Caregivers' Experiences of Assessment and Treatment for Their Child With Childhood Apraxia of Speech: An International Questionnaire Study

PURPOSE: The aim of this study was to understand caregivers' preferences and experiences with diagnosis and treatment of childhood apraxia of speech (CAS). METHOD: Caregivers of children with CAS completed a 70-item online survey that explored demographics, initial concerns, the CAS diagnostic process, speech therapy goals, and preferred and received speech therapy service delivery (session frequency, length, and context). Quantitative data were analyzed descriptively and with inferential statistics; qualitative data were analyzed using content analysis. RESULTS: One hundred sixty-one caregivers participated, mostly from the United States, Australia, and Canada. A total of 72% of caregivers had concerns about their child's speech by the time the child was 18 months old. Although most children had seen two or three speech-language pathologists (SLPs) by the time they were diagnosed with CAS, 23% had seen four or more SLPs. Caregivers expressed a preference for their children to receive individual, in-person sessions of 31-45 min three or more times per week, but they most commonly received individual, in-person, weekly sessions of 30 min or less. Analysis of the caregivers' open-text responses led to the construction of five themes: "roadblocks to service"; "pursuit of comprehensive and reliable information"; "SLPs: trial, error, and then trust"; "CAS-specific care"; and "family support beyond the session." CONCLUSIONS: Results of this study highlight the need for education and communication. The challenges families experience in accessing timely and sufficient CAS-specific care indicate that greater training is needed for SLPs, pediatricians, and other health professionals to ensure that caregivers' concerns about children's speech are addressed, their desire to understand their child's diagnosis and treatment are met, and their children receive evidence-based treatment. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.31383226.