information behaviors and engagement along the HIV prevention and care continua

HIV/AIDS information is a critical resource for people living with HIV (PLWH) and people at high-risk for HIV infection. Assessing and managing the risk of acquiring or transmitting HIV requires the acquisition and successful application of HIV/AIDS information. While possessing HIV/AIDS information does not automatically lead to health behavior change, individuals must be informed before they are motivated and equipped with the skills to perform HIV protective and risk reduction behaviors to effectively reduce their risk. The rapid expansion of technologies provides a tremendous opportunity for delivering tailored HIV/AIDS information, and promoting engagement in HIV protective and risk reduction behaviors. However, we do not currently know how and why young, Black gay and bisexual men (YBGBM), the population who experiences a disproportionate burden of HIV infection in the United States (US), acquire and apply HIV/AIDS information, or how technologies affect their access to this information. This dissertation uses a community-based participatory research approach to investigate how and why YBGBM (ages 18-34) living in the state of North Carolina acquire and apply HIV/AIDS information, and factors which motivate or deter their adoption of HIV protective and risk reduction behaviors. Eighty-three YBGBM completed an online, self-administered survey, and twenty-two survey respondents participated in semi-structured interviews to elaborate on results obtained from the survey. Overall, study participants acquired (intentionally and unintentionally) HIV/AIDS information through the Internet using mobile devices, (especially through social media sites and geospatial dating applications), their social networks, and healthcare providers. Participants sought HIV/AIDS information to manage and assess their overall sexual health, to inform patient-doctor communication, and to gain a better understanding of HIV prevention and care options. Participants applied the information they acquired by adopting HIV protective and risk reduction behaviors, to share information within their online and offline social networks to combat misinformation, and to share/exchange information with peers to assist them in making decisions about the adoption of HIV protective and risk reduction behaviors. The study found that HIV/AIDS information from a doctor/healthcare provider or from a peer living with HIV and/or with first-hand experience adopting HIV protective and risk reduction behaviors were deemed to be the most trustworthy sources of information. Serodiscordant romantic relationships were common among the study sample, and being in a serodiscordant relationship was the primary motivator for pre-exposure prophylaxis use among HIV-negative participants. Overwhelmingly, the top motivators for utilizing HIV/STI screening were peer support, increased access, and health anxiety. The main deterrents to the utilization of HIV/STI screening services were fear of knowing HIV serostatus, being in a monogamous relationship, and intersectional stigma. The findings presented in this dissertation add to our understanding of the information behaviors of a population traditionally understudied in the field of information, factors which motivate or deter their engagement in the continua of HIV prevention and care, and has practical implications for healthcare providers, public health interventionists, and designers of health information technologies.Doctor of Philosoph

Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy

Background: Alpha-gal food allergy is a life-threatening, newly discovered condition with limited presence in authoritative information sources. Sufferers seeking diagnosis are likely to encounter clinicians unfamiliar with the condition. Objective: To understand information practices of individuals diagnosed with alpha-gal allergy, how they obtained diagnosis, and their perceptions of health-care providers? awareness of the condition. Methods: Semistructured interviews with open- and closed-ended questions were completed with a chronological systematic sample of 28 adults (11% of alpha-gal clinic patients at the time) diagnosed with alpha-gal allergy and treated at University of North Carolina Allergy and Immunology Clinic. Results: The majority of patients determined they had alpha-gal allergy through nontraditional health information channels. Three-quarters of patients rated their primary care provider as having little to no knowledge. In 25 specialists' encounters, 23 were rated as having little to no knowledge. Conclusion: With new conditions, information is often available through informal networks before appearing in the vetted medical literature. In this study, social connections were the primary pathway to successful diagnosis. Health practitioners need to develop mechanisms to understand that process

Recommendations for design of a mobile application to support management of anxiety and depression among Black American women

