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Creencias y percepciones en torno a la prueba del VIH en la zona de Monteverde, Costa Rica
Beliefs and perceptions surrounding HIV testing in the Monteverde Zone, Costa Rica
A study examining the general beliefs and perceptions surrounding HIV testing in the Monteverde Zone
Un estudio sobre las creencias y percepciones generales que rodean la prueba del VIH en la zona de Monteverde
HIV infections--Diagnosis--Costa Rica--Puntarenas--Monteverde Zone
HIV/AIDS awareness--Costa Rica--Puntarenas--Monteverde Zone
t Community Health
Beliefs and Perceptions Surrounding HIV Testing in the Monteverde Zone, Costa Rica Researchers: Fatima Abdulhussein , A . A . Karen Dyer , B . A . Mindy Keeley Romalie Valdes , A . A . Faculty Advisors: Nancy Romero Daza , PhD David Himmelgreen , PhD Research Methods in Globalization & Community Health Monteverde Institute , Costa Rica June 18 July 23, 2006
2 THE RESEARCH TEAM The research team was comprised of four women, all of whom brought with them a unique perspec tive and varied educational background. Fatima Abdulhussein , AA is a nursing student at the Seminole Community College, working toward a future goal of a graduate degree Karen Dyer, BA is a Masters student in the dual degree program in Applied Anthropology and Public Health at the University of South Florida , with prior professional experience in non profit health related education al organizations . Mindy Keeley is an undergraduate stud ent in anthropology at the University of South Florida, St. Petersburg campus. R omalie Valdez , AA is also in the undergraduate program in anthropology at the University of South Florida, Tampa campus. The Spanish language ability of the group varied wide ly: Romalie was the only fluent speaker, while Karen began the program with low intermediate language ability and both Fatima and Mindy were beginners. STUDY BACKGROUND HIV/AIDS in Costa Rica : December 2005, it was reported that the number of people living with HIV in Latin America has ri sen to an estimated 1.8 million ( UNAIDS /WHO, 2005 ). Within Costa Rica as of 2003 , the number total s 12,000 ( CIA, 2003 ) . There have been 1,200 cumulative diagn osed cases of full blown AIDS in Costa Rica as of 1997, with 70% of these cases among gay men (Stern, 1997). Research reports that the growing Central American HIV epidemic is complicated by inconsistent healthcare infrastructure ( Wheeler, Arathoon, Pitts, Cedillos, Bu , Porras ,
3 H errera & Sosa, 2001) ; however, Costa Rica is uniquely situated in that it is t he only country in Central America with universal access to antiretroviral therapy for people living with HIV/AIDS (UNAIDS/WHO, 2005) . Costa Rica has passed a law that protect s the confidentiality and anonymity of anyone testing for HIV; however, this h as not eliminated the fear of stigmatization and social repercussions of being tested ( Stern, 2000 ). HIV/AIDS in the Monteverde Zone: This study fill s a void in the existing literature on HIV/AIDS in the Monteverde Zone. Previous studies , conducte d through the Monteverde Institute, have concentrated on knowledge and beliefs surrounding HIV and STD transmission pathways , symptoms, prevention and risk groups ( Calderon, Freidus, Gillin, Schwar, & Weiner , 2003); or have focused efforts on designing cul turally appropriate educational materials that address areas of need identified by female members of the community ( Cadzow, Gross , K lein, & Ramirez Rubio, 2004) . The general direction of this research project was guided by our initial observation s and i nformal interviews with community members involved in HIV education and advocacy. It was determined through these contacts that the rate of voluntary HIV testing and discussion in the community is low, and interest was expressed by these community members to investigate the factors underlying this rate.
