Abstract: Young trans women experience a number of psychosocial challenges including discrimination, prejudice, stigmatization, and social/economic marginalization, which stand as obstacles to linkage and retention in HIV care and ART medication adherence. Due to these challenges, and their often transient nature, a text-messaging HIV intervention that is easily accessible, culturally competent, private and portable is a particularly salient method for engaging and retaining young trans women in HIV care. This project utilizes a text-messaging intervention to improve engagement, retention, and health outcomes along the HIV Care Continuum, with the desired outcome of viroligical suppression, among HIV-positive young trans women, aged 18-34, who are not linked to care, or not retained in care, or not prescribed ART, or nonadherent to ART, or not virologically suppressed. Over the course of the 90-day intervention, participants receive 270 theory-based text messages that are targeted, tailored, and personalized specifically for HIV-positive young trans women; participants receive three messages per day in real-time within a 10-hour graduated and automated delivery system. The text-message content is pre-written along the HIV Care Continuum (i.e., HIV positivity/physical and emotional health, linkage/retention in care, ART adherence/viral load suppression) and is based on three proven theories of behavior change (i.e., Social Support Theory, Social Cognitive Theory, and Health Belief Model). Following screening for eligibility, informed consent, and baseline assessment, participants are randomized into one of two conditions: Group A: Immediate Text Message Intervention Delivery (ID, n=60); or, Group B: Delayed Text Message Intervention (DD, n=60) whereby participants are delivered the text-messaging intervention after a delayed 90-day period. Participants in both groups receive the exact same 90-day text-messaging intervention. Following the 90-day theory-based, trans-specific text-messaging intervention, participants may opt in/opt out of continued weekly post-intervention messages for ongoing retention and engagement support derived from the HRSA-funded UCARE4LIFE library. The randomized two-group repeated measures design assesses participants at 3-, 6-, 12-, and 18-months post-randomization to determine observed intervention effects and longitudinal intervention effects.
Abstract: Trans women of color experience a number of psychosocial challenges including discrimination, prejudice, stigmatization, and social/economic marginalization, which stand as obstacles to HIV care and other needed services. The Alexis Project* employs a multi-tiered, comprehensive approach, which includes network, individual and structural components to identify, recruit, test, link, treat and retain trans women of color into quality HIV care. The Alexis Project incorporates three proven models, Social Network Recruitment (network), Peer Health Navigation (individual) and Contingency Management (structural), into one multi-leveled project to optimize HIV health outcomes for trans women of color. Through Social Network Recruitment, local trans women recruit trans women of color from their social, sexual and drug-using networks into the project for either testing (HIV unknown status) or (for those who are aware of their HIV infection but not in care) to the combined Peer Health Navigation and Contingency Management intervention. Over the five-year study, 139 trans women of color will enroll in the combined Peer Health Navigation and Contingency Management intervention. The project goals are: 1) to identify trans women of color who are unaware of their HIV-positive status and identify trans women of color who are already aware of their HIV infection but have never been engaged in care or have refused a referral to care or have dropped out of care; 2) to directly link HIV-infected trans women of color to a Peer Health Navigator; 3) to link HIV-infected trans women of color to quality HIV care; 4) to work with HIV-infected trans women of color to address the barriers in their life that limits or impedes their access to HIV care; and, 5) to retain HIV-infected trans gender women of color in HIV care to reach and sustain HIV milestones. Peer Health Navigators work with participants to identify HIV care services and other needed services, develop a specific client-centered treatment plans, remove barriers to those services and access those services. Contingency Management provides increasing valuable incentives for attending HIV medical visits and reaching and sustaining HIV milestones.
Hours: Weekdays, 10:30 a.m. to 7:00 p.m.
Contact: 323-793-4645 or 323-512-7014
Funding Source: This project is funded by the Health Resources and Services Administration (HRSA) and sponsored by Friends Research Institute, Inc.
https://www.friendscommunitycenter.org/alexis-project
*The Alexis Project is named after Alexis Rivera who died on March 28, 2012, at the age of 34, from complications related to HIV. Alexis was a proud Latina trans woman; a community activist, a peer advocate and a gatekeeper.
