title: Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghana.
abstract: People fearful of being stigmatized by a health-related condition often do not embrace prevention behaviors or seek medical help. They may adhere poorly to treatment regimes for disease and abruptly terminate much needed treatment. Globally, 120 million--many poor women--suffer consequences of lymphatic filariasis that include stigmatizing lymphedema or elephantiasis of the leg. We investigated how women with lymphedema from two different cultures experience stigma and its consequences. Our qualitative data were collected from 56 Dominican women and 48 Ghanaian women with lymphedema. A lymphedema-related stigma framework was developed from constructs derived from the literature and emergent themes from the data. Women described a spectrum of enacted, perceived, and internalized stigma experiences, such as being criticized and isolated by the community, health providers, and even by friends and relatives; they were often denied access to education and meaningful work roles. Some antecedents, consequences, coping strategies, and outcomes of these experiences varied across cultures, with Dominican women faring somewhat better than Ghanaians. Poverty, poor access to health care resources, limited education, and diminished social support challenged the coping strategies of many women and exacerbated negative consequences of lymphedema-related stigma.
authors.affiliation: National Center for Preparedness, Detection, and Control of Infectious Diseases, Centers for Disease Control and Prevention, 1600 Clifton Road, Mailstop C-14, Atlanta, GA 30333, USA. bobbieperson@gmail.com
authors.forename: Bobbie
authors.initials: B
authors.lastname: Person
authors.forename: L Kay
authors.initials: LK
authors.lastname: Bartholomew
authors.forename: Margaret
authors.initials: M
authors.lastname: Gyapong
authors.forename: David G
authors.initials: DG
authors.lastname: Addiss
authors.forename: Bart
authors.initials: B
authors.lastname: van den Borne
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health / Q000208:ethnology*; D003469:Culture; D004293:Dominican Republic; D004605:Elephantiasis, Filarial / Q000208:ethnology* / Q000503:physiopathology / Q000523:psychology*; D019353:Endemic Diseases; D005190:Family / Q000208:ethnology; D005260:Female; D017144:Focus Groups; D005869:Ghana; D006801:Humans; D007398:Interpersonal Relations; D008875:Middle Aged; D011287:Prejudice; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D012649:Self Concept; D012934:Social Isolation; D013240:Stereotyping; D016387:Women's Health / Q000208:ethnology*