4 RESEARCH GOALS This study aimed to examine the general beliefs and perceptions surrounding HIV testing in the Monteverde Zone, Costa Rica, with special attention to explaining the low rates of voluntary HI V testing present in the community. The results will provide the groundwork for a targeted awareness campaign that is anticipated to be undertaken by the Monteverde Clinic at some point in the future. Three principal research questions framed our proje ct: According to the community, w hat factors facilitate HIV testing? What factors inhibit HIV testing? W hat are the optimal methods of disseminating and communicating information on HIV testing? METHODOLOGY This was an exploratory study that employed bo th qualitativ e and quantitative methods: observations, focus groups, and s urveys. Initially, we performed a mapping of the downtown area of Santa Elena to familiar ize ourselves with the general layout of businesses relevant to a study on HIV/AIDS : hotels, pharmacists and clinics. First, two surveys were distributed in the communities of Ca Ã± itas, Guacimal, Santa Elena and Monteverde. Both contained open ended as well as multiple choice questions. The first survey (see Appendix B ) was administered to adu lts participating in a community health fair in Ca Ã± itas that was held by the Monteverde Institute, and to residents visiting the
5 Monteverde Clinic . A total of 35 participants completed this survey . The second survey ( see Appendix B ) was administered to e mployees of various Santa Elena business es, and at a HIV/STD charla (community workshop) organized by the Monteverde Clinic and conducted in Guacimal. Forty seven surveys were collected for a total of 82 combined. Qualitative responses were coded and ent ered into SPSS for analysis in addition to the qualitative responses . After reviewing responses to the questionnaires, a focus group interview guide was developed and t wo focus groups were conducted. The first included ten residents of neighboring commun ities who have received structured HIV education, and the second consisted of three community members that have participated in past HIV educational initiatives. Our intention was to use participants that have been involved with HIV advocacy in the commun ity in order to gain insight on their beliefs and perceptions about the principal issues and challenges related to HIV testing. To protect the identity of the project participants, numeric codes were used in all the documents instead of names. The tape re cordings and notes will be kept at the Monteverd e Institute in a locked cabinet and destroyed after a period of three years. RESULTS One open ended question i n each of the surveys Â¿Por quÃ© cree que las personas se deban hacer la prueba para VIH/SIDA? o n Survey 1 and Â¿ Por que raz Ã³ n usted cree las personas deben hacerse diagn Ã³ on Survey 2 ) addressed what
6 participants believed other community members think and feel with regards to being tested for HIV /AIDS . A nother question Â¿ En s u opiniÃ³n, que podr Ã a hacer que las personas no on Survey 1 and Â¿ En su opiniÃ³n, por que las personas no se on Survey 2 ) addressed the reasons they felt others might have for not being tested. Converse ly, the surveys also attempted to assess whether or not participants have or would consider accessing the HIV test themselves, and the reasoning behind their decision . Factors that facilitate testing With regards to what participants thought of the comm unityÂ´s viewpoints on testing, responses appeared to be conceptualized as either individual issue s or community issue s . Among participants who regarded HIV as an individual issue, the most common reasons fell into one of three categories . The most common response, which appeared 29 times, was to gain knowledge of HIV status either a confirmation of HIV negative status or the discovery of HIV positive status . As one respondent noted, para saber si somos portadores del VIH . Many (n=18) replied that the test was useful f or the general health of the individual . For example, one replied, seguridad propia . And finally, others replied that the test affords people a ccess to health services and treatment (n=2) . Among participants who conceptualized HIV as a community issue, the three most common reasons also fell into one of three categories . The most common response was to prevent transmission and control a potential epidemic (n= 31 ). Others thought it app ropriate only for certain perceived risk groups (n=12) , such as those with multiple partners:
7 And finally, still others responded that it was useful for the general health of the community (n=9 ): persona lleva una vida desordenada debe hacerse el examen por seguridad hacia otras When asked whether participants themselves would consider getting an HIV test (see Appendix A, Figure 1) , 68% (n= 24 ) responded that the y would, while 29% (n= 10 ) said no and 3% (n= 1 ) were unsure . Among respondents who answered that they would get an HIV test, the four most common reasons were: (1) freedom from doubt; (2) that they have been faithful to partner, so they have no fear of the result; (3) to comply with certain requirements such as pregnancy and blood donation guidelines; and (4) because they have doubts about the faithfulness of their partner. Factors that inhibit testing Similar to the previous research question, the partici pants seemed to conceptualize not seeking out an HIV test as due to either individual factors or structural, external factors (see Appendix A , Figure 2 ) . Among participants who conceived of HIV testing as an individual issue, the most common reasons fell into one of six categories . The majority cited fear of consequences as the major factor (n=58) ; under this broad category, themes included fear of a positive test, fear of the prospect of death, and fear of the test itself. As one participant noted: o el mundo esta asustado y no quieren decir si tienen SIDA. Es dificil, necesita Another common response was l ack of knowledge (n=11): bien Several cited personal characteristics of individuals that
8 included irresponsibility, carelessness, and lack of consideration (n=9) . As one respondent noted: e descuidan mas . Several thought that the test was simply not necessary (n=5): orque debo de hacerme la prueba? Overconfidence and denial were mentioned as a factor (n=3): Finally, machismo was also noted by a few (n=2) as a major factor in inhibiting testing. One participant replied that por machismo y creen que solo las mujeres The major structural or external variable that respondents noted as a factor in preventing people from getting tested was stigmatization. Within the category of stigmatization, common responses included discrimination, social rejection, and shame/embarrassment. For example, on e respondent noted that hecho la prueba de VIH porque pu ede ser rechazados o criticados , and another replied . Returning to the question previously discussed on whether o r not the individual themselves would consider getting a test, 29% replied that they would not . Amon g these respondents who answered this way , the three most common reasons were: (1) faith that one does not have it; (2) that there is no need because they are faithful to their partner; and (3) that there is no need because they have confidence in their partner.
