(Lack of) knowledge of mothers about sickle cell trait and disease: a qualitative study

Abstract

Objective: to analyze the understanding of mothers about sickle cell disease and/or trait of the family from a diagnosed child. Methods: this is a qualitative study, using a semi-structured interview with 23 mothers, at a sickle cell disease outpatient clinic of a public institution, from October to December 2017. Analysis was thematic. Results: all participants had sickle cell trait as well as the parents of their children. Twenty children were diagnosed with sickle cell disease by Heel Prick Test, and three, after hospitalization due to the disease. Most did not know how to report the presence of the trait or disease in relatives other than nuclear. Final considerations: diagnosis cannot be restricted to the result of neonatal screening, requiring that preventive information on sickle cell crises be reinforced. It is recommended to search for other affected relatives to learn about their genetic condition, reflecting on their reproductive decisions.

Hallazgo casual de rasgo falciforme S en adulto de edad media: Informe de caso y revisión de literatura

“…La gran mayoría de los casos (ACF), se presenta sus crisis hemolíticas entre los 6 meses de vida, cuando está disminuyendo el porcentaje de hemoglobina fetal hasta los 18 años de edad y suelen manifestar un cuadro clínico con dificultades vasooclusivas torácicas y crisis vasooclusiva abdominal principalmente (Pupo et al, 2015), lo cual difiere de lo presentado en el reporte de caso. Se estima conveniente investigar sobre la presencia de (ACF), dentro de los antecedentes familiares (Rocha et al, 2022), actitud que se tomó durante el interrogatorio y que el paciente negó la presencia de esta enfermedad en su entorno familiar. Al paciente de rutina se le ordenó hemograma y como hallazgo incidental presentaba anemia severa microcítica, hipocrómica con abundante poiquilocitosis, asociado a un síndrome anémico de causas idiopáticas.…”

A experiência de adoecimento falciforme pelas lentes qualitativas

“…O autocuidado [34][35][36][37][38][39] se debruçou sobre as medidas centradas nas pessoas que convivem diretamente com o adoecimento e suas formas de enfrentamento e controle da sintomatologia. O cuidado materno [40][41][42] emerge sob a égide dessa figura como responsável por proteger as pessoas acometidas pelo adoecimento, seja na 71 BVS continua tentativa de mensurar os conhecimentos referentes a DF, seja na atenção ou seja na dedicação materna frente às graves complicações da doença. Outro eixo apontado sobre o cuidado, se refere ao cuidado familiar [43][44][45][46][47][48][49] e a importância da família que, desde o momento do diagnóstico, ainda com sentimentos de temor pela gravidade do adoecimento, se torna um espaço protetor garantindo a qualidade de vida dos conviventes com a DF.…”

Integrative review evaluation of newborn screening for the diagnosis of sickle cell anemia

“…In a study developed by Rocha et al, (2021), carried out in the outpatient clinic of a public hospital, from October to December 2017, all participants had sickle cell trait. Allied to 20 children diagnosed with sickle cell disease by the "heel prick test" and 3 diagnoses, after hospitalization due to the disease.…”