Sickle cell anemia (SCA) is a hereditary disorder of red blood cells (RBCs) that is passed on to a child through the parent's genes and is characterized by mutations affecting the β-globin chain of hemoglobin. It is well established that sickle cell disease (SCD) causes lifelong acute and chronic complications, including pain and swelling of the hands and feet, heart failure, and chronic leg ulcers. Children with SCD may also have strokes, which can negatively affect cognitive function, school performance and predict long-term cognitive limitations in adulthood.

SCD is recognized as a significant cause of childhood mortality associated with non-communicable diseases, especially in sub-Saharan Africa. In 1950, the first case of the HbS gene was reported in Sudan. SCD is currently a major public health problem, with prevalence rates in Sudan ranging from 18.2% to 30.4%, and the sickle cell gene is known to be prevalent in the Khartoum region. While the physiological consequences of this health condition are well known among adults, less is known about the psychosocial consequences of SCD, especially in the pediatric age group and their parents. Therefore, this explored the psychosocial impact of SCD on affected children and parents and identify the relationship between psychosocial problems experienced by children and parents with two scales.

A descriptive cross-sectional study was conducted at Gaafar Ibnauf (Khartoum), the largest pediatric hospital in Sudan. The study sample included children aged 6–12 years diagnosed with SCD. To address the research objective, two scales were used, including the Strengths and Difficulties Questionnaire (SDQ) administered among SCD children and the Depression, Anxiety, Stress Scale-21 (DASS-21) administered among the parents of SCD children.

Demographic data of the current study showed that the most affected age group were children between the ages of six and eight, with most SCD children suffering from the disease for more than five years. The analysis of the SDQ showed that most of the children experienced ‘substantially high’ emotional symptoms, with conduct problems, hyperactivity, peer problems being ‘close to average.’ On the other hand, the pro-social behavior of the most participants was also ‘close to average’, which is a positive indicator. Descriptive statistics of DASS-21 for parents of SCD children showed that most of the parents had the normal level of depression, anxiety, and stress, with severe and extremely severe cases being the least recorded.

Descriptive statistics were followed by an analysis of certain demographic data with included scales, as well as an association between some SDQ and DASS-21 variables. It was found that children’s emotional symptoms were not significantly associated with parental awareness of the child’s health status. In terms of socio-demographic data, it was found that financial difficulties resulting from child disease was significantly associated with mild to moderate levels of parental depression. Furthermore, parents with primary and secondary level of education were more likely to experience anxiety. The most affected variable from DASS-21 scale was found to be parental stress, which was significantly associated with children’s conduct problems, hyperactivity and prosocial behavior.

The treatment and care of SCD and its complications require a strong management that includes supportive care, symptomatic treatment and preventive measures, with the ultimate goal of alleviating symptoms and maintaining a good quality of life for the affected population. In this, the role and contribution of health workers cannot be underestimated and should be encouraged. They are expected to provide parents with sufficient knowledge and information through seminars or workshops. This approach can become a mainstream approach to improving the quality of life of children and families and will enable parents to communicate, leading to better outcomes through learning from others and sharing the “pain.”