Agreement between children with long-term health conditions and their primary caregivers on reports of perceived participation.
Hong Zheng, Juan Bornman, Mats Granlund and 2 others
PMID 37350849WHAT IT FOUND
Children with long-term health conditions reported attending fewer activities than their caregivers thought, yet rated their involvement higher in some tasks.
Caregivers and children agreed on which activities mattered most, but disagreed on how much the child actually participated.
Key findings
01Children reported significantly lower attendance than caregivers for six activities, including playing with others and shopping.
02Children reported significantly higher involvement than caregivers in cleaning at home and quiet leisure.
03There was a strong correlation between the rank order of activities children and caregivers selected as most important.
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
The sample size was small (65 dyads) and recruited from only two hospitals, limiting how generalizable the findings are to other populations. The study only included children with congenital heart disease or leukemia, so results may not apply to children with other long-term health conditions. The design was cross-sectional, so it cannot determine if the disagreements between child and caregiver reports change over time or with intervention. The study did not measure how personal factors like self-efficacy or environmental barriers might influence these participation ratings.
Declared interests
The work was supported by the National Nature Science Foundation of China. The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that because caregivers and children agree on which activities are important, they also agree on how much the child is participating. The study found significant discrepancies in attendance and involvement ratings even when priorities aligned.