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Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale

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Abstract

Background

Caring for a child with kidney failure on dialysis profoundly impacts caregivers’ lives, yet the depth of this burden is not well understood. The Paediatric Renal Caregiver Burden Scale (PR-CBS) is a recently validated instrument used to measure caregiver burden in this population.

Methods

We performed a cross-sectional study of caregiver burden for caregivers of children with kidney failure receiving dialysis at three pediatric centers. Caregivers completed the PR-CBS instrument as part of a larger qualitative study of caregiver experience. We performed descriptive statistics. T-tests were used to examine differences between dialysis modality and within key demographics. Multivariate linear regression was utilized to assess associations between significant factors and total score.

Results

Ten caregivers of children receiving peritoneal dialysis (PD) and 21 receiving hemodialysis (HD) participated. Total burden score and mean score for every domain was higher for caregivers of children on HD compared to PD. PR-CBS score was significantly associated with younger child age and married status in caregivers. In adjusted multivariate analysis, dialysis modality and married marital status were significantly associated with PR-CBS score.

Conclusions

This study found that dialysis caregivers experience significant caregiver burden and demonstrates the utility of the PR-CBS in an American population. We found higher burdens among HD caregivers, younger children, and married caregivers. While these findings must be replicated on a larger scale, they suggest possible areas for targeted interventions to improve the quality of life of children with kidney failure and their families.

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Data availability

All data generated or analyzed during this study are included in this published article.

Code availability

Authors used R via R Studio version 1.1442.

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Acknowledgements

We thank the contributions of Theresa Kump, RN; Cynthia Pan, MD; Helen Currier, RN; Sara Swarz, MD; Michelle Clementi, PhD; Nicola Jacyna, PhD; and Kristi Lynn Cedars, PhD among acknowledgement for their thoughtful contributions to the research process and the caregivers that participated in this project.

Funding

Aaron Wightman, MD MA, was supported in part by the Clinical Research Scholars Program through the Center for Clinical and Translational Research at Seattle Children’s Research Institute.

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Authors and Affiliations

  1. Department of Pediatrics, Division of Nephrology, Oregon Health and Science University, Portland, OR, USA

    Abbie Bauer

  2. Department of Pediatrics, Division of Nephrology, University of Colorado, Aurora, CO, USA

    Eliza Blanchette

  3. Baylor College of Medicine Department of Pediatrics, Houston, TX, USA

    Cortney Taylor Zimmerman

  4. Texas Children’s, Renal Service and Psychology Section, Houston, TX, USA

    Cortney Taylor Zimmerman

  5. Department of Pediatrics, Division of Nephrology, University of Washington, Seattle, WA, USA

    Aaron Wightman

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  1. Abbie Bauer
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  4. Aaron Wightman
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Abbie Bauer, Eliza Blanchette, and Aaron Wightman. The first draft of the manuscript was written by Abbie Bauer and Eliza Blanchette, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Abbie Bauer.

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Bauer, A., Blanchette, E., Taylor Zimmerman, C. et al. Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale. Pediatr Nephrol 36, 3945–3951 (2021). https://doi.org/10.1007/s00467-021-05149-x

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  • DOI: https://doi.org/10.1007/s00467-021-05149-x

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