9 Avenues for community education A number of questions were posed inquiring about how participants felt about the current state of HIV education in the community, and the response s overall were positive. First, many of the respondents had already received some sort of education on HIV /AIDS 65% responded that they had . Secondly, the majority of respondents thought that the community had a strong commitment to HIV /AIDS education 66%. T hird, when asked if they would share information with their family and friends, no participants declined. Additionally, we attempted to get an idea of what participants regarded as the most useful method of com municating information on HIV testing to the community (see Appendix A , Figure 3 ) . The most common response was through a charla or through the school (n=20) , followed by clinic and pharmacy initiatives (n= 14 ), television or advertisements (n= 9 ) , pamphlet s (n= 9 ) , the internet (n= 4 ) , and family or friends (n= 3 ) . I nformation gleaned from the f ocus groups pointed to dynamic workshops , role playing , and personal testimonies as extremely important methods of community education. CONCLUSIONS & FUTURE DIRECTION S Despite the difference in questions and the venue of research whether it be surveys, focus groups, or participant observation four major themes became apparent throughout the study . First, it is clear that the residents feel that H IV testing is impo rtant and relevant to the ir community . Secondly, the community members p erceive a definite need for information on the complicated issues surrounding testing, and on t he test itself. Third, there exists a sense of individual responsibility that communi ty members are responsible
10 for protecting themselves, advocating for themselves and procuring information for themselves. Finally, it is apparent that there exists a s ense of group identity and community responsibility that will help to facilitate the cre ation of a movement. This was evidenced by the communityÂ´s ability to organize events such as the Guacimal HIV /AIDS charla , the presence of the HIV community educator workshop series, and the recurring sense among residents that the community has an impor tant responsibility and role to play in HIV education and prevention. All of these factors point to the desire , ability and timing of the community to expand HIV testing and testing education in the Zone . Recommendations Based on our findings, we generat ed a number of recommendations for future research and community involvement. We felt that a strong emphasis on education is essential to minimizing the high levels of fear surrounding testing that became evident through the surveys and focus groups. ( 1) Inf ormation on testing should be incorporated into charlas and community educational workshops , and the frequency of these workshops should be increased. This was a popular venue for communication and information gathering, noted both in the surveys a nd the focus groups. (2) Based on feedback from the focus groups, we feel that personal testimony and speakers should be introduced into HIV/AIDS educational programs. This will give participants access to meaningful information on the HIV/AIDS treatme nt process that might potentially help to diminish the fear of testing.
11 (3) Additional research on stigmatization, both its sources and its consequences, should be conducted in regards to H IV/AIDS in the Monteverde Zone. STUDY LIMITATIONS Language abi lity proved to be the primary challenge in this study. Whereas two facilitators would have been helpful for the focus groups, there was only one; this creates the possibility that valuable questions were left unanswered or unaddressed . Especially conside ring the topic of inquiry , time constraints were also a major limitation additional time for data collection and analysis might have yielded important insights and information. The logistical challenges of coordinating focus groups and interviews with l imited time, as well as transportation issues, also proved to be limitations. Finally, the sensitivity of the topic itself was a challenge: it is a possibility that community members may not have been as open or forthright considering the stigma surroundi ng HIV/AIDS in the community . ACKNOWLEDGEMENTS We would like to express our sincerest gratitude to the community members of Santa Elena, Monteverde, CaÃ±itas , La Cruz and Guacimal who provided their time, experience , and expertise to this project . We rec eived invaluable support and guidance from our community advisor Novelty Castro, advisor Patricia Jimenez, course coordinator Jenny Pe Ã± a , faculty advisors Nancy Romero Daza and David Himmelgreen , and research advisors F e d e rico Cintr Ã³ n and Scott Baker.
12 REFERENCES CITED Cadzow, R., Gross, L., Klein, C., and O. Ramirez Rubio 2004 Women S peak: HIV/AIDS Education from a Community P erspective. Field Methods in Community Health Course, Monteverde Institute, June August 2004. Calderon, C., Freid us, A., Gillin, K., Schwar, J., and C. Weiner 2003 Sexual ly Transmitted Diseases and Avenues for Education: Community P erspectives from Monteverde, Costa Rica. Field Methods in Community Health Course, Monteverde I nstitute, June August 2003 . C entral I ntelligence A gency 2006 World Factbook: Country F acts. Retrieved from https://www.cia.gov/cia/publications/factbook/index.html on July 18, 2006. Stern, R. 1 997 Dying with AIDS in Costa Rica: Access to Care and Treatment. A IDSlink, 45: 12 15. Stern, R. 2000 Country Watch: Costa Rica, Sex Health Exchange, 1: 10 11. Wheeler , D . A . , Arathoon , E . G . , Pitts , M . , Cedillos , R . A . , Bu , T . E . , Porras , G . D . , Herrera , G . , and N.R. Sosa 2001 Availability of HIV Care in Central America, J ournal of the American Medical Association, 286(7) : 853 60. World Health Organization. 2006 Summary Country Profile for HIV/AIDS Treatment Scale Up, World Health Organization. Retrieved from http:// www. unaids.org/epi /2005/doc/EPIupdate2005_html_en/epi05_09_en.htm on July 18, 2006.