PATIENT AND CAREGIVER PERSPECTIVES ON ACCESSING HEALTHCARE FOR CHILDREN WITH CHRONIC KIDNEY DISEASE: A SYSTEMATIC REVIEW OF QUALITATIVE STUDIES

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Abstract Title *

PATIENT AND CAREGIVER PERSPECTIVES ON ACCESSING HEALTHCARE FOR CHILDREN WITH CHRONIC KIDNEY DISEASE: A SYSTEMATIC REVIEW OF QUALITATIVE STUDIES

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Co-author 1

Luca Gaetano Torrisi ltor0968@uni.sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia *

Co-author 2

Ao Zhang azha2629@uni.sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 3

Anastasia Hughes anastasia.hughes@sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 4

Germaine Wong germaine.wong@health.nsw.gov.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 5

Stephen I Alexander stephen.alexander@health.nsw.gov.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 6

Siah Kim siah.kim@health.nsw.gov.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 7

Chandana Guha chandana.guha@sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 8

Allison Jaure allison.jaure@sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 9

Anita van Zwieten anita.vanzwieten@sydney.edu.au The University of Sydney The Centre for Kidney Research Sydney Australia -

Co-author 10

Co-author 11

Co-author 12

Co-author 13

Co-author 14

Co-author 15

Introduction

Children with CKD have complex healthcare needs related to managing their disease, physical and psychosocial comorbidities, and may face multifaceted barriers to accessing care. We aimed to describe the perspectives and experiences of children with CKD and their caregivers on access to healthcare.

Methods

Electronic databases (MEDLINE, Embase, PsycINFO, CINAHL) were searched to July 2024 for primary qualitative studies describing child or caregiver perspectives on access to care in pediatric CKD. We used thematic synthesis to analyze the data

Results

We included 118 studies involving 1,832 patients with CKD and 2,009 caregivers. We identified seven themes: disempowered by lack of information (scarcity of credible resources, unawareness leading to regret); daunted by an unfamiliar and hostile clinical environment (dismissed and overlooked by clinicians, medical trauma inhibiting engagement with care, overwhelmed by administrative responsibilities, lack of cultural safety); impeded by transport and accommodation difficulties (forced to relocate, struggles with transport and distance); constrained by financial hardships (prohibitive costs of care, struggling to afford transport expenses, making sacrifices and losing income); disruption in continuity of care (stressed in transitioning to adult health care services, challenges in maintaining ongoing treatment during the COVID pandemic); sociocultural obstacles (prioritizing cultural and spiritual options, requiring paternal approval); and building confidence (establishing trust with the clinical team, reassured by a responsive health care infrastructure).

Conclusion

Children with CKD and their caregivers encounter informational, financial, geographical, cultural, and systemic barriers to accessing healthcare. Tailored interventions are needed to address these barriers and improve access to care and health outcomes for children with CKD.

Kewords