Experiences and Problems Encountered by Families of Children with Sickle Cell Anemia

Abstract

Introduction: Sickle Cell Anemia is a disease that has a high level of morbidity and early mortality for patients that are not followed and controlled properly.  Study was conducted the aim of determining experiences and problems of families whose children with sickle cell anemia. Methods: Descriptive study was conducted the aim of determining experiences and problems of families (n= 206) whose children with sickle cell anemia. Before conducting this study, a written permission from the related institution and research ethics committee approval from Gaziantep University were obtained.  Questionnaire is made up of two sections (10 questions), socio-demographic of families and data about their problems (15 questions and 11 statements). Data were evaluated SPSS (21.0), number and percentage calculations. Results: It was determined that 96.1% of participants knew nothing about disease before their children were diagnosed, 92.7% of them are aware the disease was genetically inherited, all participants were a disease carrier themselves, and 93.7% of them had no blood tests before marriage. 97.1% of participants have no support from their spouses, It was determined that 98.5% of children suffer from pain, 60.7% suffer from weakness 51.5% of the participants apply to hospitals to decrease the problems and 48.5% use medications at home. Conclusion: A great number of families have problems regarding fear of losing their children, lack of social aid and support. Majority of children suffer from pain, weakness, exhaustion, they stay at hospital between at least 1 and 5 times a year, they need blood transfusion.

Keywords: Parents, Child, Sickle cell anemia