Barriers to care: Caregivers' accounts of raising a child with a communication disorder.
Nicole Cooke, Clare Harvey
PMID 39221741WHAT IT FOUND
Caregivers of children with speech and hearing disorders reported feeling unheard by professionals who minimized early concerns, leading to delays and guilt.
They faced high private costs and scarce public resources, ultimately finding relief only by accepting their child's disability rather than trying to fix it.
Key findings
01Caregivers felt their early concerns about their child's communication delays were minimized or ignored by healthcare professionals and educators, which contributed to diagnostic delays and feelings of guilt.
02Participants reported significant financial and systemic barriers, including inadequate public services and the need to pay privately for therapy, despite some having middle-class privileges.
03Caregivers described a shift from trying to 'fix' their children to accepting their disabilities, which reduced their emotional distress and allowed for better connection with their child.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was very small (n=6) and homogeneous (all white, middle-class, biological mothers), limiting transferability to other demographics or socioeconomic groups. The study was conducted in an urban setting (Johannesburg) where services are theoretically more accessible than in rural areas. Data relied on retrospective self-report, which may be subject to recall bias.
Declared interests
The authors declared no specific funding from public, commercial, or not-for-profit sectors.
The easy way to misread this
Do not assume these findings apply to all caregivers, as the sample consisted exclusively of white, middle-class mothers in an urban setting with access to private services. The barriers described may differ significantly for families in rural areas or lower socioeconomic groups.