A systematic review on the status and quality of Patient and Public Involvement in research on childhood communication difficulties

Background: The proposal to involve patients and the public (PPI) in research has been embraced by the speech, language, and hearing communities. PPI offers a way to improve mutual expectations about evidence-supported healthcare developments. Aims: Whilst there is extensive guidance about PPI involvement by national agencies such as the National Institute of Health Research in the UK, little information is currently available concerning whether these expectations are met in any area of healthcare provision. The focus here was on hearing and communication difficulties in early development where PPI was addressed. Methods & Procedures: Six online databases were searched for eligible studies and reports that involved PPI in studies on children aged 3 to 17 years of age on communication and hearing topics. Outcomes and Results: Narrative analyses were conducted since PPI findings were descriptive in form. The data analysed across studies highlighted key patterns about the nature, implementation, and impact of PPI in research focusing on children’s communication and hearing difficulties. The four main themes that arose were 1) Diversity and Representation in PPI Contributors; 2) PPI Activities and Roles; 3) Cycle of tokenisms; 4) Evaluations on the Impact of PPI. Conclusions and implications: The systematic review showed that PPI in childhood speech, language, and hearing difficulties has advanced significantly, with the growing interest and number of publications, particularly in the past five years. The review also highlighted challenges such as confusion and heterogeneity of PPI concepts, representativeness issues, tokenistic practices, lack of support given to lay contributors, and limited impact evaluation. Suggestions are made as to how these issues may be addressed in future research. Further research is needed to address evidence gaps and refine methods in PPI research in these areas.