Seeking Care for Children with Intellectual and/or Developmental Disabilities in the Emergency Department: A Mixed Methods Systematic Review of Parents’ Experiences and Information Needs

Sarah A Elliott,1,2 Sholeh Rahman,1 Shannon D Scott,3 Wiliam R Craig,4 Lisa Knisley,5,6 Kathleen Shearer,7 Lisa Hartling1,2 1Alberta Research Centre for Health Evidence, University of Alberta, Edmonton, Alberta, Canada; 2Cochrane Child Health, University of Alberta, Edmonton, Alberta, Canada; 3Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada; 4Division of Pediatric Emergency Medicine, University of Alberta, Edmonton, Alberta, Canada; 5The Children’s Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada; 6College of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada; 7Pediatric Parents’ Advisory Group, University of Alberta, Edmonton, Alberta, CanadaCorrespondence: Lisa Hartling, 4-472 Edmonton Clinic Health Academy, Alberta Research Centre for Health Evidence, University of Alberta, Edmonton, Alberta, Canada, Tel +1 780-492-6124, Email hartling@ualberta.caAbstract: The objective of this review was to explore parents’ experiences and information needs regarding management of their child with an intellectual and/or developmental disability (IDD) in the emergency department (ED). We searched six electronic databases and grey literature to identify primary studies in English published since 2000. We synthesized quantitative and qualitative outcome data simultaneously using a convergent integrated approach and used a Mixed Methods Appraisal Tool (MMAT) to assess methodological quality of the included studies. Nine articles derived from seven studies were included (3 qualitative, 3 quantitative, 1 mixed method). Four main themes related to parents’ self-reported experiences were identified: 1) appropriateness of the ED to manage and support their child; 2) acknowledgement/recognition of their child’s IDD and incorporation of those considerations into overall care and management; 3) managing and navigating the ED environment; and 4) decision to disclose their child’s condition when visiting the ED. Two articles provided data relevant to information needs, highlighting parents’ desire to have resources supporting ED orientation and access to services within and outside of the ED setting. From the limited number of studies, it was evident that parents wanted better communication with healthcare providers and a greater understanding by ED staff around physical space settings needed to support their child. Resources supporting ED staff and parents to communicate effectively and work together can ensure that children with IDDs care needs are met. Further research into understanding parents’ experiences and information needs related to managing a child with an IDD in the ED is needed to guide the development of effective resources.Keywords: child, developmental disabilities, parents, emergency service, communication