{"id":"https://openalex.org/W2953620152","doi":null,"title":"\"We di woman den, na we di suffer\"","display_name":"\"We di woman den, na we di suffer\"","publication_year":2019,"publication_date":"2019-06-19","ids":{"openalex":"https://openalex.org/W2953620152","mag":"2953620152"},"language":"it","primary_location":{"id":"pmh:oai:dora.dmu.ac.uk:2086/18092","doi":null,"is_oa":false,"landing_page_url":"https://www.dora.dmu.ac.uk/handle/2086/18092","pdf_url":null,"source":{"id":"https://openalex.org/S4306400394","display_name":"DMU Open Research Archive (De Montfort University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I66943878","host_organization_name":"De Montfort University","host_organization_lineage":["https://openalex.org/I66943878"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Technical Report"},"volume":null,"type":"report","is_traditional":false,"indexed_in":[],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5009698501","display_name":"Maria J. Berghs","orcid":"https://orcid.org/0000-0002-6512-7921","observed_orcids":["https://orcid.org/0000-0002-6512-7921"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Maria Berghs","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0002-6512-7921","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5016474757","display_name":"Amelia Eva Gabba","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Amelia Eva Gabba","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5050739851","display_name":"Sia Evelyn Nyandemo","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Sia Evelyn Nyandemo","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5006760334","display_name":"Simon Martin Dyson","orcid":"https://orcid.org/0000-0002-4735-2527","observed_orcids":["https://orcid.org/0000-0002-4735-2527"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Simon Dyson","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0002-4735-2527","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5045210735","display_name":"Gbrilla Fadlu-Deen","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gbrilla Fadlu-Deen","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5019317092","display_name":"George Tregson-Roberts","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"George Tregson-Roberts","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":3,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9965999722480774,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9965999722480774,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T13503","display_name":"Gender, Health, and Social Inequality","score":0.000699999975040555,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T10082","display_name":"HIV/AIDS Research and Interventions","score":0.0003000000142492354,"subfield":{"id":"https://openalex.org/subfields/2725","display_name":"Infectious Diseases"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/sickle-cell-disease","display_name":"sickle cell disease","score":0.9700000286102295},{"id":"https://openalex.org/keywords/women-s-experiences","display_name":"women's experiences","score":0.6110000014305115},{"id":"https://openalex.org/keywords/intergenerational-transmission-of-memory","display_name":"intergenerational memory","score":0.7799999713897705},{"id":"https://openalex.org/keywords/stigmatization","display_name":"stigmatization","score":0.7099999785423279},{"id":"https://openalex.org/keywords/health-care-access","display_name":"health care access","score":0.824999988079071},{"id":"https://openalex.org/keywords/reproductive-justice","display_name":"reproductive justice","score":0.7770000100135803},{"id":"https://openalex.org/keywords/maternal-and-infant-mortality","display_name":"maternal and infant mortality","score":0.7929999828338623},{"id":"https://openalex.org/keywords/holistic-management","display_name":"holistic management","score":0.5049999952316284},{"id":"https://openalex.org/keywords/sierra-leone","display_name":"Sierra Leone","score":0.6890000104904175}],"concepts":[{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.3490467667579651},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.32000458240509033}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:dora.dmu.ac.uk:2086/18092","doi":null,"is_oa":false,"landing_page_url":"https://www.dora.dmu.ac.uk/handle/2086/18092","pdf_url":null,"source":{"id":"https://openalex.org/S4306400394","display_name":"DMU Open Research Archive (De Montfort University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I66943878","host_organization_name":"De Montfort University","host_organization_lineage":["https://openalex.org/I66943878"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Technical Report"},{"id":"mag:2953620152","doi":null,"is_oa":false,"landing_page_url":"https://dora.dmu.ac.uk/handle/2086/18092","pdf_url":null,"source":null,"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9940000176429749},{"display_name":"Reduced