Ethics and Integrity in Research with Children and Young People

Grace Spencer, Grace Spencer

• Publisher: Emerald Publishing Limited
• Year: 2021
• ISBN:
  9781800434028
• Topic: Social Sciences
• Subtopic: Social Science Research & Methodology
• Index: Social Sciences

The rapid expansion of research with children and young people has compelled researchers to engage carefully and critically with the ethical aspects of their research, including considering the best ways to ensure children's meaningful participation in research in ethically sensitive ways.

This international and multi-disciplinary edited collection unpacks some of the ethical complexities of conducting research with children and young people. The chapters in the volume offer an applied perspective to navigating contemporary and complicated ethical issues that can arise in the field of childhood and youth-centred research. The volume moves beyond a focus on standard, procedural research ethics processes and principles to expose some of the situated ethical moments that researchers grapple with in everyday research practice.

Offering a guide for researchers around the importance of developing ethical reflexivity, and the obstacles to achieving it, this volume raises new debates around research ethics while sustaining pragmatic guidance for future research developments that can support children and young people's participation in research.

PART I

CHILDREN AND YOUNG PEOPLE’S PARTICIPATION IN RESEARCH – NAVIGATING TRICKY ETHICAL MOMENTS

CHAPTER 1

BEYOND AGREE OR DISAGREE: A CONSENT STORY AND STORYTELLING FOR INDONESIAN CHILDREN

Fitri Arlinkasari, Debra Flanders Cushing and Evonne Miller

ABSTRACT

Researchers face many ethical challenges when conducting research with children. Ethical issues can be even more significant when researchers work with children from low-income urban settings in the Global South. This chapter presents reflections on research conducted with children aged 6–12 years old who live in Jakarta, Indonesia. Underpinned by the new sociology of childhood, the study was designed to gather these children’s perspectives on child-friendly public spaces in their neighbourhoods. A range of qualitative methods were used including child-led tours, drawings, observations and interviews. As part of the study, the authors developed and reflected on the use of story and storytelling to deliver the research information and obtain the children’s consent to participate. The authors’ experience demonstrates that story and storytelling supported children’s competence and engaged them in a meaningful informed consent process. This approach is especially relevant for children with low literacy skills and whose parents or caregivers may not be available to help children decide on their participation in research. The chapter concludes with recommendations for effectively approaching this ethical challenge in future social research with children from similar backgrounds.

Keywords: Ethics; children; urban poverty; storytelling; narrative–interactive approach; Indonesia

INTRODUCTION

The United Nations Convention on the Rights of the Child (UNCRC) in 1989 emphasises the rights of the child to be heard. Article 12 of the UNCRC explicitly states a child’s right to express their views and stresses that they have the opportunity to be heard in decisions that affect their lives. Since then, perspectives on children and childhood have shifted from focussing on children’s ‘vulnerability’ to recognising them as social agents (Alderson & Morrow, 2004). Childhood studies from this perspective have, thus, sought to encourage children’s active participation in research. These advances position children as competent informants about their own lives and lived experiences (Prout, 2000).

This commitment to involving children in decision-making processes has enabled children’s broader participation in research – triggering an expansion of participatory, child-centred techniques that directly engage children in data collection and analysis (Clark, Carr, & Moss, 2011; Gray & Winter, 2011; Punch, 2002). While numerous reports detail the relative successes and challenges of child-centred research methods, relatively little is known about how the same approaches can be developed to include children in a research project from the outset of the project, particularly during the informed consent process.

The question about how, and from whom, informed consent should be ascertained is frequently debated in the research literature and by research ethics committees. Adult gatekeepers (e.g. parents, teachers and social workers) are critical actors in the permissions process, often dictating children’s participation in research (Balen et al., 2006; Heath, Charles, Crow, & Wiles, 2007; Morrow & Richards, 1996). However, other research has identified the importance of enabling children’s agency as part of the consent process, with evidence of children as young as 5 years old being able to give and negotiate their consent (Flewitt, 2005; Hood, Kelley, & Mayall, 1996; Lindsay, 1999) and as part of respecting their rights to have a say on their own lives and matters that affect them (UNCRC, 1989).

In the Indonesian context, conducting ethical research with children can be problematic because of a general lack of awareness and underdevelopment of ethical research with children (Kasiyarno, 2017, as cited in Yulianingsih, 2017). To date, most Indonesian institutions have adopted ethical guidelines produced by the Indonesian Health Ministry. However, these guidelines are typically grounded in the clinical tradition and, thus, may not adequately capture the ethical complexities of social science research (Kumpunen, Shipway, Taylor, Aldiss, & Gibson, 2012; Mappaware 2016). Ethical research guidelines in Indonesia also tend to adopt international documents that use English-written concepts in developing ethical guidelines (Mappaware, 2016). Many of these English terms, such as ‘confidentiality’, do not directly translate into Indonesian, which may inhibit the practical use of this information for researchers in the field.

However, in recent decades, there have been extraordinary developments globally in making ethical guidelines more relevant for social scholars, especially those who work with children (Alderson, 2007; Allen, 2007). In particular, scholars who have experienced challenges in seeking children’s consent have developed innovative methods to support children’s consent. Amongst these new methods, the narrative–interactive approach developed by Mayne, Howitt, and Rennie (2015) was particularly useful for this study context and when working with children in low-income neighbourhoods in Indonesia. Mayne’s approach involves telling children a factual story about the research and details of their participation and then re-telling that story with the children to stimulate shared knowledge. This approach has been effective in engaging children in discussions about the research and ethical concepts, supporting their autonomy and decisions regarding whether to participate (Mayne et al., 2015).

