Percepções das pessoas com a paralisia supranuclear progressiva e seus familiares/cuidadores sobre o cuidado em saúde

Abstract

Objective: to identify the perceptions of people with Progressive Supranuclear Palsy and their family members/caregivers about health care. Method: this is a descriptive cross-sectional study, with a mixed data approach. The family members of the person with Progressive Supranuclear Palsy, a caregiver and the person with Progressive Supranuclear Palsy participated, totaling 30 participants. The data were obtained through an opinion survey produced in the periods November 2022 and September to October 2023 through two stages: 1) construction of the data collection instrument; and 2) data collection through Web Survey. The data were analyzed using simple descriptive statistics and the textual content, with the help of similarity analysis. Results: Of the 30 participants, 28 (93.4%) are family members, the average ages at the first signs/symptoms and diagnosis of the disease were, respectively, 63.0 and 68.1 years, with a difference of 4.2 years. Most family members categorize the level of knowledge of all professionals under analysis as poor or poor and from this representation they understand that care for people with Progressive Supranuclear Palsy demands knowledge for optimized diagnosis and care and a person-centered clinical approach. Conclusion: the aim is that this work can improve the dissemination of information and communication between people with Progressive Supranuclear Palsy, their families and health professionals about the care received in the health service.