Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti.

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 "Hope Clubs" were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti's 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

Anticipated tuberculosis stigma among health professionals and Haitian patients in South Florida.

This paper compares tuberculosis-related stigma perceptions of health professionals with that of local patient populations, and examines these in relation to other measures of anticipated distress. Comparison groups were service providers and Haitian American patients diagnosed with latent TB (LTBI). Providers consistently rated LTBI higher on anticipated stigma than patients both overall and for internal perceptions and emotions, external perceptions and actions, and Haitian identity. Health professionals were almost five times more likely than patients to report the possibility of other types of psychosocial distress. The findings are consistent with previous studies reporting a higher degree of perceived stigma among unaffected populations compared with people diagnosed with a medical condition. Results suggest that providers may overestimate the likelihood that patients with a stigmatized condition will experience negative consequences. This may negatively affect adherence to TB testing guidelines because of confidentiality concerns. The implications for achieving national TB elimination goals are discussed.

Ethnicity and cultural models of recovery from breast cancer.

OBJECTIVE: Recovery narratives describe the culturally shared understandings about the ideal or desirable way to recover from an illness experience. This paper examines ethnic differences in recovery narratives among women participating in breast cancer support groups in Central Florida, USA. It compares groups serving African-American, Latina, and European American women, with the objective of better understanding the appeal of ethnic-specific illness support groups for culturally diverse populations. DESIGN: A mixed-method study design combined qualitative and quantitative measures, including in-depth interviews, participant observation at support group meetings, collection of printed documents, and a structured survey. RESULTS: Core elements of the recovery narrative drew from the dominant societal cancer discourse of optimism and personal transformation through adversity; however, important ethnic differences were evident in the meaning assigned to these themes. Groups gave distinctive salience to themes of faith and spirituality, empowerment through the migration experience, and becoming a better person through the journey of recovery. CONCLUSION: The findings suggest that ethnic cancer support groups draw upon dominant societal discourses about cancer, but they espouse distinctive recovery narratives that are consonant with the groups' cultural models of illness. Similarity between ethnic members' individual recovery narratives and that of the group may contribute to the appeal of ethnic illness support groups for culturally diverse populations.

Frequent fliers, school phobias, and the sick student: school health personnel's perceptions of students who refuse school.

BACKGROUND: This study explored school personnel's perceptions of school refusal, as it has been described as a "common educational and public health problem" that is less tolerated due to increasing awareness of the potential socioeconomic consequences of this phenomenon. METHODS: In-depth interviews were conducted with school personnel at the middle school (N = 42), high school (N = 40), and district levels (N = 10). The findings focus on emergent themes from interviews with school health personnel (N = 12), particularly those themes related to their perceptions of and role in working with school-refusing students. RESULTS: Personnel, especially school health services staff, constructed a typification of the school-refusing student as "the sick student," which conceptualized student refusal due to reasons related to illness. Personnel further delineated sick students by whether they considered the illness legitimate. School health personnel referenced the infamous "frequent fliers" and "school phobics" within this categorization of students. Overarching dynamics of this typification included parental control, parental awareness, student locus of control, blame, and victim status. These typifications influenced how personnel reacted to students they encountered, particularly in deciding which students need "help" versus "discipline," thus presenting implications for students and screening of students. CONCLUSIONS: Overall, findings suggest school health personnel play a pivotal role in screening students who are refusing school as well as keeping students in school, underscoring policy that supports an increased presence of school health personnel. Recommendations for school health, prevention, and early intervention include the development of screening protocols and staff training.

Structural forces and the production of TB-related stigma among Haitians in two contexts.

In recent years renewed interest in health-related stigma has underscored the importance of better understanding the structural underpinnings of stigma processes. This study investigated the influence of sociocultural context on perceived components of tuberculosis-related stigma in non-affected persons by comparing Haitians living in South Florida, USA, with Haitians residing in Léogane Commune, Haiti. Using the methods of cultural epidemiology, a two-phase study based on fieldwork between 2004 and 2007 collected ethnographic data on the cultural context and components of tuberculosis (TB) stigma, and administered a stigma scale developed specifically for these populations. Thematic analysis of stigma components expressed in interviews, focus groups and observation revealed commonalities as well as distinctive emphases of TB stigma in the two comparison groups. Factor analyses of stigma scale scores confirmed the thematic differences revealed in ethnographic findings and highlight the influence of political and economic factors in shaping the meaning and experience of illness. Perceived components of TB stigma among Haitians in South Florida incorporated aspects of Haitian identity as a negatively stereotyped minority community within the larger society, while in Haiti, stigma was associated primarily with poverty, malnutrition, and HIV co-infection. Discussion of findings focuses on the social production of perceived and anticipated stigma as it is influenced by structural forces including the influences of politics, economics, institutional policies, and health service delivery structures. The findings also demonstrate the value of a transnational framework encompassing both sending and receiving countries for understanding TB-related stigma in immigrant communities.

Stigma and Therapy Completion for Latent Tuberculosis among Haitian-origin Patients.

A prospective cohort study of LTBI treatment conducted within the Haitian population of South Florida investigated the predictive association between illness-related stigma among patients near the beginning of treatment and completion of preventive therapy. Factors associated with perceived stigma were also investigated. Ninety patients from Broward and Palm Beach counties were administered a questionnaire that included items related to illness history, perceptions and understanding of latent tuberculosis, and a 25-item stigma scale adapted from previously developed measures of tuberculosis-related stigma. Therapy completion was determined through a follow-up chart review. Data analyses compared patients who completed therapy with those who defaulted on a number of variables including perceived stigma. No association was found between perceived stigma or demographic characteristics and adherence to preventive therapy. Perceived stigma was associated with patient report of illness-related distress and was higher among patients who were lost to follow up. Some evidence suggested that stigma was higher among contacts of cases, patients with limited understanding of the condition, and patients who were more closely monitored during treatment. Case management should focus on patient-centered approaches to education and counseling about LTBI that address patient understanding of the condition and concerns about its physical and psychosocial effects.

Cultural models of illness and recovery in breast cancer support groups.

In an ethnographic study of breast cancer support groups for white women, the authors describe the cultural model of illness and recovery espoused by the groups and examine contested areas that might influence participation. Through analysis of interviews, observation at meetings, and program documents, they develop a model of group culture that includes five components: recovery narrative, group metaphors, perceived benefits, group processes, and contested domains. The recovery narrative focuses on optimism and personal growth, and members invoke metaphors of family and sisterhood to describe their relationship to the group. Linkages are made between perceived benefits and group processes. Contested domains challenge dominant features of the recovery narrative. The authors discuss the value of cultural studies of illness support groups for understanding member-group fit.

Cultural feasibility assessment of tuberculosis prevention among persons of Haitian origin in South Florida.

A cultural feasibility study was conducted among persons of Haitian origin in South Florida to identify factors which might influence utilization of screening and treatment services for latent tuberculosis infection in this population. Five focus group interviews conducted among men and women explored cultural beliefs and practices related to TB, barriers and incentives to screening, and approaches to increasing treatment adherence. Key findings include the influence of social stigma and fears related to confidentiality of medical status as disincentives to screening. Cultural sensitivity to being labeled as a high risk group for these infections also emerged as a critical variable. Community-based approaches to health education for this population are described. Study recommendations include the planning of programs based on a service delivery model that stresses respect and personal attention to clients, improved interpersonal skills of health center staff, and coordination of services between private doctors and public health agencies.