Introduction

Judith Loveridge

Children and young people have been the focus of research for many years.¹ The plethora of theories of learning, motivation, maturation, and the sociology of childhood has been accompanied by extensive empirical research in both natural and experimental environments to investigate various hypotheses about development, learning and educational interventions. Since the ratification of the United Nations Convention on the Rights of the Child (UNCROC, 1989) there has been a major shift from seeing children and young people as passive recipients to viewing them as active participants in their own learning and development. In the western world, accompanying this change, there has been the development of a raft of policies and legislation that promote 'child voice' (Lewis, 2010) and the promotion of ideas about children being actively involved in decisions and processes concerning their lives. Consequently, the research literature concerning children and young people reflects a growing awareness of the important and unique challenges relating to involving participants in the research process who are not yet adults and whose repertoires may require very different approaches to research about their learning and development (Freeman & Mathison, 2009). The simultaneous burgeoning and growing sophistication of electronic technologies and diverse communication pathways has also generated multiple ways to construct, gather, store, represent, and disseminate data and findings. The ethical implications of these new opportunities for research in general and with children and young people in particular have lagged behind the pace at which the electronic environment is developing and becoming widely accessible.

This report has been written, within this changing research environment, in response to a request from the Ministry of Education Aotearoa New Zealand to develop a document that examines theory, practice and ethical considerations when involving children and young people as participants in research and evaluation projects. As will become evident throughout the report, it is not possible to provide definitive answers to many of the questions and issues that arise in this area. We have instead attempted to 'open up' some of the ethical, theoretical and methodological issues. It is intended that the report will promote informed, mindful, and respectful practices that also meet national and international standards for methodological rigour.

Initial questions and approach to the literature

The following questions guided our initial explorations. As we searched the literature it became clear that some of these questions have been explored very fully whilst others remain areas in which there is not yet a lot of guidance.

• Under what conditions is it appropriate to involve children and young people in research and evaluation in educational settings?
• Does the research need to benefit individual children or children in general? If research can be done with older children should it only be done with older children?
• What factors should influence a decision to also include younger children?
• What are the particular ethical issues associated with involving children and young people in research and evaluation as opposed to adults?
• What are the particular issues arising from involving children and young people in research and evaluation in educational settings as opposed to other settings?
• What are the issues that are relevant to particular educational settings such as infant and toddler centres, bilingual services and Youth Justice schools?
• What are the issues involved in researching with children from different cultural groups, particularly Māori, Pasifika and Asian?
• What are the issues involved in researching with children who have special education needs?
• What are the issues involved in researching with children from linguistically diverse backgrounds?
• Are the issues the same for involving them in research as they are for evaluation?
• What are the issues involved in using different types of methods with different age groups or groups with particular characteristics or in different kinds of educational settings?
• What are the issues involved with research that involves children and young people expressing their views through ways other than written or oral language, such as art, music or drama?
• What kinds of research designs and data collecting and generating tools have worked particularly well with children and young people with particular characteristics?
• What kind of involvement is required with family and whānau when involving children and young people in research and evaluation in educational settings?
• How does this vary across different educational settings and with children from groups of particular characteristics?

Given the extensive literature on children and young people, we have focused on material published from 2002 to 2009, though we have also included references to earlier work, which is considered to be seminal by those working in this area and/or referenced frequently. We have attempted to scan the literature in a way that allows discussion of a broad range of philosophical, methodological, and ethical issues but also provides specifics about what researchers have actually done, and, where possible, to indicate what has worked and what has not. We do not draw heavily on the literature concerned with children and young people as researchers but we do reference literature addressing key aspects of engaging children and young people actively in research.

