Abstract
BackgroundChildren and young people (CYP) with learning disability (LD) and/or autism spectrum condition (ASC) experience more frequent and lengthier hospital admissions than those without, which they and their families can find extremely challenging and anxiety-provoking. Research has uncovered inequities and negative experiences associated with hospitalisation for this population of CYP, which includes the delivery of safe care. Hospital staff have expressed a lack of confidence, capability and capacity to identify and meet the needs of this population, and parents can experience extreme reluctance to leave their child’s bedside.AimTo identify risk factors associated with the delivery of safe hospital care, related to emotional and physical safety, to CYP with LD and/or ASC to inform the development of an instrument for identifying and mitigating these in clinical practice.MethodsA consecutive mixed-methods research design was used, comprising: a scoping literature review; a five-year retrospective review of informal and formal complaints; interviews with parents of CYP with LD and/or ASC and focus groups with healthcare professionals. A parent advisory group and CYP advisory group were established and met virtually throughout. All participants were paid for their time and received feedback on the study results.Results and ConclusionsThe scoping review identified 131 relevant papers, highlighting 11 different risk factors, including sensory/physical environment, procedures and interventions, waiting, sleeping and communication. Data collection with staff and parents built on these findings, revealing two further risk factors associated with equipment and eating and drinking. The review of complaints additionally revealed safety risks associated with hospital transport.Delivery of safe care to CYP with LD and/or ASC and their families is dependent upon identifying the multiple and compounding risk factors associated with being in hospital and delivering reasonable adjustments to mitigate against these. The findings will inform the development of a risk assessment instrument.