In this exploratory study on the attitudes of YRs and ARs towards the challenges frequently encountered during child-inclusive research, we noticed that the children’s answers were reflexive, thoughtful, and critical. Most children were able to argue their motivations well. They asked each other critical questions in case they disagreed on something. Both the YRs and the ARs thought it would be best to involve children in research from as early a stage as possible; preferably in all stages of research. The YRs thought that they did not need prior training because doing research resembled projects they do for school. Opinions differed amongst the ARs. Some thought training YRs would interfere with their open-mindedness, while others thought YRs should be told what to expect during the research project they were to be involved in. The YRs assumed that the ARs did not need training in how to involve children in medical research, while the ARs thought training researchers would have added value. Regarding the issue of a financial reward, the YRs felt that recognition, or a modest financial reward, would suffice. The ARs had reservations about rewarding children; they feared children might no longer be intrinsically motivated.
Involving children in paediatric research
The views of both ARs and YRs in this study correspond to the literature on the possibility of involving children in child-inclusive research [17, 18, 21]. Bradburry-Jones and colleagues argued that children should not have to prove capacity. Researchers should assume that children are competent to form their own opinions . The list of recommendations for researchers issued by the National Institute of Health Research (NIHR) INVOLVE group states ‘do not make assumptions about what we are interested in or capable of – ask us’ .
As child-inclusive research is becoming more and more common in medical research, it could be viewed as a necessary part of an application for funding . Sometimes child-inclusive research is experienced as a ‘tick box’ exercise . Our study showed that the ARs who had no prior experience with or previous interest in child-inclusive research, thought it best to involve children from the outset. This was important because in this way the children’s input could be considered from the first stage of the research. An example in which patients were involved form the beginning is the Priority Setting Partnerships facilitated by the James Lind Alliance. These partnerships enable clinicians, patients, and carers to work together to identify and prioritise evidence uncertainties that could be answered by research. The attitudes of researchers - no longer considering child-inclusive research as an obligation but acknowledging its added value to research - might be a significant step towards the meaningful involvement of children.
Regarding the need to train children, our results differed to those found in the literature. The literature suggests children should be supported with adequate training, although training is interpreted in different ways [18, 24]. Kellet argued that training children to be involved in child-inclusive research is clearly necessary. For that purpose, she developed an interactive training program. It teaches children about the nature of research, the different approaches to research, about research ethics, and about how to frame a research question. In addition, the program teaches children about data collecting techniques and data analysis . Contrarily, Gaillard and colleagues stated that children can be trained in research through participation in young person advisory groups. Children can assist each other to learn about research and share their experiences . In the study of Luchtenberg and colleagues, children were involved in analyzing qualitative data. To avoid shaping children with the ideas of a qualitative researcher, they were not trained deliberately. The children received a brief interactive introduction about pediatric research. Most of the children said that before the actual analysis started, they only understood their role a little bit. As the research process proceeded, their role became clearer to them and the children grew more confident as time went by. Luchtenberg and colleagues hypothesized that limited training does not have a negative impact on the results . This might indicate that children do not need to be trained on how to be involved in child-inclusive research. A brief introduction suffices. This idea is in line with the results of our study. The YRs indicated they did not see any added value in, for example, weekly training sessions, because in their opinion they had already picked up the necessary knowledge at school. This attitude was also described by Gaillard and colleagues who state that children learn about research during other activities . Dudley and colleagues interviewed children who had prior experience in child-inclusive research about the need for training children prior to involving them. Children included in that study mentioned that they would benefit from training on how child-inclusive research works, on how to have the confidence to speak up, and about what is expected from them . These results indicate that children do not need substantive training on how to be involved in child-inclusive research, as argued by Kellet . What they do need is information about what it is like to be involved in research.
The YRs in our study were recruited from a foundation that offers them the opportunity to develop their interests in technology and sciences. The YRs all had a specific interest in science. They probably also learnt a great deal about actually performing research during their lessons at the foundation, which made training less relevant. Children with no such interest or experience in research would probably benefit from training.
The YRs assumed that adult researchers did not need training on how to involve children in research if they already worked with children on a daily basis. This corresponds partly to the attitudes of the ARs. They stated that they saw no added value in being trained in how to communicate with children, because that was something they were used to. The ARs did indicate that they needed a brief training on how to involve children in research. This is also reflected in a survey by Winch and colleagues. They identified the challenges hospital doctors encounter when they want to involve children in research and their thoughts on how this issue should be addressed . More guidance, training, and information should be available on overcoming the inequality in the relationships between children and adult researchers when involving children in medical research [28, 29]. The literature offers scant information on the attitudes of children regarding the need for training for adult researchers on involving children. The INVOLVE “tips for researchers”, which is composed together with children, also does not include training for researchers. It is not clear whether they did not think of adult training at all, or whether it was not deemed important. In the Netherlands, ZonMw (the Dutch organization for health research and healthcare innovation) provides master classes with tips and tricks for researchers who want to involve children in research. It is worth noting that in our study, the YRs themselves started discussing the need to train researchers when we talked about training children.
Reciprocity and reward are important factors in child-inclusive paediatric research [13, 22, 30]. The YRs suggested that recognition and a modest financial reward was sufficient. This is in line with the list INVOLVE published with points to consider when involving children in research. They stated that children should receive an appropriate reward and recognition for their contributions, to demonstrate that their time, commitment, and expertise are valued . The list was used in two studies to determine what reward children should receive in child-inclusive research [13, 14]. Mitchel and colleagues recommended giving children ‘Thank You’ certificates, vouchers, and events organized in partnership with the PPI group . Results from our YR interviews were consistent with the list published by INVOLVE. Moreover, they endorsed the statement by Mitchell and colleagues to devise a form of reward in consultation with the children.
A noticeable finding in our study were the views held by the ARs regarding the need to reward the children. The ARs thought it was a thoughtful gesture to compensate the children, but they were not in favour of a financial reward. The ARs stressed the importance of children being recognised, but above all that the reason for becoming involved should not depend on a financial reward. To our knowledge, little is known about the attitudes of researchers concerning this matter. Modi wrote about what adults think of rewarding children who are involved in research. Some adults think it might pose danger, and that it goes against the principle of autonomous decision-making if a child feels tempted because of a financial reward . Furthermore, the YR interviews showed that the children themselves indicated that they did not need a financial reward to be involved. Nevertheless, recognition of their expertise and the time invested would be appreciated. This corresponds to the results of Forsyth and colleagues .
Limitations and future research
A limitation of our exploratory study was that the number of YRs and ARs included was rather small. The children we included had some experience in research in order to compare their perspectives with those of adult researchers. The YRs in this study may have influenced the results regarding the need for training before involvement in research. Seeing that children with disabilities are sometimes involved in child-inclusive research as well , it would be interesting to compare their attitudes to the attitudes of the YRs included in this study. Larger studies too should focus on the involvement of both paediatric patients and healthy children in order to examine the difference between these two groups. The outcomes could be used to determine whether their expertise differs in the same way as in adult involvement, as described by McCoy .