Supporting Families Through the Acute Phase of the Pediatric HSCT Experience

Pediatric hematopoietic stem cell transplantation (HSCT) has a reported high mortality rate of up to 40% during the first year, prolonged hospitalizations, and uncertainty related to the prognosis of outcomes. These challenges cause families to suffer significant psychological effects surrounding pediatric HSCT. The purpose of this study was 1) to explore how families are best supported through the acute phase of HSCT when the child is hospitalized, from the perspectives of the parents and the pediatric nurses caring for these children, and 2) to explore the challenges that parents face during their child’s HSCT hospitalization and how parents cope and adapt to this experience. A qualitative descriptive design was used with the guidance of an adapted Resiliency Model of Family Stress, Adjustment, and Adaptation conceptual framework. Parents from six families (n=10) and pediatric oncology nurses (n=15) were recruited to participate in semi-structured interviews about family support, stressors, coping, and adaptation, during the pediatric HSCT experience. The conceptual framework guided the interviews, analytic methods, and summation process. Community resources most commonly included religion, disease specific foundations, and schools, with social support encompassing support groups, and social media. Grandparents were the most common extended family support mentioned, and nurses provided the most support within the healthcare team. Parents were perceived more stressed managing family obligations, seeing the sick child, lacking in information, and experiencing transplant-related complications. Although some parents remained hopeful and positive, others described avoidance behaviors to cope. The family working as a team was the most prominent adaptation strategy, in which parents established new routines and role change to manage their child’s illness. Support groups and support from individuals experiencing the same illness were seen as most beneficial, and family presence during the hospitalization was perceived as crucial for support of the child. Continued positivity helps families adjust to the stressors of pediatric HSCT. However, parents should be assessed for family support structures and increased stressors prior to the HSCT, and those lacking coping and adaptation skills will require more psychosocial interventions during the children’s hospitalization for HSCT.