Addressing Stigma Through a Virtual Community for People Living with HIV: A Mixed Methods Study of the PositiveLinks Mobile Health Intervention

Abstract

Stigma has negative consequences for quality of life and HIV care outcomes. PositiveLinks is a mobile health intervention that includes a secure anonymous community message board (CMB). We investigated discussion of stigma and changes in stigma scores. Of 77 participants in our pilot, 63% were male, 49% Black, and 72% had incomes below the federal poverty level. Twenty-one percent of CMB posts (394/1834) contained stigma-related content including negative (experiencing stigma) and positive (overcoming stigma) posts addressing intrapersonal and interpersonal stigma. Higher baseline stigma was positively correlated with stress and negatively correlated with HIV care self-efficacy. 12-month data showed a trend toward more improved stigma scores for posters on the CMB versus non-posters (− 4.5 vs − 0.63) and for posters of stigma-related content versus other content (− 5.1 vs − 3.3). Preliminary evidence suggests that a supportive virtual community, accessed through a clinic-affiliated smartphone app, can help people living with HIV to address stigma.

Long term impact of PositiveLinks: Clinic-deployed mobile technology to improve engagement with HIV care

“…Two iterations of the PL app were used during this study: PL 1.0 (launched September 2013) and PL 2.0 (launched June 2016). Details of the development of PL 1.0 and its preliminary findings have been previously published, including a summary of early formative and pilot work and qualitative assessments of PL users and features [24][25][26][27][28]. PL 2.0 was developed as a result of feedback from usability interviews with PL participants ("members") and providers.…”

Digitized HIV/AIDS Treatment Adherence Interventions: A Review of Recent SMS/Texting Mobile Health Applications and Implications for Theory and Practice

“…The PositiveLinks application, used in both (Dillingham et al, 2018;Flickinger et al, 2018) studies, was tested with a cohort of 77 PLWH attending a rural, U.S. Ryan White-funded clinic. In the U.S., Ryan White funding supports HIV primary care for uninsured and underinsured patients.…”

“…SMS/texting was the modality for reminder messages, bi-directional communication between patient and providers, and bi-directional messages that elicited information to tailor the system. Flickinger et al (2018) was the second article to report on PositiveLinks, with a focus on the influence of the CMB on perceived HIV stigma. For the CMB, individuals participated anonymously-initiating new conversations or responding to older conversations.…”

“…PositiveLinks, reported by both Dillingham et al (2018) and Flickinger et al (2018), was designed for ease of accessibility to rural and vulnerable patients in the U.S. PositiveLinks accommodated low literacy levels and inconsistent or lack of mobile phone access by providing a free smartphone to all participants. A tutorial on app usage was provided as additional education, as well.…”

Beyond Interpretation: The Unmet Need for Linguistically and Culturally Competent Care for Latinx People Living with HIV in a Southern Region with a Low Density of Spanish Speakers

“…46 Virtual support groups that include peers living well with HIV can also provide examples of positive self-image to help others who may be struggling with internalized stigma. 47 Finally, while directly mentioned by only a handful of patients to be a barrier, immigration underpins many of the emerging themes. Immigration is one part of the intersectional stigma faced by this population.…”