The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review

Objective: Hematopoietic stem cell transplant (HSCT) is a demanding procedure with associated physical and psychological sequelae that affects patients and their families. Caregivers to HSCT patients not only have to cope with the life-threatening nature of the disease and treatment, but they also have care-giving responsibilities. This study reviews the literature on the psychosocial impact of being a caregiver to a HSCT patient. Methods: A critical review of the literature published before June 2010 was conducted. Databases searched included CINAHL, Medline, PsycInfo, and Academic Search Complete, as well as a comprehensive reference review. Studies that pertained to caregivers of children (under the age of 18) undergoing a HSCT or caregivers to patients with non-hematological malignancies were excluded. Sixteen quantitative research articles and three qualitative research articles were reviewed and analyzed. Results: Caregiver distress is highest pre-transplant and decreases over time, and caregivers display distress levels comparable to or higher than patients' reported distress levels. Predictors of caregiver distress include female gender, elevated subjective burden, and higher patient symptom distress. Caregivers reported uncertainty, fear of the future, juggling patients' needs with their own, and difficulties adapting to role changes; however, they also reported positive aspects to care giving, such as personal growth and developing a more positive relationship with the patient. Conclusions: There are many limitations to the current research and future directions should include both members of the dyad to evaluate the reciprocal relation between caregiver and patient variables, as well as theory-driven research and research with direct clinical applications. Copyright (C) 2011 John Wiley & Sons, Ltd.