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.

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Key information

Conditions

Thalassemia Major Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Behavior Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies Social Behavior Social Stigma Thalassemia beta-Thalassemia

Age range

14 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

KK Women's & Children's Hospital, Singapore

About this study

Thalassemia major (TM) is a chronic, inherited hematological disorder that can require life-long medical care. As a result of the chronic and demanding nature of the condition, studies have shown that TM might negatively affect an individual s quality of life, sense of self, social integration, and compliance with medical treatment. Yet, little is known about affected individuals overall experiences with and perceptions of TM. In this study, the concept of stigma will be used to explore and understand these experiences and perceptions in the population of individuals with TM in Singapore. This study will involve qualitative interviews with TM patients and parents of TM patients. Interviews will focus on individuals family, social and professional experiences with TM; the social messages that exist in Singapore about TM and their sources; individuals perceptions of how others view TM; individuals own perceptions of TM; and the impact of these various experiences, messages and perceptions on the individual with TM. Interviews will be conducted with approximately 20-30 individuals with TM, and 10-20 parents of individuals with TM. Interviews will be transcribed and subjected to thematic analysis to identify common themes. The results of this study will further our understanding of the psychosocial burden of TM and the potential role of stigma in this population, which may ultimately inform the care for individuals with TM. The study s setting will also provide insights into the impact of the Singaporean sociocultural context on the psychosocial elements of living with a genetic condition, which might eventually help to inform the development of appropriate psychosocial support services and genetic counseling services in the region.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

INCLUSION CRITERIA:
Individuals who currently have TM and receive at least 8 blood transfusions in a year
Residents of Singapore
Must speak English
Parents of individuals with TM will be eligible for participation if they are age 21 years or older
Parents must be residents of Singapore
Parents must speak English
For a parent to participate in the study, it will not be required that his or her child also participate in the study or vice versa.

Exclusion criteria

Children under age 14 years
Non-English speaking individuals

Sponsors and collaborators

Lead sponsor

National Human Genome Research Institute (NHGRI)

Nih

Registry information

Important dates

Study start: 2010
Study completion: 2016
First posted: May 24, 2010
Registry last updated: Dec 17, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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Completed