Perspectives of young people with neuromotor disabilities on shared digital portals in paediatric rehabilitation: A descriptive-interpretive qualitative study.
Marietta Kersalé, Diane Paquin, Sylvain Brochard and 5 others
PMID 41693209WHAT IT FOUND
Young people with disabilities described shared digital portals as tools to reduce repetitive care and support autonomy.
They wanted control over who sees their data, practical home exercise guides, and peer connection, while warning against surveillance and pressure from unmet goals.
Key findings
01Participants identified gaps in professional coordination, such as overlapping therapy goals, as a source of exhaustion, viewing shared portals as a way to clarify what has already been worked on.
02Young people valued portals that allowed them to set their own rehabilitation goals and control data access, particularly to limit parental oversight during the transition to adulthood.
03Participants warned that digital tools could feel like surveillance if they included rigid reminders or failed to account for daily variability in fatigue and capacity.
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 overrepresented individuals with neurological conditions and underrepresented those with non-communicative disabilities. Participants were recruited voluntarily and had high digital literacy, which may introduce selection bias towards positive views of digital tools. The study was conducted in France, so findings may not transfer to other health care or education systems. Sample size was determined pragmatically for thematic saturation rather than statistical power.
Declared interests
Funded by Institut National de la Santé et de la Recherche Médicale, Région Bretagne, and Caisse des Dépôts et des Consignations.
The easy way to misread this
Do not interpret these findings as evidence that digital portals improve clinical outcomes. The study reports perceptions and desired features from a small group of young people, not the effectiveness of such tools in real-world practice.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →