Effect of acute episode of sickle cell disease symptoms on the Personal and Family Life of Saudi children suffering from sickle cell disease, Al-Ahsa Region, 2011G.
Sickle Cell Disease (SCD) is an autosomal inherited structural disorder of hemoglobin (Hb). It is a major problem affecting people of both genders in the Kingdom of Saudi Arabia and is considered as one of the most common inherited childhood diseases, responsible for a significant effect on life. This study was conducted to describe the socio-demographic profile, symptoms, personal and family life of Saudi children suffering from Sickle Cell Disease in Al-Ahsa region, Saudi Arabia, 2011; and to evaluate the effect of acute episodes of SCD symptoms on personal and family life of these children; and to provide evidence based recommendations for improving the life of these children and their families.
Methodology
A cross-sectional descriptive study was conducted in a stratified random sample of SCD children 1-12 years of age who follow-up at hematologic outpatient clinics at four major hospitals in Al-Ahsa region. Data was collected by direct interview of patients' mothers and review of patient's hospital records, using a structured instrument.
Results
Out of the total 305 SCD children, 77.6% had Hb <10 gm/dl; 36.4% had ≥11 episodes of pain and 31.1% had ≥4 episodes of fever in the last 12 months; and 32.5% were admitted to the hospital for their last episode. Regarding their personal life 33.4% did not participate in sports or other physical activities, 27.6% felt sad due to frequent hospitalization, 70.5% did not sleep well during episode of illness, 88.1% avoid friendship, 76.3% do not go to school during episode even if not hospitalized. 81.7% of their mothers had limitations on their social life and 92.9% of employed mothers reported frequent absence from their work. More frequent episodes of acute pain and/or fever were found statistically significantly associated with lack of participation in activities, feeling sad due to frequent hospitalization, disturbed sleep, need of special care, school absenteeism and performance.
Conclusion
Children suffering from SCD had frequent episodes of pain and fever which in addition to causing physical suffering adversely affected the child's daily activities, social interaction, school attendance and performance; while also affecting the life of the mother and family.