Black American women experience adverse health outcomes due to anxiety and depression. They face systemic barriers to accessing culturally appropriate mental health care leading to the underutilization of mental health services and resources. Mobile technology can be leveraged to increase access to culturally relevant resources, however, the specific needs and preferences that Black women feel are useful in an app to support management of anxiety and depression are rarely reflected in existing digital health tools. This study aims to assess what types of content, features, and important considerations should be included in the design of a mobile app tailored to support management of anxiety and depression among Black women. Focus groups were conducted with 20 women (mean age 36.6 years, SD 17.8 years), with 5 participants per group. Focus groups were led by a moderator, with notetaker present, using an interview guide to discuss topics, such as participants' attitudes and perceptions towards mental health and use of mental health services, and content, features, and concerns for design of a mobile app to support management of anxiety and depression. Descriptive qualitative content analysis was conducted. Recommendations for content were either informational (e.g., information to find a Black woman therapist) or inspirational (e.g., encouraging stories about overcoming adversity). Suggested features allow users to monitor their progress, practice healthy coping techniques, and connect with others. The importance of feeling “a sense of community” was emphasized. Transparency about who created and owns the app, and how users' data will be used and protected was recommended to establish trust. The findings from this study were consistent with previous literature which highlighted the need for educational, psychotherapy, and personal development components for mental health apps. There has been exponential growth in the digital mental health space due to the COVID-19 pandemic; however, a one-size-fits-all approach may lead to more options but continued disparity in receiving mental health care. Designing a mental health app for and with Black women may help to advance digital health equity by providing a tool that addresses their specific needs and preferences, and increase engagement

The influence of socio-technical environments on the information behaviors and HIV risk reduction behaviors of Black gay men

Young Black men who have sex with men (YBMSM) are disproportionately affected by the HIV epidemic in the United States. YBMSM have a one in two chance of becoming infected during their lifetime compared with one in five among Latino MSM, and one in eleven among White MSM (Hess et al, 2017). HIV/STI information is a critical resource for YBMSM affected by the HIV epidemic. Recent studies suggest that telehealth modalities are opportune for delivering tailored, culturally-sensitive HIV/STI prevention and treatment information. Telehealth modalities, including smartphone applications, offer the opportunity to reach YBMSM who may be difficult to access by traditional means such as in-person, venue-based interventions. To improve our understanding of the potential efficacy of disseminating HIV/STI information via technology-based HIV/STI interventions among YBMSM, this study investigates how and where they access and interact with HIV/STI information. An online survey (n=74) and semistructured, in-depth interviews were carried out with 22 YBMSM (ages 18-34) living in the state of North Carolina

The influence of socio-technical environments on the information behaviors and HIV risk reduction behaviors of Black gay men

Young Black men who have sex with men (YBMSM) are disproportionately affected by the HIV epidemic in the United States. YBMSM have a one in two chance of becoming infected during their lifetime compared with one in five among Latino MSM, and one in eleven among White MSM (Hess et al, 2017). HIV/STI information is a critical resource for YBMSM affected by the HIV epidemic. Recent studies suggest that telehealth modalities are opportune for delivering tailored, culturally-sensitive HIV/STI prevention and treatment information. Telehealth modalities, including smartphone applications, offer the opportunity to reach YBMSM who may be difficult to access by traditional means such as in-person, venue-based interventions. To improve our understanding of the potential efficacy of disseminating HIV/STI information via technology-based HIV/STI interventions among YBMSM, this study investigates how and where they access and interact with HIV/STI information. An online survey (n=74) and semistructured, in-depth interviews were carried out with 22 YBMSM (ages 18-34) living in the state of North Carolina

Prefigurative Information Politics: Strategies for Survival, Resilience, and Liberation

Invited lecture as part of the Srygley Lecture series at Florida State University, presented February 24, 2021. Description of model in progress, coauthored with Megan Threats. "What would it really mean for LIS to decenter institutions, capital, ableism, and whiteness, and resituate our examination of the information practices and structures of people who are marginalized in the United States? The information worlds and lives of Black and Brown people are rich and complex, but much of LIS research with these communities is limited to points of "need" and deficit. Dr. Gibson will highlight research that engages with information and data and communities of color, talk about some of her own work in community health and education, and discuss frameworks for moving forward within LIS.