Taking a child to the emergency department can be stressful for any family.
But the crowds, loud noises and long waits can be even more challenging for children with intellectual and developmental disabilities (IDD) that affect their physical abilities, thinking skills and emotions.
Now those families have a new place to turn for support and advice, thanks to a University of Alberta research program for children’s health.
A free interactive infographic shares ways to make a visit to emergency less overwhelming for children with autism spectrum disorder, Down syndrome, fetal alcohol syndrome, spina bifida and cerebral palsy.
Parents can learn when to seek help at the emergency department, how to cope with the high-stimulus environment of a waiting room and how to be an effective advocate for their child once they are seen.
“Each child’s needs are unique, and parents are the experts on their children,” says Dr. Shannon Scott, professor and dean of the Faculty of Nursing and principal investigator of the ECHO research program, which produced the resource along with the Alberta Research Centre for Health Evidence.
“We aim to put evidence-based information into parents’ hands so they feel empowered to ensure their children get the best care possible.”
Deciding when to go to hospital is one of the hardest moments for parents of children with IDD. Vomiting, dehydration, seizures or concerning behaviours such as being very aggressive or doing things that are risky can all be cues that it’s time to seek help.
Parents are advised to bring along a “go-bag” with comforting items such as toys, snacks and blankets. Other advice includes asking for sensory kits or lower-sensory spaces while they wait, and using breathing exercises — for example, pretending to breathe in the smell of flowers and then blowing out candles — to help everyone stay calm.
Parents should also carry a summary of their child’s medical history, medications and diagnosis, as they may be asked for this information repeatedly from different health professionals, Scott says.
ECHO has previously created numerous other easy-to-understand resources for parents on how to manage common childhood illnesses such as asthma, ear infections and stomach flu, and when to seek help at the hospital.
Funding was provided by the Stollery Science Lab Distinguished Researchers program through the Stollery Children’s Hospital Foundation and the Women and Children’s Health Research Institute