Abstract
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers' preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers. This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data. Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health. A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.
Highlights
Allogeneic hematopoietic stem cell transplantation means that the patients are treated in the hospital for several weeks due to aggressive immunosuppressive chemotherapy and immune system reconstitution, after which they are monitored in outpatient care for many months due to the risk of severe side effects (Gyurkocza et al, 2010)
The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/ depression, competence, self-efficacy, and general health among family caregivers
The result of the present study shows that those family caregivers who were more prepared for caregiving had significantly less symptoms of depression, higher competence, and
Summary
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) means that the patients are treated in the hospital for several weeks due to aggressive immunosuppressive chemotherapy and immune system reconstitution, after which they are monitored in outpatient care for many months due to the risk of severe side effects (Gyurkocza et al, 2010). Associations between preparedness and other concepts suggested as important in Hudson’s theory have been explored in curative and palliative cancer care These studies indicate that higher preparedness is associated with lower distress (Fujinami et al, 2015), better mood (Schumacher et al, 2007), and less anxiety it was not related to less depression or better general health (Henriksson and Arestedt, 2013). It has been confirmed that preparedness for caregiving improves family caregivers’ well-being in cancer and palliative care, there is still limited knowledge in the allo-HSCT context, where family caregivers live in an uncertain situation and have a high level of responsibility for supporting the patient at home. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/ depression, competence, self-efficacy, and general health among family caregivers
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