Informal Caregivers of Hematopoietic Cell Transplant Patients

A Review and Recommendations for Interventions and Research

Robin Gemmill, MSN, RN, CNS, CWOCN; Liz Cooke, MN, RN, AOCN, ANP; Anna Cathy Williams, BS, RN; Marcia Grant, DNSc, RN, FAAN


Cancer Nurs. 2011;34(6):E13-E21. 

In This Article

Abstract and Introduction


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.


Within the United States, approximately 65.7 million informal caregivers (ICs) provide unpaid care for a care recipient.[1] In 2007, ICs, a spouse, family member, friend, or neighbor of a care recipient, provided approximately $375 billion of unpaid care to adults 18 years or older in need of either basic physical care or instrumental care such as transportation to the physician's office for ongoing medical care.[2] Approximately 7% of caregivers provide care to care recipients with a cancer diagnosis. The American Cancer Society (ACS) estimates the ICs will provide countless hours of care to the more than 1.4 million newly diagnosed patients with cancer.[3] With 5-year survival rates at 66%, up from 50% in 1975 to 1977, caregiving needs are increasing.


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