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

Area of Science:

• Pediatrics
• Developmental Psychology
• Speech-Language Pathology

Background:

• Early Childhood Intervention (ECI) in Spain supports children aged 0-6 with developmental disorders.
• Current ECI practices prioritize family-centered, relational, and participatory approaches.
• This study focuses on families' experiences with speech-language therapy for Rett syndrome (RTT) and Angelman syndrome (AS).

Purpose of the Study:

• To explore family perceptions of speech-language therapy quality for children with RTT and AS.
• To identify unmet needs within ECI services for these specific developmental disorders.
• To assess the impact of ECI on children's communicative development.

Main Methods:

• A cross-sectional, descriptive online survey was administered to 36 families of children with RTT and AS.
• Exploratory quantitative analyses included correlation tests, t-tests, and regression.
• The small sample size necessitates cautious interpretation and limits generalizability.

Main Results:

• Family perceptions of service quality were linked to resource availability, facility adequacy, and professional empathy.
• No significant associations were found between socioeconomic status, parental quality of life, and perceived service quality.
• Most families reported improvements in their children's communication and interaction skills post-intervention.

Conclusions:

• Speech-language professionals are crucial in ECI for RTT and AS, requiring enhanced accessibility and emotional support.
• Integrated, team-based approaches are needed for communication, motor, and psychosocial development.
• Individualized, cooperative strategies and a proposed framework can improve ECI quality and family engagement.