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Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore.
Kumar, Neha; Turbitt, Erin; Biesecker, Barbara B; Miller, Ilana M; Cham, Breana; Smith, Katherine C; Rimal, Rajiv N.
Afiliación
  • Kumar N; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland.
  • Turbitt E; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland.
  • Biesecker BB; University of Technology Sydney, Graduate School of Health, Australia.
  • Miller IM; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland.
  • Cham B; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland.
  • Smith KC; Department of Paediatric Medicine, KK Women's and Children's Hospital, Singapore.
  • Rimal RN; Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland.
Am J Med Genet A ; 179(5): 762-769, 2019 05.
Article en En | MEDLINE | ID: mdl-30821068
This study explored patients' experiences and perceptions of living with thalassemia (an inherited hematologic disorder), perceptions of social stigma, and impact on disclosure decision-making. Semistructured, in-person interviews were conducted in Singapore with 30 individuals: 16 thalassemia major patients and 14 parents of children with thalassemia. Findings were indicative of felt or enacted stigma that may have influenced disclosure decisions. Although affected individuals commonly disclosed their thalassemia diagnosis to family members, they either downplayed the condition with or avoided disclosure to unrelated individuals. Disclosure outside the family occurred only in response to triggers, such as questions about absences due to medical care. Health professionals should provide anticipatory guidance about disclosure strategies when managing individuals with thalassemia.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Revelación de la Verdad / Talasemia beta / Necesidades y Demandas de Servicios de Salud Tipo de estudio: Guideline / Observational_studies / Prevalence_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Límite: Adolescent / Adult / Female / Humans / Male País/Región como asunto: Asia Idioma: En Revista: Am J Med Genet A Asunto de la revista: GENETICA MEDICA Año: 2019 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
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Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Revelación de la Verdad / Talasemia beta / Necesidades y Demandas de Servicios de Salud Tipo de estudio: Guideline / Observational_studies / Prevalence_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Límite: Adolescent / Adult / Female / Humans / Male País/Región como asunto: Asia Idioma: En Revista: Am J Med Genet A Asunto de la revista: GENETICA MEDICA Año: 2019 Tipo del documento: Article Pais de publicación: Estados Unidos