The Social, Mental, and Physical Health Impacts of the COVID-19 Pandemic on People With HIV: Protocol of an Observational International Multisite Study.

ABSTRACT: As the COVID-19 pandemic spread across the world, immunocompromised individuals such as people with HIV (PWH) may have faced a disproportionate impact on their health and HIV outcomes, both from COVID-19 and from the strategies enacted to contain it. Based on the SPIRIT guidelines, we describe the protocol for an international multisite observational study being conducted by The International Nursing Network for HIV Research, with the Coordinating Center based at the University of California, San Francisco (UCSF) School of Nursing. Site Principal Investigators implement a standardized protocol to recruit PWH to complete the study online or in-person. Questions address demographics; HIV continuum of care indicators; mental and social health; COVID-19 and vaccination knowledge, attitudes, behaviors, and fears; and overall outcomes. Results of this study will contribute to knowledge that can inform responses to future public health crises to minimize their impacts on vulnerable populations such as PWH.

Collaborative engagement of Hispanic communities in the planning, conducting, and dissemination of assistive technology research.

INTRODUCTION: Community engagement (CE) is critical for research on the adoption and use of assistive technology (AT) in many populations living in resource-limited environments. Few studies have described the process that was used for engaging communities in AT research, particularly within low-income communities of older Hispanic with disabilities where limited access, culture, and mistrust must be navigated. We aimed to identify effective practices to enhance CE of low-income Hispanic communities in AT research. METHODS: The community stakeholders included community-based organizations, the community healthcare clinic, the local AT project, and residents of the Caño Martín Peña Community in San Juan, Puerto Rico. The CE procedures and activities during the Planning the Study Phase comprised working group meetings with stakeholders to cocreate the funding proposal for the study and address the reviewers' critiques. During the Conducting the Study Phase, we convened a Community Advisory Board to assist in the implementation of the study. During the Disseminating the Study Results Phase, we developed and implemented plans to disseminate the research results. RESULTS: We identified seven distinct practices to enhance CE in AT research with Hispanic communities: (1) early and continuous input; (2) building trusting and warm relationships through personal connections; (3) establishing and maintaining presence in the community; (4) power sharing; (5) shared language; (6) ongoing mentorship and support to community members; and (7) adapting to the changing needs of the community. CONCLUSION: Greater attention to CE practices may improve the effectiveness and sustainability of AT research with low-income communities.

A multinational qualitative investigation of the perspectives and drivers of exercise and dietary behaviors in people living with HIV.

Globally, people living with HIV (PLWH) are at remarkably high risk for developing chronic comorbidities. While exercise and healthy eating reduce and mitigate chronic comorbidites, PLWH like many others, often fail to engage in recommended levels. We qualitatively examined the perspectives and contextual drivers of diet and exercise reported by PLWH and their health care providers. Two hundred and six participants across eight sites in the United States, Puerto Rico and Botswana described one overarching theme, Arranging Priorities, and four subthemes Defining Health, Perceived Importance of Diet and Exercise, Competing Needs, and Provider Influence. People living with HIV and their health care providers recognize the importance of eating a healthy diet and engaging in regular exercise. Yet there are HIV-specific factors limiting these behaviors that should be addressed. Health care providers have an important, and often underutilized opportunity to support PLWH to make improvements to their exercise and diet behavior.

Language and Culture in Health Literacy for People Living with HIV: Perspectives of Health Care Providers and Professional Care Team Members.

Low health literacy has been linked to inadequate engagement in care and may serve as a contributor to poor health outcomes among people living with HIV and AIDS. The purpose of this paper was to examine the perspectives of health care providers and professional care team members regarding health literacy in HIV disease. A secondary data analysis was conducted from a qualitative study aimed at understanding factors that help an HIV positive person to manage their HIV disease. Data were collected from sites in Botswana, the US, and Puerto Rico. In the parent study, data were collected through focus group discussions with 135 people living with HIV, 32 HIV health care providers (HCPs), and 39 HIV professional care team members (PCTMs). SPSS was used to analyze quantitative data while ATLAS.ti was used to analyze qualitative data. The findings from analyses of the perspectives of HCPs/PCTMs suggested that linguistic and cultural factors were important themes in the exchange of HIV information between health care providers and PLHIV. These themes included ineffective communication, health seeking behavior, cultural facilitators, and complementary and alternative/traditional healing methods. Thus, this study suggests that language and culture have a major role in health literacy for PLHIV.

