小児性運動失調症の子供を持つオーストラリアの介護者の経験とニーズ：質的研究

Effective design of speech-language pathology services for evidence-based practice requires attention to the needs of consumers and their families. Caregivers of children with childhood apraxia of speech often face challenges ensuring their child's needs are met and may experience anxiety and guilt. However, little is known about their experiences and needs in an Australian context. This study explored Australian caregivers' (a) lived experience of having a child with childhood apraxia of speech and (b) their perceptions of their family's needs.

Online focus groups or interviews were conducted with 13 caregivers. Questions related to the diagnostic process, access to speech-language pathology and other services, and family needs. Data were analysed using reflective thematic analysis.

Themes pertaining to experiences include: (a) Hard for the whole family, (b) not all speech-language pathologists are equal, (c) the system is broken. Themes pertaining to needs include: (a) easier access to funding, (b) increased understanding of childhood apraxia of speech, (c) finding my tribe.

Australian caregivers found it challenging to navigate services and had variable experiences with speech-language pathologists. They identified needs in funding, information, and social connection. Findings suggest speech-language pathologists should better support families and assess their own competence in treating childhood apraxia of speech.