Doença falciforme: autoeficácia, conhecimento sobre a doença, apoio social e complicações clínicas em adolescentes e jovens adultos

Abstract

Sickle cell disease (SCD) is one of the most common genetic and hereditary diseases in the world. It has diverse symptoms and its severity varies between individuals. Studying self- efficacy, social support, knowledge about the disease and its complications can help in coping with the disease and in autonomy of care. The objective of this research was to evaluate self- efficacy, knowledge about the pathology, social support, and clinical complications in individuals with SCD, aged between 15 to 23 years, followed at the Hematology Outpatient Clinic of Palmas-TO, in addition to understanding factors associated with these variables. This was a quantitative, analytical-descriptive, and cross-sectional study, composed of a sample of 69 patients. The following instruments were used for data collection: Sociocultural and health conditions questionnaire; Form for clinical data from medical records; Pain scale; Knowledge questionnaire about sickle cell disease; The Sickle Cell Disease Self-Efficacy Scale; and The Social Support Scale. SPSS software was used for statistical analysis. Frequency central tendency and variability measurements were calculated. Normality was tested by Kolmogorov Smirnov. The association between categorical variables was assessed by the Chi-square or Fisher's exact tests. Spearman correlations were estimated between quantitative variables. A significance level of 5% was considered. Among the 69 patients, the majority were female (60.87%), young adults (63.77%), brown (76.81%), and with HbSS genotype (57.97%). There was a significant association between patient genotypes and the presence of clinical complications, gallstones, cholecystectomy and need for transfusion. Regarding self-efficacy, 50.72% presented high self-efficacy and there was a significant association of this variable with clinical complications and school failure. Regarding social support, 89.86% showed high social support. Furthermore, 91.30% were classified as having adequate knowledge about the disease. Regarding Spearman's correlations, the following were significant: self-efficacy with the affective dimension of knowledge; social support with knowledge and with the symptoms and care dimensions of knowledge; knowledge with the social interaction dimension of social support and with pain crises in the last 24 months and 3 months. Thus, it is concluded that the patients studied have, in the majority, high self-efficacy, high social support, and adequate knowledge about the pathology. Few associations and correlations were significant, however, it is important to pay attention to these relationships, to developing strategies that contribute to better care and quality of life for this population.