The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

Abstract

Objective: Pediatric bone marrow transplants represent a medically stressful, potentially traumatic, experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences. Methods: We report on a case of a 10-month infant patient with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation (BMT). Results: We describe the significant burden that fell upon caregivers during and after a BMT. Significance of results: This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly-stressful transitions of care.

Hematopoietic stem cell transplantation in children with sickle cell anemia: The parents’ experience

“…In conclusion, our work has shown the complexity of parents' experiences throughout the HCST process. It is essential for the professionals caring for those families to be aware of the difficulties they encounter in order to prevent any potential psychological distress, as already stated in literature . In fact, the department where our study took place had on staff two psychologists trained about issues with both SCA and HSCT, and a support program was set up for several families.…”

“…It is essential for the professionals caring for those families to be aware of the difficulties they encounter in order to prevent any potential psychological distress, as already stated in literature. 37,38 In fact, the department where our study took place had on staff two psychologists trained about issues with both SCA and HSCT, and a support program was set up for several families. It would be useful to study the outcomes of that program in order to optimize it and expand its availability.…”

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

“…Primary caregivers of children needing HSCT provide support for the first 100 days posttransplant (Sannes et al, 2018). Parental primary caregivers (Mangurian et al, 2018) and family caregivers (Sannes et al, 2018) of a child hospitalized for HSCT often experience significant distress. More than one fourth of primary caregivers report clinically significant distress during the HSCT process (Sannes et al, 2018;Virtue et al, 2014) and more than half have been shown to have unmet psychosocial needs (Beattie & Lebel, 2011).…”

“…Psychological parameters of caregiver distress have been examined in pediatric HSCT settings, but few studies have examined the effectiveness of support interventions for reducing this distress. Most medical centers do not have protocols in place to support and sustain the well-being for caregivers of a child undergoing HSCT during this stressful period (Mangurian et al, 2018). Two studies offered weekly or monthly intervention programs (Manne et al, 2016;Racine et al, 2018); support was provided by a psychologist and/or social worker.…”

Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders

“…We found key challenges of maintaining relationships with the healthy sibling(s) and partner during misolation, managing self-care, disrupted sleep, coping with feelings of uncertainty, and feeling unprepared for discharge. These problems have been identified before in case reports for the caregiver of children with PIDs (39), and also in the pediatric oncology caregiver population (40,41). Our study was unique in eliciting caregiver organizationallevel suggestions to enhance psychosocial support.…”