Construction of exemplars

The Ministry of Education indicated that this document is intended to inform the practice of Ministry and other educational researchers. To facilitate this goal, alongside our scan of the literature, we also present exemplars of New Zealand research that bring to life, contextualise, and 'exemplify' the debates about and pragmatic responses to involving children and young people in research in educational settings. In choosing the exemplars we followed a number of criteria. We endeavoured to find examples of research across the different educational sectors (early childhood, primary and secondary) which involved both quantitative and qualitative methodologies. We also looked for research that related to particular groups of children and young people, such as children and young people who are Māori, or Pasifika or Asian or with disabilities or hard to reach. The research also needed to be accessible to people reading this report, so was required to be either published in peer-reviewed journals or readily available from university libraries or the Ministry of Education. Once we had selected the exemplars, we then approached the people who had conducted the research to invite them to participate in generating the exemplars. Not all those who were approached were able to be involved in the process at that time so other exemplars were sought. It was more difficult to find pieces of research that fitted all of these criteria than we had anticipated. Although many titles of papers, reports or chapters suggest that they involve research with children and young people, frequently they are about conceptual aspects of doing research rather than reporting actual research data or they involve seeking the opinions of others about things concerning children and young people but do not involve children and young people themselves.

To construct the exemplars, members of the team gleaned as much information as possible about the research from published sources and this was written up according to a template that touched on key aspects of the research process. The people who had conducted the research were then interviewed by telephone. The questions asked during the interview sought clarification of information taken from publications but also asked about issues that had emerged from our scan of the literature as ones that were challenging and engaging other researchers. The material from the interviews was then interwoven with the material from published sources. The exemplar was then sent to the researcher for him or her to check and to amend as he or she felt appropriate before it was released for publication in this report.

The exemplars are quite different from each other, and this is in part owing to the nature of the different projects and their emphasis on different aspects of doing research with children and young people. They are also pieces of research that took place in educational contexts where things do not necessarily go to plan owing to events and ongoing commitments in those contexts that are not related to the research. However, we believe that the variations in the exemplars add to their value in this report. The researchers who generously agreed to their research becoming exemplars for this project have been willing to share what has worked and what did not work. These aspects of research are not frequently revealed in published articles but this information is extremely useful for other researchers.

Unresolved issues but a greater appreciation of the complexities

After an initial period of uncritical enthusiasm, involving children and young people in research is now at a more reflective and questioning phase. As will become apparent throughout this report, this phase has yielded a number of unresolved issues about involving children and young people in research and evaluation. As more research has actually involved children and young people there has been a recognition that their involvement is more philosophically, politically and methodologically complex than first appears. For example, a recent article by Lewis (2010) titled Silence in the context of "child" voice discusses the tensions for researchers who are caught between supporting authentic 'child voice' research and having to work in contexts that may have a research agenda that is predetermined, or ethical review and funding processes that do not allow adequate time for consulting with children or young people, or inadequate funding for the time that some methodologies require when working with children and young people in educational contexts etc. Lewis notes that in a climate in which the promotion of 'child voice' has become a moral crusade, if the difficulties and limitations are not discussed then "balanced debate about the practice of 'voice' becomes silenced" (p.16). She then goes on to question the extent to which researchers are able to recognise, note, respond to, interpret and report a child's silence in a context that is so focused on 'child's voice' in an attempt to realise the right of children to express a view in matters that concern them. She advocates for research to be much more explicit and transparent about the way that children's voices and silences are responded to and reported in research. There are many other issues like this that require researcher reflexivity and time to resolve in particular contexts that are explored in each of the chapters.

Structure of this report

There are differences in the impact of various research issues on children and young people at different ages and within the different sectors of the education system, from early childhood education to primary to secondary settings. Hence, this report is structured with different chapters focusing on each of the sectors. The exemplars that relate to each sector are located at the end of the chapter relating to a particular sector. There is also a chapter that focuses on doing research with children and young people who are Māori. This chapter has been positioned after the chapter relating to researching in the early childhood education sector so that the reader will have encountered some of the broader issues around researching with children before being engaged with the particular issues relating to children and young people who are Māori. It is hoped that this positioning will also alert readers to think critically about cultural issues as they read all the chapters. There is also a chapter on researching with children and young people with disabilities and this is located after the chapter relating to researching in the secondary sector so that the reader will already have become aware of issues that arise for children and young people across the sectors. However, there are also commonalities in certain issues and where possible we have cross referenced between the chapters so that those who read the report in a selective way will be alerted to where discussion of issues also takes place in other chapters or in other exemplars. The concluding chapter draws together some of the overarching themes that have emerged throughout the report.

