Important considerations for recruiting women to cancer genetics studies in Puerto Rico.

A goal of the Minority Institution/Cancer Center Partnership between the Ponce School of Medicine in Puerto Rico and the H. Lee Moffitt Cancer Center & Research Institute in Florida is to provide cross-cultural training in cancer research. This is achieved through a collaborative summer exchange program, which provides US students with an opportunity to conduct research in Puerto Rico. As part of this program, students recruited participants and collected data for a study to enhance the understanding of sociocultural factors among Puerto Rican women regarding genetic testing for hereditary breast/ovarian cancer. Limited studies have examined cancer genetics issues among Latinos, particularly those specific to the various Latino subgroups, such as Puerto Ricans. As a result of the student training experience, culturally appropriate strategies for the recruitment of women in Puerto Rico have been identified. These recommendations can inform the design of cancer research projects and interventions targeting the Puerto Rican population.

Levels of felt stigma among a group of people with HIV in Puerto Rico.

OBJECTIVE: HIV felt stigma is a major problem needing to be addressed because of its association with poor treatment adherence, decreases in help-seeking behaviors, high-risk sexual conduct, emotional discomfort, and the reduction of well-being in people with HIV/AIDS (PWHA). The aim of this study was to identify the frequency of felt stigma among PWHA in Puerto Rico. METHODS: A cross-sectional study was conducted with 249 subjects (59% men, 41% women). Participants completed the Puerto Rico Comprehensive Center for HIV Disparities (PR-CCHD) Sociodemographic Questionnaire and the HIV Felt Sigma Scale. RESULTS: 80% of the subjects showed some level of felt stigma. Women showed significantly higher levels of HIV-related felt stigma than did men. Disclosure, negative self-image, and public attitude scores were also higher in women than in men. Sociodemographic variables such as age, marital status, employment status, income, and educational level showed significant associations with felt stigma and its dimensions. CONCLUSION: Results of this study evidence the need to develop culturally sensitive intervention models to reduce the felt-stigma burden in PWHA.

Measuring HIV felt stigma: a culturally adapted scale targeting PLWHA in Puerto Rico.

The objective of this study was to culturally adapt and validate a scale to measure HIV-related felt stigma in a group of People living with HIV/AIDS (PLWHA) in Puerto Rico. The researchers conducted a two-phase cross-sectional study with 216 participants (60, first phase; 156, second phase). The first phase consisted of the cultural adaptation of the scale; the second evaluated its psychometric properties. After conducting a factor analysis, a 17-item scale, the HIV Felt-Stigma Scale (HFSS), resulted. Participants completed the Puerto Rico Comprehensive Center for the Study of Health Disparities Socio-demographic Questionnaire, the HFSS, the Beck Depression Inventory-II, and the Sexual Abuse dimension of the History of Abuse Questionnaire; the case managers completed the Case Manager Stigma Guide with subjects. The HFSS measures four dimensions: personalized stigma, disclosure concerns, negative self-image, and concern with public attitudes. The alpha and Pearson correlation coefficients (0.91 and 0.68, respectively) indicated satisfactory validity and reliability; the scale suggested adequate convergent validity. The HFSS is a culturally sensitive instrument that fills the existing gap in the measurement of felt stigma in Spanish-speaking PLWHA.

Felt Stigma in Injection Drug Users and Sex Workers: Focus Group Research with HIV-Risk Populations in Puerto Rico.

Though many studies have conclusively linked felt stigma and HIV, few have focused on the experiences of rejection felt by members of such socially marginalized groups as intravenous drug users (IDU) and sex workers (SW). Using focus groups, our study explored these experiences in 34 individuals (17 male UDUs and 17 female SWs) at risk of becoming infected with HIV, the objective being to discover why they engaged in maladaptive behaviors as a way of coping with felt stigma. We used deductive and inductive analysis to codify the resulting data. Concepts associated with the word stigma, emotional reactions to felt stigma, and the impact of felt stigma on self-schema helped elucidate how the internalization of felt stigma can lead to negative affective states and self-destructive behaviors (e.g., drug use and syringe exchange). Results underline the importance of developing intervention models that reduce stigma as a means of HIV prevention in vulnerable populations.

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women.

This study explored baseline levels of knowledge and attitude toward genetic testing (GT) for hereditary breast and ovarian cancer among Puerto Rican women. A secondary aim was to evaluate whether these factors differed between respondents in Puerto Rico and Tampa. Puerto Rican women with a personal or family history of breast or ovarian cancer who live in Puerto Rico (n = 25) and Tampa (n = 20) were interviewed. Both groups were interested in obtaining GT; women living in Puerto Rico were more likely to report they would get GT within 6 months (p = 0.005). The most commonly cited barrier was cost; the most commonly cited facilitator was provider recommendation. There was no difference in overall knowledge between Tampa (M = 5.15, SD = 1.63) and Puerto Rico (M = 5.00, SD = 1.87) participants (p = 0.78). Involving health care providers in recruitment and highlighting that GT may be available at minimal or no cost in the USA and Puerto Rico may facilitate participation.