Electronic participation-focused care planning support for families: a pilot study.
Jessica M Jarvis, Vera C Kaelin, Dana Anaby and 2 others
PMID 32259292WHAT IT FOUND
Caregivers of children in early intervention used a web-based care-planning tool over two weeks.
Most finished it independently in under 13 minutes. Feedback was neutral to favorable, but many found it burdensome. It is feasible for future trials but not yet a tested treatment.
Key findings
01Eighteen of twenty-two eligible caregivers completed the two-week trial, with seventeen doing so without any support.
02The median time to complete the first care plan was 12.99 minutes, dropping to between 3.40 and 6.45 minutes for subsequent plans.
03Acceptability scores on a 7-point scale ranged from 3.80 for satisfaction to 4.97 for ease of learning, indicating neutral to somewhat favorable responses.
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 study was a single-arm pilot with no control group, so it cannot show if the tool caused any change in caregiver confidence or child participation. The tool was not integrated into the clinical workflow; caregivers did not discuss their plans with their child's therapists as part of the study, which may have lowered satisfaction. The sample was small (18 participants) and predominantly white, female, and higher-income, limiting generalizability. The measures for caregiver confidence were two items developed specifically for this study and were not validated.
Declared interests
The authors declared no conflicts of interest. The study was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the National Institute of Child Health and Human Development (NICHD).
The easy way to misread this
Do not interpret the caregiver-reported confidence scores as evidence that PEM+ 2.0 improves clinical outcomes or caregiver satisfaction. The study was a feasibility pilot with no control group, and the tool was not tested within a real clinical workflow where therapists reviewed the plans. The low satisfaction score (3.80/7) and feedback about burden suggest the tool requires significant optimization before it can be recommended for routine use.