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Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

ABSTRACT: Adolescents in low and middle-income countries (LMICs) have a high prevalence of HIV, therefore, it is important that they are included in HIV research. However, ethical challenges regarding consent can hinder adolescent research participation. We examined examples from the Prevention and Treatment Through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC3H) research consortium, which investigates adolescent HIV prevention and treatment in seven LMICs: Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, and Zambia. PATC3H researchers were asked to identify ethical and practical challenges of adolescent consent to research participation in these countries. We also did a scoping review of strategies that could improve adolescent participation in LMIC HIV studies. Examples from PATC3H research highlighted many ethical challenges that affect adolescent participation, including inconsistent or absent consent guidance, guidelines that fail to account for the full array of adolescents' lives, and variation in how ethical review committees assess adolescent studies. Our scoping review identified three consent-related strategies to expand adolescent inclusion: waiving parental consent requirements, allowing adolescents to independently consent, and implementing surrogate decision making. Our analyses suggest that these strategies should be further explored and incorporated into ethical and legal research guidance to increase adolescent inclusion in LMIC HIV research.

SUBMITTER: Day S

PROVIDER: S-EPMC8491773 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

Day Suzanne S Kapogiannis Bill G BG Shah Seema K SK Wilson Erin C EC Ruel Theodore D TD Conserve Donaldson F DF Strode Ann A Donenberg Geri R GR Kohler Pamela P Slack Catherine C Ezechi Oliver O Tucker Joseph D JD

The lancet. HIV 20201201 12

Adolescents in low and middle-income countries (LMICs) have a high prevalence of HIV, therefore, it is important that they are included in HIV research. However, ethical challenges regarding consent can hinder adolescent research participation. We examined examples from the Prevention and Treatment Through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC3H) research consortium, which investigates adolescent HIV prevention and treatment in seven L ...[more]

PMID: 33275917

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Project description:Introduction Fertility levels among adolescents remain high in many settings. The objective of this paper was to review the available literature about postpartum and lactational amenorrhoea among adolescents in low-income and middle-income countries (LMICs). Methods We searched Medline, Embase, Global Health and CINAHL Plus databases using terms capturing adolescence and lactational or postpartum amenorrhoea. Inclusion criteria included publication date since 1990, data from LMICs, and topic related to lactational amenorrhoea as a postpartum family planning method or as an effect of (exclusive) breast feeding among adolescents. Thematic analysis and narrative synthesis were applied to summarise and interpret the findings. Results We screened 982 titles and abstracts, reviewed 75 full-text articles and included nine. Eight studies assessed data from a single country (three from India, two from Bangladesh, two from Turkey, one from Nigeria). One study using Demographic and Health Survey data included 37 different LMICs. The five studies measuring duration of postpartum or lactational amenorrhoea reported a wide range of durations across the contexts examined. Four studies (from Bangladesh, Nigeria and Turkey) examined outcomes related to the use of lactational amenorrhoea as a family planning method among adolescents. We did not find any studies assessing adolescents’ knowledge of lactational amenorrhoea as a postpartum family planning method. Likewise, little is known about the effectiveness of lactational amenorrhoea method among adolescents using sufficiently large samples and follow-up time. Conclusion The available evidence on lactational amenorrhoea among adolescents in LMICs is scarce. Given the potential contribution of lactational amenorrhoea to prevention of short interpregnancy intervals among adolescents and young women, there is a need for a better understanding of the duration of lactational amenorrhoea, and the knowledge and effective use of lactational amenorrhoea method for family planning among adolescents in a wider range of LMIC settings.

