'I feel that I should decide on my own .': who should be involved in the decision-making process for adolescent involvement in HIV research?

INTRODUCTION: Efforts to improve health outcomes among adolescents and young adults living with HIV (ALHs) are hampered by limited adolescent engagement in HIV-related research. We sought to understand the views of adolescents, caregivers and healthcare workers (HCWs) about who should make decisions regarding ALHs' research participation. METHODS: We conducted focus group discussions (FGDs) and in-depth interviews (IDIs) with ALHs (aged 14-24 years), caregivers of ALHs and HCWs from six HIV care clinics in Western Kenya. We used semi-structured guides to explore ALHs' involvement in research decisions. Transcripts were analysed using thematic analysis; perspectives were triangulated between groups. RESULTS: We conducted 24 FGDs and 44 IDIs: 12 FGDs with ALHs, 12 with caregivers, and 44 IDIs with HCWs, involving 216 participants. HCWs often suggested that HIV research decision-making should involve caregivers and ALHs deciding together. In contrast, ALHs and parents generally thought decisions should be made individually, whether by HCWs/research teams (although this is likely ethically problematic), adolescents or caregivers. Caregiver and ALH preferences depended on ALHs' age, with younger ALHs requiring more support. A few caregivers felt that ALHs should consult with the research team/HCWs due to their greater knowledge of clinical care. ALHs emphasised that they should independently decide because they thought they had the right to do so and the capacity to consent. Poor communication and parental non-disclosure of HIV status influenced ALHs' views to exclude caregivers from decision-making. Regarding influences on research decision-making, ALHs were more willing to participate based on perceived contribution to science and less interested in participating in studies with potential risks, including loss of confidentiality. DISCUSSION: While research teams and HCWs felt that adolescents and caregivers should jointly make research decisions, ALHs and caregivers generally felt individuals should make decisions. As ALHs sometimes find caregiver support lacking, improving family dynamics might enhance research engagement.

HIV risk and prevention among clients of a delivery-based harm reduction service during an HIV outbreak among people who use drugs in northern rural Minnesota, USA.

BACKGROUND: Since 2019, multiple HIV outbreaks occurred among people who inject drugs (PWID) in Minnesota. Syringe service programs (SSPs) are evidence-based programs that reduce the spread of HIV. We conducted an assessment of characteristics and HIV risk and prevention among clients of a delivery-based SSP near an HIV outbreak in rural, northern Minnesota. METHODS: In the fall of 2021, we conducted a cross-sectional survey of clients of a mobile SSP based in Duluth, Minnesota. Survey topics included demographics, drug use, sexual behavior, HIV testing history, and HIV status. We conducted descriptive analyses and used univariate logistic regression to identify correlates of syringe sharing. The analysis was limited to PWID in the last six months. RESULTS: A total of 125 people were surveyed; 77 (62%) were PWID in the last six months. Among these participants, 52% were female and 50% were homeless. Thirty-two percent reported sharing syringes and 45% reported sharing injecting equipment. Approximately one-half (49%) of participants had been tested for HIV in the past year, and none reported being HIV-positive. Individuals reported low condom usage (88% never used), and 23% of participants reported engaging in some form of transactional sex in the last six months. Incarceration in the last year was associated with sharing syringes (odds ratio = 1.4, 95% confidence interval 1.1-1.8). CONCLUSION: HIV risk was high among PWID receiving services at this SSP. These data highlight a rural SSP that is engaged with people at risk for HIV and needs additional support to expand harm reduction services.

Persistence in a pharmacist-led, same-day PrEP program in Mississippi: a mixed-methods study.

