A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions

Abstract

The extant literature documents burden among caregivers of patients undergoing a hematopoietic stem cell transplant (HSCT), but little is known about the burden of caregivers of patients receiving outpatient and homebound HSCTs. This scoping study sought to evaluate what is known about the burden of the increasing number of adult caregivers of patients receiving outpatient HSCTs and to create practice guidelines for how to best support this vulnerable group. Online databases were searched for studies that evaluated caregiver burden in adult caregivers of HSCT patients since 2010 (the publication date of the most recent systematic review on HSCT caregiver burden). Of the 1,271 articles retrieved, 12 met inclusion criteria, though none specifically examined outpatient or homebound caregivers. Overall, studies corroborated existing literature on the experience of significant burden among HSCT caregivers across the HSCT trajectory, and highlighted the emotional costs of outpatient transplants on caregivers and the need to identify caregivers at high risk for burden early in the transplant process. Future studies of outpatient caregivers should include a comprehensive assessment of burden and seek to identify points along the transplant trajectory at which caregivers are at particular risk for negative outcomes and when intervention is most appropriate.

Patient and Caregiver Determinants of Patient Quality of Life and Caregiver Strain in Left Ventricular Assist Device Therapy

“…Although qualitative studies have provided evidence that caregiving is emotionally distressing at all stages of LVAD therapy support, it is not possible to gain insight into how and when caregiver strain changes in response to LVAD implantation from these studies or identify when the caregiver is at highest risk. However, in other contexts involving major clinical intervention (eg, bone marrow transplantation and heart transplantation), strain is highest immediately preintervention, followed by reduction postintervention . In contrast, we observed no overall change in strain between preintervention and postintervention (LVAD).…”

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

“…The majority of the studies exploring the effects of HCT evaluate the early period post-transplant (109–111). The individual studies that included caregivers at or beyond one-year suggest that caregiver distress generally improves over time, although caregivers still report long-term role adjustments and ongoing demands (112).…”

A randomized control trial of stress management for caregivers of stem cell transplant patients: Effect on patient quality of life and caregiver distress

“…Content specific sessions, descried in detail elsewhere, included in order the following: (1) introduction to stress management and the biofeedback device; (2) stress and the mind‐body connection; (3) cognitions and stress; (4) coping strategies; (5) strategies for maintaining energy and stamina; (6) coping with uncertainty; (7) managing changing relationships; and (8) getting the support you need. Two additional open‐ended booster sessions9 and 10 were available if requested by the caregiver. Each session began with a check‐in to address new or emerging problem(s) providing flexibility for interventionists to address unique needs.…”

“…Despite distress experienced by HSCT caregivers, they have not been recipients of stress management interventions until recently . Indirect impacts of caregiver intervention on patients' QoL have been suggested . We previously modified a cognitive behavioral stress management program designed for medically ill patients to address distress of Allo‐HSCT caregivers .…”