Abstract: HIV care requires high medication adherence to achieve optimal clinical outcomes such as slowing the progression to AIDS. Youths face special and unique challenges to adherence. Despite a wealth of interventions designed to increase adherence outcomes, few have focused on interventions that are sustainable in resource-limited settings, or for the period of adolescence. Developing ways to increase adherence rates among adolescents is particularly important as this groups experiences the fastest growth in new HIV/AIDS cases. Existing interventions often require scarce human resources, limiting their practical use. Novel ways of adapting traditional interventions in a sustainable manner are important in resource-limited settings, where second-line therapy is often too expensive or altogether unavailable. The recent rapid rise in mobile phone coverage and ownership among developing country populations has spawned the advent of mobile-phone based interventions to improve health service delivery; short message service (SMS)-based interventions have been found to increase adherence rates to ART among adult patients. However, more knowledge about this promising technology is needed as currently no clear-cut evidence exists about the pathways through which they work. The proposed study ‘SMS as an Incentive To Adhere’ (SITA) proposes novel ways of using SMS messages that are explicitly grounded in the theoretical framework of Social Cognitive Theory (SCT). The first intervention is that of self-monitoring, i.e. providing participants with feedback about their adherence performance. Traditionally this involves clinic visits that take up provider and patient time and resources; SIT instead suggests providing objective, real-time information measured by electronic monitoring (Wisepill) devices sent to patients by weekly SMS. Such feedback builds self-efficacy, a key SCT concept and so may contribute to improved adherence. The second intervention is based on the SCT concept of social learning. Perceived group norms, and interventions that affect those perceptions, are a key influence on health behavior among youths, providing a substitute for direct learning. This approach is adapted to a mHealth environment by providing patients not only with their own adherence information but also that of a reference (peer) group. The first aim of the study is to hold focus groups with key stakeholders to tailor the SMS-intervention to the local needs of youths. The second aim planned is a small, six-month randomized controlled trial testing the two SITA intervention groups against a control condition of usual care to determine which method of informing and motivating drug adherence can best achieve its goals. The third aim is to synthesize lessons learned and discuss them with the clinics and other key stakeholders. The purpose of such capacity building and knowledge transfer activities part of this study is to build up mHealth knowledge at Mildmay and Uganda more generally to a point where ideas can be generated and implemented locally.
Project Number: 5RMH107218-02
Abstract: Implementation science examines the efficiency of intervention implementation and to translate the existing efficacious intervention models to real world services. It could potentially enhance the effectiveness and sustainability of the behavioral intervention projects. I received my PhD in epidemiology from the University of California, Los Angeles (UCLA) in 2009. Through my involvement in several large-scale HIV behavioral intervention projects and my doctoral dissertation study, I realized the importance of implementation science in intervention delivery and determined long-term career goal to become an implementation science researcher to bridge the gap between existing knowledge and service delivery. To fill in the gap between my current skill set and the career goal, I will receive training in areas related to implementation science, including health policy, intervention adaptation, and healthcare management. The health policy training will familiarize me with the process of policy development and its influence on the intervention adaptation and implementation; the intervention adaptation courses will inform me with the general concept and framework to design the study ensuring all aspects of intervention implementation are addressed; and the health management training will provide me with analytical tools to model leadership decision making and to evaluate the implementation flow in healthcare settings. The mentor team members, Drs. Li Li, Mary-Jane Rotheram-Borus, Thomas J. Coates and Zunyou Wu, are all internationally reorganized experts in behavioral intervention implementation and adaptation. My institute, the UCLA Semel Center for Community Health (CCH) and the Center for HIV Identification, Prevention, and Treatment Services (CHIPTS), UCLA, provide me with support from a multidisciplinary team of top researchers. Collaborating with the National Center for AIDS/STD Control and Prevention (NCAIDS), China CDC, I will conduct a mentored research using an intervention trial with significant yet heterogeneous outcome to investigate multilevel factors influencing the intervention implementation and outcome, and to find the optimal approach to incorporate the intervention model into the current healthcare settings. The study will be conducted in three phases. Phase 1 will be review of related policies and in-depth interviews with healthcare administrators and hospital directors, with the aim to explore the policy barriers and facilitators in adaptation of the intervention model. Phase 2 will be conjoint analysis with hospital directors to model the decision-making in intervention adaptation and routinization in the healthcare facilities. Phase 3 will be bottleneck analysis to locate structure bottlenecks in compliance with the intervention component. The finding will provide implications for future intervention delivery in healthcare settings. Application of some analytical tools in other fields, including conjoint analysis and bottleneck analysis, will potentially contribute to the development of implementation science methodology. Based on the data achieved from the study, I will prepare for a R01 application in implementation science in Year 4 of the K award period.
