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

Disclosures

Cancer Nurs. 2011;34(6):E13-E21. 

In This Article

Background: Caregiving in Hematopoietic Cell Transplant Patients

A cancer population that requires an IC committed over a long period is the hematopoietic cell transplantation (HCT) patient. Caregivers for medically fragile HCT patients are a vital unrecognized resource and essential to the patient throughout the illness continuum. Allogeneic transplantation from histocompatible related and unrelated donors is a treatment of choice for a variety of hematologic, oncologic, immunologic, and hereditary diseases. The number of patients undergoing allogeneic HCTs has steadily increased since the first successful human marrow allografts, and today, there aremore survivors of allogeneic HCT than at any time over the last 40 years, with approximately 4300 transplants completed in 2008.[4] The illness trajectory for patients undergoing HCT is long and can be highly variable and uncertain with varying demands of care based on the stage of disease at diagnosis, previous treatment intensity, and treatment-related complications. Many of these survivors are living longer but have continuing healthcare needs. Care needs are often complex and encompass a broad range of potential deficits across the physical, psychological, social, and spiritual domains of care. The potential strain on HCT ICs is tremendous as they attempt to support the transplant recipient throughout the illness trajectory.

During the first 100 days after transplantation, the HCT recipient and caregivers are focused on engraftment, preventing complications, symptom management, juggling multiple medications, and scheduling of clinic appointments.[5–8] Hematopoietic cell transplantation recipients also need to be close to the transplant center. Thus, many temporarily relocate, resulting in social isolation for both the recipient and the caregivers.[5,6] Beyond the first 100 days, patients need to continue to be vigilant about prevention of infection; struggle with lingering fatigue, symptom management, cognitive disruption, depression, existential angst, and family role shifting; and worry about financial hardship.[5] In the long term, HCT recipients may experience ongoing complications related to treatment before transplant, the conditioning regimen prior to the transplant, and complications related to graft-versus-host disease.[5–8] The long transplant recovery period creates a longterm commitment of the caregiver to the care of the patient. Caregivers assume both physical and psychosocial aspects of care in addition to managing the frequent outpatient visits required.[6] Although the goal is always cure, 10% to 25% of patients will relapse after HCT and need to face end-of-life issues.[5] A beginning literature for this caregiver population provides valuable insight into the HCT-caregiver experience and can provide the basis for needed nursing interventions.

The purpose for this article was to (1) summarize the literature on informal caregiving and the HCT population, (2) recommend evidence-based interventions that target ICs of HCT patients, and (3) identify areas of needed research.

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