Caregiver Perspectives on Psychosocial Care in Pediatric Hematopoietic Stem Cell Transplantation (HCT)

Abstract

Objective: Hematopoietic stem cell transplantation (HCT) is an intensive treatment with known psychosocial effects throughout treatment and beyond. This study reports how caregivers of children undergoing HCT describe the psychosocial care that their family received and which elements they found most helpful. Method: Semistructured qualitative interviews were conducted with 12 parents of children who had HCT, purposefully selected based on varying levels of psychosocial risk, 4 from each of 3 study institutions. Constant comparative analysis was used to identify themes as part of an iterative analytic process. Participants also completed a card sort, and count data were calculated to identify psychosocial care preferences. Results: Four themes were identified: (a) Social support is essential across the transplant process; (b) care should be offered to the whole family; (c) access to and communication with an interdisciplinary team is essential; and (d) care should be sensitive to financial burden experienced by the family. Participants strongly endorsed interventions addressing anxiety and traumatic stress in caregivers during and after HCT. Conclusions: The themes reflect parents’ profound psychosocial needs. The interventions they selected reflect diverse approaches and inform the development of clinical pathways for patients undergoing HCT and their families. The findings highlight important clinical practice implications, including the need for universal psychosocial risk screening, the provision of systematic care starting at the universal level, and care pathways that outline treatments for families with higher and more specific areas of risk.

Implications for Impact Statement

Children undergoing hematopoietic stem cell transplantation and their families have significant psychosocial needs throughout the course of treatment and beyond. This article presents the perspectives of caregivers on key elements of psychosocial care and specific intervention approaches.