The co-production of research with children and young people

Why involve children and young people in research?

Considering co-production, PPI and service user involvement in research, it can be unclear how children and young people have been involved and the impact they have had. In a review of the literature it was clear that there has been some discussion that co-production is an attitude or principle rather than any set framework or methodology (Hickey, 2018). It is widely agreed that children and young people should have their views explored and be involved in decision making on issues affecting their lives (Hart, 1992). This has continued to be discussed as a priority in policy and service development (Department of Health, 2003; Kay and Tisdall, 2017).

Kirby (2004) explored the importance of involving young researchers at the development stage of research, highlighting the diverse perspectives and priorities of young researchers in contrast to adult perspectives alone. Yet, repeatedly, research has included young people as participants rather than as meaningful co-researchers (Kellett, 2009) limiting the participation to asking adult-defined questions. Unhelpfully, this may coincide with views of children and young people as incompetent or unreliable (Scott, 2008; Mayall, 2008; Clavering and McLaughlin, 2010; Bailey et al, 2015).

Not only are children and young people experts by experience, but they also have the right to express themselves and have their voices heard. As more children become the primary source of information, the less adults will need to interpret their worlds for them (UN, 1989; Kellett and Ding, 2009) leading to misinterpretation (Gardner and Randall, 2012). Although there has been growing acceptance of children and young people's rights in this area, these are not always applied in practice (Montgomery and Kellett, 2009; Moules, 2005) and this may be further confused by the lack of practical guidance on how to co-produce research (Hickey, 2018).

Including marginalised groups

To ensure diversity in participation there needs to be consideration of engaging marginalised groups such as children with disabilities, children with communication difficulties, looked-after children and young people from socially excluded groups (Kellett, 2011). Although there is a lack of information about groups of children and young people who are likely to be involved in participation, there is evidence to suggest some groups such as those already mentioned are more likely to be excluded (Sinclair, 2004; Kembhavi and Wirz, 2009; Beresford, 2012). This could lead to negative experiences and disengagement from children and young people (Clavering and McLaughlin, 2010).

Involving children and young people from marginalised groups can often be perceived as challenging for researchers, with issues such as access, negative assumptions about their ability to participate in research and communication barriers (Bailey, et al, 2014). However, the involvement of these children and young people is vitally important and a flexible approach to research is needed. Children and young people are ideally placed to highlight their needs and perspectives on the world they live in.

Ethical considerations

For co-productions to benefit everyone involved, researchers must be honest and aware of ethical dilemmas and considerations. As a starting point, researchers may need to think about consent, expectation, power, time, commitment, payment and safeguarding, to name but a few. If the time and effort of children and young people is not meaningful within research, it may lead to demotivation and disinterest (Coad, 2012). Depending on the research topic and methods used, safeguarding the young researchers and study participants may provide challenges. If young researchers are to be in contact with other children and young people over the course of the project, Kirby (2004) recommended that a Criminal Record Bureau (CRB) check (current equivalent Disclosure and Barring Service (DBS) check) should be in place. This aims to ensure there are no existing reasons on record that would compromise participant and co-research safety. Although this is not a foolproof system, it does provide initial protection.

Paying attention to redressing the power balance with young researchers is crucial (Kirby, 2004; Kellett, 2011). Contracts, ground rules and mutual expectations should be established from the outset (Coad, 2012), with adult and young researchers agreeing these together. Being in a familiar social context for the young person may help young researchers to feel at ease (Mayall, 2008). Thought should be given to the power dynamic between adult and young researchers, and there are likely to be a multitude of other power dynamics that require consideration, such as those between young people or between young people and children (Kellett, 2009). The time needed to build relationships (Coad, 2012), establish working groups and develop projects in partnership with young researchers should not be underestimated.

Hickey (2018) suggested that co-production is an alignment to an attitude and some researchers propose that the attitude begins with honesty and mutual respect between the research team (Kellett, 2011). Is it likely that in reality the responsibility lies with the principal researcher? Perhaps, but that does not mean that young researchers cannot share in decision making when the attitude of honesty and respect is applied.

Obstacles and practical considerations

Best practice is to involve the young researchers at every stage of the research project (Kirby, 2004). However, putting this into practice is no easy task (Moules, 2005). It is also important to ensure young researchers are involved on their own terms (Kirby, 2004), meaning open and honest negotiation. Young researchers may choose not to be involved at every stage of research. Therefore, it is important to ensure that all adult researchers recognise the competence and credibility of young researchers (Clark and Laing, 2018).

Consideration needs to be given to the research methods employed. Although there is debate on the need for methods that are deemed child-friendly, they need to be both appropriate for the research goals and achievable by a young researcher team or a mixed team of young researchers and adult researchers. It should be acknowledged, however, that competence in research is built by training and is not innate (Kellett, 2011). Many researchers have had success combining visual and verbal methods of data collection, but with little discussion of the young researchers' choice in using these methods (Honkanen et al, 2018).

The training requirements and existing skills of young researchers need to be considered on the basis of the proposed study (Kirby, 2004; Coad, 2012; Mitchell et al, 2019). Training needs will not solely revolve around technical research skills; confidence building, communication and interpersonal skills may also be needed. Although allowing children and young people to find their voice and express themselves is perhaps the starting point, this must be followed by adults (both as part of research teams and in society) developing their skills of listening and unbiased interpretation.

A young person's perspective

Author Keshav Krishnan has been involved in co-produced projects as an active member of a Young People's Advisory Group North East (YPAGne) and has worked with the other authors on a co-produced project. He describes his experiences in Box 1

A young person's (Keshav Krishnan) views on co-production in research

‘In my opinion co-production is the process by which people from different groups or organisations work together in order to achieve a shared outcome. It should fundamentally involve good communication, a sense of equality and open-mindedness. Clear, open communication allow members to support one another, produce plans where views and ideas are treated equally, and ensure there is transparency and honesty within the team.

‘Young People's Advisory Group North East (YPAGne) is currently co-producing a project with the nursing team from Northumbria University, in which we have created shared documents using Google docs, a facilitated group chat via email and WhatsApp and have organised monthly meetings to update one another on the project's progress. This has been incredibly successful and for future researchers, I would recommend forming similar lines of communication.

‘Establishing the correct power dynamics is perhaps the biggest challenge researchers face when carrying out a co-produced project. To have a sense of equality and respect ensures that all members, regardless of their experience, have the confidence to speak up and put their ideas forward, leading to more productive sessions and, ultimately, a more successful project. It is important for researchers to restrain themselves from controlling meetings, but rather nurture open discussions.

‘It is vital to create a flexible, open-minded approach when co-producing a project. For example, being open to views from any member of the group, being open to changes that perhaps go against original plans and evaluating each part of the project as a group, adapting if needed.

‘In order to create a sense of respect and equality from the start of the project, YPAGne and the nursing group wrote up a ‘co-production contract’ and a ‘values and expectations’ sheet. This meant everyone was aware of the forum we wanted to create for sharing ideas and developing the project. At our monthly meetings, we constantly evaluate the steps taken thus far and adapt when required. For future researchers, I would recommend taking similar steps when setting up a co-production project.’

Summary

Although young people's participation as active researchers may not always be explicit in published research, and co-production remains ill defined, adult researchers are continuing to work in teams with young people to empower them and support the production of research. Doing so in a manner that is mutually respectful and centred on a belief that young people can be competent, skilled researchers who have the right to share in decision making as societal stakeholders can be mutually beneficial. Young people have the right to be heard in this way.

Implications for practice

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