There were many issues in common across all the chapters but the issue of consent for participation in research has been dominant in the literature. Researchers and/or those funding research frequently want definitive answers from those involved in ethical review of research or those involved in producing ethical guidelines about issues like if parental consent is required. If so should it be active or passive parental consent, and at what age is parental consent no longer required? The next section presents an overview of commonalities across strategies related to informed consent irrespective of age or educational setting. Later, each section of the report focuses on the different educational sectors and also includes examination of issues particularly relevant to negotiating informed consent of children and young people. Finally, the exemplars also provide further exploration of how researchers have approached these issues with children and young people at different ages and in different educational settings.

General issues about consent to participate in research

Informed consent is seen by many as the hallmark of ethical research. It is often described as a three-step process involving providing participants with adequate information (including their right to withdraw consent), checking that they have understood what they are agreeing to, and how their consent or refusal to participate is recorded. There has also been increased attention to enabling research participants to check the validity of their specific data. In addition, particularly for longitudinal research and qualitative approaches, checking for ongoing agreement throughout the different phases of the research has also been advocated.

Some argue that "informed consent is a largely unworkable process given that researchers can rarely—if ever—know the full extent of what participation may entail, or predict in advance all the possible outcomes of participation" (Heath, Charles, Crow, & Wiles, 2007, p. 404). Others question certain assumptions underpinning the informed consent process in regarding participants as independent, rational, autonomous beings who exercise control over their lives by making conscious choices (Gallagher, Haywood, Jones, & Milne, 2009). If children and young people are instead, or also, interdependent with others—peers, adults and even researchers—there may be strong if subtle peer group pressures and hierarchical relationship dynamics with parents, teachers and others operating in the context of early childhood education centres and schools that make it difficult to say no to participation. These same dynamics affect the role of parents and guardians in providing consent on behalf of their children.

Conroy and Harcourt (2009) make the point that phrases commonly used by researchers such as "I have come to get your permission", "I have come to get you to sign saying you agree to be involved in my research" or "I will take your photograph to say that you agree to help me" imply that there has already been some agreement reached, making it even more difficult for children and young people to decline the researcher's request. Gallagher et al. also suggest that children and young people are strategic and unpredictable so consenting may not be about rational choices but gaining favours or getting out of work. In Australia, the New South Wales Commission for Children and Young People (2008) also questions whether children (and adults) make decisions rationally. Instead, consent is seen as particularly vulnerable to expeditious decisions with "an eye to what significant others are doing" (p. 113) and the Commission asks: if this is the case, is consent a choice or a 'pseudo-decision' (p. 114)?

However, those engaging in debates about consent remain committed to finding a way forward. Increasingly, it is argued that finding the way forward does not involve simple, prescriptive solutions and using the 'right' techniques. Rather, it requires a more reflexive approach whereby researchers engage with the issues that are raised in their own work and the context in which it takes place (Gallagher, Haywood, Jones, & Milne, 2009). Finding the way forward also requires that researchers question their own conduct, experiences, values, and assumptions when shaping ethical decisions made throughout the research process, including those relating to consent or assent (Cocks, 2006).

Assent, consent and dissent

There is some confusion in the literature over the use of terms such as consent and assent. Lewis (2002) describes the distinction in the following way: "Consent may be given by the child or by another on the child's behalf for (a) the child to be interviewed or (b) the researcher to ask the child to be interviewed. Assent refers to the child's agreement to participate in the process when another has given consent… Consent is not in itself sufficient; informed consent/assent is needed" (p. 111). Coyne (2009) indicates that consent refers to a "person's voluntary positive agreement whilst assent refers to a person's acquiescence" (p. 2). She goes on to infer that consent is used where children are considered legally competent to consent, while assent is sought where they are not considered legally competent to consent (see discussion below regarding views on legal age regarding consent). This distinction is frequently alluded to in research with very young children or children and young people with disabilities. Alderson and Morrow (2006) use the term assent to refer to passive acceptance or non-refusal. They argue that only the term consent should be used in seeking agreement for research participation because the legal distinction between the two concepts is not as clear-cut as it may seem so that assent may be used wrongly to cover up a child refusing, or seeming not to refuse, to participate.

