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Paediatric eye and vision research participation experiences: a systematic review
Jacqueline Miller1, Katherine Curtis-Tyler2, Michelle Maden3
1King's College London & Moorfields Eye Hospital NHS Foundation Trust, London, UK. Jacqueline.miller@kcl.ac.uk.
Insights
Understanding children's experiences in eye research is crucial. Current research, however, lacks their perspectives, highlighting a need for more inclusive studies to improve pediatric ophthalmic care.
Area of Science:
- Ophthalmology
- Pediatric Research
- Health Services Research
Background:
- High-quality pediatric ophthalmic research requires understanding patient experiences.
- Participant experiences are vital for child-centered, high-quality research.
- This systematic review focuses on factors influencing positive research experiences in pediatric ophthalmology.
Purpose of the Study:
- To systematically review literature on children's, young people's, parents', and staff's perceptions of factors supporting or hindering positive pediatric eye and vision research experiences.
- To explore perceived adverse or positive effects related to participation and identify interventions for improving research experiences.
Main Methods:
- A comprehensive systematic search was conducted across multiple databases (MEDLINE, Embase, CINAHL, Web of Science, Cochrane Library) and grey literature.
- The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) 'five domains' were used as an a priori framework for synthesis.
- A 'best fit' synthesis approach was employed to analyze the eligible studies.
Main Results:
- The search identified 13,020 papers, with only two studies meeting the eligibility criteria.
- Eligible studies focused on parents' and staff's experiences, omitting the perspectives of children and young people.
- Parental experiences were influenced by staff characteristics, information provision, trial organization, and personal motivations, aligning with PRES domains.
Conclusions:
- The current evidence base for pediatric ophthalmic research experiences is limited.
- Crucially, the perspectives of children and young people are absent from existing research.
- Further research actively involving children and young people is essential to enhance the quality of pediatric ophthalmic research and patient outcomes.
Background:
For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient 'experience' reflects a key measure of quality in health care (Department of Health. High Quality Care for All: NHS Next Stage Review Final Report: The Stationery Office (2008)); research participant 'experiences' are equally important. Therefore, in order to achieve child-centred, high-quality paediatric ophthalmic research, we need to understand participation experiences. We conducted a systematic review of existing literature; our primary outcome was to understand what children and young people, parents and research staff perceive to support or hinder positive paediatric eye and vision research experiences. Our secondary outcomes explored whether any adverse or positive effects were perceived to be related to participation experiences, and if any interventions to improve paediatric ophthalmic research experiences had previously been developed or used.
Methods:
We searched (from inception to November 2018, updated July 2020) in MEDLINE, Embase, CINAHL, Web of Science, NICE evidence and The Cochrane Library (CDSR and CENTRAL), key journals (by hand), grey literature databases and Google Scholar; looking for evidence from the perspectives of children, young people, parents and staff with experience of paediatric ophthalmic research. The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) (National Institute for Health Research. Research Participant Experience Survey Report 2018-19 (2019); National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) identified 'five domains' pivotal to shaping positive research experiences; we used these domains as an 'a priori' framework to conduct a 'best fit' synthesis (Carroll et al., BMC Med Res Methodol. 11:29, 2011; Carroll et al., BMC Med Res Methodol. 13:37, 2013).
Results:
Our search yielded 13,020 papers; two studies were eligible. These evaluated research experiences from the perspectives of parents and staff; the perspectives of children and young people themselves were not collected. No studies were identified addressing our secondary objectives. Synthesis confirmed the experiences of parents were shaped by staff characteristics, information provision, trial organisation and personal motivations, concurring with the 'PRES domains' (National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) and generating additional dimensions to participation motivations and the physical and emotional costs of study organisation.
Conclusions:
The evidence base is limited and importantly omits the voices of children and young people. Further research, involving children and young people, is necessary to better understand the research experiences of this population, and so inform quality improvements for paediatric ophthalmic research care and outcomes.
Trial Registration:
Review registered with PROSPERO, International prospective register of systematic reviews: CRD42018117984. Registered on 11 December 2018.
