Background

The Children’s Research Network of Ireland and Northern Ireland held its sixth conference on the 29th and 30th November 2017. At the conference, members of the network participated in a roundtable discussion on the ethical approval process of conducting participatory research with children and young people. The discussion was facilitated by Lorna Kerin from the Children and Young People’s Services Committee (CYPSC), and researchers split into smaller groups based on their research background. The smaller groups included academics, researchers based in healthcare settings, and researchers from statutory agencies. Participants received a document featuring a sample of current ethical guidelines from tertiary institutions and research bodies, alongside guiding questions to support their discussion. These questions asked participants to consider ethical principles and ethical challenges of participatory research with children and young people.

This article provides an overview of the primary emergent themes discussed by participants at the roundtable, including vulnerability and diversity, consent and assent, ethics committees, and the practicalities and logistics of child and youth participation in research. Participants considered the opportunities of these aspects of research, and proposed solutions to potential challenges. It is important to keep in mind that there were a variety of views represented at the roundtable and this article is not an account of issues agreed by consensus among group members. The objective of this article it to provide an insight into some of the issues discussed relating to the ethics of child and youth participation in research.

Vulnerability and diversity

Across the health, statutory, and academic groups, researchers discussed the vulnerability and diversity of children and young people involved in research. It was noted in some discussions that the stringent risk-aversion applied by some ethics committees may potentially minimise the voice of children in research and reduce the evidence base which could be drawn on when working with vulnerable groups. Many participants suggested Article 12 of the United Nations Convention on the Rights of the Child (1989) could be better incorporated into ethical guidelines on participatory research with children. Article 12 assures children who can form their own views have “the right to express those views freely” and “the opportunity to be heard in any judicial and administrative proceedings affecting the child”[1].

However, it was also highlighted that ethical standards for conducting research with children are important in ensuring the best interests of the child are at the heart of any research they may participate in. Some roundtable participants noted that vulnerable groups can be difficult to reach, and there may be an aversion to conducting research with these groups, due to fear of causing harm. Additionally, it was pointed out that ethics committees may make decisions about children’s participation in research without hearing their views on taking part. In the health research group, some participants shared that they think children aged two to seven years old are less heard in research, and there is more research conducted with children of middle childhood age (six to twelve years) in the current literature. Ensuring inclusivity and diversity in participatory research was therefore identified as an important issue for research with children and young people going forward.

The academic research group discussed the impact a children’s advisory committee could have in ensuring research was better ‘child-proofed’. Some roundtable participants also proposed forming a national ethical review body for children’s research in Ireland, to streamline ethical approval applications to one standard body. The academic research group pointed out that university ethics boards are typically based on a medical model, which understands children to be a vulnerable group. Therefore, the academic group suggested that children and young people could be represented on ethical review boards dealing with applications on children’s research, to guarantee their voices are acknowledged and included.

Consent and assent

While consent may only be given by individuals who are of the legal age of consent (typically eighteen years old), assent is the term used to express willingness to participate in research by persons who understand the research in general but are too young to give informed consent. Assent from the research participant must be received alongside informed consent from the participant’s parent or guardian. Some participants noted that strict parental consent requirements can make it hard to gain permission for children to be involved in participatory research, and it can be particularly difficult to get informed consent. Parent’s perception of children, in terms of disposition and ability, can also impact their decision to provide consent. Researchers in the health group wondered how best to support parents to support their children’s involvement in participatory research. Participants pointed out the differing ages for consent in different fields, as in health it requires the person to be sixteen years old, and in mental health the age requirement is eighteen years. Ages of consent can also prohibit research on sensitive topics relating to violence, abuse, or sexuality. With regards to data protection, concerns were raised about maintaining the anonymity and confidentiality of child participants in research. Some participants questioned who owns the data when engaging in participatory research with children, and how children should be taken into consideration when findings are disseminated.

Across the subgroups, gatekeepers were acknowledged as the first point of contact when seeking to conduct research involving children. Gatekeepers can be parents, school principals, health professionals or statutory agencies. Some researchers shared difficulties they had in accessing ‘seldom heard’ children to participate in research, due to the concerns of gatekeepers. The health research group suggested researchers could allow more time for building trust and rapport with gatekeepers. Improved relationships between researchers and gatekeepers may potentially allow more children and young people to be involved in research projects, with the support of their guardians. Gatekeepers were also recognised for their important role in safeguarding the rights of children and ensuring their wellbeing when participating in research.