Building Trust and Relationships Between Patients and Providers: An Essential Complement to Health Literacy in HIV Care.

Health literacy is important for access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient-provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n = 135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient-provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care.

Internal consistency of the Spanish health literacy test (TOFHLA-SPR) for Puerto Rico.

BACKGROUND: Low functional health literacy has been related to poor viral control, and lower levels of ART adherence in people living with HIV/AIDS. Research in functional health literacy among people living with HIV/AIDS in Puerto Rico (PR) is an unexplored area. The purpose of this paper is to describe how the full-length Spanish Version of the Test of Functional Health Literacy in Adults (TOFHLA-S) scale was adapted to PR. METHODS: Thirty participants (women = 16, men = 14) completed a basic demographic questionnaire, the TOFHLA-S and participated in an interview. Analyses were performed to examine the information provided by participants and the internal consistency of the TOFHLA-S. RESULTS: The mean age was 47.7 years (range 34-77). Thirty-seven percent had less than 12 years of formal schooling and 43% reported having education above high school. Changes suggested by participants included: increasing font size from 14 to 16 points for better readability and changes/simplification of several words in order to make them colloquial and comprehensible for the PR context. The reliability coefficient obtained for this scale was strong (estimated alpha = 0.95) however, differences were observed by subtype: numeracy (estimated alpha(num) = .819 vs. comprehension (estimated alpha =. 953). CONCLUSIONS: Based on this process, we have adapted the original version of the TOFHLA-S and the new version of the full-length TOFHLA-S, PR is now valid for further research and testing levels of functional health literacy in a larger sample in PR.

A Qualitative Study of Providers' Perception of Adherence of Women Living with HIV/AIDS in Puerto Rico.

This study examines healthcare providers' perceptions regarding experiences and factors that contribute to adherent and non-adherent behaviors to HIV treatment among women living with HIV infection in Puerto Rico and describes strategies implemented to improve adherence. Providers' accounts revealed that women with HIV infection are living "beyond their strengths" attempting to reconcile the burden of the illness and keep adherent. Factors putting women beyond their strengths and influencing non-adherence behavior were: gender-related demands, fear of disclosure, and treatment complexity. Strategies to improve adherence included: ongoing assessment, education, collaborative work, support groups, networking, disguising pills, readiness, and seeking medications outside their towns. Provider-patient interactions are critical for women's success and must assess all these factors in developing and providing health services.

Symptoms and quality of life of people living with HIV infection in Puerto Rico.

BACKGROUND: People living with HIV infection are confronted with physical and psychological symptoms that impact their quality of life. This study explored the symptom experience of people living with HIV infection in Puerto Rico and its correlation with quality of life. METHODS: A cross-sectional descriptive design was used to survey 44 men, women, and transgender people living with HIV infection. Measures included a demographic questionnaire, sign and symptom checklist, and a quality of life instrument. RESULTS: The sample was 50% male with a mean age of 42.1 years; the participants had been living with HIV infection an average for 9.8 years. The top five symptoms reported by the sample included: muscle aches (81.8%), depression (77.2%), weakness (70.5%), fear/worries (70.5), and difficulty concentrating (65.9%). Symptom frequency was significantly related to four dimensions of quality of life: overall function (r = -0.58), life satisfaction (r = -0.59), health worries (r = 0.32) and HIV medication worries (r = 0.59). The symptom experience was not related to financial worries, disclosure worries, or sexual functioning. Individuals who reported taking HIV medications reported significantly fewer symptoms than those not taking HIV medications (t = 3.061, df=42, p < 0.01). CONCLUSIONS: These results suggest that people living with HIV infection in Puerto Rico experience a wide array of physical and psychological symptoms and that these symptoms have a correlation with their perceived quality of life. Better management of symptoms may have an impact on perceived quality of life for people living with HIV infection.