Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives.

There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive-deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child's progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience.

Evaluating the Feasibility and Acceptability of a Digital Pre-Exposure Prophylaxis Navigation and Activation Intervention for Racially and Ethnically Diverse Sexual and Gender Minority Youth (PrEPresent): Protocol for a Pilot Randomized Controlled Trial.

BACKGROUND: To end the HIV epidemic by 2030, we must double down on efforts to tailor prevention interventions to both young men who have sex with men and transgender and nonbinary youth. There is an urgent need for interventions that specifically focus on pre-exposure prophylaxis (PrEP) uptake in sexual and gender minority youth (SGMY) populations. There are several factors that impact the ability of SGMY to successfully engage in the HIV prevention continuum, including uptake of PrEP. Patient activation, having the knowledge, skills, and self-efficacy to manage one's health, is an important indicator of willingness and ability to manage one's own health and care autonomously. Patient navigation also plays an important role in helping SGMY access PrEP and PrEP care, as navigators help guide patients through the health care system, set up medical appointments, and get financial, legal, and social support. OBJECTIVE: This study aims to evaluate the feasibility and acceptability of a digital PrEP navigation and activation intervention among a racially and ethnically diverse sample of SGMY living in the Los Angeles area. METHODS: In phase 1, we will conduct formative research to inform the development of PrEPresent using qualitative data from key informant interviews involving PrEP care providers and navigators and working groups with SGMY. In phase 2, we will complete 2 rounds of usability testing of PrEPresent with 8-10 SGMY assessing both the intervention content and mobile health delivery platform to ensure features are usable and content is understood. In phase 3, we will conduct a pilot randomized controlled trial to evaluate the feasibility and acceptability of PrEPresent. We will randomize, 1:1, a racially and ethnically diverse sample of 150 SGMY aged 16-26 years living in the Los Angeles area and follow participants for 6 months. RESULTS: Phase 1 (formative work) was completed in April 2021. Usability testing was completed in December 2021. As of June 2023, 148 participants have been enrolled into the PrEPresent pilot randomized controlled trial (phase 3). Enrollment is expected to be completed in July 2023, with final results anticipated in December 2023. CONCLUSIONS: The PrEPresent intervention aims to bridge the gaps in PrEP eligibility and PrEP uptake among racially and ethnically diverse SGMY. By facilitating the delivery of PrEP navigation and focusing on improving patient activation, the PrEPresent intervention has the potential to positively impact the PrEP uptake cascade in the HIV care continuum as well as serve as a model for the tailoring of PrEP interventions based on behavior-based qualifications for PrEP instead of generalized gender-based eligibility. TRIAL REGISTRATION: ClinicalTrials.gov NCT05281393; https://clinicaltrials.gov/ct2/show/NCT05281393. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50866.

Health and service utilization among a sample of gender-diverse youth of color: the TRUTH study.

BACKGROUND: While there is growing research considering the experiences of transgender youth whose identities align with the gender binary, especially among young trans women, there are significantly fewer studies that accurately capture data about nonbinary youth, and even fewer studies capturing the experiences of transgender and gender diverse (TGD) youth of color. The purpose of this research was to assess the prevalence of sexual health behaviors, mental health challenges, substance use, and healthcare utilization among Black/African American, Latinx, Asian/Pacific Islander, indigenous and multi-racial/ethnic TGD youth, who have been largely underrepresented in research. METHODS: A total of 108 TGD youth ages 16-24 were recruited into the Trans Youth of Color Study (TRUTH). Each participant completed a 90-min survey administered by a research assistant with more sensitive information collected using ACASI. In addition to a completing a survey administered by research staff, participants also participated in specimen collection, which included urine sampling to assess recent substance use without a prescription, self-collected rectal/frontal and throat swabs to test for gonorrhea and chlamydia, and a blood draw to test for recent use of drugs, gonorrhea and chlamydia, and syphilis. The sample was recruited at public venues, community outreach and referral, through social media outreach, and via participant referral. Cross-sectional analyses were from a single study visit. RESULTS: Compared to rates among their cisgender peers, participants reported experiencing adverse social and structural determinants of health-e.g. food insecurity (61%), housing instability (30%), and limited access to healthcare (26% had no place to go for healthcare)-and elevated rates of illicit drug use (19-85%), mental health problems (e.g. 60% self-reported depression), and involvement in sexual risk-related behaviors (e.g. among those reporting penetrative sex 57-67% reported sex without a condom). CONCLUSIONS: This study adds descriptions of both mental and sexual health outcomes of a non-clinical sample of TGD youth to the literature, particularly among young transgender men and gender nonbinary youth, who have frequently been excluded from previous studies of sexual health. The findings document experiences and behaviors among TGD youth that contribute to mental and sexual health concerns, including rates of substance use, and healthcare utilization.

A Trans Youth of Color Study to Measure Health and Wellness: Protocol for a Longitudinal Observation Study.

