Identifying strategies to improve life participation in children with chronic kidney disease: report from multinational SONG workshops

Abstract

BACKGROUND: Children and young people with chronic kidney disease (CKD) experience impaired life participation, which has been identified as a critically important outcome for them. However, little remains known about strategies to improve life participation in children with CKD. The aim of this report was to identify strategies to improve life participation in children with CKD. METHODS: Four workshops (one in-person [English language], three online [two English and one Spanish language]) were held with 79 patients and caregivers, and 92 health professionals from 16 countries to discuss strategies and interventions to improve life participation in children with CKD. Transcripts were thematically analyzed. RESULTS: Four themes were identified. Emphasizing life priorities involved identifying and addressing patient values, focusing on freedom not restrictions, routinely assessing and monitoring life participation, and establishing and achieving goals. Minimizing treatment burden included allowing flexibility in scheduling appointments, enabling better management of medications, and controlling debilitating side-effects. Facilitating opportunities in community settings encompassed providing ways to engage in education, encouraging engagement in social activities, promoting physical activity and supporting work and career aspirations. Fortifying mental health, self-esteem and motivation included building confidence and addressing depression and anxiety. CONCLUSION: Patients with CKD, caregivers and health professionals identified a need for strategies for life participation to address the domains of personalized life priorities, minimizing treatment burden, facilitating access to opportunities and strengthening wellbeing. Further development and evaluation of interventions that address these are needed to improve life participation in children with CKD.