Promoting Resilience In Teens Fighting the Toughest of Diseases

 

GenUI

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Updated Sep 25, 2017

At A Glance

Seattle Children’s provides hope, care and cures to help every child live the healthiest and most fulfilling life possible. Upon the heels of launching a new program rooted in exercises designed to help teenagers and young adults with cancer and type one diabetes cope with their diseases, Artefact and GenUI teamed up to deliver an iOS app that embodies said program's mindfulness and stress management interventions. 

A Vital Time 

A hard fact: adolescents and young adults with life-threatening illnesses don't have the same increases in survival rates as younger pediatric patients and adult patients. Why? There is evidence that people diagnosed with cancer between the ages of 12 and 25 are at higher risk for poor psychosocial outcomes, including anxiety, depression and post-traumatic stress, both during and after cancer treatment. In addition, research shows that this group is less likely to go to college, live independently, form close relationships or have a job post-treatment.1

“We believe these inferior outcomes for those who’ve had cancer as teens or young adults are because their disease hits at a key developmental time. Executive function – setting goals, making decisions, deferring gratification, controlling impulses – is not fully developed. Also, part of how people learn to be resilient is by overcoming adversities. Teens haven’t had the chance to develop these skills in ways that help them navigate something as big as cancer.”

Dr. Abby Rosenberg, oncologist, bioethicist and palliative care researcher, Seattle Children’s

Joining forces with Dr. Joyce Yi-Frazier, a health psychologist and clinical research scientist, an intervention model called PRISM (Promoting Resilience in Stress Management) was designed to teach teen patients resilience to try and improve both survival outcomes and psychosocial outcomes for adolescents and young adults with cancer. Originally launched with a therapist coming to a patient’s bedside and working through exercises on mindfulness and gratitude with pen and paper, it was quickly apparent that that’s not the most effective way to help teenagers form new habits–especially not the digital-savvy teens of today.

Meet Them Where They’re At 

Knowing that a teen’s prioritize their mobile device, social networks and own sense of time, GenUI collaborated with the design team at the Artefact Group to extend Dr. Rosenberg and Dr. Yi-Frazer’s curriculum to a digital solution -- specifically, the creation of an iOS app. 

“The partnership with Artefact and GenUI will generate a version of PRISM that is widely accessible, speaks the language of teens and young adults in a savvy digital platform, and most importantly, meets the needs of patients and families navigating adversity caused by a serious illness.”

Dr. Abby Rosenberg, oncologist, bioethicist and palliative care researcher, Seattle Children’s

 

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Pilot Goals for the app

  • Increase the impact of the intervention: Once fully developed it could be possible to deploy PRISM education independent of the availability of researchers at the bedside. In addition, it could reach teens and their families on personal devices when not at the hospital, to coach and nudge them to continue in their practice. 
  • Accelerate an understanding of the effectiveness of resilience techniques in digital environments: Through focus groups, user evaluations and analysis of the longitudinal usage data, we can seek to gain further understanding of the patient experience and the effectiveness of the different training modules.
  • Demonstrate how thoughtful design, outcome-focused thinking and technology can augment the impact of the work of researchers, scientists and healthcare providers. Additionally, the hope is to show that digital interfaces like this expand the impact research-driven interventions in hospitals can have on patients across the US and beyond.

Since its original pilot, PRISM has been disseminated to patients in oncology, diabetes, cystic fibrosis and end-stage renal disease participants.

“We want to bring the research-driven PRISM program to more teens and their families. The experience of illness during adolescence provides a profound opportunity to nurture lifelong skills in resilience and stress management. With Artefact’s elite design skills, GenUI’s architecture and Dr. Rosenberg’s fastidious research, we have a marriage of unique skills that allow us to leverage the PRISM program to reduce suffering not just here in Seattle but for teens and families experiencing stress and illness elsewhere, too.”

Dr. Wendy Sue Swanson, pediatrician and Chief of Digital Innovation, Seattle Children’s

1-https://www.seattlechildrens.org/about/stories/promoting-resilience-reducing-stress/