based program, and digital interventions (e.g., mobile exercise app, animated video curriculum, self-management program). Patients and caregivers identified and prioritised intervention components and provided feedback on the intervention design. They were involved as members of steering committees and advisory groups, and provided input in workshops, interviews, and focus groups. The input of patients and caregivers resulted in the addition and changes to intervention features, such as content, delivery, and materials, to personalise the intervention and to improve its inclusivity and accessibility.
Conclusions: Patient and caregiver involvement in the identification and design of interventions for research in CKD is very limited and mostly in educational, lifestyle, and navigator interventions. Involving patients and caregivers during the identification and design of interventions can ensure better alignment with their needs, thus maximise the uptake and impact of interventions.
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.