The Patient Perspective, Part 2: The Roberies
Updated: Aug 5, 2020
Welcome back readers! This week I want to share another installment of my Patient Perspective series. Meet the Roberies!
Ashley and Shane are parents to 12 year old Brayden and 9 year old Arley. The Roberies live a half hour out of the city in Beaumont and are used to regular hospital and clinic visits. Ten years ago, Brayden was diagnosed with rhabdomyosarcoma, a soft tissue cancer. As a result, Brayden underwent intensive treatments including radiation, chemo, and a stem cell transplant as a toddler and young child. While Brayden is now in remission, he still experiences some long term effects. This means he will have check-ups and appointments at various clinics for the rest of his life. During the pandemic these appointments are being completed virtually, and while it may have been scary at first, tele-health appointments have had an enormous positive impact on Brayden and his family.
Ashley described Brayden’s normal, in-person appointments as “month-long” appointments, despite often seeing the clinician for just 15 minutes. For Brayden, an appointment at the hospital can bring on a lot of anxiety and stress, both before and after an appointment. In the weeks leading up to an appointment, Brayden is not himself. He is anxious and does not sleep well. Even if an appointment has gone well, Brayden often leaves the hospital exhausted and still anxious. This anxiety lasts 2-3 weeks after an appointment while he decompresses and slowly returns to being himself.
In the last few years Brayden has not gone back to school for the remainder of the day following an appointment because he is just so exhausted. Ashley shared that as a mom, this is hard to see your child go through, and can contribute to your own anxieties. When booking an appointment Ashley needs to coordinate with Brayden’s teachers to try and make sure in the weeks following an appointment there is nothing too major he will miss while he readjusts to being himself again.
As could be expected, Brayden was a little uneasy before his first tele-health appointment. He was unsure if a tele-health appointment could successfully take the place of an in-person appointment. Brayden worried that because his doctors could only see him through the screen and not face-to-face that the appointment may not be thorough enough. However, once the appointment started Brayden was reassured by his doctor and he started to relax - maybe this could work. And work it did!
A tele-health appointment meant that Brayden had no hospital related stress and was able to take comfort in knowing he was not risking exposure to COVID-19. Even without the presence of the pandemic, Brayden sometimes worries about catching a cold or flu when he visits the hospital.
A second benefit is that the appointment started on time and there was no waiting room or overbooking. Ashley says that sometimes they will have a 15 minute appointment but due to the clinic being so overbooked they end up waiting hours to see the doctor. With tele-health, Brayden had that same 15 minute appointment he always does, but without the waiting room and accompanying anxiety. With the appointment being so timely this also meant Brayden’s dad was able to attend the appointment.
Through talking with me Ashley realized something she hadn’t considered before. Tele-health appointments allow for Shane to come to Brayden’s appointments too! For the last three years Shane hasn’t been able to make it to any of Brayden’s appointments because he works night shift and needs to sleep during the day. A tele-health appointment is just a small interruption in the flow of the day though, so he is able to wake up for the appointment and go back to sleep after. It is exciting for Brayden to have both his parents at his appointments, for Shane to be able to attend, and for Ashley to have someone else listening to what the clinician is saying.
By far, the biggest difference for the Roberies with tele-health is in Brayden. Both Ashley and his clinicians have described Brayden as a “totally different kid” during tele-health appointments than he is during in-person appointments. Ashley has seen a shift in Brayden where he is more comfortable, confident, and engaged in his care. Previously Ashley primarily spoke for Brayden, but tele-health appointments have empowered Brayden to advocate and speak for himself. For the first time ever, Brayden really took charge during his appointment and was actively a part of his own care, even telling one of his clinicians he would call her if he had concerns.
Perhaps most profoundly though, was how quickly Brayden was himself again after the appointment. With tele-health, he was “back to Brayden” within minutes of the end of the appointment. There were no weeks following the appointment of anxiety and exhaustion, but instead a quick chat and then off to play with his toys or get a snack. During the appointment there was no jump in anxiety and he was smiling! His tele-health appointments have been such a positive experience for him and he hopes he is able to do more in the future. Brayden feels he is getting the same quality of care as he would normally, but without all the anxiety that surrounds his appointments in the hospital.
The Roberies’ experience with tele-health highlights the impact virtual health can have for patients and families, even for those who do not live far from the city. Tele-Rehab 2.0 is working to provide care to families like the Roberies in rural communities and in long term care facilities now, and after the pandemic so that patients like Brayden can continue to experience quality care without the stress and anxiety of an appointment in the city. Tele-Rehab 2.0 works to make care an accessible, quality experience for all Albertans. With each patient story I hear I know that tele-health is working and can only get better from here!
Special thanks to Ashley Roberie for speaking with me and sharing your experiences so freely. Your story is so valuable to our work and to the future of healthcare.