Quality of Life of Adolescents with Sickle Cell Disease Attending the Ghana Institute of Clinical Genetics, Korle Bu Teaching Hospital.
Date
2019-07
Authors
Journal Title
Journal ISSN
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Publisher
University of Ghana
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.
Description
MPH.
Keywords
Sickle Cell Disease, Ghana Institute of Clinical Genetics, Korle Bu Teaching Hospital