DOI: 10.3886/icpsr30521.v1
title: 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
title: Version 1

description: 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.
description: 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.
description: 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.
description: 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.
description: 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..
description: Datasets: 
 
 DS0: Study-Level Files 
 DS1: Community Data 
 DS2: Patient Data (Restricted Use) 
 DS3: Provider Data
description: face-to-face interview 
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.
description: Haitian residents in the United States and residents of Haiti. Smallest Geographic Unit: county
description: 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).