A Systematic Review on Patient and Public Involvement in Research on Childhood Communication Difficulties

Abstract

Background

The proposal to involve patients and the public (Patient and Public Involvement; PPI) in research is increasingly recognised as important in research concerning speech, language, and hearing and communication difficulties. 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.

Aims

This systematic review aimed to identify, describe and evaluate how PPI has been implemented and reported in research concerning childhood speech, language, hearing and communication difficulties.

Methods

Six electronic databases were systematically searched for eligible studies reporting PPI in these fields. Records were screened against predefined eligibility criteria. Data were extracted on study characteristics, PPI contributors, stages and methods of involvement, reported impacts, and quality of PPI reporting. The methodological and PPI quality were assessed using MMAT and GRIPP2 Short Form, and findings were synthesised narratively.

Results

Twenty-one studies were included. PPI was reported variously across speech, language, hearing and communication topics, the implementations varied considerably. Parents, carers and professionals were more commonly involved than children and young people themselves. Most studies used consultation-based approaches, often during early stages (e.g., study design or material development), while fewer reported involvement in later stages (e.g., dissemination, implementation or evaluation). Reporting was inconsistent, particularly regarding contributor characteristics, accessibility adaptations, decision-making influence, and the impact of PPI.

Conclusions

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. Future research should distinguish PPI from research participation, involve children and young people more directly where appropriate, report contributors’ roles and influence more transparently, and consider accessibility and communication support throughout the involvement process.

WHAT THIS PAPER ADDS

What is already known on the subject

• Health service providers and research funders now require attention to Patients and Public Involvement (PPI) in healthcare research. PPI highlights the need to work jointly with stakeholders at all steps involved in research to allow them to take governance over their health conditions. Whilst emphasis on PPI applies to health issues in general, there is no specific review of PPI considerations in research on health factors that affect hearing and communication difficulties. This omission is particularly noteworthy when considering issues that arise in early development.

What this study adds to existing knowledge

• A systematic review was conducted to assess current progress with respect to PPI for hearing and communication research in childhood and adolescence. The review identified research involving PPI that met quality requirements. Challenges related to PPI were highlighted in further analyses that revealed confusion and heterogeneity in PPI concepts, representativeness issues, tokenistic practices, a lack of support given to lay contributors, and a limited evaluation of the impacts of PPI.

What are the clinical implications of this work?

• PPI involvement in clinical research for communication and hearing difficulties should have a positive impact on the well-being of children and adolescents. Four challenges were highlighted when considering the current state of research on PPI in this domain: shallow involvement of the public and patients, conflicting expectations between groups participating in research, lack of clarity of research outcomes as they relate to PPI and variable standards of reporting PPI findings across studies. Tentative recommendations concerning how each of these matters could be addressed are offered.