Reporting involvement activities with children and young people in paediatric research: a framework analysis
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Jennifer Preston1, Giovanni Biglino2, Victoria Harbottle3,4
1Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK. jennifer.preston@liverpool.ac.uk.
Insights
Reporting of patient and public involvement (PPI) with children and young people (CYP) in health research is inconsistent. This study found that most reports lacked detail, hindering advancements in meaningful CYP involvement.
Area of Science:
- Child Health Research
- Patient and Public Involvement (PPI)
- Research Reporting Standards
Background:
- Growing emphasis on patient and public involvement in health research design and delivery.
- Limited understanding of how children and young people (CYP) are involved in research practice.
- Need to improve reporting of PPI in child health research.
Purpose of the Study:
- Assess the reporting of CYP involvement in National Institute for Health and Care Research (NIHR)-funded child health research.
- Understand opportunities and realities of CYP involvement in research.
- Identify gaps in reporting to inform future PPI practices.
Main Methods:
- Adapted existing frameworks including GRIPP2SF and NIHR reporting expectations.
- Analyzed NIHR child health research reports for PPI reporting using a participation matrix and analysis framework.
- Refined tools through co-design workshops with healthcare professionals and CYP.
Main Results:
- Only 19% of reviewed reports (32/169) included PPI reporting with CYP.
- Significant variability in reporting quality; only 12% met full reporting criteria.
- Most common involvement method was via existing groups (72%); formal evaluation of PPI was rare (9%).
Conclusions:
- Reporting of PPI with CYP in NIHR-funded research is sub-optimal.
- Lack of detailed reporting limits advancing meaningful PPI with CYP.
- Practical tools and guidance are needed to improve rigorous reporting of CYP involvement.
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.
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