16 research outputs found

    HIV prevention and HIV care among transgender and gender diverse youth: design and implementation of a multisite mixed-methods study protocol in the U.S.

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    Abstract Background In the U.S., transgender and gender diverse (TGD) populations face structural, interpersonal, and individual barriers to healthcare. Less is known, however, about the HIV prevention and treatment experiences of TGD youth in the U.S. The current study was developed to fill this research gap. Methods This article describes the research protocol for a multi-site, U.S.-based mixed-methods study that sought to identify the multi-level facilitators and barriers that influence participation of TGD youth in various stages of the HIV prevention (e.g., pre-exposure prophylaxis uptake) and care continua. A sample of diverse TGD youth ages 16–24 was recruited from 14 U.S. sites. TGD youth participants completed a one-time, in-person visit that included an informed consent process, computer-based quantitative survey, and in-depth qualitative interview assessing experiences accessing HIV prevention and/or care services. Providers serving TGD youth were recruited from the same 14 sites and completed a one-time visit via phone that included informed consent, demographic questionnaire, and in-depth qualitative interview assessing their experiences providing HIV prevention or treatment services to TGD youth. Results Overall, 186 TGD youth ages 16–24 and 59 providers serving TGD youth were recruited and enrolled from across the 14 U.S. sites. TGD youth participants had a mean age of 20.69; 77.3% youth of color; 59.7% trans-feminine; 15.5% trans-masculine; 24.9% non-binary; 53.6% family income under poverty level. Providers included medical and mental health providers as well as case manager/care coordinators, HIV test counselors, and health educators/outreach workers. Providers were 81.3% cisgender and 30.5% people of color. Successes with community-engagement strategies and gender-affirming research methods are reported. Conclusions This study addresses critical gaps in current knowledge about the HIV prevention and care experiences of TGD youth. Findings have implications for the development of HIV interventions across levels to support the health and well-being of TGD youth. Future research is warranted to replicate and expand on lessons learned regarding recruitment and engagement of communities of TGD youth, including longitudinal designs to assess engagement across their developmental stages. Lessons learned working with TGD youth through developing and implementing the study protocol are shared. Trial registration Registered on ClinicalTrials.gov on 05/20/2015 (NCT02449629).https://deepblue.lib.umich.edu/bitstream/2027.42/152132/1/12889_2019_Article_7605.pd

    Factors Associated with the Health-Related Self-Care Capacity of Overweight and Obese People

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    This study aimed to investigate the relationship between beliefs about obese people and health-related self-care among overweight and obese people, considering sociodemographic aspects. This study adopted a cross-sectional design. The sample consisted of 207 participants selected through a simple random sampling method. The “Beliefs About Obese Persons Scale” (BAOP) and the “Self-Care Agency Rating Scale-Revised” (ASA-R) questionnaires were applied to data collection. The results showed that 82.6% believed that obesity is a condition the individual cannot control, and 74.4% expressed inadequate self-care regarding their health. A multivariate analysis found that belonging to the adult age group increases the probability of presenting adequate health-related self-care by 4.7 times (95% CI = 1.892–11.790) compared to older adults. The belief that obesity is an uncontrollable condition increases the probability of inadequate self-care by 6.3 times (95% CI = 2.360–16.924), in contrast to the perception that it is a controllable condition. Moreover, overweight people are 0.139 times (95% CI = 0.044–0.443) less likely to have adequate self-care compared to people with obesity. In conclusion, being an adult and having the belief that obesity is a condition that can be controlled is associated with adequate health-related self-care, while being overweight is associated with inadequate health care

    The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States

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    Abstract Introduction Decisions to disclose HIV serostatus may be complicated by internalised HIV stigma. We evaluated the association of internalised HIV stigma in biological mothers living with HIV with disclosure of their serostatus to their children perinatally HIV‐exposed but uninfected (CHEU). Methods Mothers and their CHEU were enrolled in the United States (U.S.)‐based Surveillance Monitoring for Antiretroviral Therapy (ART) Toxicities (SMARTT) study of the Pediatric HIV/AIDS Cohort Study (PHACS), a longitudinal study of outcomes related to in utero exposure to HIV and ART among CHEU. Mothers completing at least one stigma and disclosure assessment starting at the child's age 11‐, 13‐, 15‐ and/or 17‐year study visits between 16 August 2016 and 1 October 2020 were eligible. Stigma was measured with the 28‐item Internalised HIV Stigma Scale (IHSS). Mean stigma scores were linearly transformed to a range of 0–100, with higher scores indicating greater levels of stigma. At each visit, mothers were asked if their child was aware of their HIV diagnosis and at what age the child became aware. The Kaplan‐Meier estimator evaluated the cumulative probability of disclosure at each child age. Logistic regression models with generalised estimating equations to account for repeated measures were fit to examine the association between stigma and disclosure, controlling for relevant socio‐demographic variables. Results Included were 438 mothers of 576 children (mean age 41.5 years, 60% U.S.‐born, 60% Black/African American and 37% with household income ≤$10,000). The prevalence of disclosure across all visits was 29%. Mothers whose children were aware versus not aware of their serostatus reported lower mean IHSS scores (38.2 vs. 45.6, respectively). The cumulative proportion of disclosure by age 11 was 18.4% (95% CI: 15.5%, 21.8%) and 41% by age 17 (95% CI: 35.2%, 47.4%). At all child ages, disclosure was higher among children of U.S.‐born versus non‐U.S.‐born mothers. After adjusting for age, marital status and years since HIV diagnosis, higher IHSS scores were associated with lower odds of disclosure (OR = 0.985, 95% CI: 0.975, 0.995). Conclusions Providing support to women as they make decisions about serostatus disclosure to their children may entail addressing internalised HIV stigma and consideration of community‐level factors, particularly for non‐U.S.‐born mothers

