We’ve kicked off a new era at Ranken Jordan, creating a new department focused on scientific research and innovation with the goal to advance care for medically complex children.
As part of our commitment to research, we published a review paper in the peer-reviewed journal, Children, in which we outline the negative effects of prolonged hospitalization for children with complex medical needs and how our unique care philosophy, Care Beyond the Bedside, is specifically designed to diminish those effects.
I co-authored this paper with Claire Wallace, PhD and Patrick Hogan, MPH . There are five takeaways we hope the pediatric medical community, the complex care community, and caregivers learn from this publication. Think of it as the TLDR version – as the kids say!
1. Prolonged hospitalization takes a major toll on the whole family.
Prolonged hospitalization has a negative impact on the child’s family. Parent-child and sibling relationships can be disrupted, and families often face stressors like visitation barriers, financial strain, and managing life with other kids while one is in the hospital. When a member of the family is hospitalized for months or even years at the time, it alters the family dynamic and adds significant stress to the family unit.
2. The hospital environment itself can impede a child’s development.
Children with complex medical needs, particularly children ages 0-5, can spend months, sometimes years, in the hospital, which can contribute to developmental delays.
The typical hospital is not designed for developmental purposes. Children are often in a bed alone in their hospital room so they get limited social interaction and time to have a “normal life” like learning to crawl, walk, and play with other kids.
3. Our unique care model, Care Beyond the Bedside, offers more stimulation for hospitalized children than the typical hospital.
Our unique care model, Care Beyond the Bedside, is based on the philosophy that play and healing are inextricably linked and that children develop best when they are out of bed, participating in life with their families.
We’ve designed our hospital with Care Beyond the Bedside in mind to provide children with opportunities to get out of their beds. Amenities include indoor and outdoor playgrounds, a rock-climbing wall, and plenty of event spaces to host petting zoos, magicians and more, providing experiences often reserved for non-hospitalized children.
4. Creating spaces for families to spend quality time with their kids at the hospital can make a huge difference.
In our paper, we tell the story of Forest, who was 14 months old when he was diagnosed with a spinal cord tumor.
After spending time at an acute care hospital, Forest spent nine months at Ranken Jordan getting well enough to go home. Care Beyond the Bedside gave Forest’s parents the chance to spend time with him out of his hospital room, allowing them to re-establish themselves as a family. Forest and his parents loved to eat meals together and spend time outside, but they also had time to practice taking care of his ventilatory support regimen and transferring him to his bed and wheelchair.
When it was time for Forest to be discharged from Ranken Jordan, there was a shortage of private duty nursing care but Forest’s family felt prepared to care for him.
Without Care Beyond the Bedside, this scenario would have been less likely to happen. Being able to take Forest out of his hospital bed and enjoy positive and ordinary experiences as a family filled his parents with the confidence and readiness they needed to take care of Forest at home as a family.
5. Hospitals need to prioritize solutions to keep kids stimulated in the hospital.
If I could design the perfect pediatric hospital, I would include suites for families adjacent to their child’s hospital room. Some hospitals are already starting to look at this, like BC Children’s Hospital in Vancouver, Canada, with their upcoming Centre for Health Complexity.
And while we know most hospitals can’t build new rock walls or plan new hospital rooms for families, all hospitals should be looking at the impact of prolonged hospitalization on child development and what can be done to keep kids engaged now.
For our part, Ranken Jordan is continually working to provide a more stimulating hospital experience for our patients with new innovations like the Patient Play Associate role and the OZ program for our younger patients.
We are committing to more research in this area and we urge all hospitals to join us. As we say in the paper, childhood cannot wait for discharge.
How you can help
If you’re interested in supporting our research on the effects of prolonged hospitalization, please consider giving to the Ranken Jordan Pediatric Hospital Foundation at rankenjordanfoundation.org/donate.
