The psychosocial Burden on Parents /Guardians of Children living with Sickle cell disease at the University of Ilorin Teaching Hospital, Nigeria


Sickle Cell Disease (SCD) is an inherited hematological disorder characterized by episodic pain and chronic organ damage caused by abnormal sickle-shaped erythrocyte which has physical and psychosocial effects on parents of the child suffering from SCD. A phenomenological study design was used to assess the psychosocial burden of sickle cell disease child’s parents attending sickle cell clinic in University of Ilorin teaching hospital. A total population of 20 parents of the SCD children was purposively sampled for this study. The sickle cell clinic days was targeted for collection of data from parents till the data saturation was reached. A researcher designed In-Depth Interview Questionnaire (IDIQs) was used as interview guides for data collection. The content and face validity and the reliability of the instrument was ascertained based on the study objectives and a pilot study conducted on 10 parents of sickle cell children attending a similar medical center in Ilorin. The ethical clearance for this study was obtained from the ethical review committee of University of Ilorin Teaching Hospital and letter of ethical approval was presented to sickle cell clinic and pediatric wards of the Hospital. Informed consent was obtained from Children’s parents. The results showed that majority of caregivers had adequate knowledge about the SCD and were exposed to psychosocial and financial burden due to the nature of the child demanding condition. This study concludes that the burden of SCD does not only affect the child but also had physical, psycho-social and economic challenges on the parents of the children living with SCD. Based on this conclusion, it was therefore recommended that both government and management of health institutions and communities should subsidize the cost of SCD treatment and strengthen the family support system for families of child living with SCD.



Parents/Guardian, Psychosocial burden, sickle cell disease patient, Sickle cell disease