Reporting involvement activities with children and young people in paediatric research: a framework analysis

Abstract

Background

The active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially where children and young people (CYP) are concerned, is limited, partly due to the low level of reporting of patient and public involvement (PPI) in general. The aim of this work was to assess how researchers funded by the National Institute for Health and Care Research (NIHR) report the involvement of CYP in the design and conduct of child health research to better understand the opportunities offered to CYP, and the realities of involvement in practice.

Methods

A participation matrix, analysis framework and accompanying tools were adapted from existing frameworks, including a child-rights informed framework, the Guidance for Reporting Involvement of Patients and the Public Checklist Short Form (GRIPP2SF), and NIHR reporting expectations. Child-focused research reports were identified from the NIHR Journals Library, including any interventional or observational study involving CYP aged 0–< 24 years. In two co-design workshops with healthcare professionals and CYP, we tested and refined the participation matrix, analysis framework and accompanying tools.

Results

Only thirty-two NIHR reports out of 169 (19%) were identified as relevant and included reporting of PPI with CYP. We identified significant variability in the way PPI with CYP was reported. Only 4/32 (12%) reports fully met NIHR (and GRIPP2SF) reporting criteria. Only 3/32 (9%) reports formally evaluated or self-reflected on PPI activities with CYP, whilst 15/32 (47%) provided minimal information about CYP involvement. The most common approach to involving CYP (23/32, 72%) was through the medium of existing groups or networks.

Conclusion

Despite the NIHR’s commitment to increase the quality, transparency, and consistency of reporting PPI, the reporting of involvement with CYP remains sub-optimal. Neglecting to report key details of involvement methods and impacts deprives the research community of knowledge to advance the field of delivering ‘meaningful’ PPI with CYP. Practical guidance on how researchers can report the processes and outputs of CYP involvement more rigorously may help child health researchers to involve them more meaningfully. This research offers practical tools informed by CYP to aid the reporting process.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-023-00477-8.

Abstract

Background

Children and young people can (and should) be involved in the design of child-health research. How this works in practice is limited due to the low-level reporting of involvement activities.

Aim

We wanted to understand how researchers funded by the National Institute for Health and Care Research (NIHR) are reporting involvement activities with children and young people in child-health research.

What we did and how we did it:

A team of healthcare researchers (working in child-health research), a parent, and children and young people adapted existing tools to assess how the involvement of children and young people is reported in child-health research. We looked at reports in an online library to see how researchers are meeting the reporting guidelines set by the NIHR.

Findings

Despite the reporting guidelines provided by the NIHR, only four out of thirty-two reports followed this. It is still unclear who is involved, why, and what outcomes and impact involvement has on the research process, on children and young people and/or on researchers. This is a missed opportunity to learn from previous experiences and to build on good practice. Further work is needed to understand why and how the NIHR, and other funders of health research collect such information, and what their plans are for sharing the findings with the wider research community.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-023-00477-8.