CONHECIMENTO DOS ESTUDANTES DE ENFERMAGEM SOBRE DOENÇAS RARAS

Abstract

Rare diseases are pathologies with low incidence but constitute a public health problem. The therapeutic itinerary of these people highlights the difficulty of diagnosis and access to treatment. Social ignorance about the subject reflects the negligence of information. In this scenario, nurses raise awareness, educate patients and their families, and coordinate care. That said, this study aimed to assess nursing students' knowledge about caring for people with rare diseases. This observational, descriptive-analytical, cross-sectional study was conducted between July and December 2024 with nursing students in the last two years of undergraduate studies in a capital city in the Midwest region. The first stage of the study involved the construction of a matrix of competencies for nurses on caring for people with rare diseases, using references on rare diseases, as well as recommendations for structuring nursing competencies. The second stage was an observational study in which 181 students enrolled in face-to-face undergraduate nursing courses at four higher education institutions in a capital city in central-western Brazil took part. To assess the students' knowledge and self-perception about caring for people with rare diseases, they used instruments made up of sociodemographic, institutional, and academic variables, developed by the researchers based on the matrix of competencies expected for nurses in this scenario. Experts in the field analyzed the instruments and the competency matrix to improve them. The proportion of correct answers on caring for people with rare diseases was chosen as the dependent variable to explore nursing students' knowledge. Descriptive statistics were used, in which absolute and relative frequencies and measures of central tendency were used to describe the students, as well as simple and multiple linear regression analysis to identify factors associated with knowledge (proportion of correct answers). The Research Ethics Committee approved the research. The competency matrix showed a nurse profile that implements care for people with rare diseases and their families, manages care in the Health Care Network, transmits appropriate information, recognizes the need for continuing education, contributes to scientific research, and conducts training activities with mid-level professionals. Regarding the students' knowledge, the average proportion of correct answers among the items assessed was 56.1%. Nursing students’ understanding of care for people with rare diseases was higher regarding subjects such as the national policy on care for people with rare diseases, nurses' actions, and primary care. However, there was a higher frequency of errors in questions dealing with karyotype, congenital anomalies, heredrogram, genetic counseling practices, and Orphaned. The institutional and academic profile variables, such as shift, type of institution where they attended high school, presence of the subject of genomics, and epidemiological knowledge, caused significant differences in the proportion of correct answers or adjusted the observed associations. The conclusion is that, although there has been progress in recognizing the importance of caring for rare disease patients and their families, there is a need for more in-depth theoretical and practical teaching in undergraduate nursing courses. In this context, the role of nurses is multifaceted. It covers various fronts, such as health promotion, direct patient care, research, continuing education, care management, and coordination of the care network.