Project Number: 5K01MH1021447-05
Abstract: This 5-year project aims to enhance the role of commune health workers (CHWs) in HIV and drug use prevention and treatment. We demonstrate the process of development, implementation, and evaluation of an integrated intervention for CHWs, IDUs, and their family members (FMs) in Vietnam. In Phase 1, intervention topics, format, delivery procedures, and supporting materials are developed through a series of focus group discussions. In Phase 2, implementation pilot and process evaluation are conducted to collect feedback from participating CHWs, IDUs, and their FMs by in-depth interviews in two commune health centers. In Phase 3, we conduct an intervention trial (CHW CARE intervention) in 60 commune health centers (5 CHWs, 15 IDUs and 10 FMs from each commune center), totaling 300 CHWs; 900 IDUs and 600 FMs. Randomization occurs at the commune level (30 communes assigned to the intervention group; 30 communes assigned to the control group). At each commune assigned to the intervention, the intervention is delivered to CHWs first, and the participating CHWs are required to conduct individual and group sessions with IDUs and FMs in their communes. The efficacy of the intervention is assessed at baseline, 3, 6, 9, and 12-month follow-ups by comparing outcome measures of CHWs, IDUs and FMs in the intervention group to those in the control group. Relationships between the intervention outcomes of CHWs, IDUs, and FMs are explored.
Project number: 4R01DA03360-05
Abstract: The UCLA Center of the Multicenter AIDS Cohort Study proposes to continue to document clinical, immunologic, physiologic, behavioral, virologic, genetic and psychosocial changes in HIV-infected and -uninfected men-who-have-sex-with-men (MSM). This includes proposed studies to document these changes in MSM recruited 1983-4 and 2001-2, as well as plans to recruit new untreated and recently treated HIV-infected MSM (primarily African- and Hispanic- Americans), to maintain the cohort. The UCLA MACS will provide leadership and participation in the working groups, MACS-wide and local studies and research publications, and collaborative multi-cohort studies, as it has since the inception of the MACS 30 years ago. The UCLA MACS has recruited a large team of young and established co-investigators from a wide range of disciplines. These investigators have developed, and are continuing to develop, innovative proposals to advance our understanding of the pathophysiology, immunology, genetics and biobehavioral characteristics of treated and untreated HIV infection. The breadth, youth, experience and innovation of the UCLA MACS investigators, combined with the experience and commitment of the long-term staff, and our leadership of quality control procedures for immunologic and virologic measures and specimen processing, will continue to play an invaluable role in the success of the MACS over the next five years.
Project Number: 5U01SI035040-25
Abstract: The South African National Development Plan recognizes the value of health care delivery models such as home based counselling and testing (HBCT) by aiming to train between 700,000 and 1.3 million community health workers (CHW) to implement community-based health care by 2030. The CHW role include working with households to facilitate access and linkage to primary health care facilities, provide outreach and community organization support, health education and coaching on health system navigation. Key barriers to sustainability and scale-up of community health worker programs include: i) a lack of integration between CHW and the health system; ii) poor tracking of how many people receive health services in their home; and iii) once referrals are successful, inadequate communication about the referral to and from the referral site. The South African health information system is currently ill equipped to handle these challenges and needs to be strengthened. We propose a 2-year study to develop and test a mHealth platform aimed at addressing these challenges for persons living with HIV (PLH). We focus on HIV due to the high prevalence rates in South Africa and impact that mobile technologies can make on HIV care. A mHealth platform will be developed that can be used by CHW to enroll household members and track their movement into and between health facilities. It will provide a standard interface by which current and future systems can query the stored data, thereby increasing interoperability and long term sustainability. The platform will unobtrusively support communication between clinic-based health providers and CHW supervisors. In summary, we aim to:1) Assess the perceived barriers and benefits to implementing an mHealth platform to link PLH to care through key informant interviews and foucs groups with health officials, clinic staff, CHW, and PLH; 2) Develop an mHealth platform that is inexpensive, scalable, open to integration, and can monitor patients from HBCT into facility based health care; and 3) Pilot test the mHealth platform and compare linkage to care between PLH from two communities that deploy our mHealth platform (mHealth communities) and PLH from two control communities where HBCT is currently being conducted without our mHealth platform. In the mHealth communities, we will also evaluate process measures to identify bottle necks between HBCT and visitation to an mHealth clinic.
Project Number: 5R21MH16351-02
Abstract: The Evaluation and Technical Assistance Center (ETAC) will be comprised of a collaborative team of experts from the Department of Family Medicine and the Center for HIV Identification, Prevention, and Treatment Services (CHIPTS) at the University of California, Los Angeles (UCLA), and an expert from the University of California, San Francisco (UCSF). The ETAC is guided by three goals:
- To provide technical assistance to equip demonstration sites with the skills and capacity to design, implement, evaluate and sustain social media-based interventions to improve engagement and retention of HIV-positive youth and young adults in HIV medical care.
