Abstract
Moyamoya disease is as a serious chronic disease characterized by an occlusion of the main arteries of the brain, and it is considered an important cause of stroke. The purpose of this study was to investigate the experiences and feelings of mothers facing their child’s diagnosis, progress, and treatment of Moyamoya disease. This is a descriptive study with quantitative and qualitative analyses. Eight mothers of children with Moyamoya disease from three different southeastern states in Brazil participated in the study. Data were collected via Internet questionnaires. The results show that fear and sadness pervaded the mothers’ experiences of the disease diagnosis, which was aggravated by the scarcity of information available. Mothers reported feeling despair, anxiety, guilt, difficulty of acceptance, and fear related to cerebral angiography and brain surgery. Faith and spirituality were referred to as sources of support and maintenance of hope. There is a need for further studies that can bring greater clarity about this disease and the experience of patients and their families.
Keywords:
Moyamoya disease; Emotional states; Mothers; Therapeutics