Sickle cell disease in Sudanese children & psychosocial problems faced by children and parents – a two-scale study

ABSTRACT Sickle cell disease (SCD) is an inherited red blood cell (RBC) disorder transmitted to the child through the parental genes. SCD is a serious public health problem in Sudan, ranging from 18.2% to 30.4%, with the sickle cell anemia gene known to be prevalent in the Khartoum area. This study aimed to explore the psychosocial impact of SCD on affected children and parents and to identify the relationship between psychosocial problems experienced by children and parents with the use of two scales. To address the research aim, the Strengths and Difficulties Questionnaire (SDQ) was administered among n = 170 SCD children aged 6–12 years. In addition, the Depression, Anxiety, Stress Scale-21 (DASS-21) was used to measure levels of depression, anxiety, and stress in parents of children with SCD. Most of the children experienced substantially high emotional symptoms (n = 113), with conduct problems (n = 113), hyperactivity (n = 100), and peer problems (n = 86) being close to average. Most of the parents had the normal level of depression (n = 78), anxiety (n = 92), and stress (n = 85), with severe and extremely severe cases being the least recorded. Further analysis of the association between the SDQ scale and DASS-21 showed a significant association between parental stress and children’s conduct problems (p = 0.009), hyperactivity (p = 0.03), and the pro-social behavior of the child (p = 0.03). No association was found between parental anxiety, depression, and emotional symptoms, conduct problems, hyperactivity, and peer problems. Future research is recommended to explore the incidence of SCD in children at birth and parental actions after diagnosis.