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.
Highlights
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
The results showed that 88.3% of the participants were women, 36.4% were 36-45 years old, 69.9% were primary school graduates, 82% were married and 95.1% had social security
Among the families of children with Sickle Cell Anemia (SCA), 96.1% knew nothing about SCA before their children were diagnosed with this disease, 92.7% were aware that SCA is genetically inherited, 61.2% learnt that their children had SCA when they were 1-5 years old, all the participants were disease carriers themselves, 93.7% had no blood tests before marriage, all of them (100%) had a fear of losing their children with SCA, and 48.1% regretted getting married due to SCA (Table 1)
Summary
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. Seen in Hatay, Cukurova region on the Mediterranean coast of Turkey, sickle cell anemia is considered as a public health problem.[11] While the nationwide frequency is between 0.3% and 0.6% in Turkey, it is between 3% and 44% especially in some parts of Mediterranean region.[9,10,11,12] in southern provinces like Adana, Mersin and Hatay, the number of SCA patients and carriers is high.[11,13] According to the latest data from the Ministry of Health and the National Hemoglobinopathy Council, there are currently around
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