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.
