Caregiver perceptions of communication difficulties in young people with Down syndrome: A cross-sectional survey study

Introduction and objectives Young people with Down syndrome (DS) often experience challenges in spoken language, particularly in expressive domains, which may influence participation across a range of communicative contexts and everyday support environments. The aim of this study was to explore caregiver perceptions of communication difficulties in young people with DS in Spain. Materials and methods A cross-sectional survey was completed by 44 caregivers in Spain, who provided information on 69 young people with DS aged between 8 and 35 years. The questionnaire examined caregiver perceptions of expressive and receptive language abilities, communication experiences across contexts (home, school, and social settings), and beliefs about factors perceived to influence speech production. Results Caregivers most frequently perceived receptive language abilities as stronger than expressive abilities (72.5%). Communication difficulties were reported most often in school (47.8%) and social contexts (44.9%), and less frequently in the home environment (18.8%). Beliefs regarding the role of orofacial muscle tone in speech production varied, with 36.2% of caregivers perceiving an influence and a substantial proportion expressing uncertainty. Conclusions Caregiver reports indicate that expressive language is perceived as a key area of challenge for many young people with DS, particularly in contexts with higher communicative demands, and should be interpreted as complementary to, rather than a substitute for, direct clinical assessment. These findings underscore the value of incorporating caregiver perspectives in research on communication in DS while highlighting the importance of cautious interpretation and alignment with current evidence-based knowledge.