Participation Of Children In Research Research Articles

The Value of Child Participation in Research—A Qualitative Child-Centered Approach to the Early Development of an Empowerment Inventory for Children

Child participation has become a conscious goal for support services related to children and young people, but there is still uncertainty regarding how this can be facilitated. This study explores the value of children’s participation in research and is based on a “child-centred” approach to the early development of a participation tool called the “Sense of Empowerment Inventory for Children” (SEIC). The main finding in this study concerns both the specific changes that were proposed by the children and how this affected the quality of the tool, but also how the children’s involvement had an impact on understanding participation as a process. This study adds knowledge to a methodological approach that supports the value and benefit of including children in participatory processes in research.

Sueños, miedos, alegrías, tristezas (SMAT): técnica investigativa-participativa con niñas, niños y adolescentes

(analítico)La participación de la población infantil en la investigación implica un cambio epistémico con claras implicaciones metodológicas. En este texto presentamos una herramienta novedosa para investigar con niñas, niños y adolescentes: el SMAT (sueños, miedos, alegrías y tristezas). Es una versión del análisis de debilidades, amenazas, fortalezas y oportunidades adaptada a la realidad vivencial y discursiva infantil que ha mostrado su viabilidad en la investigación con infancias, incluso durante el contexto pandémico. El texto aclara la lógica metodológica de la herramienta, aporta claves para su uso y presenta ejemplos de resultados obtenidos en diferentes contextos (originándose en la investigación participativa, pero mostrando también su utilidad en diseños convencionales de investigación) que muestransu versatilidad y pertinencia para el estudio del discurso de la población infantil. Palabras clave: Infancia; metodología; participación. Tesauro Europeo de la Educación.

Factors Influencing Parental Willingness to Consent to a Survey Study for Patients in the Pediatric Emergency Department.

To identify factors that impact parental willingness to consent to research studies conducted for their children during visits to pediatric emergency departments (EDs). Parents and guardians of children receiving care in our pediatric ED were approached and asked if they would be willing to let their child participate in a research study requiring the child to complete an electronic questionnaire. No such questionnaire existed, however, because the primary purpose was to ascertain the parent's willingness to let their child participate. All parents were debriefed and informed of the true purpose of the study and asked to complete a survey themselves to help understand factors that influenced their initial decision of whether to consent. Bivariate tests and logistic regression were used to evaluate unadjusted and adjusted associations between parent and patient characteristics and parental consent decision. We approached 431 eligible parents about the hypothetical research study involving their children, and 386 (89.6%) consented for their children to participate. After the debriefing, 392 (91.0%) parents consented to complete the parental survey. We observed statistically significant associations between shorter length of ED stay to approach for consent for the study ( P = 0.048) as well as longer travel time ( P = 0.03) and willingness to consent in bivariate analysis, though this did not hold in regression analysis. Regression analysis revealed parents of children who have previously participated in research had 79 times lower odds of consenting to participate in our study adjusted for parent race, ethnicity, actual and perceived length of stay, travel time to the ED, and altruism. A high proportion of parents consented to their child participating in research in our ED with previous child participation in research being associated with lower odds of parental consent even when adjusted for other factors. Our findings may inform future research practices and studies investigating parental perceptions and motivations surrounding research studies.

Through the Zoom window: how children use virtual technologies to navigate power dynamics in research

ABSTRACT Virtual technologies gained popularity during the COVID-19 pandemic for use in research, including research with children. As scholarship from the field of science, technology and society (STS) suggests, technologies are never neutral, but embedded with social values and, as such, used by people to navigate identities and relationships. Building on childhood studies research that has shown how children appropriate and use research tools, this article asks: How do child research participants use this virtual ‘window’ into their homes and their lives? Using observations from a virtual and in-person study in the United States, we show how children used virtual technologies to manage relationships, filter what researchers saw of their lives, and navigate issues of privacy and self-disclosure. We conclude that analysing children’s interactions with research technologies offers important indicators to guide researchers attending to ethical issues of power for both in-person and virtual research with children.

“Now I Understand why She Needs Our help”

Abstract Children’s right to be listened to and taken seriously according to Article 12 of the uncrc is an important objective of children’s services. This article is based on a qualitative case study with children to explore child participation in research and the understanding of collaborative alliances. Analysis of field notes from workshops with children as co-researchers in a co-creation project forms a picture of four key components to answer the research question of how collaborative alliance as a methodological approach to child participation can support their ability to express their views freely: (a) having a valuable role in the collaboration, (b) creating a safe framework, (c) inclusion through information, and (d) an open and exploratory approach to the task. In this methodological approach, there is a suggestion of a ‘task-oriented approach’ to meaningful participation, as well as a proposal for chronological order for these elements.

Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study

BackgroundThe South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues like sexual behaviour or substance use.DiscussionSouth African guidelines set several conditions that must be met for waivers to be granted. These norms overlap with those in international guidelines. However, the ethical norms, especially related to self-consent are sometimes vague. This article critically evaluates the consent norms in the national ethics guidelines and makes recommendations for reform to ethics guidelines in a way that recognises the value of child participation in research, their evolving decision-making capacity and their best interests.ConclusionRecommendations are made to harmonise ethics guidelines and law in a way that promotes child participation in research, to ensure additional protections for adolescents when self-consent is allowed, and to withdraw procedural requirements for the community endorsement of self-consent strategies.

Termo de assentimento: participação de crianças em pesquisas

Abstract The Resolution 466/2012 of the National Council of Health establishes the term of assent as compulsory for research carried out with children. However, the resolution presents the definition of assent without specifying the terms necessary for the document. This gap makes current and pertinent the approach of this topic by this study, which aims to discuss the participation of children in research. The results present a theoretical framework from which we can reflect on the ethics of Research with children, considering their vulnerability, which can lead to irreparable situations. We conclude that the theme must remain in the academic and professional debates since, on top of being a dynamic reality, this population segment has many specificities.

Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies. Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi-site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. We included families of children, age 2-5years, participating in SEED (n=5696) during 2007-2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non-ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed-effects models to evaluate associations of each reason with group and demographics, using POP as reference. Participants gave 1-5 reasons for participation (mean=1.7, SD=0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49-3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61-2.29) or suspected ASD (OR 3.67, 95% CI 2.99-4.50) and non-ASD DD (OR 1.80, 95% CI 1.50-2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. We identified meaningful differences between groups in parent-reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.

On, to, with, for, by: ethics and children in research

ABSTRACT The ethics of the participation of children in research have attracted the attention of childhood researchers for thirty years. By analysing central scholarly work in childhood sociology and in early childhood education research, the aim of this paper is to unfold, but also queer how ethics are articulated within literature that discusses children in research. Through the methodology of tracing-and-mapping, a map is constructed that displays how children in research are articulated in relation to the prepositions on, to, with, for and by. The map shows how these prepositions form a value scale, underpinned by certain philosophical assumptions about ethics. By relating this to a randomized control trial (RCT) study performed in Swedish preschools, the paper highlights the fact that it is not necessarily more ethical if the research is done by children, than on children. This contributes to a renewed and extended reflection on ethics, that throughly problematize a placing of research on a ‘scale of ethics’ – ranging from bad to good.

The participation of children in social research. Introduction to the issue

The perspective of childhood studies has existed in science since the 1990s. Currently, it is considered as a paradigm. The article concerns one of the assumptions of this theoretical orientation – the participation of children in research. The analysis of the concept includes both positive and critical stances expressed in the subject literature. The text contains an analysis of the main assumptions of childhood studies and their relationship to the participatory approach to research. Moreover, it presents types of participatory research with children, considering the degree of their participation. The article refers to numerous examples of both research and specific techniques applied.

Understanding the child-doctor relationship in research participation: a qualitative study

BackgroundChildren have reported that one reason for participating in research is to help their doctor. This is potentially harmful if associated with coercive consent but might be beneficial for recruitment. We aimed to explore children’s perceptions of the child-doctor relationship in research.MethodsThis is a multicenter qualitative study with semi structured interviews performed between 2010 and 2011 (United Kingdom) and 2017–2019 (the Netherlands). Interviews took place nationwide at children’s homes. We performed a secondary analysis of the two datasets, combining an amplified analysis aimed to enlarge our dataset, and a supplementary analysis, which is a more in-depth investigation of emergent themes that were not fully addressed in the original studies. All participants had been involved in decisions about research participation, either as healthy volunteers, or as patients. Recruitment was aimed for a purposive maximum variation sample, and continued until data saturation occurred. We have studied how children perceived the child-doctor relationship in research. Interviews were audiotaped or videotaped, transcribed verbatim, and thematically analyzed using Atlas.ti software.ResultsIn total, 52 children were recruited aged 9 to 18, 29 in the United Kingdom and 23 in the Netherlands. Children’s decision-making depended strongly on support by research professionals, both in giving consent and during participation. Often, their treating physician was involved in the research process. Familiarity and trust were important and related to the extent to which children thought doctors understood their situation, were medically competent, showed support and care, and gave priority to the individual child’s safety. A trusting relationship led to a feeling of mutuality and enhanced children’s confidence. This resulted in improving their experiences throughout the entire research process. None of the participants reported that they felt compelled to participate in the research.ConclusionsThe child-doctor relationship in pediatric research should be characterized by familiarity and trust. This does not compromise children’s voluntary decision but enhances children’s confidence and might result in a feeling of mutuality. By addressing the participation of children as an iterative process during which treatment and research go hand in hand, the recruitment and participation of children in research can be improved.

