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Experiences and Problems Encountered by Families of Children with Sickle Cell Anemia
Gülendam Karadağ1, Zeynep Güngörmüş2, Zeynep Olçar3
1Department of Public Health Nursing, Faculty of Nursing, Dokuz Eylül University, İzmir, Turkey.
Insights
Families of children with sickle cell anemia face significant challenges, including lack of knowledge, limited support, and children experiencing severe pain and frequent hospitalizations. This highlights a critical need for better family support and disease education.
Area of Science:
- Pediatric Hematology
- Family Medicine
- Public Health
Background:
- Sickle Cell Anemia (SCA) is a significant cause of morbidity and mortality.
- Proper management and patient follow-up are crucial for affected individuals.
- Understanding family experiences is vital for comprehensive care.
Purpose of the Study:
- To investigate the experiences and challenges faced by families of children diagnosed with Sickle Cell Anemia.
- To identify specific problems encountered by these families in managing the disease.
Main Methods:
- A descriptive study design was employed.
- Data collected from 206 families using a questionnaire with socio-demographic and problem-related sections.
- Statistical analysis using SPSS (version 21.0) with frequency and percentage calculations.
Main Results:
- Most families (96.1%) lacked prior knowledge of SCA before their child's diagnosis.
- A high percentage (92.7%) recognized the genetic nature of SCA, with all participants being carriers.
- Children frequently experience pain (98.5%) and weakness (60.7%), requiring frequent hospitalizations (1-5 times/year) and blood transfusions.
Conclusions:
- Families encounter substantial difficulties, including fear of child loss and inadequate social support.
- Children with SCA suffer from significant symptoms like pain and weakness, necessitating ongoing medical intervention.
- There is a clear need for enhanced educational resources and social support systems for families managing SCA.
Abstract:
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. 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. 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. 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.
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