Abstract
The diagnosis of a brain tumor is particularly stressful both for patients and their caregivers because the prognosis is poor and life expectancy is short. This is especially true when caregivers deal with high-grade gliomas (HGG). Despite treatment advances, median survival remains low, ranging from 1 to 5 years. Focal neurological deficits, epilepsy, cognitive dysfunction and symptoms of increased intracranial pressure are prominent symptoms in HHG and they may arise in any stage of the disease. Moreover, fatigue, mood disturbance, and anxiety are often reported. All these factors negatively affect patients' and caregivers' overall quality of life. Few studies have investigated, to date, the quality of life of the caregivers who take care of HGG patients. Thus, we sought to evaluate their quality of life and their specific reactions to caregiving. We recruited 91 caregivers of HGG patients. We used the following questionnaires in order to detect quality of life, anxiety, depression and specific reactions to patients' disease: 36-Item Short-Form Health Survey (SF-36), Hospital Anxiety and Depression Scale (HADS), Caregiver Reaction Assessment Scale (CRA). These psychological questionnaires were administered in the form of an interview by a psychologist. The present study shows that caregivers experience higher levels of anxiety (t (90) = 11.3, p < .01) and depression (t (90) = 9.26, p < .01) than the normative sample. Also caregivers' mental health (“Vitality”, “Social Functioning”, “Role-Emotional”, “Mental Health”) appeared to be compromised as compared to the normative sample. As specific reactions to caregiving our caregivers presented “loss of physical strength” and “financial problems”. Caregiving experience did not negatively influence “caregivers' self-esteem”, “lack of family support” and “disrupted schedule”. Although a highly positive perception of the caregivers' self-esteem is reported, the impact of HGG diagnosis seems to be indeed profound. Such diagnosis affected caregivers' psychological well-being and their ability and energy to provide care and financial strain. Therefore, this study underlines the necessity to take into account caregivers' emotional unease in order to support them during the various stages of patients' disease trajectory.
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