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Health-related stigma consists of social exclusion of individuals and populations who are identified with particular health problems. It is a hidden burden of disease which often stems from misunderstandings about the etiology and pathophysiology of disease. Health-related stigma can negatively affect psychological and behavioral responses of both people living with the condition, and the people in their communities. It also greatly undermines efforts to combat the disease, because it has serious implications for preventive behavior, test and care seeking behavior, quality of care and the perceptions and treatment of people with the disease by communities, families and partners.
As is the case for many patients of chronic diseases, sickle cell disease patients are not immune from health related stigma. In a paper released this week, titled The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust Study Bediako et al explored the impact of stigma on sickle cell disease related outcomes in a sample of American patients. Their survey found low to medium levels of stigma, which predicated upon frequency of contact with health care systems.
Assessing the impact of stigma on SCD related outcomes is important, particularly on the African continent which, while having the highest prevalence of the disease globally, still records low levels of awareness about the disease. There is also a lack of comprehensive treatment plans for patients. The stigma faced by sickle cell disease patients on the African continent is also significantly complicated by prevailing superstitions about the disease. Analyzing the Igbo (Nigerian) phenomenom of malevolent ogbanje: spirit children born weak, chronically ill, and destined to die, Nigerian clinical psychologist Esther Nzewi found that 70 of the 100 children in her study believed to be malevolent ogbanje had sickle cell disease. (See: Malevolent Ogbanje: Recurrent Reincarnation or Sickle Cell Disease?) .
A comprehensive sickle cell disease treatment strategy for African countries, hence must include not only measures to raise awareness about the disease, but also interventions to reduce stigma, as well as provide patients with support for dealing with the psychosocial stresses that health related stigma engender. As seen with the HIV/AIDS pandemic on the continent, reducing stigma is crucial to combating diseases.
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