Unscheduled healthcare for children with intellectual disabilities: A systematic scoping review.
Emma Nicholson, Ciara Conlon, Laurel Mimmo and 2 others
PMID 35322908WHAT IT FOUND
Children with intellectual disabilities visit GPs and emergency departments more often than their peers, yet often receive less urgent care and poorer service quality.
Parents report feeling unheard, while clinicians admit they lack training and time to provide adequate support.
Key findings
01Children with intellectual disabilities are more likely to use unscheduled care, including out-of-hours services and emergency departments, often for conditions that could be managed in primary care.
02Parents report significant barriers, including a lack of partnership, trust, and coordinated care, and feel that general practitioners are often uninterested or insufficiently knowledgeable about their child's condition.
03Healthcare providers acknowledge that a lack of training in developmental and behavioural challenges leaves them ill-prepared to meet the needs of this population, particularly when behavioural issues are present.
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 review excluded studies that did not clearly identify children with intellectual disabilities, meaning many relevant papers on 'special health care needs' were left out, potentially underestimating the scale of the issue. A large proportion of the included studies used administrative data, which relies on accurate coding and diagnosis, and may miss children with mild or moderate disabilities who are not formally identified. The review found very little research directly from the perspective of children with intellectual disabilities themselves. The studies were heterogeneous in design and population, making it difficult to draw definitive conclusions about specific interventions or outcomes.
Declared interests
The authors declare no conflict of interest. The work was funded by the Health Research Board.
The easy way to misread this
Do not assume that higher utilisation of unscheduled care by children with intellectual disabilities indicates better access or quality of care. The review found that while these children attend emergency departments and out-of-hours services more often, their care is frequently rated as less urgent and of poorer quality, with parents reporting significant dissatisfaction and providers admitting to a lack of preparedness.