Perceptions of Thalassemia Major in Singapore: An Exploratory Study of Stigma

Background:

• Thalassemia major (TM) is a chronic disorder that affects a person s ability to produce hemoglobin, resulting in anemia. Hemoglobin is a component of red blood cells that carries oxygen and nutrients to cells in the body. As a result, individuals require life-long blood transfusions and extensive medical management. Studies have shown that because of its demanding nature, TM might negatively affect an individual s quality of life, sense of self, and social integration, but little is known about affected individuals overall experiences with and perceptions of TM.
• TM is caused by a genetic change in the thalassemia gene. The disease is passed to children by parents who carry one copy of the altered thalassemia gene. The parents are called carriers of the condition and have a 25 percent chance of having a child with TM. It is possible to screen for carriers of TM and use this information for pregnancy planning and management.
• TM is common among people from South and South East Asia and is an important public health concern in Singapore. More research is needed to explore the lives of people with TM, and the societal perceptions that exist in Singapore about TM. Objectives:
• To describe the familial, social, and professional experiences of individuals with TM.
• To investigate the social messages being given out about TM in Singapore and the sources of those messages.
• To explore the impact of these experiences, perceptions, and social messages on individuals who have TM.
• To explore how the experiences and perceptions of individuals who have TM affect their life, sense of self, social integration, and compliance with medical treatment. Eligibility:
• Residents of Singapore who are 14 years of age or older, can speak English, and currently have TM.
• Parents of individuals with TM who are 14 years of age or older. Parents must be 21 years of age or older, be able to speak English, and have had caregiving responsibilities for their child at some point. Design:
• All participants will have a one-time semi-structured interview, followed by a questionnaire to obtain demographic information.
• Interviews will be conducted in Singapore and are expected to last for 30 to 90 minutes.
• Individuals with TM will be asked about their own perceptions of TM; familial, social, and professional experiences involving TM; and their perceptions of others views and of social messages related to TM.
• Parents of individuals with TM will be asked about their experiences in caring for a child with TM, talking to their child about TM, telling people about their child s TM, and interacting with health care providers.