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'It's Powerful' The impact of involving children and young people in developing paediatric research agendas: A
Laura Postma1, Malou L Luchtenberg1, A A Eduard Verhagen1
1Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Insights
Involving children and young people (CYP) in pediatric research agendas (PRAs) enriches agendas and fosters personal growth. However, measuring the impact, especially academic impact, requires further development and strategic planning for post-public involvement activities.
Area of Science:
- Pediatric research
- Patient and public involvement
- Child and adolescent health
Background:
- Growing consensus on involving children and young people (CYP) in matters concerning them.
- Progress in CYP involvement in pediatric research agendas (PRAs), but impact remains unevaluated.
- Need to assess the impact of CYP involvement and post-patient and public involvement (post-PPI) planning.
Purpose of the Study:
- To evaluate the impact of involving CYP in developing PRAs.
- To assess the extent of planned post-PPI activities.
Main Methods:
- Qualitative study using in-depth interviews.
- Analysis and interpretation of Dutch-language interviews with vocational education and training (VET) students (aged 14–18) training to be nurses.
- Involvement of VET students in data analysis and interpretation via a young person advisory group.
Main Results:
- Involving CYP created a more enriched and clarified agenda.
- Participants reported personal/professional growth, enhanced connections, and increased awareness.
- Academic impact was not clearly indicated, but key factors were understood; emphasis on measuring individual impact.
- VET students identified four themes: learning new knowledge, collaboration, listening, and assessing individual impact.
Conclusions:
- Involving CYP in PRAs yields diverse impacts, including agenda enrichment and personal development.
- Few researchers planned post-PPI activities to ensure impactful outcomes.
- There is a need for thorough evaluation of impact forms and alignment with research transformation goals.
Introduction:
There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned.
Methods:
We conducted a qualitative study using in-depth interviews to identify and gain an in-depth understanding of the impact of involving CYP in developing PRAs. The transcripts were uploaded to Atlas.ti to be coded and organised. Dutch-language interviews were analysed and interpreted together with vocational education and training (VET) students. These students were aged between 14 and 18 years and were training to become nurses.
Results:
Three CYP and 15 researchers decided to participate. We focused on three categories of impact: agenda-setting impact, individual impact and academic impact. Involving CYP creates a more enriched and clarified agenda. It ensured that both CYP and researchers underwent personal or professional growth and development, it created a connection between the people involved, awareness about the importance of involving CYP and it ensured that the people involved had a positive experience. The participants were unable to indicate the academic impact of their PRAs, but they did understand the key factors for creating it. In addition, the need to measure impact was highlighted, with a particular focus on assessing individual impact.
Discussion:
Our study outlines the diverse subthemes of impact that arise from involving CYP in developing PRAs. Despite the potential of research agendas to amplify CYP voices, only a minority of researchers strategized post-PPI activities ensuring impactful outcomes, prompting the need for thorough evaluation of various impact forms and consistent alignment with the overarching goal of transforming the research field.
Patient Or Public Contribution:
We involved VET students in the data analysis and interpretation phase by forming a young person advisory group. The data analysis of the interviews analysed by the VET students revealed four distinct themes: 1. Learnt new knowledge. 2. Learnt to collaborate. 3. Learnt to listen. 4. Assessment of the individual impact.
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