Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis.
Kasper Kruithof, Dick Willems, Faridi van Etten-Jamaludin and 1 others
PMID 32367663WHAT IT FOUND
Parents of children with profound disabilities describe knowing their child through a physical, intuitive bond.
This knowledge is hard to transfer via written logs but can be shared by showing caregivers how to interact or by telling stories, helping them understand the child's needs.
Key findings
01Parents' knowledge is described as an embodied 'sense of knowing' developed through constant presence, allowing them to interpret their child's pain and well-being where professionals often feel uncertain.
02This experiential knowledge is not readily transferable through written logs; instead, it is transferred by parents demonstrating interactions or sharing life stories and images with caregivers.
03Professionals who learn from parents' examples or stories feel more connected to and able to care for people with profound disabilities, though they may still struggle to interpret signals without that context.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
All included studies were conducted in Western countries, so findings may not apply to other cultural contexts. Many of the primary studies had small sample sizes or methodological limitations, which could bias the overall findings. The review focused heavily on the relationship between parents and medical professionals, potentially overlooking the specific dynamics with other support workers. This is a synthesis of existing literature, not a new trial, so it cannot prove that transferring knowledge improves patient outcomes directly.
Declared interests
No potential conflict of interest was reported by the authors.
The easy way to misread this
Do not assume that written communication logs or standardized handover forms are sufficient to capture a patient's complex needs. The review indicates that parents' deep knowledge is embodied and often fails to transfer through text, requiring active demonstration or storytelling instead.