INTRODUCTION: Mississippi has one of the highest rates of HIV in the United States but low PrEP uptake. Understanding patterns of PrEP use can improve PrEP initiation and persistence. METHODS: This is a mixed-method evaluation of a PrEP program in Jackson, Mississippi. Between November 2018-December 2019, clients at high risk for HIV attending a non-clinical testing site were referred to a pharmacist for same-day PrEP initiation. The pharmacist provided a 90-day PrEP prescription and scheduled a follow-up clinical appointment within three months. We linked client records from this visit to electronic health records from the two largest PrEP clinics in Jackson to determine linkage into ongoing clinical care. We identified four distinct PrEP use patterns, which we used for qualitative interview sampling: 1) filled a prescription and linked into care within three months; 2) filled a prescription and linked into care after three months; 3) filled a prescription and never linked into care; and 4) never filled a prescription. In 2021, we purposively sampled patients in these four groups for individual interviews to ascertain barriers and facilitators to PrEP initiation and persistence, using guides informed by the Theory of Planned Behavior. RESULTS: There were 121 clients evaluated for PrEP; all were given a prescription. One-third were less than 25 years old, 77% were Black, and 59% were cisgender men who have sex with men. One-quarter (26%) never filled their PrEP prescription, 44% picked up the prescription but never linked into clinical care, 12% linked into care at some point after three months (resulting in a gap in PrEP coverage), and 18% linked into care within 3 months. We interviewed 26 of 121 clients. Qualitative data revealed that cost, stigmas related to sexuality and HIV, misinformation about PrEP, and perceived side effects were barriers to uptake and persistence. Individuals' desire to stay healthy and the support of PrEP clinic staff were facilitators. CONCLUSIONS: The majority of individuals given a same-day PrEP prescription either never started PrEP or stopped PrEP within the first three months. Addressing noted barriers of stigma and misinformation and reducing structural barriers may increase PrEP initiation and persistence.

"[T]he laws need to change to reflect current society": Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya.

INTRODUCTION: Engaging adolescents in HIV care and research promotes the development of interventions tailored to their unique needs. Guidelines generally require parental permission for adolescents to receive HIV care/testing or participate in research, with exceptions. Nevertheless, parental permission requirements can restrict adolescent involvement in care and research. To better appreciate prospects for policy reform, we sought to understand the perspectives of stakeholders involved in the development, review and implementation of policies related to adolescents living with HIV. METHODS: Semi-structured individual interviews (IDIs) were conducted from October 2019 to March 2020 with 18 stakeholders with expertise in the (1) development of policy through membership in the Law Society of Kenya or work as a health policy official; (2) review of policy through ethics review committee service; or (3) implementation of policy through involvement in adolescent education. IDIs were conducted in English by Kenyan social scientists, audio-recorded and transcribed verbatim. We used thematic analysis to identify themes around how policies can be reformed to improve adolescent engagement in HIV care and research. RESULTS: Our analysis identified three major themes. First, policies should be flexible rather than setting an age of consent. Stakeholders noted that adolescents' capacity for engagement in HIV care and research depended on context, perceived risks and benefits, and "maturity"-and that age was a poor proxy for the ability to understand. Second, policies should evolve with changing societal views about adolescent autonomy. Participants recognized a generational shift in how adolescents learn and mature, suggesting the need for a more frequent review of HIV care and research guidelines. Third, adults should empower adolescent decision-making. Stakeholders felt that caregivers can gradually involve adolescents in decision-making to equip them to gain ownership over their health and lives, improving their confidence and capacity. CONCLUSIONS: Revising relevant laws to consider context, alternative measures of maturity, and evolving societal views about adolescence, along with supporting caregivers to assist in developing adolescent autonomy may promote more equitable and representative participation of adolescents in HIV care and research. Additional research should explore how to support caregivers and other adults to empower adolescents and improve stakeholder engagement in a more routine process of policy reform.

"Whenever you need support, you first turn to the group": motivations and functions of WhatsApp groups for youth living with HIV.

