Addressing trust through digitally enabled community engagement approaches in HIV/AIDS

Relational Community Engagement project Addressing trust through digitally enabled community engagement approaches in HIV/AIDS This case study was one of four country projects in the WHO Community Engagement Research Initiative, a multi-country effort that aimed to design, implement and research relationship-focused community engagement interventions in COVID-19 response and recovery efforts. Location Banteay Meanchey, Kandal and Phnom Penh, Cambodia Organization(s) • University of Health Sciences • National Center for HIV/AIDS Dermatology and STDs (NCHADS) of the Ministry of Health • WHO Cambodia Date 2020–2022 (pilot project) 2023–present (exploring options to scale pilot programme to additional sites) Focus Area HIV/AIDS Community Engagement Approach Prototyping and integrating relationship- building interventions within a digital health solution to improve HIV/AIDS access, treatment and retention during the COVID-19 pandemic. The coronavirus disease (COVID-19) pandemic caused severe disruptions in HIV/AIDS programming and service delivery, negatively impacting Cambodia’s target of eliminating HIV/AIDS by 2025. The HIV care delivery model in Cambodia is based on the implementation of the Community Action Approach (CAA), a framework that has been used since 2017 to improve access, linkage and retention of patients to comprehensive HIV care. Successful implementation of the CAA framework relies on the coordination and collaboration among multiple stakeholders across various levels of the HIV care and health system. Given the nature of HIV/AIDS and the associated real or perceived stigmatization of people living with HIV/AIDS (PLWH), the Cambodia research team was particularly concerned about the disruption of access to antiretroviral therapy (ART) and loss to follow-up due to measures and restrictions in response to the pandemic. For example, HIV care providers were forced to reduce in-person meetings with patients, and in some cases, health providers completely lost contact with their patients. Similarly, patients complained of missing regular in-person meetings and talking sessions with their doctors and counsellors. Consequently, the focus of implementation research for the Cambodia team was to revisit the CAA framework and explore ways to maintain close relationships between HIV service providers and their patients. Background and context © WHO / Ourng Sam Ang University of Health Sciences researchers work together to analyse data from their community engagement research project. Prior to the pandemic, the University of Health Sciences and NCHADS had been considering introducing digital technology to support HIV care delivery. The community engagement research initiative therefore came at a timely moment for exploration of what kinds of community engagement interventions could facilitate the successful introduction and adoption of a digital health intervention (DHI). It also presented an opportunity to build connection and trust between care providers and PLWH. The DHI was designed as a case-control study across eight ART research sites (four case and four control) and targeted four groups of stakeholders:(1) medical staff at four out of eight ART research sites, (2) non-medical personnel at four out of eight ART research sites (including counsellors and community workers), (3) individuals and groups affected by HIV, and (4) persons at the managerial level of NCHADS and support organizations. As an applied research study targeted at those most vulnerable during the pandemic, the DHI intervention sites were selected due to their relatively high rates of loss of access and loss of retention of HIV treatment care during the early s tages of the pandemic in 2020. © WHO / Ourng Sam Ang Patients coming in for consultation at the National Clinic for AIDS, Dermatology and STD building in Phnom Penh. The community engagement intervention The research process included: 1. Quantitative analysis of the NCHADS HIV database. 2. Qualitative interviews with stakeholders, including PLWH and front-line health-care providers. 3. Participatory communication and trust-building workshops. 4. Ongoing sense-making and iterative learning within the research teams as well as with a larger group of participating countries and members of the community engagement research initiative. The DHI served to restore/maintain relationships and bonds that had been disrupted by the pandemic and involved: • Provision of tablet devices with prepaid mobile internet plans This facilitated the use of social media platforms such Facebook Messenger, WhatsApp and Telegram as tools for maintaining communication and bonds, and to build trust between health-care providers and PLWH during the COVID-19 pandemic. The DHI complemented in-person care with virtual care experiences. • Training health providers to improve trust and relationships Health-care providers were specifically trained on how to improve trust and build relationships in online virtual settings to help improve patients’ virtual experiences of care, including how to improve the virtual experiences of health care. Four online training sessions were organized for care