Pushing the Limits of Child Participation in Research: Reflections from a Youth-Driven Participatory Action Research (YPAR) Initiative in Uganda

Background: Violence against children (VAC) in Uganda is recognized as an urgent dilemma; however, most research has been quantitatively oriented and has seldom involved children in the research process. Objective: We discuss what we learned about child participation in the research process as a means of informing ethical praxis in future child- and youth-led research initiatives. As an overarching aim of this paper, we utilize our engagement with YPAR as a springboard to reflect on methodological best practices for VAC research that involve children themselves as part of a movement to democratize the research process. Participants and Setting: The study includes street-connected children (40), sexually exploited children (19) and domestic workers (34) in Kampala. Methods: The YPAR team led participant observation, 52 semi-structured life history interviews, 31 auto-photographic exercises, and 4 focus groups. All data collection, analysis and dissemination activities were led by the YPAR team including four Ugandan street-connected youth between the ages of 16–25 and two Ugandan university-trained youth researchers. Results: The results are framed as a methodological reflection regarding the complexities and transformative potential of including children as researchers in the framework of YPAR. Conclusions: We urge scholars to create spaces for sustainable YPAR movements, both in academic and policy arenas, and to design participatory initiatives that prioritize knowledge produced by and for the improvement of children’s lives globally. We encourage challenging traditional, extractive research practices through participatory approaches that carve out spaces for child participation in research.

Assent and consent in adolescent research: teachers’ perspectives from a developing country

Teachers play a vital role in facilitating research in schools. However, teachers' views of informed consent/assent for children participation in research in the Middle East have not been investigated. In this study, focus group interviews were conducted to understand high-school teachers' perspectives toward adolescent assents and consents. The teachers indicated that parent consent is important and should be coupled with sufficient information about the research study. The teachers added that assent is most important for children above 13 years old. Conversely, the teachers believed that parent approval is only important for invasive (such as research involves blood withdrawal) but not simple procedures. Most importantly, for procedures that are considered simple, part of the teachers do not acknowledge the significance of parental approval, such as body weight, or beneficial, such as new treatment. The results indicate that some of the teachers’ views were consistent with proper conduction of pediatric research. However, other views were worrisome and might warrant further studies and actions. Risks related need to be assessed and policies needs to be developed in order to ensure the proper conduction of pediatric research.

Not quite herculean, but pretty darn close: the hazards of finding and recruiting child research participants

Not quite herculean, but pretty darn close: the hazards of finding and recruiting child research participants

Assent and consent in pediatric and adolescent research: school children's perspectives.

BackgroundSchool students’ views and perceptions of informed parental consent and child assent about child participation in research in the Middle East are not known.MethodsFocus group interviews were conducted to understand high school students’ perspectives toward child and adolescent assents and consents in research including the importance of, and depth of information needed in consent and assent, and perception toward written vs verbal consent and assent.ResultsThe majority of students agreed that it is necessary to take parental approval and that they would not participate in research if their parents refused. Furthermore, the majority of male students agreed that if the research requires only questionnaires to be completed, then child’s approval is sufficient whereas measures, such as blood sugar screening required approval from both the parent and child. Females believed it is enough to provide parental consent to participate in research unless information provided is adequate, then child approval is enough. All students stressed the importance of including detailed information; however, parental consent needs to have more detailed information than child assent.ConclusionParts of the students’ perceptions were congruent, whereas other views were not congruent with proper conduct of pediatric research. Such a situation warrants further research and actions.

