Enfrentando a terminalidade no lar: relação entre a saúde mental de pacientes com câncer avançado e familiares cuidadores

Abstract

Background: Caring for a patient with advanced, incurable cancer is a complex and distressing task and can generate in the caregiver a great physical and emotional burden, often associated with depression, anxiety, lack of social support and poor quality of life (QOL). Damage to the mental health of family caregivers may be related to a corresponding deficit in the mental health of patients. However, there are limited studies which assess both patient and caregiver, in order to comprise the relationship between their symptoms, difficulties and facilitators in coping with advanced cancer - essential knowledge in palliative care planning. The aim of this study was to evaluate the mental health and QOL of patients with advanced, incurable cancer and their family caregivers, investigating if there is correlation between these factors in the researched sample. Methods: Exploratory, correlational study, comprising quantitative and qualitative approaches. Twenty-five patient-caregiver dyads were interviewed using WHOQOL Brief, Hospital Anxiety and Depression Scale (HADS) and an interview script with four open questions. Family caregivers also responded to the Zarit Burden Interview (ZARIT) and to a social, demographic and clinical questionnaire for sample characterization purposes. Quantitative data were analyzed using descriptive statistics, Spearman's correlations and Wilcoxon's test, and qualitative data according to the Content Analysis (Bardin, 2011). Results: Overall, patients and caregivers presented similar levels of QOL, anxiety and depression. Signs of anxiety were present in 48% of the caregivers and 52% of the patients and signs of depression in 28% of the caregivers and 36% of the patients. Burden was reported by 44% of the family caregivers. At the intersection between groups, only WHOQOL's Health Satisfaction and Environment domain were significantly related. In the intragroup analysis, the psychological domain of the WHOQOL was associated to all other domains of QOL assessment for both patients and caregivers. Caregiver burden, anxiety and depression were negatively related to their QOL and patient satisfaction with the environment in which they live. Similarly, higher levels of anxiety and depression in patients were associated with lower levels of QOL in this group. There was no association between caregiver burden and QOL, anxiety and depression in the patients. Nevertheless, burden was related to QOL (negatively) and to the Anxiety and Depression (positively) of caregivers. Regarding the main difficulties of facing the cancer, those of psychological origin predominated in the reports, while social support and spirituality were reported as the main facilitators in this arduous crossing. Conclusions: Although the hypothesis of an association between the mental health of patients and caregivers is rejected, the proximity between the scores of all evaluations indicates that both have similar levels of anxiety, depression and QOL, thus becoming important targets of care. Anxiety, Depression, and Burden are highlighted as areas in which patients with advanced, incurable cancer and family caregivers may benefit from interventions to improve their QOL. Palliative care should be integrated into cancer care to address the complex demands of patients with advanced, incurable cancer and their caregivers.