BACKGROUND: Growing research on transgender youth is accounting for the variety of ways in which young people define their genders and sexualities. Because of this growing representation, more research is needed to understand how intersectional identities and stigma affect risk for HIV acquisition along the HIV care continuum and engagement in mental and physical health care. Little is known about accessibility to HIV-related prevention services of nonbinary and transmasculine youth, and further understanding of the impacts on transfeminine people-those who have historically faced the highest prevalence of HIV positivity-is crucial. OBJECTIVE: The overarching aims of the Trans Youth of Color Study are to conduct longitudinal research with a cohort of transgender minority youth (TGMY), explore factors that aid in the prevention of new HIV infection and transmission, and reduce HIV- and AIDS-related disparities by focusing on successful engagement in care. Findings from this research will be used to inform the development of new interventions designed to engage TGMY in the HIV prevention and care continua. METHODS: Longitudinal research (baseline and follow-up assessments every 6 months for 3 waves of data collection) followed a cohort (N=108) of transgender youth of color recruited in Los Angeles, California, United States. Participants were recruited using multiple community-informed strategies, such as from local venues, social media, and participant referral. In addition to self-report surveys, urine was collected to assess recent use of illicit drugs, and blood, rectal, and throat swabs were collected to test for current sexually transmitted infection and HIV infection. Additional blood and plasma samples (10 mL for 4 aliquots and 1 pellet) were collected and stored for future research. RESULTS: Participants in the Trans Youth of Color Study were recruited between May 25, 2018, and December 7, 2018. Baseline and longitudinal data are being analyzed as of August 2022. CONCLUSIONS: The findings from this research will inform adaptations to existing evidence-based HIV prevention interventions and help to guide new interventions designed to engage TGMY, especially those who are Black, Indigenous, or people of color, in the HIV prevention and care continua. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39207.

Combining the HYM (Healthy Young Men's) Cohort Study and the TRUTH (A Trans Youth of Color Study): Protocol for an Expanded Mixed Methods Study Renewal.

BACKGROUND: As we enter the fifth decade of the AIDS epidemic, health researchers and AIDS activists reflect both on the progress that has been made and the importance of continued prevention efforts for those most at risk. As HIV infection rates continue to fluctuate across communities, a trend has emerged with new HIV infections becoming increasingly concentrated-with cascading effects-among people aged <30 years, from marginalized racial and ethnic groups, and who are sexual or gender minorities. OBJECTIVE: In this paper, we discuss the renewal of the Healthy Young Men's (HYM) Cohort Study and the addition of a subcohort-TRUTH: A Transgender Youth of Color Study. The overarching aim of our renewed study was to inform new intervention strategies; understand linkage to care; and examine changes over time with respect to minority-related stress and intersectional identities and their relationship with substance use, mental health, and HIV risk. Findings from this study will help to inform the development of new interventions designed to engage African American and Black and Latino young men who have sex with men (YMSM) and transgender and gender minority youth in the HIV prevention and care continua and to reduce risk by addressing pathways of minority-related stress and intersectional stigma. METHODS: Longitudinal study (baseline and follow-up assessments every 6 months for a total of 8 waves of data collection) is ongoing with reconsented cohort from the last iteration of HYM Cohort Study. This study protocol includes self-report survey, collection of urine to assess recent use of illicit drugs, and collection of blood and rectal and throat swabs to test for current sexually transmitted infection and HIV infection. An additional sample of blood and plasma (10 mL for 4 aliquots and 1 pellet) is also collected and stored in the HYM Cohort Study biorepository for future studies. This mixed methods study design includes collection of triangulated analysis of quantitative, qualitative, and biological measures (ie, drug use, sexually transmitted infection and HIV testing, and adherence to antiretroviral therapy among participants who are HIV+) at baseline and every 6 months. RESULTS: As of February 2022, participants from the past 4 years of the HYM Cohort Study and TRUTH: A Transgender Youth of Color Study Cohort have been reconsented and enrolled into the renewal period of longitudinal data collection, which is projected from summer of 2020 until summer of 2025. Recruitment is ongoing to reach our target enrollment goal of YMSM and transgender minority youth. CONCLUSIONS: The findings from this study are being used to inform the development of new, and adaptation of existing, evidence-based HIV prevention interventions designed to engage populations of transgender and gender minority youth and YMSM in the HIV prevention and care continua. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39232.

Designing a Mobile Health Solution to Facilitate the Transition from NICU to Home: A Qualitative Study.

There is limited information about caregiver and provider perspectives regarding the design of a mobile health solution to facilitate the transition from the neonatal intensive care unit (NICU) to home. Focus groups were conducted with English- or Spanish-speaking families enrolled in an urban high-risk infant follow-up clinic and with their care providers. We generated salient themes using an inductive thematic analysis. Twenty-two participants completed the study. Among caregivers, the infant's median gestational age (IQR) was 29 (23, 34) weeks and 63% were Hispanic. Among the providers, 55% had practiced for more than 10 years and 18% were bilingual. Key stakeholder (family and provider) priorities for designing a mobile health solution were organized into eight domains, i.e., implementation ideas around user interface and timing, providing path planning and information, increasing support, improving engagement with providers and services, mitigating barriers to care after discharge and strengthening parenting role and confidence. The results from this study suggest that families and healthcare providers prioritize path planning, information and support as the pillars for designing an effective NICU-to-home transition mobile health application. Implications for product development include family empowerment, being a credible source of information and creating a resource for caregiver support and mental health.