Quality of life among patients with Sickle Cell Disease and their parents in Democratic Republic of Congo, qualitative study

Abstract

Abstract Background Sickle cells disease (SCD) is one of the most prevalent hemoglobinopathies. In Democratic Republic of Congo (DRC) Sickle cell disease is a serious public health issue aggravated by a limited access to health and social support. health and social support. SCD has an effect on individual overall well-being and quality of life. It has a negative impact on a patient's social life, schoolwork, physical and mental health, and career. In some cases, those who are impacted may have mental health conditions including grief, fear about dying, and denial of their illness. Method This qualitative study set out to assess the quality of life of children with SCD and their parents attending clinic ‘’Petite Clinique amis des enfants’’. For this study, we used in-depth interview. Results 12 in-depth interviews were conducted including 7 parents of children with SCD and 5 teenagers’ patients. Five major interview themes emerged: (1) discovery circumstances, (2) Experience of sickle cell patients and/or their parents, (3) Repercussions of the disease in the lives of sickle cell patients, (4) Perceptions in relation to the disease, (5) cares issues and needs. Conclusion The findings point out the significance of creating culturally and locally relevant interventions to enhance access to healthcare, lower social and cultural barriers, foster better understanding of the disease, and integrate a model of routine follow-up for sickle cell patients, either in other secondary structures, which implies its integration within the DRC's health system.