Experiences of Living with Sickle Cell Disease among Adults Attending Clinic at Muhimbili National Hospital, Dar-Es-Salaam, Tanzania

Abstract

Background: Sickle Cell Disease (SCD) is a potentially overwhelming condition that is caused by an autosomal recessive inherited hemoglobinopathy. Sickle Cell Disease affects all areas of the patient’s life and results in different events or experiences (occurrences which leaves an impression on someone).Aim: This study aimed at understanding the perceptions of adults living with SCD on triggering, aggravating and alleviating factors for pain, describing the perceptions on pain management, and understanding perspective experiences of social implication on living with SCD. Methods: The method used in this study was phenomenological study that used descriptive qualitative method. Study population was of adults living with Sickle Cell Disease in Dar-es -Salaam Region, aged 18 years and above. Sample size was of 15 adults living with SCD. Sampling procedure used to select study participants was Purposive/judgmental. Adults aged 18 years and above screened at Muhimbili National Hospital SCD Cohort and confirmed to have SCD, who consented to be enrolled in the study were included. Adults with SCD who were not enrolled in the cohort were excluded. Data were collected at Muhimbili National Hospital from March 2017 to May 2017. Fifteen in-depth interviews with adults living with SCD aged eighteen years and above were conducted to collect primary data. Data were analyzed by using content analysis approach. Findings: Adults living with SCD mentioned different factors that perceived to trigger, aggravate and alleviate pain. Most participants reported to manage pain by home remedy together with self-medication, however all participants seek hospital care whenever the pain continues. Sickle Cell Disease was also found to have led to poor school attendance and hence poor academic performances, also it has been found to have caused difficulties in getting life partner and establishing family as well as failing to work and become independent eeconomically. Recommendations: Living with a sickle cell disease is a challenge. According to experiences reported by participants, health outcomes of adults living with SCD depend on good physical, social and psychological management. These can be influenced by the health care system, health personnel and individuals. The government through the Ministry of Health, Community Development, Gender, Elderly and Children, should support on prevention of the disease, (cut off the chain of inheritance), and management of the disease.