Knowledge and experiences of parents with children affected by sickle cell disease followed At chuk: a qualitative study

Abstract

Background: Parental knowledge about SCD has a direct effect on reducing mortality and complications related to Sickle cell disease. Families of children affected by SCD face several hardships caused by raising a child afflicted with this disease. However, parental knowledge about SCD and challenges faced by families of children with SCD have not been assessed in Rwanda. Objectives: The aim of this study is to explore the knowledge on sickle cell disease among parents of children affected by SCD and to identify their experiences while caring for affected children. Methods: A qualitative method using thematic analysis was used. Data collection was done using semi-structured interviews with thirteen parents from one referral hospital with Pediatric hematology clinic in Rwanda. Results: Thirteen caregivers including eleven mothers and two fathers participated in the study. Among them, 7 parents were Rwandan and 6 were Burundian parents living in refugee camp in Rwanda. Two broad themes were identified: knowledge and understanding of SCD, and experiences and hardships. The majority of parents had some knowledge of SCD but most of them had no knowledge of inheritance pattern of SCD. Prior to the diagnosis being made, all parents had never heard of SCD and they had misconceptions about the condition of their children. Parents face several challenges including persistent psychosocial distress and practical hardships caused by SCD. This study also revealed coping strategies used by parents. Conclusion: This study showed that parents had some knowledge of SCD with gaps of inheritance pattern. Families of children affected by SCD face several burdens including nutrition for the affected child, poverty and persistent emotional distress. Raising awareness of SCD among the public, availing premarital screening program for high risk people and providing social support for affected families would help to mitigate the impact of this disease.