Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients

Abstract

Twenty-four family caregivers of bone marrow transplant (BMT) patients were interviewed to describe the burden of care and health outcomes (anxiety, depression, symptom distress and fatigue). A descriptive correlational research design with repeated measures was used. Data were collected in a conference room in the oncology unit of a midwestern university hospital using a battery of questionnaires. Questionnaires were administered pre-BMT (prior to the patient's hospitalization) and 5 and 20 days post-BMT. Objective burden remained at a similar level throughout the study (mean range 31.4 to 32.9), whereas subjective burden was highest pre-BMT (mean range 25.3-21.7). Significant correlations were found between objective burden and all health outcomes (P < 0.01 to P < 0.001) on day 5. Symptom distress was significantly correlated to subjective burden pre-BMT and to both types of burden on days 5 and 20. Results of this study suggest that family caregivers of BMT patients may experience more objective burden than subjective burden, and that burden of care may contribute to negative health outcomes, especially on day 5 post-BMT. Interventions designed to reduce sources of caregiver burden and negative health outcomes should be planned according to critical time periods of the BMT patient's hospitalization.

Effects of Care Burdens of Caregivers of Cancer Patients on their Quality of Life

“…Conducted studies report that the majority of caregivers experience health issues, domestic problems, and their quality of life decreases. Other studies addressed these problems under categories titled "disturbance", "burden" and "quality of life;" they concluded that the issues they experience were parallel to those experienced by the patient (Foxall and Gaston-Johansson, 1996;Nijboer et al, 1998;Weitzner et al, 1999a;Carter and Chang, 2000;Andrews, 2001;Babaoğlu and Öz, 2003;Borneman et al, 2003;Grunfeld et al, 2004;Carter, 2005;Gaugler et al, 2005;Grov et al, 2005;Dumont et al, 2006;Bostancı et al, 2007;Chang et al, 2007;Chen et al, 2007;Mystakidou et al, 2007).…”

Adaptation of family caregivers during the acute phase of adult BMT

“…In this situation, both the recipient and caregiver often experience intense emotional distress. [2][3][4] In fact, findings indicate that the level of distress experienced by caregivers often exceeds that of recipients, and they are less likely to obtain mental health intervention. [5][6] Therefore, identifying those variables that may be associated with a high risk for the development of stress-related problems in the caregiving partner is critical to preventive intervention.…”

Long-term follow-up of informal caregivers after allo-SCT: a systematic review

“…18,20 Most data demonstrate that caregivers' levels of anxiety, depression and distress are highest prior to transplant and slowly fall after transplant, although there are little longitudinal data to follow up this after 1 year. 19,22,23 Anxiety is another common symptom among caregivers, often beginning in the pre-transplant period and extending beyond the initial transplant period. 18,21 Depression also affects caregivers of the HSCT population on a frequent basis.…”

“…18,21 Depression also affects caregivers of the HSCT population on a frequent basis. 21,22 Caregivers also experience physical symptoms and conditions, including fatigue, sleep disturbance, pain, loss of physical strength, loss of appetite and weight loss. 24 One of the most common physical symptoms of caregiver strain is fatigue, 21,22,25 which frequently contributes to poor quality of life even after the acute phase of transplant is complete.…”

“…[17][18][19][20][21][22][23] Of the psychological symptoms, the most commonly experienced symptoms are anxiety, depression and emotional distress. [17][18][19][20][21][22][23] Multiple studies have demonstrated that the incidence of emotional distress experienced by caregivers of HSCT patients is comparable to, if not higher than that seen in the HSCT patient population. 18,20 Most data demonstrate that caregivers' levels of anxiety, depression and distress are highest prior to transplant and slowly fall after transplant, although there are little longitudinal data to follow up this after 1 year.…”