"I Just Want Him to Be Understood": Parent Perspectives of the Long-Term Desired Outcomes and Experiences of Early Intervention for Children With Childhood Apraxia of Speech.

PURPOSE: This qualitative study explored the perspectives of parents of young children with childhood apraxia of speech (CAS) in terms of (a) long-term desired outcomes for their child and (b) experiences of early intervention (EI). Although parent and client perspectives are recognized as a key component of evidence-based practice (EBP), there is currently sparse information about parent experiences to direct speech-language pathologists' clinical practice.

METHOD: The parents of 14 children with a confirmed CAS diagnosis participated in this study. Participants were from Australia and the United States. Online semistructured interviews were used to explore parents' desired long-term aspirations for their child as well as their experience of EI. Reflexive thematic analysis was used to analyze the data.

RESULTS

Three themes described the long-term desired outcomes, with participants aspiring for their child to communicate effectively, participate in everyday life, and experience feelings of well-being. There were four main themes related to parents' experiences of EI with their child with CAS: (1) finding and maintaining access to EI services is time consuming and complex; (2) quality CAS services are about therapist skills, frequency, and do-ability; (3) the wider context: EI is not just about what is happening for the child and family in speech-language pathology; and (4) children improve, but at what cost?

CONCLUSIONS

Parents have clear long-term aspirations for their child to be able to communicate effectively and to participate in and have a good quality of life, despite acknowledging the long-term nature of CAS. Experiences of EI indicate complexities in receiving appropriate intervention and the impact on the child and family as a whole. Clinicians are encouraged to consider these findings in implementing EBP.

SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.30179068.