inequalities","id":"https://metadata.un.org/sdg/10","score":0.8974000215530396}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":44,"referenced_works":["https://openalex.org/W42126750","https://openalex.org/W603136441","https://openalex.org/W1514359208","https://openalex.org/W1557459633","https://openalex.org/W1605989861","https://openalex.org/W1783508625","https://openalex.org/W1840068042","https://openalex.org/W1967734319","https://openalex.org/W1974348662","https://openalex.org/W1975089789","https://openalex.org/W1989572236","https://openalex.org/W2020196743","https://openalex.org/W2027662398","https://openalex.org/W2043533996","https://openalex.org/W2048841202","https://openalex.org/W2049856869","https://openalex.org/W2057151608","https://openalex.org/W2058775442","https://openalex.org/W2063541458","https://openalex.org/W2068784302","https://openalex.org/W2070702620","https://openalex.org/W2079454661","https://openalex.org/W2114908139","https://openalex.org/W2122700263","https://openalex.org/W2169795542","https://openalex.org/W2183431159","https://openalex.org/W2192348011","https://openalex.org/W2275928281","https://openalex.org/W2321733475","https://openalex.org/W2330393631","https://openalex.org/W2340271416","https://openalex.org/W2371381719","https://openalex.org/W2404492867","https://openalex.org/W2491876752","https://openalex.org/W2532176644","https://openalex.org/W2593694732","https://openalex.org/W2791233780","https://openalex.org/W2795115177","https://openalex.org/W2889514639","https://openalex.org/W2902147263","https://openalex.org/W2912921158","https://openalex.org/W2915035948","https://openalex.org/W2981630002","https://openalex.org/W3144957394"],"related_works":["https://openalex.org/W7200506176","https://openalex.org/W6903845665","https://openalex.org/W1999463613","https://openalex.org/W1608465607","https://openalex.org/W2783914212","https://openalex.org/W1974348662","https://openalex.org/W2050873325","https://openalex.org/W2005451191","https://openalex.org/W7168181252","https://openalex.org/W4392548007"],"abstract_inverted_index":{"Sierra":[0],"Leone":[1],"is":[2,62,130,265,278,294],"thought":[3],"to":[4,34,83,132,135,161,174,177,187,195,208,255],"be":[5],"one":[6,21],"of":[7,36,39,56,101,114,127,138,168,225,244,246,258,273,283,310,326],"the":[8,26,42,57,80,92,98,105,115,122,144,169,190,214,217,221,229,235,241,256,259,275],"West":[9],"African":[10],"countries":[11],"most":[12,166],"affected":[13],"by":[14],"sickle":[15,29,251,284],"cell":[16,30,285],"disorders.":[17],"Estimates":[18],"state":[19],"that":[20,60,110,216,303,325],"in":[22,74,76,79,121,154,165,204,240,268,287],"four":[23],"people":[24,141],"carry":[25],"gene":[27],"for":[28,89,232,280,301,321],"and":[31,53,65,117,125,140,149,192,199,211,228,248,261,271,312,319,324],"between":[32],"1":[33],"2%":[35],"births":[37],"are":[38,297],"children":[40,90,305],"with":[41,91,159,189,213,234,250],"condition.":[43,106,145,222],"Despite":[44],"this,":[45],"there":[46,264],"has":[47,172],"been":[48],"a":[49,111,179,288,307],"general":[50,218],"public":[51,219],"health":[52],"social":[54],"neglect":[55,224],"condition,":[58,93],"so":[59],"prevalence":[61],"poorly":[63],"understood":[64],"policy":[66],"non-existent.":[67],"This":[68,129,171],"participatory":[69],"qualitative":[70],"research":[71],"project,":[72],"conducted":[73],"2018":[75],"two":[77],"districts":[78],"country,":[81],"sought":[82],"understand":[84],"both":[85],"women\u2019s":[86],"experiences":[87],"caring":[88],"as":[94,96],"well":[95],"what":[97],"needs":[99],"were":[100],"women":[102,139,233,247,295,313],"who":[103,142,296,314],"had":[104],"The":[107],"findings":[108],"illustrated":[109],"historical":[112],"memory":[113],"condition":[116,191,236],"its":[118],"effects":[119],"exists":[120],"intergenerational":[123],"memories":[124],"practices":[126],"people.":[128],"important":[131],"learn":[133],"from":[134,156],"combat":[136],"stigmatisation":[137],"have":[143,206],"However,":[146,292],"past":[147],"expertise":[148],"medical":[150,181,198,262],"knowledge":[151],"currently":[152],"co-exist":[153],"isolation":[155],"each":[157],"other,":[158],"access":[160,196,306],"proper":[162],"healthcare":[163],"unavailable":[164],"parts":[167],"country.":[170,291],"led":[173,207],"an":[175,193],"inability":[176,194],"get":[178],"correct":[180],"diagnosis,":[182],"no":[183],"advice":[184],"about":[185],"how":[186,274],"live":[188],"specialized":[197],"rehabilitative":[200],"services.":[201],"These":[202],"failures":[203],"care":[205],"early":[209],"deaths":[210,245],"disablement,":[212],"result":[215],"fear":[220],"A":[223],"reproductive":[226],"justice":[227],"relational":[230],"implications":[231],"was":[237],"also":[238],"apparent":[239],"high":[242],"number":[243],"infants":[249],"cell.":[252],"Lastly,":[253],"due":[254],"work":[257],"voluntary":[260],"sector,":[263],"increasing":[266],"awareness":[267],"parents,":[269],"schools":[270],"communities":[272],"total":[276],"environment":[277],"crucial":[279],"holistic":[281],"management":[282],"conditions":[286],"low-":[289],"income":[290],"it":[293],"still":[298,315],"mostly":[299],"responsible":[300],"ensuring":[302],"their":[304,322,327],"better":[308],"quality":[309],"life":[311],"incur":[316],"moral":[317],"blame":[318],"shame":[320],"ill-health":[323],"children.":[328]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2023,"cited_by_count":2}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2019-07-12T00:00:00"}