Machado-Joseph Disease in the context of the person/family that experiences it: daily changes and future expectations

Objective: To assess the main daily changes and future expectations experienced by the person/family with Machado-Joseph disease. Methods: Exploratory research, a descriptive study of qualitative approach, carried out with a person with the Machado-Joseph disease and with five relatives, in a city of Rio Grande do Sul. The data was collected during a home visit conducted in April 2016 through semi-structured interviews and participant observation was subjected to content analysis. Results: Five categories emerged: (lack of) knowledge of the disease before diagnosis; knowledge of disease after the diagnosis; difficulties of diagnosis; changes experienced after diagnosis; expectations for the future with Machado-Joseph disease. Conclusion: It is necessary more investment by health professionals, especially nurses, in conducting studies aimed to help people / families living with Machado-Joseph disease.