Time Toxicity in the Special Needs Community: Rethinking Pediatric Physical Therapy in Reno

When I first moved to Reno, Nevada and began working with our local medically complex community, I often felt overwhelmed by the amount of support each family required and how little I felt I could do for them. On many occasions, I sent friends and family the GIF of Troy (Donald Glover) from Community walking into a room holding pizza boxes, only to find the entire room on fire, Pierce (Chevy Chase) bleeding on the floor, and Jeff (Joel McHale) waving a fiery cloth around trying to smother the flames. Troy had only been out of the room for a minute.

To be clear, I am very aware that my overwhelm was nothing compared to what families raising children with complex medical needs in Northern Nevada experience daily. This post is about how, early in my career as a pediatric physical therapist, I often felt like I was bringing pizza to families when I needed to be bringing a fire extinguisher. And sometimes I think they were internally asking themselves why on earth I thought they needed a pizza at that moment.

In this analogy, the pizza represents physical therapy interventions or recommendations that don't help put out a family’s biggest fires. Maybe it's recommending a 45-minute stretching protocol for hamstring contractures when what the family really needs is resources to get a ceiling lift installed in their home to make transfers easier—or ideas for lower extremity positioning so their child is in less pain.

Very quickly, I realized how awful and pointless it felt leaving a family with a pizza when they had much higher priorities. It never felt right giving a family yet another time-consuming task to complete when they already had so much on their plate—doctors’ appointments, pediatric therapy sessions, feeds, medications, IEP meetings, and more. Intuitively, I began focusing on in-home therapy recommendations that could be seamlessly integrated into daily routines and evaluating families' highest-priority goals so that our sessions were truly beneficial, not just another chore on their to-do list.

When I finally heard the term “Time Toxicity” on a podcast, I had a name for the concept that had been floating around in my head. The episode, titled “Time Toxicity and Shared Decision-Making in Cerebral Palsy,” was hosted by Dr. Dayna Pool and Dr. Ashleigh Thornton, based on a journal article by Frumberg, Church, and Rosenberg. Dr. Nathan Rosenberg, an orthopedic surgeon, participated in a thought-provoking discussion about the sheer amount of time patients and families spend interacting with the healthcare system and whether or not that time truly benefits them.

The core reflection is that the more time a child and family spend in healthcare settings, the less time they have for simple leisure and living. As pediatric PT practitioners, this gives us a duty to ensure that the physical therapy we provide enhances their life enough to be worth the time it takes. Why spend an hour a week on PT if it isn't improving function or quality of life, when that hour could be spent enjoying life as a family? The podcast encourages an emphasis on the "F-words" of childhood disability: fitness, function, friends, family, fun, and future.

Dr. Rosenberg also proposed that as healthcare professionals, we should focus on recommending interventions that have proven efficacy. Time spent on non-evidence-based interventions can be "found time"—giving families back precious hours to spend with friends, relax, or direct their energy and resources toward enjoyable activities like family vacations.

I enthusiastically agree with that sentiment, with one caveat: some families strongly feel their child benefits from non-evidence-based or emerging therapies, such as Dynamic Movement Intervention (DMI). These families shouldn't be judged for those choices. Who am I to tell them what is or isn't worth their time, or what does or doesn't work for their child? We also know there are significant limitations in both the funding and implementation of pediatric physical therapy research. That said, I do believe families deserve to be fully informed of current research so they can make empowered decisions for their child's care.

That brings up another excellent point about the limits of pediatric therapy research that the podcast also touches on: we have remarkably little data on proper dosage for interventions, or whether families view the time spent as worth the return. In a nutshell, how much time does it take to achieve a specific benefit? For example: How many hours does a child need to spend in gait training to walk an extra 100 feet? Better research will allow families to make truly informed decisions, asking questions like: "Is it worth spending 100 hours in therapy to gain 500 feet of walking distance?" And does that answer change if those 100 hours only yield an extra 5 feet?

As a pediatric physical therapist in Reno, I hope to see continued progress in research so I can offer the most impactful interventions possible—helping families put out fires rather than just bringing them pizza. Ultimately, my primary goal at Ready to Roll Physical Therapy is to provide mobile pediatric physical therapy in Reno-Sparks that empowers families to live joyful, meaningful lives focused on their own values and goals.