Improving safety and quality of care for children and young people with intellectual disability in hospitals

Abstract

Children and young people (0–16 years, 17–24 years) with intellectual disability experience healthcare inequities and poor outcomes compared with the general population due to negative experiences and patient safety events. This thesis aims to generate evidence on what influences care quality and safety for children and young people with intellectual disability in hospital and develop patient safety competencies by adapting the National Patient Safety Education Framework (NPSEF) to address inequities in safety and quality care for this population. The thesis aims to answer the following questions:

1. What are the factors that influence the quality and safety of care for children and young people with intellectual disability in hospitals?

2. What are the core competencies required of the healthcare workforce to provide high-quality and safe care for these children?

The systematic review highlighted staff training and systems changes to accommodate the needs of these children and young people safety and quality care at all levels of the healthcare system. Qualitative analysis report higher parent-reported safety events and rates of patient safety events per admission when compared with the general population. Parent and staff interviews highlight themes of safety from physical, psychological and emotional perspectives. Customised strategies for child engagement and parent partnerships is needed. Adjusting systems, processes and environments to better flag and plan for an admission using reasonable adjustments was needed. Staff competencies in identifying negative attitudes and how bias can lead to poor care safety and quality was also highlighted. The eDelphi study confirms relevance of the existing Patient Safety Education Framework for children with intellectual disability with additional topics on adjusting communication, working in a child and family centred way, transition to adult services, addressing psycho-social vulnerability and behaviours that challenge.