Social support is a critical component of achieving positive health outcomes for youth living with HIV (YLWH). Mobile health (mHealth) has significant potential for providing social support to YLWH. However, little is known about the domains of social support most needed by YLWH which mHealth interventions might address. Drawing on the spontaneous creation of WhatsApp support groups by YLWH in Nairobi, Kenya, we characterized Kenyan YLWH's social support needs and potential roles of social media groups in meeting them. We conducted interviews and focus-groups with 68 YLWH, 24 caregivers and 20 healthcare workers, and observed two YLWH-led WhatsApp groups for 6 weeks. Youth reported that existing support systems, including family and healthcare workers, already provided informational and instrumental support. However, they emphasized unmet companionship and emotional support needs, leading to isolation, hopelessness, and medication adherence challenges. Participants identified connection with other YLWH as a unique source of emotional and companionship support that allowed them to feel more secure and less isolated. Interviews and observed WhatsApp chats demonstrated that WhatsApp groups were a desirable medium for companionship support that overcame barriers to in-person connection.

Syringe Service Program Perspectives on Barriers, Readiness, and Programmatic Needs to Support Rollout of the COVID-19 Vaccine.

BACKGROUND: We explored syringe service program (SSP) perspectives on barriers, readiness, and programmatic needs to support coronavirus disease 2019 (COVID-19) vaccine uptake among people who use drugs. METHODS: We conducted an exploratory qualitative study, leveraging an existing sample of SSPs in the United States. Semistructured, in-depth interviews were conducted with SSP staff between February and April 2021. Interviews were analyzed using a Rapid Assessment Process, an intensive, iterative process that allows for rapid analysis of time-sensitive qualitative data. RESULTS: Twenty-seven SSPs completed a qualitative interview. Many SSP respondents discussed that COVID-19 vaccination was not a priority for their participants because of competing survival priorities, and respondents shared concerns that COVID-19 had deepened participant mistrust of health care. Most SSPs wanted to participate in COVID-19 vaccination efforts; however, they identified needed resources, including adequate space, personnel, and training, to implement successful vaccine programs. CONCLUSIONS: Although SSPs are trusted resources for people who use drugs, many require additional structural and personnel support to address barriers to COVID-19 vaccination among their participants. Funding and supporting SSPs in the provision of COVID-19 prevention education and direct vaccine services should be a top public health priority.

Barriers to engaging people who use drugs in harm reduction services during the COVID-19 pandemic: A mixed methods study of syringe services program perspectives.

BACKGROUND: Syringe services programs (SSPs) provide critical evidence-based public health services that decrease harms from drug use for people who use drugs (PWUD). Many SSPs have experienced significant and evolving COVID-19-related disruptions. We aimed to characterize the impacts of COVID-19 on SSP operations in the United States approximately one year into the pandemic. METHODS: Participating sites, selected from a national sample of SSPs, completed a semi-structured interview via teleconference and brief survey evaluating the impacts of COVID-19 on program operations. Data collection explored aspects of program financing, service delivery approaches, linkages to care, and perspectives on engaging PWUD in services one year into the pandemic. Interview data were analyzed qualitatively using Rapid Assessment Process. Survey data were analyzed using descriptive statistics and triangulated with qualitative findings. RESULTS: 27 SSPs completed study-related interviews and surveys between February 2021 - April 2021. One year into the pandemic, SSPs reported continuing to adapt approaches to syringe distribution in response to COVID-19, and identified multiple barriers that hindered their ability to engage program participants in services, including 1) isolation and decreased connectivity with participants, 2) resource restrictions that limit responsiveness to participant needs, 3) reduced capacity to provide on-site HIV/HCV testing and treatment linkages, and 4) changing OUD treatment modalities that were a "double-edged sword" for PWUD. Quantitative survey responses aligned with qualitative findings, highlighting increases in the number of syringes distributed, increases in mobile and home delivery services, and reductions in on-site HIV and HCV testing. CONCLUSION: These data illuminate persistent and cascading risks of isolation, reduced access to services, and limited engagement with program participants that resulted from COVID-19 and continue to create barriers to the delivery of critical harm reduction services. Findings emphasize the need to ensure SSPs have the resources and capacity to adapt to changing public health needs, particularly as the COVID-19 pandemic continues to evolve.

