Online parent coaching helps Dravet kids build independence
Therapy program teaches parents skills to help children master daily activities
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An online occupational therapy program that coaches parents on how to help their children problem-solve may help young people with Dravet syndrome improve at daily tasks, a small study suggested.
The program is based on the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach, a therapy usually delivered directly to children to build problem-solving strategies. Since cognitive, language, and behavioral challenges may limit Dravet kids’ ability to engage in the problem-solving process, the researchers adapted the approach, teaching the strategy to parents so they could apply it at home.
The children’s ability to perform daily activities such as dressing, self-hygiene, and household tasks improved, the study found.
“This is the first study to demonstrate preliminary evidence that a telerehabilitation-based CO-OP Approach with parents is a feasible and beneficial intervention for improving performance in selected daily activities among children/adolescents with limited ability for engaging in the problem-solving process,” the researchers wrote.
The study, “Cognitive Orientation to daily Occupational Performance Approach using telerehabilitation with parents to improve performance issues in children/adolescents with Dravet Syndrome,” was published in Epilepsy & Behavior.
Goal-Plan-Do-Check
The CO-OP Approach is an individual-centered occupational therapy method that helps people build skills for everyday activities by teaching them how to solve problems. Instead of relying only on repeated practice, it helps people develop their own strategies to overcome difficulties in daily tasks. Initially developed for children with developmental coordination disorders, it has been applied to other pediatric and adult groups.
At its core is a simple framework, called Goal-Plan-Do-Check. A person sets a goal, makes a plan, tries it, and then reviews what worked and what didn’t. With a therapist’s support, the person learns to spot performance breakdowns and test ways to improve. The aim is not only to improve specific tasks but also to apply problem-solving skills to new activities.
Preliminary research suggests CO-OP may improve daily activity performance in children with Dravet. However, the approach typically requires active participation in discussions about performance and strategies, which can be difficult for those with cognitive, language, or behavioral challenges.
To address this gap, researchers in Italy tested whether delivering CO-OP through caregivers could improve children’s performance in daily activities and whether those improvements were maintained one month later. They also wanted to see if the program affected parents’ confidence in their abilities to support their children.
Participants were recruited through the Gruppo Famiglie Dravet APS, an Italian family advocacy organization. Nine parents of children and adolescents with Dravet syndrome took part. The patients, ages 9 to 18, had cognitive, behavioral, or communication difficulties that prevented them from participating in a traditional CO-OP program. Two families who completed the intervention were unable to participate in post-intervention or follow-up assessments.
Parents completed eight 50-minute online CO-OP sessions in which therapists taught them to use the Goal-Plan-Do-Check strategy to analyze their children’s performance in daily activities, identify where difficulties occurred, and find ways to improve their children’s performance.
At the start of the study, each parent identified five important but challenging activities they wanted their child to improve, such as brushing teeth, dressing, eating, preparing food, or completing simple household tasks. Three of the five tasks were addressed during sessions, while two were left untrained to assess whether problem-solving skills acquired would transfer to other activities.
Between sessions, parents practiced the strategies at home with their child or teen and recorded videos of their performance.
The program led to meaningful improvements in children’s daily functioning. Parents reported significant gains in both performance and satisfaction for trained activities, and also reported improvements in untrained tasks. These benefits were maintained one month after the intervention.
Video-based ratings of the children’s performance showed significant improvement in trained activities after treatment, with gains maintained at follow-up. Untrained activities did not show immediate improvement but showed significant gains at the one-month follow-up, suggesting delayed skill transfer.
Parents’ sense of competence did not change significantly, though results showed a positive trend, and some parents reported feeling more confident in supporting their child’s independence in daily routines.
“These findings provide preliminary evidence that the CO-OP Approach can be implemented with parents to improve their child/adolescent’s performance on both trained and untrained goals,” the researchers wrote. They added that the study “offers a viable alternative for children/adolescents who do not meet the prerequisites to engage directly in the CO-OP Approach, thereby expanding the reach of the intervention and broadening the population that can benefit from this approach.”
