Design + Research
During this last semester I used my research paper as a change to write about a topic that has become a huge part of my life:
February 11th, 2017. The day that my family found out my 13 year old sister had Osteosarcoma. After 10 straight months in the hospital, a 24+ hour surgery to remove the tumor which has encased her bottom two vertebrae, 9 rounds of chemotherapy followed by rehab and now weekly therapy, she is currently cancer free. During her time at the Children’s Hospital of Los Angeles, seeing her daily battle with such an aggressive disease, I was exposed to the huge disconnect between the physical design and the function of the technology used for pediatric cancer patients. This disconnect can often cause additional stress to children that are taken out of their home and are surrounded by new elements.
While the Children’s Hospital of Los Angeles is one of the top 10 hospitals for pediatric cancer and has some of the most advanced forms of technology to care for patients, like my sister. However, these devices are designed in ways that cause additional stress in patients that are already completely out of their comfort zone. On multiple occasions the PET/CT scan machines would not open up until late at night for in-patient use and my sister would be woken up and taken down the cold harshly lit hallways and I saw first hand how traumatic the experience of using this machine was for her. Thankfully, she always had family with her to help calm her down, but it would often take hours to get her to cooperate for the scan. Even once the scan was over it would take her hours or even days for her anxiety to dissipate enough for her to fall asleep.
On nights where she was able to sleep it would often be interrupted by the beeping of the infusion pump machine which beeps with blinking lights every couple of hours or minutes as an alert that assistance is needed. While this alert is for the nurse, it is often only really heard by the patients who are disturbed from getting the rest they need to heal. This has a somewhat simple solution of replacing the beeping and blinking with an alert on a separate device that is used by the caregiver. This could also be improved by having different levels of alerts based on the severity of the medicine and patients level of need. This could also save the nurses lots of time and unnecessary trips to patients' rooms just to press the silent button (Cvach).
During my research I spoke to Nicole Wong, a second year medical student at The University of California, Los Angeles, to better understand where this disconnect begins. When asked how mental health is addressed when learning how to treat their patients, Wong said that “all physicians are trained to understand the importance of mental health but it doesn't necessarily become a pressing concern for the physician in a situation where there are frequent physical crisis, like in the case of the cancer patient.” While there is no denying that any physical crisis is a top priority, it is unlikely that any mental health triggers would be caught until they physically manifest themselves in “...an obvious crisis” as Wong describes saying “the physician is far more likely to notice a patient whose depression has stopped them from eating for three days then the patient who is quieter than normal due to anxiety.” Had the patient's mental health been monitored from the early days of diagnosis, this anxiety might have been caught before it got to the point where they could not keep their food down ( “Interview with Medical Student Nicole Wong”).
Each added element of stress increases the time it takes patients to heal and makes it harder for nurses and doctors to do their jobs. It’s been proven that stress weakens the immune system, not only making it harder to recover from an illness but making it more likely to catch an additional sickness. Some of the most common results of stress are discomfort (such as heartburn, heachache and stomach ache), higher risk of heart attack and depression, tense muscles and shortness of breath (“Stress Effects”).
One of the most important repercussions of stress is insomnia, since sleep is one of the most important factors in the healing process. The main problems with the relationship between stress and insomnia is that it is causal; a lack of sleep causes stress and an increase of stress causes an inability to sleep. Since the hormone cortisol is increased in times of stress and of sleep, it is not the lack of drive to sleep that causes insomnia but too large of a drive to stay awake, which is known as hyperarousal and is caused when stress is caused while awake and cortisol is released. When cortisol is released during the night, it has mostly been shown to cause less REM sleep and more level 2 and 3 sleep (“Stress and Insomnia” ).
This disconnect does not go away once the patient's disease no longer needs to be treated with inpatient care. Even now that my sister has been discharged, she returns to the same hospital multiple times a week for physical therapy. Her continued treatment is centered around regaining the ability to walk, which was lost due to the removal of her bottom two vertebrae, which were replaced with metal rods and screws.
While her levels of stress were much lower once she was discharged and returning to the comforts of home, the transition from 24/7 care with trained nurses to little or no help at home poses a whole new set of challenges. The technology that is used once the patient is home is often more prone to errors and is not only not designed for children but is often hard for the parents or caregiver to navigate. This often results in added trips back to the hospital along with therapy and checkups.
One of the most used forms of technology used in my sisters physical therapy treatment is the exoskeleton. This device is a “robotic exoskeleton for comprehensive gait therapy which provides a superior rehabilitation experience for patients and therapists alike,” in other words, it supports the body by supporting the ability to walk to those that no longer can due to stroke to spinal injury. While aesthetically not the most welcoming device to a child, it is slightly less intimidating than other devices, such as the PET/CT scan machine, since the size is less overwhelming and the user has more control over the machine. This machine has been the biggest part of my sister regaining strength, because it gives her body the support it needs to make it possible to do the movements needed to build back up her strength (“Ekso GT” ).
