PATIENT AND CAREGIVER PERSPECTIVES ON MENTAL HEALTH IN CHILDREN AND ADOLESCENTS WITH CHRONIC KIDNEY DISEASE
MR LUCA GAETANO TORRISI1,2, DR ANITA VAN ZWIETEN1,2, MRS CHANDANA GUHA1,2, MS MARIANNE KERR2, PROFESSOR JONATHAN CRAIG3, PROFESSOR STEPHEN ALEXANDER2, PROFESSOR ALLISON JAURE1,2
1Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia, 2Sydney School of Public Health, The University of Sydney, Sydney, Australia, 3College of Medicine and Public Health, Adelaide, Australia
Aim: This study aimed to describe the perspectives of patients and caregivers on mental health in children and adolescents with chronic kidney disease (CKD).
Background: Young patients with CKD have an increased risk of poor mental health, which can impair quality of life and capacities for self-management. Patient and caregiver perspectives on mental health may inform the development of interventions to improve mental health in children with CKD.
Methods: We conducted a secondary analysis of data from the Standardized Outcomes in Nephrology (SONG – Kids) initiative, which aimed to identify critically important core outcomes in trials in children with CKD. We extracted and thematically analysed data on mental health from the responses of 120 patients (aged 8-21 years) and 250 caregivers of children with CKD across 53 countries who participated in sixteen focus groups, two consensus workshops, and an international Delphi survey for the SONG-KIDS initiative.
Results: We identified five themes: distressed by medical trauma (traumatised by invasive procedures, unrelenting demands of medication and treatments), struggling with a frail identity (demoralised by a restricted lifestyle, shattered body image, victim of bullying), worried by ongoing uncertainty about health (confronting own mortality, apprehension awaiting medical results), disappointed by narrowed vocational opportunities (unable to reach academic potential, thwarted career goals), and struggling with the absence of support (inadequate psychological support, descending into loneliness and isolation).
Conclusions: Children and adolescents with CKD may feel vulnerable, and anxious about their health, harbor a sense of failure and disappointment and experience medical trauma. Access to psychological support for children with CKD may help to improve mental health outcomes, improve quality of life and ability to self manage.
Biography:
Luca Gaetano Torrisi is a Research Assistant at the Centre for Kidney Research, Westmead, Sydney. Luca contributes to the SONG steering committee and co-chairs the ANZDATA Consumer Group. Since 2009, Luca has passionately advocated for Kidney Health Australia. Holding a Bachelor’s degree in Psychology, Luca is now pursuing a Master’s in Public Health (Chronic Disease Prevention) at The University of Sydney. As a kidney transplant recipient since 2009, Luca’s personal journey reinforces his dedication to kidney health advocacy and research, blending personal experience with academic pursuit for comprehensive insights into chronic disease prevention strategies.