Mask-Making and Drawing as Method: Arts-Based Approaches to Data Collection With War-Affected Children

Globally, the numbers of children living in conflict zones and displaced by war have risen dramatically over the past two decades, and with this, scholarly attention to the impacts of war on children. More recently, researchers have examined how war-affected children are being studied, revealing important shortcomings. These limitations relate to the lack of child participation in research, the need for researchers to engage children in the research process as “active agents” rather than “passive objects” under study, as well as the need for researchers to pay closer attention to ethical dilemmas associated with researching war-affected children. To address these realities, innovative research methods that can be adapted across diverse sociocultural contexts are warranted. In light of these shortcomings, our research team integrated two arts-based methods: mask-making and drawing, alongside traditional qualitative data collection methods with a particularly marginalized population of young people: children born in captivity within the Lord’s Resistance Army in northern Uganda. In this article, we provide information on the context of northern Uganda. We describe how the use of mask-making and drawing was used as data gathering tools and the ways in which these arts-based methods had important benefits for the research participants, researchers, and impacted on the validity of the research as a whole. We propose that the use of these participatory visual methods enriched the themes elicited through more traditional methods. The article describes how these arts-based mediums fostered community building among children typically excluded from their communities and were successful as a tool to build trust between participants and the research team when exploring sensitive topics. The article concludes with implications for future research with war-affected children.

Medical Research Involving Children – Giving Weight to Children’s Views

The quality of health care for children depends much on the availability of relevant results from medical research with children as subjects. Yet, because of their vulnerability and assumed incompetence to take part in decision-making, children have often been excluded from taking part in medical research, so as to prevent them from harm. Empirical data on children’s competence to consent to such research used to be rare, but recent developments in this field have created more insights in the myths and realities concerning minor patients’ capacities to decide on medical research participation. Against the background of relevant international, European and domestic legal frameworks concerning the rights of children as participants in medical research, this article goes into instruments such as MacCAT-CR, a semi-structured interview format useable as a competence assessment tool for clinical research involving children. On the basis of this, several recommendations are defined to enhance such research, as these may do sufficient justice to the health interests and the capacities of children, while at the same time supporting researchers and child research participants when facing decisions about pediatric research options.

Distinctiveness in the Commercial Sexual Exploitation of Children in Sub-Saharan Africa: A Review of the Literature

ABSTRACTResearch on the commercial sexual exploitation of children (CSEC) in sub-saharan Africa was considered sparse and fragmented. Today, a substantial number of studies are available on CSEC in the region. A total of 92 studies were selected and reviewed. Electronic database and manual searches were used to locate the studies. First, regarding the quality of the studies, several themes emerged, including (a) inadequate description of ethical considerations in some studies, (b) substantial participation of children in research on CSEC in the region, and (c) the use of participatory research strategy with children. Second, the findings show not only that most victims of CSEC have agency over their sexual transactions but that they also live with their families. Other distinctive aspects of CSEC in sub-saharan Africa include limited presence of pimps in CSEC and lack of research on mental health issues among child victims. The review challenges some key knowledge in the mainstream literature on CSEC. It points to the importance of giving consideration to social and cultural factors in research on CSEC. The review also calls for ethical considerations and robust monitoring standards in any research on CSEC in the region and beyond.

Ethical Considerations in Qualitative Research with Children's Participation

Ethical Considerations in Qualitative Research with Children's Participation

Informed consent in paediatric critical care research--a South African perspective.

BackgroundMedical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources.Ethical oversight is essential for safe, appropriate research conduct. Informed consent by the parent or legal guardian is usually required for child research participation, but obtaining consent may be challenging in paediatric critical care research. Local regulations may also impede important research if overly restrictive.By narratively synthesising and contextualising the results of a comprehensive literature review, this paper describes ethical principles and regulations; potential barriers to obtaining prospective informed consent; and consent options in the context of paediatric critical care research in South Africa.DiscussionVoluntary prospective informed consent from a parent or legal guardian is a statutory requirement for child research participation in South Africa. However, parents of critically ill or injured children might be incapable of or unwilling to provide the level of consent required to uphold the ethical principle of autonomy. In emergency care research it may not be practical to obtain consent when urgent action is required. Therapeutic misconceptions and sociocultural and language issues are also barriers to obtaining valid consent.Alternative consent options for paediatric critical care research include a waiver or deferred consent for minimal risk and/or emergency research, whilst prospective informed consent is appropriate for randomised trials of novel therapies or devices.SummaryWe propose that parents or legal guardians of critically ill or injured children should only be approached to consent for their child’s participation in clinical research when it is ethically justifiable and in the best interests of both child participant and parent. Where appropriate, alternatives to prospective informed consent should be considered to ensure that important paediatric critical care research can be undertaken in South Africa, whilst being cognisant of research risk. This document could provide a basis for debate on consent options in paediatric critical care research and contribute to efforts to advocate for South African law reform.