providers at intervention sites. • Feedback workshops These sessions allowed community members and other stakeholders to voice their feelings about and offer suggestions for improving the acceptability of the DHI’s quality of patient care, as well as their insights on how they and their patients handled or coped with the virtual HIV care experiences. Two feedback sessions were organized for all four intervention sites. The first feedback session was in the first week of July 2021 (before the training sessions on trust and relationship building were conducted) and the second in the second week of August 2021 (post-training sessions on trust and relationship building). While the first feedback session focused on overall assessment of the DHI, the second feedback session asked participants additional questions on the relational aspects of the intervention package. Feedback sessions with care providers and community engagement experts were conducted via Zoom, whereas Telegram voice group chats were conducted with the patients, as the Telegram platform was more intuitive for most patients, according to care providers. Outcomes and results In Cambodia, researchers documented enhanced relationships between health-care providers and PLWH, with informal digital interactions supporting enhanced communication. Moreover, loss of retention of PLWH in HIV treatment care centres fell significantly from 2.8% to 0.6% in the higher-risk intervention group just two months post intervention (compared to a drop from 0.9% to 0.7% in the control group). The research was conducted in eight ART sites, four of which were located in Phnom Penh and the remaining four in the provinces of Banteay Meanchey and Kandal. The study population for the research comprised health-care providers and HIV patients from the eight selected ART sites; high-level stakeholders that included policy-makers, directors and vice- directors of the National Center for HIV/AIDS Dermatology and STDs (NCHADS) of the Ministry of Health; and representatives of support organizations such as the United Nations Joint Programme on HIV/AIDS (UNAIDS), World Health Organization (WHO), AIDS Healthcare Foundation (AHF) and Catholic Relief Services (CRS). © WHO / Ourng Sam Ang Doctor explains to a patient how to take their medication at the National Clinic for AIDS, Dermatology and STD building in Phnom Penh. WPR/2023/DSI/003 © World Health Organization 2023 Some rights reserved. This work is available under the CC BY-NC 3.0 IGO license. Lessons learned • The implementation research confirms the feasibility of using DHIs for linking PLWH to HIV care teams, retaining them in HIV care and using technology combined with community engagement interventions to enhance or maintain trusting bonds and relationships between health-care providers and patients within the context of physical distancing and reduced in-person meetings due to COVID-19. This finding led to a recommendation to adopt DHI as a key feature of the current CAA for engaging patients in HIV care and support. • Some PLWH felt more open and more comfortable discussing health-related concerns through DHIs compared to in-person conversations with health staff because they preferred not being in the same room during these discussions. • Having a multidisciplinary research team with local leadership positively impacted the research, as this increased diversity and helped in identifying gaps and new opportunities. • The study’s integration of qualitative data combined with working with community engagement specialists to design and facilitate interactive and reflective processes led to the sharing of significant learnings among local, national and global public health stakeholders. This contributed to the application of emergent, participatory research methods driven by inquiry rather than hypothesis validation, and an emerging body of knowledge and practice for understanding how and why community engagement works. Next steps Building on the lessons learned from this project, the Cambodia team is further updating, deepening and expanding their intervention package to include clinical, technological, programmatic and relational dimensions in an integrated community engagement technical package. This expansion of the intervention package and its activities to other ART sites aims to further enhance the quality of communication, trust and relationship between DHI users (care providers and patients) through the complementary use of digital solutions whose benefits can potentially outlast the pandemic. The provision of DHI across other selected ART sites is not meant to replace the in-person format of provider–patient meetings, but rather is meant to maintain their “meeting” in the context of physically restricted measures, such as the current pandemic, or when in-person meetings are too cumbersome (for example, for patients who live too far away). The research team are working with several partners to examine the possibility of: (1) scaling DHI usage and the relational community engagement training across additional ART sites, and (2) improving the quality of the interaction between patients and health-care providers across selected ART sites to strengthen community trust and confidence.