Abstract Introduction Although sickle cell disease (SCD) is the most common single gene disorder worldwide, caregivers of children do not have adequate knowledge about the illness and its management. ...The purpose of this study was to assess the efficacy of education along with tailored written materials in changing the behaviors of caregivers to help them provide better care for children with SCD. Methods A preintervention and postintervention quasi-experimental design was used. A convenience sample of 43 caregivers of 57 children were asked to complete a questionnaire related to their knowledge of SCD before and after educational sessions. The educational sessions (the intervention) were provided to caregivers at the Children's Cancer Center in Lebanon by one registered nurse, one certified pediatric nurse practitioner, and one pediatric hematologist. Emergency department (ED) visits and hospitalizations were compared 2 months before and 2 months after the intervention. Results A statistically significant increase was found in the knowledge of caregivers about the cause, symptoms, and management of the disease. A statistically significant decrease occurred in the number of hospitalizations before and after the intervention but not in the number of visits to the ED. Multiple regression analysis found that none of the background variables were related to knowledge, ED visits, or hospitalizations. Clinical implications Education and written materials written in a simple language that is understood by 5th-graders were beneficial in improving the knowledge of caregivers and in decreasing the number of hospitalizations of children with SCD.
Abstract Objectives Despite the psychosocial and physical consequences associated with sickle cell disease (SCD), the daily lived experience of adolescents diagnosed with this disease is a phenomenon ...rarely described. The objective of this study was to explore the daily lived experience of adolescents with SCD living in Lebanon. Method Twelve adolescents with SCD between the ages of 12 and 17 years were interviewed with use of a semi-structured interview during a routine follow-up visit after they were assessed as being pain free. Interviews were transcribed verbatim, and thematic analysis was conducted. Results Adolescents with SCD experience a layered burden consisting of physical, emotional, and sympathetic pain that affects much of their daily personal and social lives. Nevertheless, they seem to claim normalcy and to downplay their pain and suffering in order to limit their caregivers' distress. Conclusion These findings can be used to assist health care providers in designing culturally sensitive interventions specifically designed for adolescents with SCD and their families to enable them to better cope with their illness.
