Perceived quality and needs in speech-language therapy for Spanish children with Rett and Angelman Syndromes

Early Childhood Intervention (ECI) services in Spain support children aged 0-6 and their families, particularly those with developmental disorders. Recent ECI practice emphasizes family-centered, relational, and participatory approaches. This study explored families' perceptions of speech-language therapy for children with Rett syndrome (RTT) and Angelman syndrome (AS), aiming to evaluate perceived service quality, identify unmet needs, and assess the impact on children's communicative development.

A cross-sectional, descriptive study was conducted using a purpose-designed custom online survey. A convenience sample of 36 families was recruited through national and regional associations supporting RTT and AS. Due to the low prevalence of RTT and AS, analyses were conducted with an explicitly exploratory aim, emphasizing descriptive and relational patterns over inferential generalization. Quantitative analyses included correlation tests, paired-samples t-tests, multiple regression, and reliability analyses.

Families' perceptions of professionals were primarily associated with the availability of resources, the adequacy of facilities, and the professional's attentiveness and empathy. No statistically significant associations were observed between socioeconomic status or parental quality of life and perceived service quality, and session frequency did not emerge as a predictor of perceived therapeutic effectiveness. Nevertheless, most families reported improvements in their children's communication and interaction abilities following intervention. These findings suggest the potential value of relational, individualized, and collaborative practices, while highlighting persistent gaps in professional availability, interdisciplinary coordination, and caregiver support. The small sample size limits generalizability, and results should be interpreted cautiously.

Speech-language professionals may play a central and multidimensional role within ECI services for children with RTT and AS. Families emphasized the need for increased accessibility, emotional support, and integrated team-based approaches addressing communication, motor, and psychosocial development. Individualized and cooperative strategies could potentially enhance service quality and foster active family engagement. A ten-point framework is proposed to guide potential enhancement in ECI programs, support professional-family collaboration, and strengthen families' capacity to participate actively in their children's developmental care.