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.

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