The Narrative Approach to Informed Consent

Empowering Young Children’s Rights and Meaningful Participation

Fiona Mayne, Christine Howitt

• Publisher: Routledge
• Year: 2021
• Print ISBN:
  9780367352257
• eBook ISBN:
  9781000456189
• Topic: Social Sciences
• Subtopic: Education General
• Index: Social Sciences

The Narrative Approach to Informed Consent: Empowering Young Children's Rights and Meaningful Participation is a practical guide for researchers who want to engage young children in rights-based, participatory research. This book presents the Narrative Approach, an original and innovative method to help children understand their participation in research. This approach moves away from traditional paper-based consent to tailor the informed consent process to the specific needs of young children. Through the Informing Story, which employs a combination of interaction, information and narrative, this method enables children to comprehend concepts through storytelling. Researchers are stepped through the development of an Informing Story so that they can deliver accurate information to young children about what their participation in research is likely to involve. To further inform practice, the book documents the implementation of the Narrative Approach in four case studies demonstrating the variety of settings in which the method can be applied.

The Narrative Approach to Informed Consent addresses the rights of young children to be properly researched, expands opportunities for their active and engaged research participation, and creates a unique conceptual ethical space within which meaningful informed consent can occur. This book will be an invaluable tool for novice and experienced researchers and is applicable to a wide range of education and non-education contexts.

Part 1 Theoretical and methodological underpinnings of the Narrative Approach

1 Positioning the child as competent in the research process

10.4324/9780429330100-3

Fiona Mayne and Christine Howitt

Introduction

Since emerging in the 17th and 18th centuries, the concept of ‘children’ and ‘childhood’ has shifted significantly (Aries, 1962). Originally viewed as miniadults and then as quintessentially vulnerable, immature and in need of adult protection, the ratification in 1989 of the United Nations Convention on the Rights of the Child (the Convention) (United Nations, 1989) has led to the modern view of the child as both needing protection and being capable. This sliding scale, in which a child requires less protection as the child becomes more capable, draws together both of the early concepts of childhood. In this post-Convention era, the idea of adults and children belonging to distinct groups has been replaced by children being viewed as ‘people’ (Kirk, 2007) and on children as the primary authorities on their own lives (Clark & Moss, 2011). Children are celebrated for who they are rather than who they will become (Palaiologou, 2012), with the focus shifting to the child’s current and emerging capabilities rather than the “adult-like qualities they still lack” (Broström, 2012, p. 258). This relatively recent orientation of children as social actors reflects the new sociology of childhood, which embraces children’s rights and attributes value to children’s perceptions and opinions. In this paradigm, children can coconstruct their own learning (Smith et al., 2005), develop personal narratives (Alderson, 2005), interpret their world and participate in decisions that affect them (Mayall, 2002) as active and competent participatory agents in their own right (Mayall, 2000).

Twenty-first century children now have a range of rights that seemed inconceivable prior to the Convention. This chapter, in four sections, examines current ideas about children as competent actors within the research process and reviews the literature on children’s rights and young children’s participation in research, along with the complex considerations around informed consent and competence. The first section describes the rights of the child, examining the Convention’s Articles 12 and 13 in detail. The second section describes participatory research. The third section presents the informed consent process, highlighting the importance of information, understanding and response. The final section of the chapter describes the competence of children in the informed consent process.

Rights of the child

The landmark 30th anniversary of the adoption of the Convention (United Nations, 1989) by the United Nations General Assembly on 20 November 1989 was celebrated in 2019. With all nations but one ratifying the Convention, it is now recognised as one of the most visionary and universally accepted human rights agreements of all time and has become a pivotal point in the history of childhood. There is little doubt that the Convention has impacted how the world thinks about children as, in 1989, at the time the Convention was ratified, children were still viewed as yet-to-develop ‘becomings’ rather than as ‘beings’ with interests, abilities and aspirations (Freeman, 2014). Now entering the fourth decade of the Convention, the challenge is not only to protect the rights of children but also to find better ways to empower children to exercise these rights.

In terms of research involving children, although they lack full autonomy, the Convention becomes the starting point to consider children as holding rights equal to those of adults (UN Committee on the Rights of the Child, 2009). It has become the norm to consider children as eligible to be included in all aspects of research (Quennerstedt, 2014), to offer opportunities for children to participate and to have research protocols adapted to meet their interests and needs (MacDonell, 2007). These ideas are derived from a package of rights under the Convention that have become known as the ‘participation’ rights (Lundy et al., 2019). These include respect for the views of the child (Article 12); freedom of expression (Article 13); freedom of thought, conscience and religion (Article 14); freedom of association (Article 15); and the right to information (Article 17). The two that can be considered most relevant to children’s research and those that provide a framework for their participation include Articles 12 and 13. The first, Article 12 – Respect for the views of the child, states

1. [T]he child who is capable of forming his or her own views [shall be assured] the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
2. [T]he child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law.

Article 12 was originally concerned with children’s right to express views about matters that directly affect them, ensuring that their views are considered and providing children with opportunities to be involved in all decisions and actions that might affect them. The primary function of Article 12 was to ensure children had the right to be heard and that decision makers took account of their views (Henaghan, 2018). Over time, the meaning and application of Article 12 has evolved to conceptualise this ongoing process as ‘participation’. While the article’s intent remains, the emphasis has now shifted towards focusing on mutual respect between children and adults, sharing of information, discussion and learning about how different views can be taken into account to shape outcomes (UN Committee on the Rights of the Child, 2009).

