Pediatric Hematopoietic Stem Cell Transplantation: Psychosocial Assessment and Care

Abstract

This chapter discusses psychosocial assessment and care in pediatric hematopoietic stem cell transplantation (HSCT). Despite the significant inherent challenges of a lengthy HSCT hospitalization and recovery with a major disruption of normalcy and social isolation, most children, adolescents, and young adults and their families demonstrate resiliency and seem to recover over time from the distress they experience prior to and during the acute phase of transplant. However, a subset of patients and parents continue to struggle years after transplant. Therefore, it is important to understand the contributing risk and protective factors for HSCT outcomes in patients and families. Pre-HSCT functioning of the patient and family is a strong predictor of post-HSCT functioning based upon existing research, which highlights the importance of conducting a comprehensive psychological assessment prior lo HSCT but also throughout the different phases of HSCT given our understanding of the trajectory of distress and health-related quality of life (HRQL). Despite the limited assessment tools developed for use in pediatric HSCT, consideration should be made for the inclusion of quantitative measures of psychosocial functioning and HRQL that have been validated with children, adolescents, and young adults in cancer and other chronic illness populations. Similarly, most clinical interventions that have been implemented in the pediatric HSCT setting are based upon "what works" or "what doesn't work" in clinical practice lo support the patient and family. Regardless, given the intensity and complexities of HSCT care, supportive care should be multidisciplinary, with care coordination and communication among providers, and family-centered and consistently delivered from inpatient to outpatient settings across the HSCT care continuum. Special attention also should be made for siblings, both donors and non-donors, and family functioning as a primary focus of research. (PsycINFO Database Record (c) 2016 APA, all rights reserved)