“I Won’t Ever Feel Normal”: Experience Reported Through Photovoice by Children with Chronic Kidney Disease

Publication Date

10-10-2024

Document Type

Article

Organizational Units

College of Arts Humanities and Social Sciences, Anthropology

Keywords

Chronic kidney disease, Children, Coping, Experience, Family, Needs

Abstract

Background

Much of the global chronic kidney disease burden is experienced in low- and middle-income countries. Children living with chronic kidney disease (CKD) face medical and social challenges, and they need support at the individual and family levels. This study aimed to explore children’s experiences living with kidney replacement therapy (KRT) who attend the largest pediatric nephrology department in Guatemala.

Methods

This qualitative study used photovoice and asked children to take pictures that represented what is like to live with CKD. Each child and their caregiver underwent an interview where the photos were used to elicit and facilitate discussion. The interviews were recorded, transcribed, and then analyzed using thematic analysis.

Results

Eight children and their mothers participated in the study. Three themes were identified: interactions with the health system, changing and difficult family dynamics, and strains on social interactions. Children face social challenges including self-isolation and alienation. The family dynamics and familial structures often are forced to change, inducing stress. This is all exacerbated by the difficulties that arise in navigating the Guatemalan health system.

Conclusions

Photovoice techniques are a feasible way to understand the experiences of children and their families who face CKD. The disease affects all aspects of life and recognizing this while advising and administering care can help provide a comprehensive level of care. Health systems need to make efforts aimed at improving the quality of care as well as the multidisciplinary support available to children and their families.

Copyright Date

10-10-2024

Copyright Statement / License for Reuse

All Rights Reserved
All Rights Reserved.

Rights Holder

Alejandro Cerón, Maria Renee Ortiz Ortiz, Isabelle Nierman, and Randall Lou-Meda

Provenance

Received from author

File Format

application/pdf

Language

English (eng)

Extent

9 pgs

File Size

793 KB

Publication Statement

Copyright is held by the authors. Under exclusive license to International Pediatric Nephrology Association. User is responsible for all copyright compliance. This article was originally published as:

Cerón, A., Ortiz Ortiz, M.R., Nierman, I., & Lou-Meda, R. (2024). “I won’t ever feel normal”: Experience reported through photovoice by children with chronic kidney disease. Pediatric Nephrology. https://doi.org/10.1007/s00467-024-06544-w

Provided by the Springer Nature SharedIt content-sharing initiative.

Publication Title

Pediatric Nephrology

ISSN

1432-198X

PubMed ID

39384645



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