ArticleAmerican journal of medical genetics. Part A2019
Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore.
Article in American journal of medical genetics. Part A, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed.
- Disease Burden in Transfusion-Dependent β-Thalassemia (TDT) Patients and Caregivers in Italy: Results of a Cross-Sectional Descriptive Online Survey.Drugs - real world outcomes · 2026Article
- Psychosocial burden in transfusion dependentJournal of Taibah University Medical Sciences · 2023Article
- Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers' Perspective: A Qualitative Study.Frontiers in pediatrics · 2022Article
- Predictors of health state utility values using SF-6D for Chinese adult patients with β-thalassemia major.Frontiers in public health · 2022Article
- Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study.International journal of hematology-oncology and stem cell research · 2020Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.