In contrast, Cocks (2006) argues that the term assent recognises the interdependence of the researcher and the researched. Assent implies that the researcher has a responsibility for ongoing monitoring of interactions with the child for evidence of agreement throughout the research process:

Assent is represented within the relationships between the researched and the researcher, by the trust within that relationship and acceptance of the researcher's presence. It removes the reliance on the child demonstrating adult-centric attributes such as maturity, competence and completeness; rather, it accepts the child's state of being. (p. 257)

These differing interpretations of assent support the importance of establishing the particular meanings authors attribute to these terms in their writing when evaluating their positions as well as the need for researchers checking throughout the research process that agreement to participate in research is ongoing.

Lewis (2002) notes that there is also strong agreement in the research literature regarding the need to acknowledge participants exercising their rights to informed dissent, that is, consciously declining to engage or respond to particular questions or activities. This may be difficult to recognise in children and young people with disabilities but ongoing dialogue with those who know participants well is advocated as a way of checking on whether or not the child or young person is assenting to ongoing involvement. Davis reports on how he had failed to recognise that a child's silence was not because of the child's disability but was a choice not to communicate (Davis, Watson & Cunningham-Burley, 2008). An individual's right to silence and to withhold access to aspects of one's world needs to be recognised before it can be respected.

Lewis and Porter (2004) highlight the following questions to address the issues raised in the literature around obtaining informed consent:

1. Does the research involve fully informed consent from participants?
2. To what extent is the participant able to give fully informed consent?
3. Is understanding of consent checked/tested?
4. Does the research involve assent from participants?
5. If others give consent, has the participant given assent?
6. Has an explicit distinction been made between assent and consent in relation to what is given?
7. Is consent/assent confirmed throughout the research?
8. Can potential participants opt out?
9. Have ways of checking for understanding of confidentiality/research purposes been explored?
10. Has a right to silence/privacy (informed dissent) been recognised?
11. Have participants, at appropriate intervals, been reminded of their right to withdraw? (p. 193)

Formal requirements regarding consent

Guidance for researchers regarding the formal requirements for seeking informed consent from children and/or their parents is not always readily available. Powell and Smith (2006) reviewed the ethical documentation from 10 tertiary institutions in New Zealand (eight universities and two polytechnics), eight of which are accredited by the Health Research Council. There was considerable variation in terms of how much reference was made to children and young people in the documentation. Their analysis of the documentation of informed consent provides an overview of what was required nationally in 2006 (see below for more detail). Because ethical codes are frequently being rewritten, researchers are cautioned to check current requirements at their institutions.

Members of institutional ethics committees are often asked by researchers about the age at which children can participate legally in research without parental consent. In reviewing the literature on the age of consent, it is important to keep in mind that the age of a 'child' versus an 'adult' can be defined differently in different countries or even within different states or provinces within one country. In the literature from England, Wales and Northern Ireland, in legal terms, the competency or capacity of a legal minor (ie, someone under the age of 18) to give consent is judged against a concept referred to as 'Gillick competency'. The concept arose in the context of consent in relation to medical interventions but is now used more broadly. Gillick competency "… is based on the assumption that a 16-year-old with 'sufficient understanding' can provide consent in their own right, and that under such circumstances a parent has no right to override their child's wishes" (Heath, Brooks, Cleaver, & Ireland, 2009, p.27). The Gillick ruling was considered important because of removing an age limit and substituting an emphasis on assessing competence and understanding. However, Coyne (2009) cautions that the Gillick ruling has not been tested in the courts in relation to children's consent to research.

