Taking a Child with Medical Complexities to the Emergency Department? Here is what we learned from 9 parents!
Children with medical complexities are a growing population of children who continue to grow and live longer in their communities as our medical treatments and technology improve. These children may require extra support breathing, feeding or communicating and often require medications and extra care at home. Frequent follow up with specialty pediatric clinics help keep these kids stay healthy at home but acute changes can happen and lead to more frequent visits to the emergency department. Because their diagnoses are complex and involve many of the body’s systems, they can get sick more quickly than other children. Parents of children with complex medical needs become experts in their child’s specific care needs and are important advocates for their child in the emergency department.
We were eager to interview parents of children with medical complexity to learn more about their experience in the emergency department and any information needs they may have.
We set up zoom calls with 9 parents of children with complex medical needs who had taken their child to the emergency department at least once in the last 12 months. We used a method called “content analysis” to organize the common topics that parents discussed in the interviews. Four main categories of conversation are described below.
How is the Emergency Department Different for Children with Medical Complexity?
Parents in our interviews described how visiting the ED involved lots of preparation to ensure all their child’s medications, special feeds, equipment, and information was brought to the ED. Parents understood that these visits may lead to admission to hospital or at least many hours to days in the ED. Waiting room experiences varied as sometimes they would bypass the waiting room because of their child’s acuity or it was unrealistic because they couldn’t reliably plug in their child’s equipment needed while waiting. Many parents shared the concern of waiting rooms being a risk of exposing their child to a new virus and putting them at additional risk due to their child’s vulnerable immune system.
Parents as Key Care Coordinators
Understanding when to go to the ED and when to seek another option is a skill parents learn by collaborating with their child’s pediatrician and specialty clinic teams. Parents are key members of their child’s care teams and at times it can be difficult to attain all the new skills that come with being a “medical parent”. There is no handbook or course you can take to prepare for parenting a child with complex medical needs and confidence comes with experience.
Some parents shared advice they had for others, like preparing a “go bag” (Interview 5) packed with extra clothes, medications, information, and supplies needed for extended time if they need to go to the ED.
Another parent said “I think that’s one of the biggest things I’ve learned is that if I’m noticing something, I need to advocate and use my voice. So that, you know, I can be my son’s voice because while for maybe a typical child these little changes might not be a big deal and that it will go away and recover on its own. For someone with a complex disease that’s not the case. Those little changes often mean something bigger is coming.” (Interview 3)
Emergency Department Experience and Resilience
It is no secret that going to the emergency department for your child can be stressful and traumatic. In the families we talked to, 40% took their child to the ED four or more times in the last 12 months. Painful procedures such as needle pokes for blood tests or IV starts can contribute to the distress children and families experience in the ED. For this population, many parents can describe that common distraction techniques used often don’t work as their child has been through this before and knows what is to come. Other parents described their child as being too lethargic to react or they have gotten used to the process. Many experiences parents described align with pediatric medical traumatic stress from an individual experience, interactions with staff or lacking systemic support. We need to better understand what role the ED can have in mitigating additional stress for parents of CMC and their children.
Communication and Learning Preferences
Communication in the ED remains an ongoing issue that parents described. Some parents described frustration with having to repeat their child’s long health history multiple times to multiple people often when timing is not ideal (i.e. their child is receiving care, trying to sleep, during a stressful procedure). Communication between specialty teams was identified as a concern as well and parents at times have to act as the middleman between various specialties their child is followed by.
Parents were asked if they used any sort of summary tool to succinctly summarize their child’s health history and needs. A few parents noted they have a binder or use their child’s last discharge letter. However, a summary tool was not consistently used within this sample but all parents were open to the idea.
Responses were varied when asked if parents preferred an online or physical copy of a tool or resource but overall online was preferred. Parents learned about the ED through experiencing it- no one received formal teaching at discharge or on other appointments about what to expect. A resource to help parents know what to expect and what to bring as a parent of a child with more complex medical needs accessing emergency care was something suggested by many parents to help them better anticipate processes, what to expect and what to bring.
Next Steps
We appreciated the insight from this group of parents and will use this information along with other research findings to create an online resource for families. The resource will support communication in the emergency department for children with complex medical needs. If you have a child with complex medical needs, we encourage you to ask their primary care provider what you can do to prepare for an emergency department visit and talk about what information or supplies would be helpful to bring for you and your child.