Rationale & Objective
Children and adolescents with chronic kidney disease (CKD) are at risk of depression and other mental health conditions, which can impair quality of life, the capacity for self-management and adherence to treatment, and overall health. This study aimed to describe the perspectives of patients and caregivers on mental health in children and adolescents across all stages of CKD.
Study Design
Qualitative study.
Settings & Participants
A secondary analysis of a consensus, multi-stage and inclusive process designed to establish core outcomes for children with CKD [Standardised Outcomes in Nephrology–Children and Adolescents (SONG-Kids)]. A total of 120 children and 250 caregivers, from 53 countries, who participated in 16 focus groups, two consensus workshops and an international Delphi survey were eligible for inclusion.
Analytical Approach
We conducted a secondary thematic analysis of all qualitative data from the (SONG-Kids).
Results
We identified five themes: struggling with a frail and sick identity (demoralized by a restricted lifestyle, shattered body image, victim of bullying, and descending into loneliness and isolation), worried by ongoing uncertainty about health (confronting own mortality and apprehension awaiting medical results), disappointed by narrowed vocational opportunities (unable to reach academic potential and thwarted career goals), distressed by medical trauma (traumatized by invasive procedures, and unrelenting demands of medication and treatment) and despair without adequate psychological support.
Limitations
The transferability of the findings may be limited as the study was conducted in English.
Conclusion
Children and adolescents with CKD may feel vulnerable, experience fear and anxiety about their prognosis and health, harbour a sense of failure with disappointment, and experience medical trauma. Improving ways to address fears and uncertainty about health, disruption to lifestyle and identity, and medical trauma in children with CKD are needed.
Luca G Torrisi, Anita van Zwieten, Chandana Guha, Marianne Kerr, Amanda Sluiter, Anastasia Hughes, Jonathan C Craig, Aditi Sinha, Allison Dart, Allison A Eddy, Hui-Kim Yap, Stephen I Alexander, Susan L Furth, Joshua Kausman, Allison Jaure
Disease Category: Kidney disease, Mental health
Disease Name: Chronic kidney disease , Mental health
Age Range: 0 - 21
Sex: Either
Nature of Intervention: Any
- Patient perspectives
- Other
We conducted a secondary thematic analysis of all qualitative data from the ( SONG-Kids) .