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Published on: June 6, 2020
A Systematic Review on Patient and Public Involvement in Research on Childhood Communication Difficulties
Zhixing Yang1, Quynh Brooke Ho1, Ria Bernard1,2
1Department of Experimental Psychology, Division of Psychology and Language Sciences, University College London, London, UK.
Summary
Patient and Public Involvement (PPI) in childhood speech, language, and hearing research has grown, but implementation and reporting vary. Challenges include inconsistent reporting, representativeness issues, and limited impact evaluation.
Area of Science:
- Speech, language, and hearing research
- Communication sciences
- Pediatric health research
Background:
- Patient and Public Involvement (PPI) is increasingly vital in healthcare research, including speech, language, and hearing difficulties.
- Guidance exists for PPI, but its implementation and effectiveness in healthcare provision remain under-examined.
- This review focuses on PPI within childhood communication and hearing research.
Purpose of the Study:
- To systematically review and evaluate the implementation and reporting of PPI in research on childhood speech, language, hearing, and communication difficulties.
- To identify how PPI is described and assessed in existing literature.
- To provide insights into current practices and challenges of PPI in this specific research area.
Main Methods:
- Systematic search of six electronic databases for relevant studies.
- Screening of records based on predefined eligibility criteria.
- Data extraction on study characteristics, PPI contributors, involvement methods, reported impacts, and quality using MMAT and GRIPP2 Short Form, followed by narrative synthesis.
Main Results:
- Twenty-one studies were included, showing varied PPI implementation across speech, language, hearing, and communication research.
- Parents, carers, and professionals were more involved than children; involvement often focused on early stages like study design.
- Reporting was inconsistent regarding contributor details, accessibility, decision-making influence, and PPI impact.
Conclusions:
- PPI in childhood communication and hearing research is advancing, with increased publications.
- Key challenges include conceptual confusion, representativeness issues, tokenistic involvement, inadequate support for lay contributors, and limited impact evaluation.
- Recommendations include clarifying PPI concepts, enhancing child involvement, transparent reporting of roles and influence, and prioritizing accessibility.
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