Burden, uncertainty, and patient symptomatology in family caregivers of hematopoietic stem cell transplant patients: A prospective study

This descriptive study examined the experience of family caregivers of Hematopoietic Stem Cell Transplantation (HSCT) patients to identify stress-related factors that could impact the effectiveness of their caregiver role in the current atmosphere of early discharge of bone marrow transplant recipients from hospital care.;A conceptual framework that integrated caregiver burden, uncertainty, and patient symptom pattern assessment served as a basis for this prospective repeated measures study design, whereby several instruments were administered to the study participants at two sites.;Data were collected from 46 patient-caregiver dyads at four points in the acute transplant treatment process: (a) pre-transplant, (b) immediately after transplant, (3) one week after discharge from the hospital, and (d) one month after discharge. The data collection was conducted by the principal investigator at the Penn State Milton S. Hershey Medical Center in central Pennsylvania in 2004 and by the co-investigator at the Stanford University Hospital in Los Angeles in 2008. The data analysis was conducted using descriptive statistics, ANCOVA, and Pearson Partial Correlation.;The following were the principal findings: caregiver burden and uncertainty were most evident at Interview 1 and 2 (pre-transplant and immediately post-transplant); levels of burden and levels of uncertainty in this population were at or above levels reported for caregivers of patients with chronic diseases; burden was at a level associated with diagnosis of depression in other research; and times of highest stress were associated with the greatest difference in caregiver and patient assessment of symptoms (e.g., pain, fatigue, and other psychological and physical symptoms).;The findings of this study support the need for focused support for caregivers early in the HSCT treatment process, monitoring of caregivers for signs of clinical depression, and recognition that their stress level may alter the accuracy of their assessment of patient symptoms. The lack of increase in burden and uncertainty scores post discharge suggests that the caregivers in this study may not have found care of the patient at home to be more stressful than during hospitalization, and may have considered it to be an acceptable treatment model. Limitations related to the convenience sampling in this study support the need for additional research to confirm these findings and improve generalization to other HSCT caregiver populations. The contribution to the literature of an understanding of the family caregiver experience revealed in this study provides new insights into potential areas for the development of healthcare intervention.