Project description:ImportanceMany randomized clinical trials (RCTs) led by high-income countries (HICs) now enroll patients from lower middle-income countries (LMICs) and upper middle-income countries (UMICs). Although enrolling diverse populations promotes research collaborations, there are issues regarding which countries participate in RCTs and how this participation may contribute to global research.ObjectiveTo describe which UMICs and LMICs participate in RCTs led by HICs.Design, setting, and participantsA cross-sectional study of all oncology RCTs published globally during January 1, 2014, to December 31, 2017, was conducted. The study cohort was restricted to RCTs led by HICs that enrolled participants from LMICs and UMICs. Study analyses were conducted in November 1, 2021, to May 31, 2022.Main outcomes and measuresA bibliometric approach (Web of Science 2007-2017) was used to explore whether RCT participation was proportional to other measures of cancer research activity. Participation in RCTs (ie, percentage of RCTs in the cohort in which each LMIC and UMIC participated) was compared with country-level cancer research bibliometric output (ie, percentage of total cancer research bibliometric output from the same group of countries that came from a specific LMIC and UMIC).ResultsAmong the 636 HIC-led RCTs, 186 trials (29%) enrolled patients in LMICs (n = 84 trials involving 11 LMICs) and/or UMICs (n = 181 trials involving 26 UMICs). The most common participating LMICs were India (42 [50%]), Ukraine (39 [46%]), Philippines (23 [27%]), and Egypt (12 [14%]). The most common participating UMICs were Russia (115 [64%]), Brazil (94 [52%]), Romania (62 [34%]), China (56 [31%]), Mexico (56 [31%]), and South Africa (54 [30%]). Several LMICs are overrepresented in the cohort of RCTs based on proportional cancer research bibliometric output: Ukraine (46% of RCTs but 2% of cancer research bibliometric output), Philippines (27% RCTs, 1% output), and Georgia (8% RCTs, 0.2% output). Overrepresented UMICs include Russia (64% RCTs, 2% output), Romania (34% RCTs, 2% output), Mexico (31% RCTs, 2% output), and South Africa (30% RCTs, 1% output).Conclusions and relevanceIn this cross-sectional study, a substantial proportion of RCTs led by HICs enrolled patients in LMICs and UMICs. The LMICs and UMICs that participated in these trials did not match overall cancer bibliometric output as a surrogate for research ecosystem maturity. Reasons for this apparent discordance and how these data may inform future capacity-strengthening activities require further study.

Project description:BackgroundAn estimated 85% of research resources are wasted worldwide, while there is growing demand for context-based evidence-informed health policymaking. In low- and middle-income countries (LMICs), research uptake for health policymaking and practice is even lower, while little is known about the barriers to the translation of health evidence to policy and local implementation. We aimed to compile the current evidence on barriers to uptake of research in health policy and practice in LMICs using scoping review.MethodsThe scoping review followed the Preferred Reporting Items for Systematic Review and Meta-Analyses-extension for Scoping Reviews (PRISMA-ScR) and the Arksey and O'Malley framework. Both published evidence and grey literature on research uptake were systematically searched from major databases (PubMed, Cochrane Library, CINAHL (EBSCO), Global Health (Ovid)) and direct Google Scholar. Literature exploring barriers to uptake of research evidence in health policy and practice in LMICs were included and their key findings were synthesized using thematic areas to address the review question.ResultsA total of 4291 publications were retrieved in the initial search, of which 142 were included meeting the eligibility criteria. Overall, research uptake for policymaking and practice in LMICs was very low. The challenges to research uptake were related to lack of understanding of the local contexts, low political priority, poor stakeholder engagement and partnership, resource and capacity constraints, low system response for accountability and lack of communication and dissemination platforms.ConclusionImportant barriers to research uptake, mainly limited contextual understanding and low participation of key stakeholders and ownership, have been identified. Understanding the local research and policy context and participatory evidence production and dissemination may promote research uptake for policy and practice. Institutions that bridge the chasm between knowledge formation, evidence synthesis and translation may play critical role in the translation process.

Project description:BackgroundSurvey data that categorizes gender identity in binary terms and conflates sex and gender limits knowledge around the experience of gender minority populations, whose gender identity or expression does not align with the sex they were assigned at birth. In this review, we outline the existing survey research on the experience of a gender minority demographic for whom there is particularly limited data: adolescents and youth in low and middle-income countries (LMICs).MethodsThis paper is a scoping review of peer-reviewed articles, published in English, that use survey data to examine the experience of gender minority adolescents and youth in LMICs. We conducted a search on two major databases using key terms related to gender identity, adolescence and youth, and country and region. This search yielded 385 articles. Following a team-conducted review, we retained 33 articles for the final analysis.ResultsOur review shows that surveys with adolescents and youth in LMICs are increasingly including questions and taking sampling approaches that allow gender minority populations to be visible in survey data. Surveys that do so are largely focused in upper middle-income countries (n = 24), rather than lower middle-income or low-income countries, with South East Asia a notable sub-region of focus (n = 15). Sexual health, mental health, and violence are key topics of interest. Most of the surveys rely on some form of network-driven sampling focused on sexual and/or gender minorities (n = 22). The studies vary in how they ask about gender identity, both in terms of question formulation and the answer categories that are offered, as well as the extent to which they describe the questions in the article text.ConclusionsThis review reveals a growing body of work that provides important insights into the experiences of gender minority adolescents and youth in LMICs. More studies could integrate these approaches, but it must be done in a way that is thoughtful about cultural and political context. Given the relatively nascent nature of such research, we encourage scholars to continue providing details on methodology, including around participant recruitment and the development of gender identity questions. This information would be valuable for researchers seeking to better include gender minorities and their experiences in survey research, but who might be daunted methodologically.

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Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

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Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

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