The most important thing for anyone facing a hospital stay with their child is to know that as a patient family, you are part of the care team. It’s easy to get lost in trying to understand the hospital environment and unfamiliar processes. No one on the medical team expects families to understand the medical jargon—it’s our job to help them make sense of everything. We want our patient families to stop us and tell us if we’re using terms that don’t make sense or if we’re misremembering something they’ve told us about their child. They should always speak up with any questions or concerns and be transparent about what their priorities, expectations, and goals are during their time with us so that we can adjust our care as medically able.
The knowledge and experience they bring to the table as parents or guardians are invaluable. They can ask for ways to partner with the medical team in the care for their child throughout the hospitalization. Patient families have a right to be engaged in every single conversation we have about their loved ones at any point in their stay. So many families don’t realize until they’ve been in the hospital for a long time that they have a right to be included in things like daily rounds or the handoff report, which occurs during shift change when a new care team takes over.
Speaking of shift changes, the care team should always be preparing the patient family for next steps and making sure they’re aware of any deviations from the established routine. These conversations should occur not only at times of transition but at any time throughout their child’s medical journey. Another essential part of the medical journey is for patient families to know whom all their resources are and how those people can provide support. This includes employees from departments like social work, pastoral care, case management, music therapy, volunteers, housekeeping, and food services. There are a whole host of services dedicated to easing the difficulty of an inpatient stay for families. Just about any problem you can think of, we can provide a solution—patient families just need to feel empowered to ask for that help.
When enduring a lengthy hospital stay, it is imperative that patient families take care of themselves. Families should take their friends and family members up on their offers to help. If someone can come to the hospital and allow the patient family to leave and exercise some form of self-care, that is extremely beneficial. Getting breaks from being in caretaker mode is so important for their well-being and their child’s well-being through what can be an incredibly difficult and trying experience.
Patient families should make sure they understand what the plan of care is for their loved ones. They shouldn’t be afraid to ask what goals need to be met for their child to turn the corner and go home. Having something tangible to focus on and work toward can provide much-needed hope and structure during a time period when they feel out of control and uncertain.
These are three good questions for families to ask: “What is wrong with my child? What are we going to do about it? Why are we going to do that?” Families will want to learn more about how to provide ongoing care before they are expected to provide it. Beginning that transition while still in the hospital can help make the return home less stressful and overwhelming.
This story is by Brennan Lewis, director of patient education and engagement at Children’s Health, as told to Christiana Nielson. Lewis began her career as a nurse in 2002 and over the past 17 years, she’s helped families with ailing loved ones maneuver the overwhelming maze the hospital can often be.