- To conduct a national, multi-site evaluation of social media-based interventions for HIV positive youth and young adults across demonstration sites. We will employ mixed methods to understand intervention effectiveness. Overall potential evaluation questions include:
- To what extent is implementation of each demonstration project’s social media-based intervention associated with improvements in identification, engagement, treatment, adherence and retention in HIV care among youth and young adults living with HIV?
- To what extent is implementation of each demonstration project’s social media intervention associated with improved utilization and adherence to appropriate HIV care and services?
- To what extent does each demonstration project’s social media intervention improve behavioral and biomedical health outcomes among youth and young adults living with HIV?
- To what extent is each demonstration project able to engage and retain HIV-positive youth and young adults in the use of their social media-based intervention?
- What is the acceptability and usability of each demonstration project’s social media delivered interventions among HIV-positive youth and young adults?
- What site, provider, and client characteristics are associated with engagement in HIV care, utilization of HIV clinical and support services, and/or behavioral and biomedical health outcomes?
- What individual, interpersonal, cost, and community/societal factors are associated with engagement in HIV care, utilization of HIV clinical and social support services, and/or behavioral and biomedical health outcomes?
- To coordinate dissemination of findings. The ETAC will support demonstration sites in
disseminating results to ensure that findings are widely distributed to diverse audiences. Based on the collaborative team’s research experience in using social media technologies, extensive experience providing technical assistance and training, and our ongoing experience implementing existing ETACs for other HRSA Special Projects of National Significance (SPNS), we are uniquely qualified to serve as the ETAC for this initiative
Abstract: People living with HIV/AIDS (PLHA) have a critical role to play in HIV prevention, not only in the context of Prevention for Positives and Treatment as Prevention, but as powerful change agents for HIV protective behaviors among others. Our research suggests that as PLHA receive HIV treatment and restore their health and functioning, many are motivated to protect their loved ones and engage in prevention advocacy (i.e., to encourage friends and family to seek HIV testing and treatment, and to reduce risk behavior); however, the quality of this advocacy is hampered by challenges related to message content, style and timing of delivery, and selection of advocacy recipients. With effective advocacy training, mobilizing PLHA to be change agents within their social networks has the potential to be a “game changer” for HIV prevention, particularly in high prevalence settings such as Uganda, where virtually every family is touched by someone living with HIV. Drawing upon theoretical frameworks for network-based interventions, such as theories of social diffusion, cognitive consistency, and social influence, the proposed study will develop and pilot test “Game Changers”– an intervention that aims to empower and mobilize PLHA to be agents for HIV prevention and behavioral change in their social networks. In Phase 1, we will conduct separate focus groups of PLHA and members of their social networks (family and friends) to explore barriers to and facilitators of mobilizing clients to advocate for HIV prevention, perceptions on how advocacy can be most effective in motivating behavior change, and how to best structure the intervention and its content. In Phase 2 we will use findings from Phase 1, and draw from network-based intervention models to develop the structure and content of an intervention designed to help clients cope with stigma, manage their disease, live positively, and develop motivation and skills for HIV disclosure and prevention advocacy. In Phase 3 we will pilot the group intervention in a controlled trial of 96 clients, with 48 randomly assigned to receive the intervention and 48 to the wait-list control. Assessments will be administered to all participants at baseline and months 4, 8 and 12, after which the control group will receive the intervention. Surveys and social network assessments will examine intervention effects on protective behaviors of the participant (condom use, HIV treatment adherence), and diffusion of prevention messages across the network, as assessed by the content and extent of communication with network members about protective behaviors (condom use, partner concurrency/number of partners, HIV testing, engagement in HIV care, circumcision), HIV disclosure, and HIV stigma. Game Changers is innovative as it encompasses aspects of all major HIV prevention paradigms, targets advocacy to all network members rather than within and by specific risk groups, and uses social network data not only to evaluate effects but also strategically target advocacy. Findings will inform a larger R01 trial.
