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Psychosocial Care and Education of Children with Sickle Cell Disease Undergoing Hematopoietic Stem Cell Transplant and Their Families

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Abstract

This chapter provides an overview of psychosocial and educational considerations in the context of hematopoietic stem cell transplant (HSCT) for pediatric sickle cell disease (SCD). While the psychosocial literature on HSCT in pediatric SCD is quite limited, available research and clinical experience supports the need for a multidisciplinary approach to supporting patients and families as they deal with the multiple stressors that can arise before, during, and after transplant. As medical and psychosocial providers, we have an obligation to thoughtfully educate families about HSCT for SCD, support patients and families in their decision-making, evaluate ongoing coping and adjustment, and intervene to maximize social and emotional outcomes for patients and families. This chapter outlines recommendations for communicating with and educating families about HSCT for SCD, discusses what is known about psychosocial adjustment and outcomes for patients and families, and provides guidance regarding evidence-based assessment of psychosocial risks at the individual and family level.

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Abbreviations

GVHD:

Graft-versus-host disease

HSCT:

Hematopoietic stem cell transplant

QoL:

Quality of life

SCD:

Sickle cell disease

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Authors and Affiliations

  1. Center for Cancer and Blood Disorders, Children’s National Health System, George Washington University School of Medicine and Health Sciences, Washington, DC, USA

    Steven J. Hardy, Jasmine R. Holt & Amanda L. Thompson

Authors
  1. Steven J. Hardy
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  2. Jasmine R. Holt
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  3. Amanda L. Thompson
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Corresponding author

Correspondence to Amanda L. Thompson .

Editor information

Editors and Affiliations

  1. Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USA

    Emily Riehm Meier

  2. Division of Blood and Marrow Transplantation, Children’s National Medical Center, Washington, DC, USA

    Allistair Abraham

  3. Department of Pathology and Laboratory Medicine, Emory University School of Medicine, Atlanta, Georgia, USA

    Ross M. Fasano

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Hardy, S.J., R. Holt, J., Thompson, A.L. (2018). Psychosocial Care and Education of Children with Sickle Cell Disease Undergoing Hematopoietic Stem Cell Transplant and Their Families. In: Meier, E., Abraham, A., Fasano, R. (eds) Sickle Cell Disease and Hematopoietic Stem Cell Transplantation . Springer, Cham. https://doi.org/10.1007/978-3-319-62328-3_10

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  • DOI: https://doi.org/10.1007/978-3-319-62328-3_10

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-62327-6

  • Online ISBN: 978-3-319-62328-3

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