Guidance notes for gaining informed consent in research with children and young people

Preparing children and young people to engage with research

Whatever sort of research you are planning – whether it is ‘about’, ‘with’ or supporting research ‘by’ children and young people (CYP) it is important to provide the right information for participants before they commit to taking part.

Researchers will need to feel confident that participants have given their ‘informed consent/assent’ to you involving them and their data in your project. It is important that CYP are interested in engaging with any particular research study and given appropriate ways to express their interest/disinterest. It is important to avoid that they take part from a sense of ‘duty’ or, worse, because they feel they should for any reason ie. feel coerced.

Researchers have a responsibility to demonstrate their commitment to the UN Convention of the Rights of the Child, in particular articles 12 and 13:

Parties shall assure to the child who is capable of forming his or her own views 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

Article 12

The 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

Who is involved in gaining ‘informed consent/assent'?

Informed consent means that the participant understands what they are consenting to. Informed assent is the term used to show that children under the age of consent in their local context have given their consent alongside those who have the legal responsibility to support and safeguard the child(ren). A researcher needs to identify who holds this role in relation to their research participants.

As with adults, those who are supporting children and young people should be invited to ask questions at any point in the research and be provided with an identified researcher contact for gaining further information whenever they or the child/young person would find helpful. Please note: there should also be an independent named contact, who should sit outside the research team, to enable any concerns to be raised and responded to.

Participant research information

It is recommended that researchers invite participants through a process which involves all stages of the research: promotion, enrolment, data collection, analysis and dissemination. Potential participants need different sorts of information at different times during the research study.

Participants and their supporters need information to be:

• Sufficient for the role and stage of the stage of the research process
• Clear about the purpose of the research
• Aware of the expected outcomes
• Understand what support is needed to address the purpose
• Clear about what they would be asked to do
• Understandable in terms of language, experience and accessibility

Plan a journey of ongoing consent/assent

Thinking about research as a journey, with different stages can help to ensure that research participants have the right information and can give ‘informed’ consent at each stage. It may be difficult for potential participants to fully understand what taking part means to them before actually starting to get involved. As participants get involved in the research they may understand information given to them more easily and more fully.

Promotion of research: stage-specific advice

Wherever possible and appropriate researchers need to promote their study and engage in dialogue with CYP before trying to enrol participants. This is also a time when researchers can benefit from potential participants’ views about a topic which could lead to better ways of researching or improved research questions.

A research study might interest CYP because:

• The topic is of interest e.g., it may address something which annoys them or is a particular area of expertise or something they are curious about. You need to tell them what the research is about.
• They are interested in the potential outcomes of the research. This could be that they simply feel young people’s views will be heard by those who impact their lives in some way e.g., their teachers, youth leaders, health professionals, police services etc. You need to tell them what you hope to do with what you find from the study.
• They like the idea of taking part in research. This may be a new experience and/or it might have the opportunity of supporting their school career and/or working with their friends or meeting a new group of young people etc. You need to tell them why you need their help and what this might involve, the experiences they could have through taking part.

As a reflexive researcher:

• Ask yourself - do the young people you have engaged with in promoting the study appear happy to receive information and a request for their consent to enrol them?
• Whilst gatekeepers may be very helpful sources of information, check you are not relying on them as a substitute for your own observation of young people’s reactions.
• Be prepared to adjust and amend your study topic, methods, research questions etc. as a result of your promotional discussions/CYP’s feedback.

Respecting CYP’s autonomy

In common with best practice when working with adults, the default position should be to assume that the target children for participation will be capable of making an informed decision as to whether or not to participate, provided they are given adequate information in a form that they can understand and that they do not feel in any way coerced into consenting.

Similarly, children’s rights as owners of their own data are no different to those of adults, so equal respect should be given to their views and wishes regarding data management, and data destruction where they so wish. Children are unlikely to have a good understanding of the implications of data storage and sharing, so these will need to be explained to them in accessible terms.

Ensuring that children are under no pressure to participate demands careful consideration of the power relations that almost inevitably exist between adults and children. Power is exerted by the context as well, for example the school or early years setting is one in which a degree of compliance with adult direction is required and enforced, either subtly and kindly, or more directly. Thus, seeking agreement from a child in such settings will already result in some degree of influence, even if it does not meet the fuzzy threshold beyond which coercion would be recognised.

Seeking participation agreement from a child is a social negotiation, not just a paper exercise. In recognition of this, careful preparation of consent procedures can include, for example, questions to which a child can be expected to say no, and encouraged by the person seeking consent making it clear that it is fine to say ‘no’ and that the child is free to say ‘no’ also to participation, and to cease participation, ‘withdraw’, at any time. The crucial element here is that there are ‘no consequences to saying no’. This is not always easy to convey clearly to a child.

Children are used to being in inferior power relations with adults, it is their default expectation, so a researcher will have to make special efforts to establish the different relation that establishes the child as a free agent.

With few exceptions, it is not only the child’s decision regarding participation. Typically, it will be necessary to seek the consent of one or both parents or other person(s) with a legal responsibility to protect the child’s best interests. If a child indicates that they do not wish to participate or that they wish to cease participation, best practice is to see the child’s wishes as trumping any counter wish on the part of the parent(s) or other responsible person(s) for the child’s participation to commence or continue.

For school-based research, where the research activity is identical with or very similar to standard curriculum practice, the consent of the head teacher may be sufficient in addition to child consent, as long as parents are informed of the research and it is an expectation in the school that such research may take place. The process in such cases needs to be carefully vetted by the head teacher.

Researchers should be mindful that there may be circumstances where participants will not agree to take part in the study if their parents have to be informed and give prior consent. For example in relation to sexual behaviours. In these circumstances researchers will need to satisfy the Gillick Competency Test (House of Lords 1985) that the young person is capable of giving informed consent.

Respecting autonomy also means being sensitive to non-verbal signs that a child is unwilling to consent or to continue participation. Signs to watch out for could include looking away, not making eye contact, becoming silent or monosyllabic in replies, withdrawing into self or nervous fidgeting.