This machine is undoubtedly one of the best advances for this specific kind of recovery, yet it still has room for improvement. Some of the flaws include that this device is only available at hospitals and recovery centers, due to its high cost, size and complexity. This means the patient as minimal opportunity to use the device and little possibility of procuring one for the home. These flaws create multiple design tensions because the size and complexity give it the power to support the human body, for both children and adults which gives them the support needed to walk again. These aspects also limit the patient to using it to walk around and around the hospital over and over again at every physical therapy session. This gives them no distraction from the discomfort they are likely feeling and they practice the movement so many of us take for granted. While this brings a challenge it also presents an opportunity to incorporate one of the many advances in technology, virtual reality. If we could get the patient to be excited to explore something new at there next appointment or reach a new level of an interactive game, this motivation could be a turning point in there recovery process and help distract from all the painful memories they have at the hospital as well as their physical discomfort.
Virtual rehabilitation for children is a relatively new approach and is often used to “address functional rehabilitation goals related to physical, cognitive, social, and psychological impairments.” These goals are being addressed by adding “customized rehabilitation-specific systems that integrate technological advances in virtual reality, visual effects, motion tracking, physiological monitoring, and robotics.” One of the main draws of adding this virtual element is the ability to customize based on the patients needs. This has been used to help patients recover from brain injuries, because each element can be controlled which allows therapists to work with and test different parts of the brain. This could also be used for physical recovery as well, by tailoring a virtual game to strengthen different muscles in the body based on the patient's needs.
However, since this approach is still new there are still a lot of barriers preventing clinical adoption. Some of which include common challenges such as funding, space, trained staff and a substantial amount of patients that would benefit from such a specialized treatment since the current resources would only help a specific kind of recovery. It also requires a certain kind of client motivation as it can be hard to make a child who has had such negative experiences with the technology used in a hospital. Another common obstacle is that the parents often want to limit their child's screen time and do not want to introduce another platform that would add more time in front of a device. However, it can also be argued that this is just a temporary tool that will allow their child to recover at a faster rate and be able to enjoy outdoor activities sooner by motivating them and making the process a lot more enjoyable. Most of these challenges stem from the fact that the progress that has been made is still limited and not a lot of details have been added to virtual rehabilitation demos that can be used right now. Once the games account for kids with certain limits to their range of motion and other challenges that are faced in the rehabilitation process, the number of patients that can start to test these demos and provide more research for the developers, the more kids can be helped. Once the recovery process is proven to be shorter the hospitals will see that it is worth the investment and be more willing to put their money towards it (Glegg).
There are a few products on the market that, while are not exactly the same as the virtual rehabilitation process, are a step in the right direction. One such product is the Rapael Smart Glove for hand rehabilitation, which is a “physical therapy device for hand and arm exercises clinically proven to enhance function for children with hemiplegia, including cerebral palsy.” This uses high tech sensors and virtual reality games to help kids with brain and nervous system disorders (“Smart Kids”).
The Children’s Hospital of Los Angeles is one of the few hospitals that has started to incorporate virtual reality. The director of the Pediatric Pain Management Clinic in the Department of Anesthesiology Critical Care Medicine, Jeffery l. Gold, PhD, is leading a new study to “examine the effectiveness of virtual reality for children and adolescents undergoing painful procedures such as blood draws.” The immersive aspect of virtual reality allows the user to “become an active participant in a virtual world as it captures the visual, auditory and tactile senses, as well as the limbic sense of emotion.” When someone is immersed in this experience they release “endorphins that can produce an opioid response that markedly reduces the patient's subjective pain.” They have started by distracting kids with a virtual reality game while getting their blood drawn which has been successful. They are hopeful that the need for narcotics can be reduced if “evidence-based support for non-pharmaceutical interventions…” like virtual reality can provide a significant solution for procedural pain management (“Virtual Reality In Pediatrics”).
As technology continues to advance, it is crucial that they are made with evidence based design so that we can improve the care given and decrease pain and discomfort patients experience as much as possible. The time I have spent at the Children’s Hospital of Los Angeles and my ongoing research have deeply impacted my way of thinking and made me realize this large disconnect between design and technology. This gap is only becoming more and more pressing as we currently seeing just how much mental and physical health are intertwined and how much they impact society.
Work Cited
Chahrouri, Mariana. “Interview with Medical Student Nicole Wong.” 3 May 2020.
Cvach, Maria, and Michael Wong. “Nine Technological Solutions to Manage Alarm Fatigue.” 44X7 Solutions for Healthcare Technology Managment, 2014.
“Ekso GT.” Exoskeleton Report, 27 Mar. 2018, exoskeletonreport.com/product/ekso-gt/.
Glegg, Stephanie. “Virtual Rehabilitation with Children.” A Magazine of the IEEE
Engineering in Medicine and Biology Society (EMBS), 2017, pulse.embs.org/november-2017/virtual-rehabilitation-with-children/.
“Smart Kids.” Affordable Stroke Home Rehabilitation, www.rapaelhome.com/us/smart-kids/.
“Stress Effects.” The American Institute of Stress, www.stress.org/stress-effects#iLightbox[1b429ceeb45911e7be6]/0.