Dataset Information

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review.

ABSTRACT:

Introduction

Conducting research with children in low/middle-income countries (LMIC) requires consideration of socioeconomic inequalities and cultural and linguistic differences. Our objective was to survey the literature on informed consent in paediatric LMIC research, assessing for practical guidance for culturally and linguistically appropriate procedures.

Methods

We conducted a scoping review on informed consent in paediatric LMIC research searching the PubMed, Web of Science and PsycINFO databases. Eligible articles were published in English, from any date range, of any study design or format.

Results

The search identified 2027 references, of which 50 were included in the analysis following full-text review. Reviewed guidelines emphasised individual, informed and voluntary consent from parents and caregivers. Reviewed articles provided detailed practical guidance on adapting these guiding principles to LMIC settings, including considerations for community engagement, verbal or other alternative consent procedures for low-literacy settings or less commonly spoken languages and guarding against therapeutic misconception by caregivers. There was uncertainty, however, on how to best protect individual autonomy, especially when influenced by gender dynamics, leadership hierarchies or the social status of researchers themselves. There was, furthermore, limited research discussing the special case of research involving adolescents or of procedures for documenting assent by participating children.

Conclusions

A scoping review of paediatric research in LMICs revealed substantial guidance on several features of culturally appropriate informed consent. However, additional research and guidance is needed, especially in the areas of gender imbalances, research with adolescents and children's own assent to participate in research.

SUBMITTER: Colom M

PROVIDER: S-EPMC6307601 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Publications

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review.

Colom Marcela M Rohloff Peter P

BMJ paediatrics open 20181205 1

<h4>Introduction</h4>Conducting research with children in low/middle-income countries (LMIC) requires consideration of socioeconomic inequalities and cultural and linguistic differences. Our objective was to survey the literature on informed consent in paediatric LMIC research, assessing for practical guidance for culturally and linguistically appropriate procedures.<h4>Methods</h4>We conducted a scoping review on informed consent in paediatric LMIC research searching the PubMed, Web of Science ...[more]

PMID: 30613801

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Project description:BackgroundThe research shows a growing trend in using an electronic platform to supplement or replace traditional paper-based informed consent processes. Instead of the traditionally written informed consent document, electronic informed consent (eConsent) may be used to assess the research subject's comprehension of the information presented. By doing so, respect for persons as one of the research ethical principles can be upheld. Furthermore, these electronic methods may reduce potential airborne infection exposures, particularly during the pandemic, thereby adhering to the beneficence and nonmaleficence principle. This scoping review aims to identify the ethics related criteria that have been included in electronic informed consent processes and to synthesize and map these criteria to research ethics principles, in order to identify the gaps, if any, in current electronic informed consent processes.MethodsThe search was performed based on internet search and three main databases: PubMed, SCOPUS and EBSCO. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation guideline was used to report this work.ResultsOf 34 studies that met the inclusion criteria, 242 essential original constructs were collated, and 7 concepts were derived. Digital content showed the highest percentage of collated original constructs (27%, n = 65) followed by accessibility (24%, n = 56), comprehension engagement (18%, n = 43), autonomy (14%, n = 34), confidentiality (11%, n = 25), language (5%, n = 13), and parental consent (1%, n = 2). Twenty-five new items were synthesized for eConsent criteria which may provide guidance for ethical review of research involving eConsent.ConclusionThe current study adds significant value to the corpus of knowledge in research ethics by providing ethical criteria on electronic informed consent based on evidence-based data. The new synthesized items in the criteria can be readily used as an initial guide by the IRB/REC members during a review process on electronic informed consent and useful to the future preparation of a checklist.

Project description:Priority-setting in health is risky and challenging, particularly in resource-constrained settings. It is not simply a narrow technical exercise, and involves the mobilisation of a wide range of capacities among stakeholders - not only the technical capacity to "do" research in economic evaluations. Using the Individuals, Nodes, Networks and Environment (INNE) framework, we identify those stakeholders, whose capacity needs will vary along the evidence-to-policy continuum. Policymakers and healthcare managers require the capacity to commission and use relevant evidence (including evidence of clinical and cost-effectiveness, and of social values); academics need to understand and respond to decision-makers' needs to produce relevant research. The health system at all levels will need institutional capacity building to incentivise routine generation and use of evidence. Knowledge brokers, including priority-setting agencies (such as England's National Institute for Health and Care Excellence, and Health Interventions and Technology Assessment Program, Thailand) and the media can play an important role in facilitating engagement and knowledge transfer between the various actors. Especially at the outset but at every step, it is critical that patients and the public understand that trade-offs are inherent in priority-setting, and careful efforts should be made to engage them, and to hear their views throughout the process. There is thus no single approach to capacity building; rather a spectrum of activities that recognises the roles and skills of all stakeholders. A range of methods, including formal and informal training, networking and engagement, and support through collaboration on projects, should be flexibly employed (and tailored to specific needs of each country) to support institutionalisation of evidence-informed priority-setting. Finally, capacity building should be a two-way process; those who build capacity should also attend to their own capacity development in order to sustain and improve impact.

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.

Dataset Information

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review.

Introduction

Methods

Results

Conclusions

Publications

Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review.

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