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

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

doi:10.1093/ckj/sfaf067

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

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

College of Medicine and Public Health

Research output: Contribution to journal › Article › peer-review

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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.

Original language	English
Article number	sfaf067
Number of pages	8
Journal	Clinical Kidney Journal
Volume	18
Issue number	4
DOIs	https://doi.org/10.1093/ckj/sfaf067
Publication status	Published - Apr 2025

Keywords

adolescents
children
chronic kidney disease
mental health
patient-centered care

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1093/ckj/sfaf067Licence: CC BY

Final published versionFinal published version, 547 KBLicence: CC BY

Cite this

Torrisi, L. G., van Zwieten, A., Guha, C., Kerr, M., Sluiter, A., Hughes, A., Craig, J. C., Sinha, A., Dart, A., Eddy, A. A., Yap, H. K., Alexander, S. I., Furth, S. L., Kausman, J., & Jaure, A. (2025). Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease. Clinical Kidney Journal, 18(4), Article sfaf067. https://doi.org/10.1093/ckj/sfaf067

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title = "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.",

keywords = "adolescents, children, chronic kidney disease, mental health, patient-centered care",

author = "Torrisi, {Luca G.} and {van Zwieten}, Anita and Chandana Guha and Marianne Kerr and Amanda Sluiter and Anastasia Hughes and Craig, {Jonathan C.} and Aditi Sinha and Allison Dart and Eddy, {Allison A.} and Yap, {Hui Kim} and Alexander, {Stephen I.} and Furth, {Susan L.} and Joshua Kausman and Allison Jaure",

year = "2025",

month = apr,

doi = "10.1093/ckj/sfaf067",

language = "English",

volume = "18",

journal = "Clinical Kidney Journal",

issn = "2048-8505",

publisher = "Oxford University Press",

number = "4",

}

TY - JOUR

T1 - Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease

AU - Torrisi, Luca G.

AU - van Zwieten, Anita

AU - Guha, Chandana

AU - Kerr, Marianne

AU - Sluiter, Amanda

AU - Hughes, Anastasia

AU - Craig, Jonathan C.

AU - Sinha, Aditi

AU - Dart, Allison

AU - Eddy, Allison A.

AU - Yap, Hui Kim

AU - Alexander, Stephen I.

AU - Furth, Susan L.

AU - Kausman, Joshua

AU - Jaure, Allison

PY - 2025/4

Y1 - 2025/4

N2 - 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.

AB - 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.

KW - adolescents

KW - children

KW - chronic kidney disease

KW - mental health

KW - patient-centered care

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U2 - 10.1093/ckj/sfaf067

DO - 10.1093/ckj/sfaf067

M3 - Article

AN - SCOPUS:105002594449

SN - 2048-8505

VL - 18

JO - Clinical Kidney Journal

JF - Clinical Kidney Journal

IS - 4

M1 - sfaf067

ER -

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

Abstract

Keywords

UN SDGs

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