RESUMO
PURPOSE: The purpose of this study was to explore the communication and social interaction experiences of adolescents with congenital motor speech disorders due to cerebral palsy or Down syndrome, with the aim of identifying clinical and research needs to support the development and implementation of speech-language interventions. METHOD: Five male youths (ages 14-18 years) with congenital motor speech disorders and one of their parents participated in face-to-face, semistructured interviews designed to understand communication and social experiences in daily life. Interviews were audio-recorded and orthographically transcribed offline. Content was coded according to topic areas emerging in the data. Themes were developed to illustrate the most salient and representative aspects of participants' experiences according to the phenomenological tradition that recognizes that participants are experts in their "lived experience." RESULTS: Participants described the youths' day-to-day communication experiences, including facilitators and barriers to successful social interactions. Thematic analysis revealed three main themes: (a) strong core relationships amidst sparse, superficial interactions in daily life; (b) the complicated picture of why; and (c) how speech-language pathologists can help. CONCLUSIONS: Participants reported that the impact of congenital motor speech disorders on social interactions and experiences became more apparent in adolescence than in earlier childhood. Addressing communication challenges to meet the unique social demands of this period requires tailored interventions that target multiple contributing factors beyond speech impairment, such as social communication skills, negative communication partner attitudes, and participation opportunities. Shifting practice toward a life participation approach to communication intervention stands to substantially improve the long-term social outcomes of adolescents with motor speech disorders.
