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dc.contributor.authorBerghs, Maria
dc.contributor.authorGabba, Amelia Eva
dc.contributor.authorNyandemo, Sia Evelyn
dc.contributor.authorDyson, Simon
dc.contributor.authorFadlu-Deen, Gbrilla
dc.contributor.authorTregson-Roberts, George
dc.date.accessioned2019-06-20T13:17:15Z
dc.date.available2019-06-20T13:17:15Z
dc.date.issued2019-06-19
dc.identifier.citationBerghs, M., Gabba, A.E., Nyandemo, S.E., Dyson, S.M.,Fadlu-Deen, G. and Tregson-Roberts, G. (2019) "We di woman den, na we di suffer": A Report on Sickle Cell in Sierra Leone. Leicester: De Montfort University.en
dc.identifier.urihttps://www.dora.dmu.ac.uk/handle/2086/18092
dc.description.abstractSierra Leone is thought to be one of the West African countries most affected by sickle cell disorders. Estimates state that one in four people carry the gene for sickle cell and between 1 to 2% of births are of children with the condition. Despite this, there has been a general public health and social neglect of the condition, so that prevalence is poorly understood and policy non-existent. This participatory qualitative research project, conducted in 2018 in two districts in the country, sought to understand both women’s experiences caring for children with the condition, as well as what the needs were of women who had the condition. The findings illustrated that a historical memory of the condition and its effects exists in the intergenerational memories and practices of people. This is important to learn from to combat stigmatisation of women and people who have the condition. However, past expertise and medical knowledge currently co-exist in isolation from each other, with access to proper healthcare unavailable in most parts of the country. This has led to an inability to get a correct medical diagnosis, no advice about how to live with the condition and an inability to access specialized medical and rehabilitative services. These failures in care have led to early deaths and disablement, with the result that the general public fear the condition. A neglect of reproductive justice and the relational implications for women with the condition was also apparent in the high number of deaths of women and infants with sickle cell. Lastly, due to the work of the voluntary and medical sector, there is increasing awareness in parents, schools and communities of how the total environment is crucial for holistic management of sickle cell conditions in a low- income country. However, it is women who are still mostly responsible for ensuring that their children access a better quality of life and women who still incur moral blame and shame for their ill-health and that of their children.en
dc.language.isoenen
dc.publisherDe Montfort Universityen
dc.subjectsickle cellen
dc.subjectwomenen
dc.subjectSierra Leoneen
dc.subjectreproductionen
dc.subjectgenderen
dc.title"We di woman den, na we di suffer"en
dc.title.alternativeA Report on Sickle Cell in Sierra Leoneen
dc.typeTechnical Reporten
dc.peerreviewedNoen
dc.funderNo external funderen
dc.cclicenceCC-BY-NCen
dc.date.acceptance2019-06-19
dc.researchinstituteInstitute for Allied Health Sciences Researchen


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