Our research explored the effectiveness of designated child-friendly public spaces in Indonesia (known as Ruang Publik Terpadu Ramah Anak [RPTRA] sites) with 34 children aged 6–12 years old. Participating children resided in low-income areas, and several had low literacy skills. Consequently, these children struggled to read and comprehend written information about the study. Parents or caregivers also lacked the knowledge and time to support their children in understanding the research information. Because of this, we modified our approach by telling children a story about the consent process.

In this chapter, we discuss the development and use of a narrative–interactive approach and reflect on how story and storytelling activities aided children’s informed consent. First, we detail some of the documented ethical challenges associated with gaining children’s consent. We then describe how these challenges can offer new opportunities to develop innovative research methods to support children’s informed consent. We conclude by offering some recommendations for researchers working in similar areas of enquiry.

THE CHALLENGES OF CHILDREN’S CONSENT

Gaining informed consent from children is often more problematic than ethical guidelines suggest (Gallagher, Haywood, Jones, & Milne, 2010). One of the biggest challenges is the tendency to view children as incompetent and lacking the maturity to make autonomous decisions (Alderson & Morrow, 2004; Gallagher et al., 2010). In contrast, when researchers position children as ‘rational, competent, autonomous agents who exercise control over their lives’ (Gallagher et al., 2010, p. 479), possibilities for gaining children’s informed consent are enabled. However, as part of this process, three conditions must be met. First, children must understand information about a research project; second, in light of that information, children need to reason about the likely implications of their participation; and third, children must independently make a decision as to whether they want to participate and explicitly signal this decision in some way (Gallagher et al., 2010).

Children have competencies that differ from those of adults in terms of decision making. Competence is not solely related to age, but is also based on maturity, understanding and intelligence (Cocks, 2006). These factors have consequences for the ways in which children comprehend and interpret critical ideas linked to informed consent. For example, Broome (1999) finds that children as young as six years old can develop basic understandings of a research project’s purpose and procedures. However, children find it more difficult to grasp three concepts associated with informed consent: (1) voluntariness, meaning that they have the right to withdraw at any time; (2) confidentiality, meaning that their privacy is recognised within clear boundaries; and (3) risks, meaning the likelihood that they will experience harm during the research (Bray, 2007; Hughes & Helling, 1991).

In addition to children’s understanding of ethical concepts, Cocks (2006) posits three further elements of a meaningful informed consent process: (1) the presentation of information; (2) the child’s comprehension of the research and their role within it; and (3) the child’s response to the information provided. The process of informed consent is considered meaningful when the presentation of information adequately informs children without overloading them. Researchers also need to ensure that they support children in making their own decisions and do not inadvertently ‘deceive’ children by omitting certain information or shielding them from the risks of their participation. Alderson (1995) reminds us that overprotecting children from these risks can be as harmful as silencing and excluding them from research altogether.

Ethical research should also ensure that children understand the research purpose and their role within it (Cocks, 2006; Hughes & Helling, 1991). In addition to providing age-appropriate information, researchers must give children opportunities to understand the information presented to them and offer opportunities for them to discuss the study and their involvement (Hartcourt & Conroy, 2011). Finally, researchers should invite children to document their responses to the information based on their understanding of it. Researchers can influence children’s decisions, either directly or indirectly, because of the inherent power imbalances between adult researchers and younger participants (Edwards & Alldred, 1999; Hughes & Helling, 1991). Hartcourt and Conroy (2011) state that researchers must emphasise the voluntary nature of children’s participation and the fact that they can negotiate their consent, including withdrawal, in a way that feels comfortable to them. In addition, researchers must be sensitive to whether children want to withdraw from an entire research project, or refuse to participate at certain times or in certain activities (Hughes & Helling, 1991).

NARRATIVE–INTERACTIVE APPROACH: A STRATEGY TO SUPPORT CHILDREN’S CONSENT

Facilitating children’s informed consent can be challenging in the absence of any practical guidelines on how best to do this. Adult researchers need to be reflective in their approaches and relationships with children. Gallagher et al. (2010) offer some useful questions to help researchers reflect on their consent processes:

Do children understand the word [consent]? Is the activity of consenting part of their everyday lives? Do they believe that consent is possible within the research setting? (p. 480).

The narrative–interactive technique can support the informed consent process and by combining simplified written information with audio and/or visual aids (images, cartoon, flipchart and video), researcher–participant discussions, and online/computer-assisted and activity-based methods (pie charts, storyboards, puzzles, scrapbook) (Bray, 2007; Kumpunen et al., 2012; Mayne et al., 2015). Importantly, materials of this kind should be combined with active communication between children and the researcher (Rogoff, 1990). The narrative–interactive approach encourages the use of language that children can understand to stimulate discussion of shared meanings. The interaction between children and adults not only makes children more awar...

Table of contents

• Cover
• Title
• Introduction: Ethics and Integrity in Research with Children and Young People
• Part I. Children and Young People’s Participation in Research – Navigating Tricky Ethical Moments
• Part II. Adult/Child Power Relations and Positionality – Ethics, Emotions and the Building Trust
• Part III. Children and Young People as Knowledge Producers and the Ethics of Representation and Research Dissemination
• Conclusion: Meeting the Ethical Challenges in Research with Children and Young People
• Index