Developing and Testing a Digital Health Tool for INterseCtional Stigma Assessment and Reduction at Multiple Levels and mUltiple DimEnsions (INCLUDE) to Improve HIV Care in ART Centers in Nepal
No applicable phase (e.g. observational)
Conditions:
HIV Care Loss to Followup
HIV Antiretroviral Therapy (ART) Adherence
HIV Stigma
Mental Health Conditions
Stigma
Intersectional Stigma
Gender Minority Individuals
Ethnic Minorities
Sponsor: Possible
trial.available_in:
БГ
Overview
People living with HIV (PLWH) have poor clinical outcomes when they are excluded from care due to intersectional stigma related to HIV, mental health (MH), and other dimensions. Recent studies and reviews have highlighted three major challenges in identifying and addressing intersectional stigma: a lack of stigma assessment strategies that are multi-dimensional and can be incorporated into routine clinical care, a lack of tailored stigma-reduction activities, and a lack of implementation of multi-level interventions. These gaps make it difficult to recognize and address intersectional stigma, leading to poor HIV care outcomes globally.
Digital health tools, co-designed with PLWH and healthcare workers (HCWs), have the potential to assist ART centers in addressing these challenges. Guided by the principles of human-centered design, our team has developed a digital tool with three components that can address the challenges in assessing, prioritizing, and addressing intersectional stigma in ART centers. The components include: 1) a dynamic assessment strategy that can be used during a clinic visit to collect both quantitative (i.e., ratings) and qualitative data (i.e., free text of client's perspectives) on stigma reported by PLWH; 2) a dashboard that incorporates this stigma assessment data alongside routine clinical data (i.e., existing registry of clients in the ART center) so that ART centers can directly link stigma with care engagement, and also identify relevant stigma-reduction activities; and 3) a repository of evidence-based, culturally appropriate activities that can reduce stigma at the intrapersonal-, interpersonal-, and clinic-levels.
The three components of the digital intervention are theoretically grounded and are based on prior studies and consultations with local partners. The study aims to assess the acceptability and feasibility of INCLUDE among clients, HCWs, and ART center leads in four ART centers. For this aim, we will conduct a pilot trial at four ART centers to assess the acceptability and feasibility of INCLUDE. If successful, this study will provide an intervention that can be incorporated into routine clinical practice to systematically identify and address intersectional stigma to improve HIV care, and can be tested in a cluster randomized trial with ART centers in Nepal and other regions that face similar challenges.
Description
Intersectional stigma is a pervasive barrier to care that disproportionately affects people living with HIV (PLWH) and leads to poor clinical outcomes. While the understanding of intersectional stigma is still evolving, it is based on intersectionality, a long-standing understanding that oppressive forces intersect to create and maintain inequity. A major challenge in achieving the 2025 UNAIDS 95-95-95 goals is the persistent intersectional stigma faced by PLWH who are marginalized and minoritized because of mental health (MH) problems, sexual and gender minority (SGM) status, race, and/or other dimensions. The relationship between these dimensions, intersectional stigma, and health outcomes is complex. Globally, key populations, who often face intersectional stigma, are more likely to become infected with HIV and less likely to initiate ART and achieve viral suppression. A 2021 systematic review found the prevalence of MH problems among PLWH to be 28-62%. Marginalized populations, who often face minority stress, are even more likely to report MH problems, which are associated with further (layered or intersecting) stigma and poor health outcomes. Therefore, addressing intersectional stigma is crucial for improving HIV outcomes and quality of life for PLWH.
The Nepali government's 2023 HIV report estimated there are 30,000 PLWH, 93% of whom are aware of their status, and 77% of those who were tested had initiated ART. However, only 54% of PLWH receiving ART had achieved viral load (VL) suppression, and this rate was low before the COVID pandemic as well: 47% in 2018 and 45% in 2019. These data highlight the importance of increasing HIV care engagement in Nepal. Although there is a lack of studies directly assessing intersectional stigma in Nepal, there is a high prevalence of stigma in the relevant dimensions of HIV, MH, SGM, and Dalit minoritized caste in Nepal. In a nationally representative 2022 study (N=927), stigma was highlighted as an important driver of poor care engagement and quality of life among Nepali PLWH. Prevalence of stigma and discrimination was high among SGMs (22-30%), with 19% reporting that health care workers (HCWs) were the source. Among PLWH who had interrupted ART in the last 12 months, 49% reported stigma as the main reason (e.g., fear of others finding out and poor treatment from HCWs). We have described the role of SGM stigma in worsening HIV outcomes in Nepal. The pervasiveness of MH stigma is well-documented in Nepal, including by our team, showing that HCWs have virtually no formal MH training and are often dismissive of people with MH problems. The importance of MH is further elevated because of the high rates of MH problems among PLWH both globally and in Nepal. Furthermore, because only 10% of people with MH problems receive any treatment at all, this allows MH problems to persist. As such, consistent with the goals of this study, there is an urgent need to develop and test interventions that address stigma fro
Who can participate
There are two groups of study participants: people living with HIV (PLWH) and healthcare workers (HCWs) in ART centers (clinics for HIV treatment) in Nepal.
1. Inclusion Criteria for PLWH:
* PLWH with poor HIV outcomes (a. been in care for more than 6 months but with detectable VL; b. missed clinic visit by more than a month; and/or c. did not pick up medications for more than 2 weeks from the expected refill date);
* age ≥18;
* screening positive for having mental health conditions (with the Generalized Anxiety-7 and Patient Health Questionnaire-9 screening tools); and
* living in the ART (Anti-Retroviral Therapy) center's catchment area with no plans to leave during the study period.
* Sexual and Gender Minorities and/or Ethnic Minorities. Participants will be drawn randomly from this list, stratified by having additional stigma dimension(s) vs. not.
2. Exclusion Criteria for PLWH:
* presence of significant cognitive problems/disability precluding participation
3. Inclusion Criteria for HCWs:
* All HCWs of ART centers: HIV counselors, ART center leads, and other HCWs.