    Digital Health Implementation Strategies Coproduced With Adults With Acquired Brain Injury, Their Close Others, and Clinicians: Mixed Methods Study With Collaborative Autoethnography and Network Analysis

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    BackgroundAcquired brain injuries (ABIs), such as stroke and traumatic brain injury, commonly cause cognitive-communication disorders, in which underlying cognitive difficulties also impair communication. As communication is an exchange with others, close others such as family and friends also experience the impact of cognitive-communication impairment. It is therefore an internationally recommended best practice for speech-language pathologists to provide communication support to both people with ABI and the people who communicate with them. Current research also identifies a need for neurorehabilitation professionals to support digital communication, such as social media use, after ABI. However, with >135 million people worldwide affected by ABI, alternate and supplementary service delivery models are needed to meet these communication needs. The “Social Brain Toolkit” is a novel suite of 3 interventions to deliver communication rehabilitation via the internet. However, digital health implementation is complex, and minimal guidance exists for ABI. ObjectiveThis study aimed to support the implementation of the Social Brain Toolkit by coproducing implementation knowledge with people with ABI, people who communicate with people with ABI, clinicians, and leaders in digital health implementation. MethodsA maximum variation sample (N=35) of individuals with living experience of ABI, close others, clinicians, and digital health implementation leaders participated in an explanatory sequential mixed methods design. Stakeholders quantitatively prioritized 4 of the 7 theoretical domains of the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework as being the most important for Social Brain Toolkit implementation. Qualitative interview and focus group data collection focused on these 4 domains. Data were deductively analyzed against the NASSS framework with stakeholder coauthors to determine implementation considerations and strategies. A collaborative autoethnography of the research was conducted. Interrelationships between considerations and strategies were identified through a post hoc network analysis. ResultsAcross the 4 prioritized domains of “condition,” “technology,” “value proposition,” and “adopters,” 48 digital health implementation considerations and 52 tailored developer and clinician implementation strategies were generated. Benefits and challenges of coproduction were identified. The post hoc network analysis revealed 172 unique relationships between the identified implementation considerations and strategies, with user and persona testing and responsive design identified as the potentially most impactful strategies. ConclusionsPeople with ABI, close others, clinicians, and digital health leaders coproduced new knowledge of digital health implementation considerations for adults with ABI and the people who communicate with them, as well as tailored implementation strategies. Complexity-informed network analyses offered a data-driven method to identify the 2 most potentially impactful strategies. Although the study was limited by a focus on 4 NASSS domains and the underrepresentation of certain demographics, the wealth of actionable implementation knowledge produced supports future coproduction of implementation research with mutually beneficial outcomes for stakeholders and researchers. International Registered Report Identifier (IRRID)RR2-10.2196/3508

    Detecting Salivary Host and Microbiome RNA Signature for Aiding Diagnosis of Oral and Throat Cancer

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    OBJECTIVE: Oral squamous cell carcinoma (OSCC) and oropharyngeal squamous cell carcinoma (OPSCC) can go undetected resulting in late detection and poor outcomes. We describe the development and validation of CancerDetect for Oral & Throat cancer™ (CDOT), to detect markers of OSCC and/or OPSCC within a high-risk population. MATERIAL AND METHODS: We collected saliva samples from 1,175 individuals who were 50 years or older, or adults with a tobacco use history. 945 of those were used to train a classifier using machine learning methods, resulting in a salivary microbial and human metatranscriptomic signature. The classifier was then independently validated on the 230 remaining samples prospectively collected and unseen by the classifier, consisting of 20 OSCC (all stages), 76 OPSCC (all stages), and 134 negatives (including 14 pre-malignant). RESULTS: On the validation cohort, the specificity of the CDOT test was 94 %, sensitivity was 90 % for participants with OSCC, and 84.2 % for participants with OPSCC. Similar classification results were observed among people in early stage (stages I & II) vs late stage (stages III & IV). CONCLUSIONS: CDOT is a non-invasive test that can be easily administered in dentist offices, primary care centres and specialised cancer clinics for early detection of OPSCC and OSCC. This test, having received FDA\u27s breakthrough designation for accelerated review, has the potential to enable early diagnosis, saving lives and significantly reducing healthcare expenditure

    The salivary metatranscriptome as an accurate diagnostic indicator of oral cancer

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    Despite advances in cancer treatment, the 5-year mortality rate for oral cancers (OC) is 40%, mainly due to the lack of early diagnostics. To advance early diagnostics for high-risk and average-risk populations, we developed and evaluated machine-learning (ML) classifiers using metatranscriptomic data from saliva samples (n = 433) collected from oral premalignant disorders (OPMD), OC patients (n = 71) and normal controls (n = 171). Our diagnostic classifiers yielded a receiver operating characteristics (ROC) area under the curve (AUC) up to 0.9, sensitivity up to 83% (92.3% for stage 1 cancer) and specificity up to 97.9%. Our metatranscriptomic signature incorporates both taxonomic and functional microbiome features, and reveals a number of taxa and functional pathways associated with OC. We demonstrate the potential clinical utility of an AI/ML model for diagnosing OC early, opening a new era of non-invasive diagnostics, enabling early intervention and improved patient outcomes.</p
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