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Stigma and Tuberculosis in Haitian Populations: A cross-national study of the impact of stigma on patient experience and clinical outcomes in Haiti and the United States, 2003-2008 (ICPSR 30521) RSS

Principal Investigator(s):

Summary:

Tuberculosis (TB) is a public health problem of global magnitude. In the United States its victims are primarily the poor, foreign immigrants, and persons with AIDS. Efforts to control the disease are severely handicapped by the effects of social stigma and further compounded by issues of race, social class, ethnic stereotypes, immigrant status, and HIV coinfection. The study investigated the social dynamics of stigma in relation to TB in two populations particularly affected by all of these issues, Haitians in the United States and in Haiti. The theoretical framework of the study was cultural epidemiology, which combines quantitative and qualitative measures to study experience, meaning, and behavior in subpopulations of interest. The study design enabled important comparisons across national settings that highlight the differential effects of political-economic context, differences in stigma dynamics for active disease compared to latent infection, and measured the impact of stigma on adherence to preventive therapy. Study components included an ethnography of TB stigma, a cross-cultural epidemiologic study, and a community trial of adherence to preventive therapy. Study sites were South Florida, United States, and Leogane, Haiti. The study aimed to investigate: (1) differences in the degree and components of stigma across different sociocultural settings and comparison groups (community members, health care providers, patients); (2) differential stigma effects in a public vs. private, culturally competent clinic; (3) correlates of TB-related stigma; and (4) the influence of perceived stigma on adherence to latent tuberculosis therapy. Data were collected between 2003-2006 in three phases: Phase I Ethnographic Research; Phase II Cultural Epidemiologic Study; and Phase III Adherence Study. A total of 768 persons were interviewed, including 408 women (53 percent) and 360 men (47 percent). All study aims were completed with the exception of No. 2, which was not possible due to the closure of the Haitian Community Clinic in South Florida. The study consists of data from community, patient, and provider interviews. Demographic variables include sex, age, primary language, education level, employment status, marital status, and religion.

Access Notes

  • One or more files in this study are not available for download due to special restrictions ; consult the restrictions note to learn more. You can apply online for access to the data. A login is required to apply for access. (How to apply.)

    The Patient Data contain direct identifiers and sensitive data, and are restricted from general dissemination. Users interested in obtaining these data must complete an Agreement for the Use of Confidential Data, specify the reasons for the request, and obtain IRB approval or notice of exemption for their research. Apply for access to these data through the ICPSR restricted data contract portal, which can be accessed via the study home page.

Dataset(s)

DS0:  Study-Level Files
DS1:  Community Data - Download All Files (5 MB)
DS2:  Patient Data (Restricted Use)
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No downloadable data files available.
DS3:  Provider Data - Download All Files (4.3 MB)

Study Description

Citation

Coreil, Jeannine, Michael Lauzardo, and Zhu Yiliang. Stigma and Tuberculosis in Haitian Populations: A cross-national study of the impact of stigma on patient experience and clinical outcomes in Haiti and the United States, 2003-2008. ICPSR30521-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2012-05-09. http://doi.org/10.3886/ICPSR30521.v1

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Funding

This study was funded by:

  • United States Department of Health and Human Services. National Institute of Health. (Project No. 1-R01 TW06320)
  • Fogarty International Center

Scope of Study

Subject Terms:   AIDS, anxiety, attitudes, clinics, communicable diseases, communities, cultural perceptions, disease, emotional states, health, health attitudes, health behavior, health care facilities, HIV, illness, immigrants, medical care, physical condition, sexual health, stress, symptoms, treatment, tuberculosis

Smallest Geographic Unit:   county

Geographic Coverage:   Florida, Haiti, Tampa, United States

Time Period:  

  • 2003--2008

Date of Collection:  

  • 2003--2008

Universe:   Haitian residents in the United States and residents of Haiti.

Data Types:   survey data

Data Collection Notes:

Special collaborator(s): Gladys Mayard, MA, Haiti Field Director, Centre de Recherches et Services Socio-humanitaire, Port-au-Prince, Haiti; Mitchell Weiss, MD, PhD, Consultant, Swiss Tropical Institute, Basel, Switzerland.

Methodology

Study Purpose:   Specific Aims: (1) Conduct ethnographic research on the sociocultural context of tuberculosis in Florida and in Haiti, with particular focus on aspects of social stigma related to the disease. (2) Conduct instrument development studies in Florida and in Haiti using the EMIC protocol to produce culturally valid measures of stigma for each setting. (3) Conduct a cultural epidemiologic study of stigma related to tuberculosis in Florida and in Haiti, measuring level of disease-related stigma among three populations in each setting: TB patients, clinic staff, and community residents. There will be two separate populations of patients and clinic staff in Florida (Broward County), one drawn from a public health department clinic, the other from a private Haitian-staffed clinic. Comparison of stigma scores will be made across all groups. (4) Test the hypothesis that perceived stigma is negatively associated with adherence to preventive TB therapy through a quasi-experimental cohort study of latent TB patients in Florida, monitoring both acceptance of preventive therapy as well as adherence to therapy over time. Predictive association between acceptance/duration of treatment and stigma scores will be analyzed.

Study Design:   The Cultural Epidemiologic Study component of the study was adapted based on the EMIC framework for cultural studies of illness developed by Weiss and colleagues (Weiss et al. 1992; Weiss 1997; Weiss 2001; Weiss et al., 2006). The EMIC is a set of protocols for studying cultural components of particular illnesses, including experience, meaning, and behavior. It is operationalized into patterns of distress (PD), perceived causes (PC), and help-seeking (HS). It uses an open-ended query approach to elicit a respondent's perceptions or representations of an illness. Basic questions include "What is the problem?", "What is the cause?", and "What kinds of help are appropriate?". In addition, a special subscale within the EMIC was developed to measure disease-related stigma. The particular set of items used in the Stigma Scale varied depending on the illness condition, cultural context, and population targeted.

Sample:   A total of 768 persons were interviewed, including 408 women (53 percent) and 360 men (47 percent). This was made up of 293 community (38.15 percent), 316 patient (41.15 percent), and 159 provider respondents (20.7 percent). Community residents were recruited using an organization-based cluster sampling technique (Bernard, 1988; Chavez et al. 1999). Five types of organizations serving the Haitian community were targeted: churches, schools (parents and teachers), businesses, civic/recreational organizations, and social service agencies. Adults between the ages of 18 and 80 were selected through contacts of the research team within the organizations and from information listed in a Haitian Resource booklet provided by Broward County Health Department. For the clinic sample, clinical, outreach and administrative staff from tuberculosis programs and services were interviewed. Patients were selected from hospital (Haiti) or public health department (Florida) TB clinics and included patients with both active disease and latent TB infection (LTBI).

Mode of Data Collection:   face-to-face interview

Description of Variables:   Interviewees were selected from three populations: community residents, clinic staff, and clinic patients. Separate open-ended interview guides were developed for each group. The guides included questions related to how Haitians are viewed in South Florida, health problems in the Haitian community, individual and collective behavior related to stigmatized illnesses, explanatory models of tuberculosis, and the impact of tuberculosis on affected individuals. Health care providers were also asked about their experience caring for tuberculosis patients, challenges of providing care to culturally diverse populations, and the difficulties faced by TB patients.

Extent of Processing:  ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:

  • Performed consistency checks.
  • Created variable labels and/or value labels.
  • Standardized missing values.
  • Created online analysis version with question text.
  • Performed recodes and/or calculated derived variables.
  • Checked for undocumented or out-of-range codes.

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