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

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT01129076
First received: May 21, 2010
Last updated: March 14, 2014
Last verified: January 2014
  Purpose

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.

Condition
Thalassemia Major

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: Perceptions of Thalassemia Major in Singapore: An Exploratory Study of Stigma

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Estimated Enrollment: 50
Study Start Date: April 2010
Detailed Description:

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.

  Eligibility

Ages Eligible for Study:   14 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria
  • 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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01129076

Locations
Singapore
KK Women's & Children's Hospital
Singapore, Singapore
Singapore General Hospital Outram Rd.
Singapore, Singapore, 169608
Sponsors and Collaborators
Investigators
Principal Investigator: Barbara B Biesecker National Human Genome Research Institute (NHGRI)
  More Information

Publications:
ClinicalTrials.gov Identifier: NCT01129076     History of Changes
Other Study ID Numbers: 999910104, 10-HG-N104
Study First Received: May 21, 2010
Last Updated: March 14, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Thalassemia Major
Stigma
Singapore
Qualitative

Additional relevant MeSH terms:
Beta-Thalassemia
Thalassemia
Anemia, Hemolytic, Congenital
Anemia, Hemolytic
Anemia
Hematologic Diseases
Hemoglobinopathies
Genetic Diseases, Inborn

ClinicalTrials.gov processed this record on July 24, 2014