Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research

Abstract

Background: Informal caregivers (ICs) for medically fragile hematopoietic cell transplantation (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient's IC. Assessment of HCT caregivers' quality of life (QOL) and health status is critical to implementation of timely intervention and support.

Methods: A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of HCT patients. These studies were summarized within the caregiver concepts of QOL, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research.

Results: Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on education, psychosocial support, and self-care.

Conclusions: Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses the needs of ICs of HCT patients. Testing of these interventions and additional areas of research are identified.

Implications for practice: Beginning descriptive evidence provides the basis for interventions for ICs of HCT patients. These interventions support caregiver QOL and role implementation, depending on individual caregivers' resources and needs. Further evaluation and clinical research are needed.

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HCT IC Quality of Life Stressors and Buffers