Abstract:
Sickle Cell Disease (SCD) is an inherited genetic disorder characterized by chronic haemolytic anaemia, painful ischaemic episode of vaso-occlussion and progressive organ failure. SCD is endemic worldwide affecting millions of particularly children and has been declared by the World Health Organization and the United Nations as a disease of public health importance. Despite this, very little attention is given to the disease in Ghana. This study explored the quality of life of adolescents living with SCD in the Accra Metropolis. This qualitative research adopted the exploratory descriptive design. Purposive sampling was used to sample 11 adolescents receiving care at the 37 Military Hospital. All participants were interviewed face-to-face after ethical approval was sought. Thematic analysis was used to analyze data, which went on concurrently with verbatim transcription of audio recorded interviews. Four main themes and twenty-nine subthemes were derived. The four main themes include physical, psychological, social and spiritual well-being. The findings revealed that majority of the adolescents experienced fatigue, sleep disturbances, pain, and limitation in roles. All reported absenting themselves from school at some point. Again, majority reported receiving adequate family, social, financial, and emotional support. Few however, reported being stigmatized, feeling depressed, and feeling anxious. Few associated SCD with curse, and witchcraft. All the adolescents said their sources of inner strengths were their parents and God and that they had great hope they would get well. It is expected that the findings would improve care. These findings have implications for nursing practice, education, administration and research.
