Embedding public and patient involvement in childhood stuttering research: lessons learned from engaging children and families in Saudi Arabia

Abstract

Background: Public and Patient Involvement (PPI) is increasingly recognised as essential for ensuring health research is relevant, inclusive, and responsive to local contexts. However, in many regions of the Middle East, including Saudi Arabia, PPI remains underdeveloped. This commentary presents a reflective account of how PPI was embedded throughout a multi-method doctoral study exploring the experiences of Saudi children who stutter (CWS). Main body: This paper describes how ten Arabic-speaking contributors, including three children (aged 8 to10 years), two parents, two teachers, and three speech and language therapists, participated across six phases of the doctoral research: 1)planning, 2) recruitment, 3) pre-data collection, 4) data collection, 5) dissemination, and 6) early implementation. The contributors helped shape child-friendly, culturally relevant materials and advised on the linguistic accessibility and emotional safety of proposed recruitment and data collection tools and procedures. While CWS were not involved in the PPI group due to recruitment challenges, children with speech-sound disorders contributed insights to inform the design of child-centred tools. Their input influenced recruitment strategies, task sequencing during data collection, and dissemination formats. Key challenges included limited awareness of PPI among contributors, difficulty recruiting children who stutter, and the need to distinguish between research participants and PPI advisors for the contributors. Creative engagement methods, such as role-play and WhatsApp-based consultations, helped support inclusion and build trust. Conclusion: This commentary presents one of the first documented examples of child-inclusive PPI in the Saudi context, highlighting the value of cross-generational collaboration and culturally responsive methods in enhancing research relevance and accessibility. We advocate for greater awareness, infrastructure, and policy support to embed meaningful PPI across the region, with particular attention to the cultural and linguistic dimensions of PPI.