Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease

Abstract

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.