The perception of parents of children and adolescents with sickle cell disease in relation to treatment

Abstract

Sickle cell disease (SCD) is a genetic disorder of autosomal and recessive origin, being prevalent in people of African origin and with low education, impairs the quality of life of its patients, as it causes limitations in occupational activities in a physical and emotional way, causing reclusion and nonacceptance of treatment, especially among children and adolescents. Goal: To describe the perception of parents/guardians of children and adolescents living with sickle cell disease. Methodology: Descriptive and exploratory qualitative approach research, with children and adolescents aged 6 to 18 years, who undergo treatment at the HEMOAM Foundation from December 2021 to June 2022, with data collection through semi-structured interviews and content analysis. Results: It was possible to identify, through the scientific evidence published in the databases on the subject, that the role of caregiver of the child with sickle cell anemia demands great responsibility, and it bears a great psychosocial weight, but the proximity to support networks, with family members, churches, organizations and also the health team, proved to be positive for coping with the disease, its complications and aggravation. Discussion: It is found in the perception of parents of children and adolescents living with sickle cell disease, their knowledge about their children's health condition, care routines in relation to treatments, as well as their concerns and anxieties arising after diagnosis of sickle cell disease, enabling a better understanding of how health professionals approach this population, resulting in positive repercussions in the scientific environment through educational actions. Conclusion: The mother is the integral caregiver of the child and adolescent in their treatment trajectory, resulting in critical mental exhaustion for performing so many activities with little or no help from outsiders.