In New Zealand, although there are laws that set ages at which children can or cannot engage in certain activities (see Ludbrook, 2009), there is no law stating that parental consent is necessary for a researcher to talk with a child nor stating a legal age at which children or young people can consent to participate in research without parental consent (Ludbrook, 21.9.2009, personal communication). Despite the absence of statutory provision, should a case concerning age of consent or lack of parental consent in a research context be litigated in court, it is likely that the common law principle (as restated in the Gillick case) would be applied. That is, where the child has attained an age and degree of understanding to make a decision that balances the risk of the procedure against the benefits and to make a rational choice, that child is able to consent on his/her own behalf. It is nonetheless important to distinguish between legal requirements and what a community of researchers believe is important for promoting ethical conduct. Further, different cultures may have different expectations around the concept of ethical conduct and consent to participate in research.

Cultural expectations about consent

In New Zealand, the presence of diverse cultures with differing traditions and values requires that researchers address cultural expectations around research processes, not simply fulfil statutory requirements. This is particularly important given that cultures seen as reflecting individualistic versus collectivist worldviews will have different approaches to issues such as consent.

Suaalii and Mavoa (2001) indicate that Pasifika young people are enmeshed in wider family groups in which ethical issues and the passing on of knowledge are articulated in terms of wider family and community, not within an individualistic framework. In this context, a form of passive parental consent (see discussion below) may not be appropriate. The nature of the research would be relevant to decisions about whether or not Pasifika young people would be considered competent to consent to participate. Adequate consultation with community members is seen as part of developing protocols to ensure appropriate cultural procedures inform the research (see primary school ethnographic exemplar). Rucklidge and Williams (2007) indicate that researchers working with Māori young people should also consider whether an emphasis on individual or family consent is appropriate. However, they also caution that it is inappropriate to make assumptions about the strength or orientation of an individual's cultural identity, so initial discussions about whether or not individual or family consent is appropriate should take place with the individual initially. Researchers should also consider whether they need to take advice as to whether hapu or iwi consent is also required (Hudson & Russell, 2009).

To date, the New Zealand research literature has not specifically addressed these issues regarding children and young people from Asian families and how their cultural values may shape expectations around consent processes in research. Williams and Cleland (2007) have written about the concerns and values of Asian people that may have implications for psychological practice, and some of these suggest issues that researchers should be sensitive to when seeking the consent of children and young people from Asian families. For example, family has paramount importance in Asian cultures, particularly with reference to the vertical and hierarchical structure where "one's status in the order is usually determined by age, gender, generation and birth order" (Williams & Cleland, 2007, p. 86). Williams and Cleland also discuss other traditional Asian cultural values, amongst them the desire to maintain interpersonal harmony and respect for authority figures. This would suggest that researchers may be expected to consult with the child's family. They may also need to be particularly mindful that Asian children may find it difficult to indicate to researchers or educational personnel (who are seen as having status and authority) that they do not wish to participate. However, these authors also caution against making stereotyped assumptions about Asian people. Instead, there is a real need to develop an awareness of diverse cultures and the different values generically referred to as Asian, as well as the diversity that can be found within various groups of people originating from one country, such as India or China and so forth.

Powell and Smith (2009) reflect on familial constraints that may be placed on Pasifika children noting that Pasifika children and young people may wish to express individual views; they comment that UNCROC, as a multicultural document,  "demonstrates that it is possible to find a position in which cultural issues are respected and children's rights are also upheld" (p. 137). This suggests the feasibility of negotiating the appropriate balance between child and parental consent for different cultural groups in ways that respect cultural issues as well as children's and young people's rights, while nevertheless emphasising sensitivity to the issues and a commitment to consultation with appropriate groups.

