The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study

Res Involv Engagem. 2021 May 14;7(1):30. doi: 10.1186/s40900-021-00263-4.

Abstract

Background: A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult public involvement, healthy children can also be considered as 'the public'. Paediatric patients and researchers experienced in conducting child-inclusive research are often asked about their attitudes towards the challenges they encounter. This is not the case for healthy children and researchers without such experience. Our aim was to investigate the attitudes of these children and researchers towards the challenges encountered during child-inclusive research.

Methods: This was an exploratory study. We interviewed healthy children and adult researchers without prior experience in child-inclusive research. We recruited the children through a foundation for young researchers and the adult researchers from two hospitals, both in Groningen, the Netherlands. We audio recorded the interviews, and they were transcribed verbatim. We analysed the data using qualitative content analysis.

Results: We interviewed five adult researchers and seven healthy children, aged 9 to 14 years. Both groups thought that it was best to involve children in paediatric research from as early a stage as possible. The children assumed that no prior training would be needed because they had already been trained at school. The researchers' attitudes varied regarding training children beforehand. Both groups thought that researchers did not need prior training on how to involve children if they worked with children on a daily basis. The children felt that recognition and a modest financial reward was appropriate. Adult researchers were cautious about rewarding the children. They feared it might render the children less intrinsically motivated.

Conclusion: Our study indicated that young and adult researchers have clear attitudes towards the challenges encountered during child-inclusive research. Young researchers could help adult researchers to find solutions to these challenges, even if they have no prior experience in child-inclusive research. Adult researchers who acknowledge the importance of child-inclusive research represent a significant step towards meaningful involvement of children. Our results imply that children could be involved in the decision-making process concerning the challenges encountered in child-inclusive research.

Keywords: Child-inclusive research; Children; Co-researchers; Healthy children; Medical research; Medical researchers; PPI; Paediatric research; Patient and public involvement.

Plain language summary

A growing trend in research is to involve co-researchers. It is called Patient and Public Involvement (PPI) and includes three groups: the patients, the public, and the researchers. In child-inclusive research the patients are children with a medical condition while the public is represented by healthy children. Generally, the attitudes of patients and researchers are heard, while the public is often unheard. We aimed to give a voice to healthy children and researchers without prior experience in child-inclusive research to determine their attitudes towards the challenges encountered.We interviewed seven healthy children and five researchers without prior experience in child-inclusive research. Both groups thought that it is best to involve children in research from as early a stage as possible. The children saw no added value in training children to be involved in child-inclusive research. The attitudes of researchers varied on this point. Both groups thought that researchers did not require prior training on how to involve children provided they already worked with children on a day-to-day basis. Children thought a modest financial reward would be appropriate, while researchers were cautious about giving a reward.Our study indicated that both groups had clear attitudes about the challenges encountered during child-inclusive research. Young researchers could help adult researchers to find solutions to these challenges, even if they have no prior experience in child-inclusive research. Our results imply that children could be involved in the decision-making process concerning the challenges encountered in child-inclusive research.