Responding to a surge in overdose deaths: perspectives from US syringe services programs.

BACKGROUND: US overdose deaths have reached a record high. Syringe services programs (SSPs) play a critical role in addressing this crisis by providing multiple services to people who use drugs (PWUD) that help prevent overdose death. This study examined the perspectives of leadership and staff from a geographically diverse sample of US SSPs on factors contributing to the overdose surge, their organization's response, and ongoing barriers to preventing overdose death. METHODS: From 2/11/2021 to 4/23/2021, we conducted semi-structured interviews with leadership and staff from 27 SSPs sampled from the North American Syringe Exchange Network directory. Interviews were transcribed and qualitatively analyzed using a Rapid Assessment Process. RESULTS: Respondents reported that increased intentional and unintentional fentanyl use (both alone and combined with other substances) was a major driver of the overdose surge. They also described how the COVID-19 pandemic increased solitary drug use and led to abrupt increases in use due to life disruptions and worsened mental health among PWUD. In response to this surge, SSPs have increased naloxone distribution, including providing more doses per person and expanding distribution to people using non-opioid drugs. They are also adapting overdose prevention education to increase awareness of fentanyl risks, including for people using non-opioid drugs. Some are distributing fentanyl test strips, though a few respondents expressed doubts about strips' effectiveness in reducing overdose harms. Some SSPs are expanding education and naloxone training/distribution in the broader community, beyond PWUD and their friends/family. Respondents described several ongoing barriers to preventing overdose death, including not reaching certain groups at risk of overdose (PWUD who do not inject, PWUD experiencing homelessness, and PWUD of color), an inconsistent naloxone supply and lack of access to intranasal naloxone in particular, inadequate funding, underestimates of overdoses, legal/policy barriers, and community stigma. CONCLUSIONS: SSPs remain essential in preventing overdose deaths amid record numbers likely driven by increased fentanyl use and COVID-19-related impacts. These findings can inform efforts to support SSPs in this work. In the face of ongoing barriers, support for SSPs-including increased resources, political support, and community partnership-is urgently needed to address the worsening overdose crisis.

A Social Media Group Cognitive Behavioral Therapy Intervention to Prevent Depression in Perinatal Youth: Stakeholder Interviews and Intervention Design.

BACKGROUND: Adolescents and young adults aged <25 years (youth) are at a higher risk of perinatal depression than older adults, and they experience elevated barriers to in-person care. Digital platforms such as social media offer an accessible avenue to deliver group cognitive behavioral therapy (CBT) to perinatal youth. OBJECTIVE: We aim to develop the Interactive Maternal Group for Information and Emotional Support (IMAGINE) intervention, a facilitated social media group CBT intervention to prevent perinatal depression in youth in the United States, by adapting the Mothers and Babies (MB) course, an evidence-based in-person group CBT intervention. In this study, we report perspectives of youth and health care providers on perinatal youths' mental health needs and document how they informed IMAGINE design. METHODS: We conducted 21 semistructured in-depth individual interviews with 10 pregnant or postpartum youths aged 14-24 years and 6 health care workers. All interviews were recorded, transcribed, and analyzed using deductive and inductive approaches to characterize perceptions of challenges and facilitators of youth perinatal mental health. Using a human-centered design approach, stakeholder perspectives were incorporated into the IMAGINE design. We classified MB adaptations to develop IMAGINE according to the Framework for Modification and Adaptation, reporting the nature, timing, reason, and goal of the adaptations. RESULTS: Youth and health care workers described stigma associated with young pregnancy and parenting, social isolation, and lack of material resources as significant challenges to youth mental wellness. They identified nonjudgmental support, peer companionship, and access to step-by-step guidance as facilitators of youth mental wellness. They endorsed the use of a social media group to prevent perinatal depression and recommended that IMAGINE facilitate peer support, deliver content asynchronously to accommodate varied schedules, use a confidential platform, and facilitate the discussion of topics beyond the MB curriculum, such as navigating support resources or asking medical questions. IMAGINE was adapted from MB to accommodate stakeholder recommendations and facilitate the transition to web-based delivery. Content was tailored to be multimodal (text, images, and video), and the language was shortened and simplified. All content was designed for asynchronous engagement, and redundancy was added to accommodate intermittent access. The structure was loosened to allow the intervention facilitator to respond in real time to topics of interest for youth. A social media platform was selected that allows multiple conversation channels and conceals group member identity. All adaptations sought to preserve the fidelity of the MB core components. CONCLUSIONS: Our findings highlight the effect of stigmatization of young pregnancy and social determinants of health on youth perinatal mental health. Stakeholders supported the use of a social media group to create a supportive community and improve access to evidence-based depression prevention. This study demonstrates how a validated intervention can be tailored to this unique group.

