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The Spectrum of Patient and Caregiver Experiences

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Pediatric Dialysis

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Abstract

Children and adolescents on dialysis have severely impaired quality of life and poor psychosocial outcomes. Dialysis is highly burdensome, painful, and invasive, and children are also required to manage multiple medications and adhere to dietary and lifestyle restrictions. This chapter describes the spectrum of the lived experience of children on dialysis and their caregivers based on evidence from qualitative studies and includes real-life accounts from parents reflecting on their journey of caring for their child on dialysis. Insights into patient and caregiver experiences can inform strategies to improve care and outcomes in children and adolescents requiring dialysis.

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Acknowledgments

With permission, we acknowledge the following caregivers: Diana Austin, Abigail Collett, Melinda Johnson, and Traci Krist for their generous contributions in sharing their stories.

Author information

Authors and Affiliations

  1. The Children’s Hospital at Westmead, Centre for Kidney Research, Sydney, NSW, Australia

    Allison Tong

  2. Parent of Child with Chronic Kidney Disease, Mt. Pleasant, SC, USA

    Ansara H. Piebenga

  3. Department of Pediatrics, Division of Pediatric Nephrology, Children’s Mercy Kansas City, Kansas City, MO, USA

    Bradley A. Warady

Authors
  1. Allison Tong
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  2. Ansara H. Piebenga
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  3. Bradley A. Warady
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Corresponding author

Correspondence to Allison Tong .

Editor information

Editors and Affiliations

  1. Department of Pediatrics, University of Missouri-Kansas City, School of Medicine, Division of Pediatric Nephrology, Children’s Mercy Kansas City, Kansas City, MO, USA

    Bradley A. Warady

  2. Stanford University School of Medicine, Division of Pediatric Nephrology, Department of Pediatrics, Palo Alto, CA, USA

    Steven R. Alexander

  3. Division of Pediatric Nephrology, Center for Pediatrics and Adolescent Medicine, University of Heidelberg, Heidelberg, Germany

    Franz Schaefer

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Tong, A., Piebenga, A.H., Warady, B.A. (2021). The Spectrum of Patient and Caregiver Experiences. In: Warady, B.A., Alexander, S.R., Schaefer, F. (eds) Pediatric Dialysis. Springer, Cham. https://doi.org/10.1007/978-3-030-66861-7_50

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  • DOI: https://doi.org/10.1007/978-3-030-66861-7_50

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-66860-0

  • Online ISBN: 978-3-030-66861-7

  • eBook Packages: MedicineMedicine (R0)

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