Adapting the Parent Report of Children’s Abilities-Revised (PARCA-R) questionnaire: Improving research inclusion and access to healthcare services for families with limited English literacy.

Background: Early identification of developmental delay is crucial for optimising children s lifelong outcomes. The Parent Report of Children s Abilities–Revised (PARCA-R) parent-completed questionnaire is widely used in healthcare services and research to identify children with developmental delay. A lack of translations significantly limits access for families with limited English proficiency, creating barriers to assessment and research participation. Translations are most needed in Polish, Romanian, Urdu, Arabic and Panjabi to ensure accurate developmental assessment for families with limited English proficiency. Aim: To develop accessible, culturally appropriate adaptations of the PARCA-R questionnaire to improve inclusion in healthcare services and research for families from diverse communities. Objectives: Adapt the PARCA-R questionnaire in Polish, Romanian, Urdu, Arabic, and Panjabi whilst maintaining developmental and linguistic equivalence. Recruit parents from diverse linguistic backgrounds for structured user testing. Conduct parent-led testing and expert review to refine the adapted versions for clarity and accessibility. Develop online and audio versions to ensure accessibility for parents with limited literacy skills. Disseminate the adapted versions to healthcare providers, researchers and the public for immediate implementation. Methods: First, the PARCA-R language scale will be adapted, guided by existing vocabulary and multiword utterance checklists in each target language, and will incorporate parent feedback and expert review to ensure developmental and linguistic equivalence. Forward translations of the PARCA-R cognitive scale will be conducted by professional translators, followed by AI-assisted back translation. Discrepancies between the forward and back translations will be resolved by expert translators. The adapted questionnaires will undergo extensive parent-led testing and professional review before finalisation. Online and audio versions of the questionnaire in English and all target languages will be developed to ensure accessibility for families with limited literacy skills. These will undergo user-testing by parents and healthcare professionals and iterative revision prior to finalisation. Parents from diverse language backgrounds and with varying literacy levels will be recruited to input to all aspects of the adaptation process, enabling direct feedback on clarity and accessibility of the adapted questionnaire in each target language. Timelines for delivery: This 12-month project comprises three overlapping work packages. WP1 Months 1-7: Adapt PARCA-R language scale into each target language, incorporating parent-led testing and expert review. WP2 Months 3-8: Translate PARCA-R cognitive scale into each target language, incorporating parent-led testing and professional review. WP3 Months 1-12: Develop online and audio questionnaire versions in English and all target languages incorporating parent-led testing and professional review. Dissemination: We will disseminate printed copies of the adapted questionnaires and the weblinks to the online/audio versions to all UK NHS neonatal services and clinical trials units. All resources will be made freely available on the PARCA-R website for immediate use. Study results will be published in an open access peer-reviewed journal. Anticipated Impact: Adapting the PARCA-R into languages spoken by 1.85 million people in England and Wales will increase access to healthcare services and research for families from diverse communities. Online/audio versions will also enhance accessibility for parents with limited literacy skills, reducing health inequalities and improving research inclusion.