The Psychosocial Effects of the COVID-19 Pandemic on Youth Living with HIV in Western Kenya.

The objective of this study was to assess psychosocial effects of COVID-19 among adolescents living with HIV (ALHIV) in Kenya and to assess the feasibility of conducting behavioral surveys by phone. We adapted our protocol to administer telephone rather than in-person follow-up surveys and included questions about COVID-19. The majority of participants (99%) reported having heard of COVID-19; 23% reported no longer being able to go outside, 17% reported that they could no longer go to their regular clinic for medical care, and 3% reported that they could no longer get medication refills. PHQ-9 screening identified 9% (n = 45) with mild depression symptoms, and 1% (n = 3) with moderate-to-severe depression symptoms. Young adults 20-24 years old had more mild to severe depressive symptoms than the younger age groups (p < 0.001). Offering remote peer-support or mental health care, continuing to offer differentiated care services, and considering financial support will support the health and well-being of ALHIV.

Client and provider experiences with self-administration of subcutaneous depot medroxyprogesterone acetate (DMPA-SC) in Malawi.

OBJECTIVE: As low- and middle-income countries (LMICs) consider adding self-administration of subcutaneous depot medroxyprogesterone acetate (DMPA-SC) to their contraceptive method mix, learning about family planning clients' and providers' experiences with self-injectable DMPA-SC during trials will inform introduction and scale-up efforts. STUDY DESIGN: We conducted semistructured interviews with 30 randomly selected adult women enrolled in the self-administration group of a 12-month randomized controlled trial studying DMPA-SC continuation rates in rural Malawi. We asked about their experiences learning to self-inject, self-injecting, remembering when to reinject, and storing and disposing of DMPA-SC. We also interviewed 12 providers - clinic-based providers (CBPs) and community-based health surveillance assistants (HSAs) - who trained clients to self-inject DMPA-SC during the trial. We asked about their experiences training and supporting women to self-inject DMPA-SC during the trial and their recommendations for scale-up of self-administered DMPA-SC. RESULTS: Clients and providers reported positive experiences with DMPA-SC self-injection. Clients felt that DMPA-SC self-injection saved them time and money, and providers felt that it reduced their workload and saved them time. We found that both CBPs and HSAs successfully trained clients to self-inject DMPA-SC and that clients safely and appropriately stored and disposed of DMPA-SC. CONCLUSIONS: Our findings contribute to the growing body of evidence of the feasibility of DMPA-SC self-injection in LMIC settings. We recommend that providers plan to train clients for at least 30min, emphasize the activating and injecting steps during training, use up to four practice injections per client trained and give self-injectors calendars to help them remember when to reinject. IMPLICATIONS: DMPA-SC self-administration should be made available in LMIC settings, but because it is a new practice, implementation guidance is needed. We offer practical recommendations for introducing and scaling up DMPA-SC self-administration based on clients' and providers' experiences during a trial investigating this practice in Malawi.