Project Number: 5R36MH111460-02
The 2.3 million persons living with HIV (PLH) in India are being offered access to anti-retroviral therapies (ARV) by the government. ARVs offer the possibility of improving the individual’s health and to reduce transmission by decreasing viral load. Yet, non-adherence remains high, typically around 50% (WHO, 2008). Mobile phones have been used in the US and globally to increase ARV adherence among PLH. As a low cost, easily diffused intervention strategy in a country such as India in which the mobile phone penetration rate is expected to reach 74% by 2013 and 101% by 2014 (Informa World, 2010), designing a mobile phone intervention to increase ARV adherence is a potentially highly efficacious intervention. In this proposal, we aim to adapt an existing mobile phone system for ARV adherence for PLH in India. However, because HIV is a chronic infectious disease, PLH are also challenged with maintaining mental health and reducing transmission risks (Swendeman et al., 2009a). Furthermore, reviews and meta-analyses have concluded that ARV adherence interventions are more effective when a comprehensive approach is adopted (Malta, 2008; Rueda, 2006; Simoni, 2006). In particular, mental health symptoms and transmission acts that co-occur with and undermine ARV adherence (Kalichman, 2008, Malta, 2008) are likely to be behaviors that may also be influenced by mobile phone delivered intervention.
This R21 aims to adapt and develop two versions of a mobile phone program to enhance medical adherence: 1) one aimed solely at increasing medication and appointment adherence; and 2) one aimed at increasing adherence, plus reducing mental health symptoms and transmission acts.
Three world-renowned HIV prevention and technology organizations will collaborate: 1) UCLA CHIPTS, with expertise in behavioral intervention development, adaptation, and randomized trials for PLH and other high risk populations; 2) Durbar, with expertise in multi-level prevention and support services for high risk populations in India; and 3) Dimagi Inc., a technology company with expertise in mobile phone solutions for global health challenges. Dimagi has developed “ARemind” to assess and remind ARV and appointment adherence with feedback from PLH and providers in the U.S. and tested in a pilot study and subsequent SBIR funded study. The software assesses and reminds PLH through text messaging (i.e. Simple Messaging Service [SMS]) or Interactive Voice Response (IVR) methods. This program can also be leveraged to address the co-morbid challenges of preventing transmission and improving mental health and quality of life for PLH. In this study, ARemind will be adapted and developed for PLH in Kolkata, India to address the co-morbid challenges of ARV adherence, transmission risk reduction, and poor mental health faced by PLH. ARemind will be adapted and developed for PLH recruited from two sites in Kolkata, India; 1) a community based care and treatment center operated by Durbar serving primarily female sex workers living with HIV (i.e., the Mamata Care & Treatment Center [MCTC]), and 2) PLH recruited from the primary ARV center in Kolkata operated by the Government of India.
In Phase 1 over Year 1, focus groups with PLH (n=10 from each site) and design meetings with the UCLA and Durbar research team and Dimagi programmers will identify acceptable and feasible enhancements to iteratively adapt and pilot test ARemind for PLH in India. In addition, the team will further develop the program into “ARemind Plus” to also address the co-occurring challenges of mental health and transmission risks for PLH. Dimagi will program adaptations, which will be iteratively pilot tested by research teams in Kolkata overseen by Durbar and trained by UCLA, with small groups of PLH (n=10 from each site).
In Phase 2, over Year 2, we will preliminarily evaluate the efficacy of the enhanced system with 400 PLH (n=200 from each site), with PLH randomized within site to ARemind Plus (n=100 each site) compared to ARemind for medication adherence only as standard care control (n=100 each site). PLH will be recruited with informed consent and complete a baseline and 3 follow-up interviews at 2-month intervals over 8 months to assess the impacts of ARemind compared to baseline adherence rates, and the impacts of ARemind Plus compared to ARemind for adherence only. ARemind for medical adherence will be the standard care control because ARemind and other electronic adherence reminders (e.g., beepers, pagers, timers) have already been established as improving ARV adherence. PLH will be provided with low cost mobile phones that cost about the same as one months supply of ARV medication in India (<$25), which could be a cost- effective strategy for eventual scale up. Both the choice of the standard care and mobile phone provision are warranted by values of distributive justice and ethical conduct of research. Finally, from months 22-24, we will collect post-intervention feedback from PLH and providers, conduct data analyses, and prepare ARemind for dissemination and subsequent field trials and adaptations in India.
Specific Aims:
Our aims are to:
1. Adapt the ARemind program for PLH in Kolkata, India;
2. Further develop ARemind to address factors the co-occurring factors of ARV non-adherence, poor mental health, and transmission risks;
3. Examine the acceptability, engagement, and adherence by PLH to the ARemind programs; and
4. Examine the efficacy of ARemind Plus compared to ARemind for medical adherence only to improve adherence and mental health, and reduce transmission risks, in a pilot randomized controlled trial.
Mobile Phone Adherence and Prevention Support for People Living with HIV in India - Research Plan