Ms Anastasia Hughes1, Prof Allison Jaure1, SONG-KIDS life participation workshop participants
1University Of Sydney, , Australia
Biography:
Bio to come
Aim: To identify strategies to improve life participation in children and young people with CKD.
Background:
Children with chronic kidney disease (CKD) experience impaired life participation, which has been identified as critically important outcome for children with CKD. However, little remains known about 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 54 patients and caregivers, and 118 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 and disease burden included allowing flexibility in scheduling appointments, enabling better management of medications, and controlling debilitating side-effects. Facilitating opportunities in clinical and 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 resilience and motivation included building confidence and addressing depression and anxiety.
Conclusion:
Patients with CKD, parents and health professionals believed there is a need to facilitate access to opportunities for improving life participation in clinical and community settings and embedding strategies in self-management and personal development. Further development and evaluation of interventions that address these are needed to better address life participation in children with CKD.
Presentation Slides PDF – Click Here