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Cohort 1 RETI Fellows
Mentored Research Project Abstracts
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Participant perspectives of risks and benefits of participating in a text message-delivered intervention for safer sex communication
Abstract: Text-messaging may offer a new effective medium of HIV prevention intervention delivery. The lack of established precedents to these innovative modalities means new ethical concerns should be considered. Privacy of participants and security of data may be of most importance to IRBs. However, denying access to these interventions may undermine principles of beneficence, and respect for persons, and may not reflect participants’ views of the potential interventions’ benefits versus risks. Aim: To survey potential participants’ perceptions of risks and benefits of participating in a sexual communication intervention delivered via text messaging compared to face-to-face. Participants: Young African American women recruited from an STI clinic. Method: Three focus groups, 100 surveys (to be collected). Results/Conclusion: Focus groups results indicate high levels comfort with a text message-based intervention, identified barriers and benefits to both modalities, and suggested ways to increase benefit of text message based intervention.
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Disjuncts in understanding: An exploration of differences in the ways drug users, researchers, and federal code understand research participation
Abstract: The research will utilize a grounded theory / situational analysis approach to explore how a specific population of young people who inject drugs understand and experience participation in epidemiologic research, and will compare these understandings with those embedded in US Federal Code regulating research with human subjects, as well as with perspectives provided by researchers and IRB members. The research is expected to offer insight into disjuncts in understanding which have the potential to inadvertently leave research participants feeling mistreated.
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Jennifer Hettema, Ph.D.
Physician attitudes and behavior towards HIV+ IDUs
Abstract: While adherence to HAART may be affected among IDUs, due to the instable lifestyle associated with drug seeking and use (Wood et al., 2008), the risk of development of antiretroviral resistance among IDUs has not been found to be higher than their non-IDU counterparts (Werb et al., 2010). Despite this, IDU status has been found effect access to care for HIV (WHO, 2006; Wood et al., 2008), with evidence that physician reluctance to prescribe HIV may play contribute to this disparity (Bassetti, 1999; Ding et al., 2005). To determine the impact of IDU status on physician prescribing behavior, a national sample of community-based HIV prescribing providers completed an online survey in which they were presented with two case vignettes describing a patient with previous adherence issues presenting for treatment and requesting reinstatement on antiretroviral medications. The vignettes were identical with the exception of the IDU status of the patient. Participants were randomly assigned to see either the IDU or non-IDU (NIDU) vignette first. To date 156 participants have consented to participate in the study and 112 of these submitted complete responses. Participants were predominately female (55.8%), White (77.9%), and practicing in Urban settings (80.5%). Participants were well distributed by state. Most participants were physicians (47.8%) or nurse practioners (45.1%), with a smaller samples of physician assistants (7.1%). Independent samples t-tests revealed that neither IDU prescribing behavior (t(118)=-.258, p=.797) nor NIDU prescribing behavior (t(117)=-.693) differed significantly by condition (order of presentation). Consequently, conditions were collapsed for future analyses. A paired samples t-test was conducted to evaluate the impact of patient IDU status on prescribing behavior. There was a statistically significant difference between reported likelihood of prescribing for NIDU (M=3.51, SD=1.37) versus IDU patients (M=3.03, SD=1.37), t(115) = -5.03, p < .001. Attitudes towards shared decision making and concerns about adherence are both predictive of less willingness to prescribe to IDUs.
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Kristin Kostick, Ph.D.
Exploring participant experiences in a peer-delivered HIV intervention with IV drug users
Abstract: The goal of this project is to use qualitative methodologies to explore the role of communication between research staff and patients involved in a peer-delivered HIV risk and harm reduction program for intravenous (IV) drug users in Hartford, CT. Peer-delivered interventions among drug users have come under close scrutiny by ethics researchers because of their potential to inadvertently and negatively impact patient rehabilitation efforts due to continued exposure to and engagement with drug-using social networks in conjunction with peer-delivered intervention strategies. This study aims to explore whether enhanced communication of patient concerns and experiences with research staff may help to reduce the potential for inadvertent maleficence in peer-delivered drug treatment interventions.
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Purnima Madhivanan, M.B.B.S., M.P.H., Ph.D.
