Quality of Life of Adolescents With Sickle Cell Disease Attending the Ghana Institute of Clinical Genetics, Korle-Bu Teaching Hospital

ABSTRACT

Background: Sickle Cell Disease (SCD) describes several genetic conditions with the presence of an abnormal haemoglobin S (HbS) in the red blood cells. The commonest types of Sickle Cell Disease are sickle cell anaemia (SS), sickle cell haemoglobin C disease (SC), sickle beta-plus thalassemia, and sickle beta-zero thalassemia. The abnormal haemoglobin causes red blood cells to assume a sickle shape. Large numbers of sickled red blood cells collect, hindering blood flow, leading to vaso-occlusive pain concentrations at the joints. Patients also suffer from persistent haemolytic anaemia, lung and heart-related complications, growth and puberty complications, as well as dysfunctions in organs such as the liver, and kidney. The adolescence period is a stage of transition from childhood to adulthood, marked by a sense of independence, and identity. Quality of life (QOL), a social construct measuring the overall wellbeing of a person, has been shown to be lower in adolescents with SCD, due to the effects of the disease. General Aim: The study objective was to determine quality of life of adolescents attending Sickle Cell clinic at the Ghana Institute of Clinical Genetics, Korle Bu. Methods: This research work employed the qualitative approach, using phenomenological technique. In-depth interviews were conducted with 15 adolescents with Sickle Cell Disease attending Sickle Cell Clinic at the Institute, which were audio recorded and transcribed. Thematic analysis was done by coding and recoding in order to generate themes for data analysis. Results: The outcome of the study is that quality of life of adolescents with Sickle Cell Disease, based on their subjective meanings, and interpretations they assign to their health at this stage of life is good. The findings of this study include the general, emotional, physical, and social and cultural health and well-being of the adolescent patients, as perceived by them. Social factors such as family support and clinical visits were found to have a significant impact on the quality of life of adolescents with SCD. Culture was found to have no effect. There were no differences between the quality of life of male and female adolescents with SCD. Conclusion: Generally, quality of life of the adolescents was found to be good, as perceived by them, however, emotional health was found to be lacking in some younger female adolescents. The social factors that are positively associated with QOL are to be encouraged. It is recommended as well that the emotional health of younger adolescents, especially female is considered, and given more attention in care of SCD.