Ethics committees

Ethics committees were much discussed across the roundtable sub-groups, and were acknowledged as an important safeguard in child and youth participation in research. In the academic group, ethics committees were acknowledged by participants as a way for researchers to ensure they identify, and manage, risks associated with working with children. Across the groups, questions arose around the make-up of ethics committees, and the level of knowledge and experience in children’s research that is required by committee members. Some researchers were keen to know more about the structure, culture, and standards of ethics committees, as well as their principles and ethos. A number of participants acknowledged that there are various ethics committees for different disciplines, with varying codes of ethics.

Often, researchers may have to apply to several different committees for the same research project, and some participants suggested a need for coordination between research ethics committees. Access to ethical approval and support can sometimes be a challenge for practitioner researchers and others whose research is not linked with a university or hospital. Gaining approval can be a lengthy process, and during the wait time elements of the research can change or new challenges can arise. A number of participants described how this can happen even after receiving ethical approval, and suggested there needs to be more recognition for the unpredictable nature of some research endeavours.

Creating national ethical guidelines for children’s research was discussed by the groups as a way of possibly standardising the requirements of ethics committees. As mentioned, many roundtable participants sought clarity around issues of data storage and ownership, confidentiality, consent, and participation of vulnerable groups. These are topics that could potentially be addressed in national standards for ethical research with children and young people. It was proposed that organisations such as the Department of Children and Youth Affairs (DCYA), Children’s Research Network of Ireland and Northern Ireland, Centre for Effective Services (CES), Foróige, the Teaching Council, Tusla (the Child and Family Agency), the Health Service Executive (HSE), Barnardos, Children’s Rights Alliance, and health and social care professionals could collaborate on developing these standards. It was also suggested that developing national standards or guidelines may lead to increased monitoring of children’s research in Ireland, which could help improve the quality of the research being conducted. However, within the academic group some participants pointed out that research with children spans a variety of disciplines and methodologies, therefore ethical requirements may differ. It was suggested that research with children is not ‘one size fits all’, and that this diversity should be acknowledged when thinking about standardisation. 

Practicalities and logistics

The practical and logistical aspects of research were often-mentioned across the research groups. Roundtable participants suggested a number of ways that researchers could be better supported in conducting ethical research with children. Finding appropriate venues to meet with children and accessing funding and resources are some of the vital practical components to conducting participatory research with children. Throughout the roundtable discussions, researchers emphasised the need for adequate time to prepare and carry out research appropriately. Additionally, ethics committee members having protected or allowed time for their work on ethics committees could potentially decrease the delays in receiving approval. It was also noted that remunerating ethics committee members may possibly solve the backlog of ethical approval applications.

 Clear guidelines for dealing with disclosures made by children in research, guidelines relating to ages of consent and assent, and standardised guidelines on data storage were all mentioned as potential support mechanisms. Some researchers suggested that further clarity around the membership, knowledge, and experience of research ethics committees may demonstrate the level of understanding their members have on research with children and young people. A number of participants commented on the skills necessary to conduct rights-based participatory research with children and young people, including sensitivity and appropriate knowledge. The academic group proposed training on children’s research and participation may be useful for ethical review committee members, and may increase their likelihood to approve research projects involving children. Similarly, the health research group suggested further training opportunities for researchers, in the form of research integrity courses, or ethics labs or hubs.

When considering possible resources, creation of a database of ethics review bodies in Ireland dealing with children’s research applications was proposed as a useful support for researchers seeking ethical approval. The health research group suggested that novice researchers might make use of a bank of successful applications to ethics committees, which could be used as templates for their own submissions. 

Conclusion

The conference roundtable on the ethics of child and youth participation provided researchers from the clinical, statutory, and academic fields an opportunity to discuss the emerging issues in this area of research. Roundtable participants used this session productively and clearly identified the key issues and supports needed for ethical research with children and young people. When considering how children’s voices could be heard in research, participants considered consent and assent, data protection, research ethics committees, and logistical supports. Across the groups, opportunities to expand child and youth participation in research were identified by participants. In these discussions, it was suggested that the development of a national ethical body, specific to child research may be of significant benefit to researchers seeking ethical approval. Additionally, establishing standardised ethical guidelines and training resources for researchers were proposed by participants as useful supports. Ultimately, all groups agreed that having the voices of children and young people, particularly from seldom-heard groups, are a vital aspect of children’s research in Ireland and Northern Ireland.

[1] OHCRC (2018) Convention on the Rights of the Child, Available at: http://www.ohchr.org/EN/Profes... (Accessed: 17th January 2018).