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Sickle Cell Disease (SCD)

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BACKGROUD: Sickle cell disease (SCD) is a hereditary blood disorder caused by mutation in the Hemoglobin genes or the red blood cells. When dehydration or law oxygen supply occur, the muted red blood cells begins to have sickle shape which adhere to the walls of blood vessels. This process leads to further decrease blood supply to body organs and cause further damage which mostly shown by sever painful episodes or “sickle cell crises”. According to the Center for Disease Control and Prevention, SCD affects 90,000 to 100,000 people in the US and is estimated to occur in one out of every 365-500 Black or African-American births. SCD is associated with serious complications due to the frequent damage of vital organs such as: brain, hear, lung …show more content…
The theory of the ecological model of care for people with SCD, which was supported by grant from NIH, provides a useful guidance for examining the relationship between the personal and environmental variables on health outcomes to provide comprehensive patient- centered and family-focused health care. It proposed the opportunity of merging palliative care in the care of people with SCD through communication, awareness advanced planning, disease management and bereavement and grief. Recently, there has been an increase interest in improving the quality of life of patient with chronic disease and minimizing pain and suffering that negatively impact physical, social, psychological and spiritual health status. Most studies in the field of SCD have focused on prevention and interventional approach to control the disease symptoms such as recurrent pain episodes. Medical intervention is highly costly and provides fragmented health care that provides care during the acute symptomatic …show more content…
HYPOTHESIS: We will test the hypothesis that a) the personal factors (e.g. physical symptoms, and complications) and environmental factors (e.g. education, culture, income, employment, and health care accessibility) have negative impact of health outcomes, and b) that communication, knowledge and awareness mediate the relationship between personal and environmental variables and health outcomes. APPROACH: a cross sectional descriptive study will be used to test the hypothesis with a convenient sample of 50-100 adults with the diagnosis of SCD. Using a structural equation modeling, Cranach’s alpha and Preacher’s interaction tool to test the study hypothesis and statistically analyze the relationship between variables. SPECIFIC AIMS: this study aims to explore the correlation between the personal and environmental factors and the behavioral and experiential health outcomes (functional status, quality of life, symptoms, and perceived health), and explore the relationship between communication, knowledge, and awareness and health

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