Active and passive parental consent

The literature relating to consent on behalf of children and young people distinguishes between passive parental consent and active parental consent following receipt of information about a research project and request to participate. "Active consent requires all parents to return a consent form, regardless of whether they are allowing their child to participate. Passive parental consent requires parents to respond only if they do not want their child to participate in the research" (Tigges, 2003, p. 283). Tigges provides a comprehensive overview of the practical methodological issues related to parental consent for research on adolescent risk behaviour, often carried out by health or youth researchers in schools. Her review draws on literature from the United States but many of the issues raised are relevant to the New Zealand context. In the United States, the use of passive parental response for consent generally results in between 93%-100% of students being eligible to participate. In contrast, when active parental consent is required, participation eligibility drops to 30%-60%, particularly if there is no follow-up request (Tigges, 2003). It is unclear whether those who do not return the forms have just not bothered or are saying no to their children's involvement. Follow-up methods can increase the rate but may prohibitively increase research costs.

In addition to the cost issue, another concern about requiring active parental consent is that this process can limit the representativeness of the sample on the assumption that there are differences in the characteristics of parents who do or do not give active consent, that would introduce bias in the findings. The New South Wales Commission for Children and Young People (2008) reports research indicating that "biases created through the consent process do exist and can be substantial" (p. 112). The consequence of research with biased samples is possible invalidation of research findings and any implications drawn from those findings. Thus, this is a serious issue with respect to research with children and young people.

Tigges (2003) discusses research reported by Ellickson and Hawes (1989) who explored reasons why parents had not responded in a situation requiring passive parental consent; nearly all parents reported they had not responded because they had no objections to the project and were actually actively allowing their child to participate (p. 286). This supports the assumption made by researchers that the system of passive consent works; parents receive the information, understand the system and make a conscious decision about their child's participation. Ellickson and Hawes also explored parental responses requiring active consent and found that only 40% initially responded, with 34% of them giving permission for their child to participate. They followed up and gained a response from 100% of those who had not originally responded, with 87% of them indicating they consented to their child's participation. Of the 60% of the total sample who did not respond initially, 87% indicated it was because they lacked motivation to respond not because they did not wish their child to participate. Again, these findings support those who argue that non-response for active consent processes is not synonymous with refusal. In the section on research involving children in primary schools, there is discussion of local research that involved passive parental consent (Carroll-Lind, Chapman, Gregory & Maxwell, 2006). In the section on research involving young people in secondary schools, a procedure for securing the young person's willingness to participate before requesting parental consent is also presented (Munford & Sanders, 2004).

Ethical ways of working

In concluding her review about the issues of the different kinds of parental consent, Tigges (2003) argues "Some studies, such as those involving more than minimal risk, will require the use of active parental consent….In many other studies, however, risk is minimal and passive parental consent is an acceptable procedure when supported by cogent arguments" (p. 288). Ultimately, researchers need to consider very carefully the nature of their own work, the context in which the research is being carried out, and the characteristics of the particular potential participants in making judgements about the consent processes. With respect to active versus passive consent, researchers also need to consider factors such as threats to the validity of the research, the rights of research participants, and the balance between potential benefits and potential harm. Coyne (2009) also draws attention to the need for researchers to make judgements rather than rely on rules or procedures. She notes that decisions around such judgements are rarely reported. Increased discussion around issues and processes of consent and other ethical dilemmas in the reporting of research would lead to greater transparency about such judgements. This transparency could then provide reference points for establishing ethical ways of working, rather than relying on decontextualised, simple, prescriptive solutions.

References

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Acknowledgement

Luanna Meyer for editing and reviewing this chapter.

Footnote

1. Throughout this report we refer to both children and young people. Many authors, mainly for reasons of linguistic simplicity, just use 'children' for all those under the age of 18. However, we feel that this nomenclature masks some of the subtleties that arise for different groups, for example, two-year-olds as opposed to 16-year-olds. Some of the sections of the report are concerned with particular educational sectors so we have decided on using children or tamariki when we are talking of participants in early childhood and primary school settings and young people or rangatahi when we are referring to secondary school settings. We have used the term research to cover research and evaluation. The processes involved in research and evaluation are similar and so are the concerns about the involvement of children and young people in research and evaluation. So, for linguistic simplicity, we have used the term research to encompass both.