Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis

Abstract

PurposeAdults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review.Data sourcesSystematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand searching.Study selectionKeywords, subject headings and MeSH terms relating to the experience of iatrogenic harm during hospitalisation for children with ID were used. Potentially relevant articles were screened against the eligibility criteria. Non-English language papers were excluded.Data extractionData regarding: author(s), publication year, country, sample, health service setting, study design, primary focus and main findings related to measures of quality and safety performance were extracted.Results of data synthesisSixteen studies met the inclusion criteria, with three themes emerging: the impact of the assumptions of healthcare workers (HCWs) about the child with ID on care quality and associated safety outcomes; reliance on parental presence during hospitalisation as a protective factor; and the need for HCWs to possess comprehensive understanding of the IDs experienced by children in their care, to scientifically deduce how hospitalisation may compromise their safety, care quality and treatment outcomes.ConclusionWhen HCWs understand and are responsive to children’s individual needs and their ID, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalisation for children with ID.

Partnerships for safe care: A meta‐narrative of the experience for the parent of a child with Intellectual Disability in hospital

“…Certain paediatric populations have high healthcare utilization and may be exposed to increased risk . Children with Intellectual Disability (ID) are one such population, with emerging evidence which indicates that children with ID are particularly susceptible to avoidable harm in their care . Vulnerability to avoidable healthcare harm compounds the existing health inequities experienced by these children …”

“…Hospital staff rely on the presence of parents and carers to attend to the needs of children with ID . Being frequent users of healthcare, these parents or carers are therefore often more familiar with the health system and services than the general paediatric population.…”

A qualitative study of nurses’ perspectives of caring for children with intellectual disability and their families in a paediatric acute care setting

“…Children with ID have reportedly been at risk of emotional distress due to excessive sensory stimulation and unfamiliarity with the hospital environment (Oulton et al, 2015). They have also been identified as being at risk of physical harm in institutions where their communicative and ambulatory support needs are not well met (Mimmo et al, 2018). Sometimes parental presence with the hospitalised child has been relied upon to ensure the child’s safety in the absence of systems to help ensure safety for the hospitalised child (Mimmo et al, 2018).…”

Autism spectrum disorder and kidney disease

“…Up to 50% of parents have reported safety concerns for their children with ASD whilst in the hospital [38]. A recent systematic review highlighted that when healthcare workers understand and are responsive to children's individual needs and their neurodevelopmental disability, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalization [39].…”