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

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.

Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned

“…is one way to keep children and families motivated, especially for long-term projects/activities such as YPAG membership. However, similar to other published research findings [ 18 , 23 , 24 ] we found in some of the case studies that this level of training was viewed as unnecessary when children and families preferred informal conversational approaches to help them understand their roles. Thus, adopting a more flexible, informal induction into the activity with clear terms of reference, consent documentation and support from the PPI facilitator was felt to be sufficient.…”

Involving adolescents in the design, implementation, evaluation and dissemination of health research: an umbrella review protocol

“…These findings will inform the development of guidelines on involving adolescents in health research. The need for a comprehensive set of guidelines and resources on involving adolescents in health research has been highlighted by youth researchers81 and studies 83 106–109. These guidelines will facilitate researchers to collaborate with adolescents more effectively, leading to more meaningful involvement of adolescents in research.…”

Including the child’s voice in research from a longitudinal birth cohort: insights from the ROLO young person’s advisory group

“…The benefits of being part of a YPAG for children, researchers, and research itself are well-recognised [4,6,9]. The establishment of the ROLO YPAG is a stepforward in enabling the ROLO children and their siblings voices and thoughts to be translated into research questions of importance.…”

“…Collaboration with Young Person's Advisory Groups (YPAGs) is one model that empowers children by involving them in decision making and action planning, while increasing confidence and research skills [3,4,6]. This can improve recruitment and retention rates, guide the acceptability and feasibility of studies, and increase research relevance [3,4,9].…”