Abstract: PUB321
National Study to Understand How Young People Cope with CKD and CKD with Other Conditions
Session Information
Category: Pediatric Nephrology
- 1900 Pediatric Nephrology
Author
- Muhammad, Shahid Nazir, Coventry University, Coventry, England, United Kingdom
Background
Introduction: Chronic Kidney Disease (CKD) is an irreversible disease profoundly affecting the person living with the illness, from the person's physical health through to the impact on the person's life style and healthcare. Young people with CKD (10-25 years) and young people with other long-term conditions (10 -25 years) face a life time of challenges associated with this chronic illness. However further data is now required to better understand how young people CKD patients cope over time, and where they can have healthcare challenges throughout ailment trajectory. Aim: The projected research will now look to understand coping in children/ young people with CKD and children/ young people with CKD and other long-term conditions (10-25 years) involving participants from two social media platforms – The Renal Patient Support Group (RPSG) and The Kidney Disease and Renal Support Group (RPSG) and several childrens/ young peoples hospitals, one (1) adult kidney hospital and one (1) young peoples youth service in the United Kingdom.
Methods
This study will involve the implementation of mixed methodology (Quantiative and Qualitative) data collection methods in order to attain an in-depth understanding of coping in young people with CKD (10-25), CKD and other healthcare conditions (10-25), young healthy people (10-25) and parents/ guardians, collecting data at several time points upto 24 months.
Results
Quantitative: All young people will be invited to complete the Ways of Coping Survey (or WAYS) (Folkman and Lazarus 1984) at 0, 6, 12, 18 and 24 month time points. Up to 100 children/ young people will be invited to complete a paper or online version of a validated Ways of Coping Survey (or WAYS). questionnaire. Qualitative: Participants will be invited to participate in one to one Face-to-Face interviews and/ or Focus Groups (depending on how man children/ young people are recruited at each partcipating site).
Conclusion
Quantitative: Understanding how young people cope with different forms of disease should be an integral part of kidney care. The main outcome for this project is to envisage a co-developed National Coping Guideline to complement clinical practices for young people suffering with CKD and CKD with other healthcare conditions.