The second key article that can be related to research is Article 13 – Freedom of expression, which states

[T]he child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.

Article 13 is fundamental to the concept of children’s right to be heard because it underpins the complementary ideas of holding and expressing opinions and seeking and receiving information. In contrast to Article 12, no response is required, because the emphasis is on creating a respectful environment in which children are free to express their opinions. Article 13 works together with Article 12 to establish that children possess participation rights and are entitled to exercise these rights in accordance with their evolving capacities (UN Committee on the Rights of the Child, 2009).

This right to participate is a guiding principle underpinning the Convention and has implications for each of the other rights. As a living and evolving instrument (Freeman, 2014), the Convention clearly sets the parameters for the ongoing interpretation of a child’s right to participate:

The practical meaning of children’s right to participation must be considered in each and every matter concerning children. As a fundamental right of the child, the right to participation stands on its own; it requires a clear commitment and effective actions to become a living reality and therefore is much more than a simple strategy.

(UNICEF, 2014, para 2)

A child’s right to participate in its intended sense – as a living reality – is dependent on a clearly defined and ongoing commitment by those in positions of power and is inextricably coupled with actions that have an effect. Thus, enabling a child’s right to participate involves dialogue with adults, the sharing of perspectives, empowering children with a sense of responsibility and engaging with them as citizens and actors of change (UNICEF, 2014, para 1). When children are provided with opportunities to participate, not only do they develop the skills necessary to exercise this entitlement meaningfully, but the potential also exists for children’s views to enrich decision-making processes, resulting in better informed and more relevant outcomes. Moreover, a child’s development, including confidence, communication skills, identity and sense of autonomy can be radically impacted by experiencing the right to participate, with development of competencies such as independent decision making, increasing in proportion to the opportunities that are afforded to children (Lundy et al., 2019). These benefits to children highlight that participation rights have far-reaching implications for children and must be considered more than a mere protocol or strategy.

While not mentioned specifically in the Convention, children in the early childhood stage (birth to 8 years) are holders of the full spectrum of children’s rights, and all of the related ideas about participation apply equally to them. Given that a gap was acknowledged in the original iteration of the Convention, United Nations General Comment No. 7: Implementing Child Rights in Early Childhood (2005) was developed as a supporting document to the Convention to address the specific rights of young children and to generate a deeper understanding with regard to requirements of young children. The Comment clarifies that a young child “must not only be regarded as a rights-holder in an abstract sense, but that the young child must also be accepted as an active participant in the routine processes of daily life” (UN Committee on the Rights of the Child, 2006, p. 33)

This served to hasten the shift from viewing young children as ‘infants’, which literally means unable to speak or having no voice, towards a recognition that even the youngest children have voices and are capable of forming sensible and coherent views (Alderson, 2008). In the past, young children were regarded as objects of benevolence, but the current view is far more equitable and inclusive in that a young child is considered to be “a rights-holder as is the older child and, indeed, every human being” (UN Committee on the Rights of the Child, 2006, p. 27). Thus, the General Comment promotes young children as full actors in their own development and acknowledges the early childhood period as critical for the foundations of personality, individual talents, and mental and physical abilities (UN Committee on the Rights of the Child, 2006). General Comment 7 contributes to the implementation and realization of young children’s participation rights by advocating that appropriate opportunities are to be actively promoted and created for young children to exercise their right to freedom of expression, thought, conscience, religion and privacy in their daily lives.

Participatory research in early childhood

In terms of young children’s participation in research, General Comment 7 (2005) also draws attention to the need for increased focus on (and capacity building) in early childhood research; greater generation of theory is needed, particularly in the area of evidence that is derived from young children’s active participation in research. This is no small task because “early childhood research is conceptually and methodologically complex, with different disciplinary and professional lineages, multiple methodological and analytic approaches and multiple stakeholders”, as well as additional complexities such as research contexts, governance cultures and issues around perceived child competence (Farrell et al., 2016, p. 3). Against this backdrop, research practices, in what has come to be known as the field of early childhood research, continues to expand and evolve. The field now embraces great diversity and includes large-scale longitudinal quantitative research in which young children play a nominal role through to small-scale localised qualitative studies in which young children are the major players, along with transformative research that tackles issues relevant to children, family and communities, and early years practitioner research (Farrell et al., 2016).

Underpinning the General Comment, the Convention provides the foundation on which to build a participatory approach to early childhood research that stands apart from traditional methods. By embracing basic human rights for all children independent of their age, this rights-based approach draws on the principles of self-determination (Article 1); nondiscrimination (Article 2); the best interests of the child (Article 3); the right to life, survival and development (Article 6); and freedom to participate and be heard (Article 12) (Smith, 2015). In addition, it establishes an expectation of meaningful participation by requiring adu...

Table of contents

• Cover Page
• Half Title Page
• Title Page
• Copyright Page
• Table of Contents Page
• List of figures Page
• List of tables Page
• Invited contributor biographies Page
• Foreword Page
• Acknowledgements Page
• Introduction Page
• PART 1 Theoretical and methodological underpinnings of the Narrative Approach
• PART 2 Developing and implementing an Informing Story
• PART 3 Adapting an Informing Story
• PART 4 Future directions for the Narrative Approach
• Index