Stakeholders' Experiences and Perspectives of Patient and Public Involvement (PPI) in Maternal and Neonatal Clinical Trials: A Qualitative Evidence Synthesis

利益相关者对母婴临床试验中患者和公众参与(PPI)的经验和看法:一项定性证据综合研究

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Abstract

INTRODUCTION: While there is a growing emphasis on Patient and Public Involvement (PPI) within maternal and neonatal research, there is a lack of evidence on how PPI is currently implemented. The aim of this qualitative evidence synthesis was to gain insight into stakeholders' experiences and perspectives of PPI in maternal and neonatal trials. METHODS: CINAHL, MEDLINE, PsycINFO, EMBASE, Web of Science, and Maternity and Infant Care (OVID) were searched from inception dates to September 2023, supplemented by a search of Google Scholar. Eligibility screening and quality appraisal of each included record were independently undertaken by two reviewers. Data extracted from the included records were thematically synthesised using Thomas and Harden's approach. RESULTS: Nine records were identified as eligible and included in the review. Three themes were generated from the synthesis, each with two or three subthemes. The main themes were 'building a successful PPI partnership', 'impact of PPI on trial design and development', and 'impact of PPI on stakeholders'. Of 15 discrete findings, 1 was assessed as having high confidence, 11 as moderate and 3 were assessed as having low confidence. CONCLUSION: Researchers who facilitated PPI described it as a positive and enjoyable experience that improved trial design and considered PPI as an asset to research. However, there was a lack of information available on PPI contributors' first-hand perspectives or experiences, which considerably limits our understanding of their opinions on how PPI is currently conducted. PROTOCOL REGISTRATION: The protocol for this qualitative evidence synthesis was registered on PROSPERO (PROSPERO registration number CRD42023383878).

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