Ethical issues in the deliver of prevention of mother-to-child transmission of HIV interventions in South India
Abstract: BACKGROUND: GOI recently changed guidelines for HIV testing from “opt-out” testing to routine HIV testing of all pregnant women receiving antenatal care. PARTICIPANTS: This qualitative study examined the experiences and perceptions of recently delivered women undergoing HIV testing during ANC and healthcare workers who conduct HIV testing and counseling in government and private hospitals in Mysore, Karnataka, India. METHODS: 2 FGD carried out among recently delivered HIV-negative women who underwent HIV testing to explore women’s experiences with pre-test counseling; informed consent; and HIV testing during their antenatal care. In addition, a FGD with healthcare workers involved with HIV testing was carried out to assess KAP around HIV testing of pregnant women. RESULTS: Only six of the 15 women recalled being informed about the purpose of routine HIV testing. A large majority of the women (11) said that only their doctor informed them that they had to get an HIV test if they wished to deliver at the hospital. Only 3 of the 15 women said they recalled signing a consent form for testing but a majority (8) said they had been given forms that they were told to sign. The seven HCW attending the FGD had sufficient knowledge about HIV testing and PMTCT. While they said that they kept confidentiality about women’s HIV test results, many admitted that other hospital employees might occasionally find out about a women’s HIV status. In addition, several expressed derogatory and stigmatizing remarks about “uneducated rural women” who did not comprehend HIV counseling or understand the reasons for giving consent. CONCLUSIONS: Women are poorly informed about the risks and reasons for routine antenatal HIV testing. Healthcare workers should be further trained on confidentiality and informed consent in addition to sensitizing them about the need for non-stigmatizing HIV care and testing.
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Human subject research training for community researchers: A Pacific Northwest Native American cultural prospective
Abstract: This RETI mentored research project will develop a model to adapt and augment the Collaborative Institutional Training Initiative (CITI) human subject certification training curriculum. The model will describe the steps taken to adapt a CITI module to be culturally-responsive and user friendly for rural American Indian (AI) community researchers from Pacific Northwest tribal communities. An expert panel of AI academic and community researchers will prioritize focus areas; adapt and augment components from 1 to 2 CITI Social and Behavioral Sciences modules, highlighting cultural relevance (i.e. sovereignty), priorities and values. The Aims are: 1) in collaboration with Pacific Northwest tribal partners, define the process to produce a culturally relevant CITI human subject certification curriculum module; and 2) produce and evaluate the validity of the culturally-adapted module among 40 tribal members who: a) are 18 years or older; 2) have never taken the CITI training; 3) currently collaborate with an academic research partner or are interested in research; and, 4) reside on a reservation. Improving human subject training usability and cultural relevance for community partners will enhance HIV prevention research ethics practices.
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Elizabeth Reed, M.P.H., Sc.D.
Perceptions of HIV prevention research participation among women working as sex workers in Andhra Pradesh, India
Abstract: The proposed project aims to explore qualitatively the perspectives of female sex workers (FSW) in Rajahmundry, Andhra Pradesh (India) regarding their participation in HIV research studies, with primary focus on ethical issues in research. FSW face multiple burdens due to various contextual challenges in their lives, as well as high levels of stigma and related discrimination. Thus, efforts are needed to ensure that research is being conducted in a way that is most ethical, and specifically considers the multitude of unique factors relevant to women working as sex workers in this high HIV prevalence region of India. Findings will inform the implementation of future HIV prevention research efforts in this context, determine whether revisions to research ethics protocols are needed as well as to guide such changes, and have implications for work conducted in similar settings.
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Social and structural constraints on disclosure and informed consent with female sex workers and their managers in the Philippines
Abstract: Aim: This project explored the experiences of female sex workers (FSWs) working in night clubs, karaoke bars, and spa/saunas in the Philippines in participating in behavioral HIV prevention research, including their process of consent to research, their knowledge of research ethics, barriers to disclosure of sensitive topics, and the necessary conditions for their involvement in HIV research prevention interventions. Participants: 7 former interviewers participated in a focus group, and 20 FSWs and 10 establishment managers were interviewed individually as key informants about the research process. Method: This qualitative research used semi-structured interview guides for the individual interviews, focus group, and community advisory board meetings, and ethnographic approaches. Results: Emergent themes include FSW issues with trust of the research and interviewer, intrusiveness of survey questions, problems seeing any changes made as a result of the research, and feeling forced by government to do surveys. FSWs expressed desire to actively participate in intervention design and implementation and to learn new skills and obtain job training to learn other ways to earn money. Both FSW and managers expressed dissatisfaction with government support: having to pay for clinic health exams, and managers expressed problems with the government’s ability to intervene around police raids and bribes. Conclusion: This project has the potential to improve HIV prevention research practices with FSWs by 1) foregrounding ethical issues by addressing barriers to respect, trust, and/or disclosure stemming from risks in the structural environment or micro-level social aspects of the research process and 2) developing a more transparent and participatory approach to HIV prevention research that engages participants/ FSWs in the research process in order to reduce perceived and actual risks to participants.
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