FAQ

The status quo is to help young patients feel as “normal” as possible during and after their treatment. But honestly, there is nothing normal about a young person with a life-altering medical condition.

Our tools encourage young people to acknowledge what is scary or difficult—to go deeper into their experience—building strength through their digging deeper.

Just like our award-wining journal, Digging Deep: A Journal for Young People Facing Health Challenges, our game, Shadow’s Edge, helps teens build their emotional endurance through the power of exploration in personal narrative. Much of the original content found in Digging Deep is now embedded inside an immersive, 3D game world. Young people still create a journal, though they now do so within the context of an intriguing mobile game. Along the way, players have the opportunity to express themselves through art—well, graffiti that is!

Let’s face it—kids and teens live and learn through their technology. A young person may never pick up a self-help book. So, to make this psychological content accessible, we’ve embedded self-help interventions within a gaming environment.

Teens have told us there are times they feel like expressing what is going on with them, but they do not feel like speaking with anyone. Our game invites them to express their feelings and thoughts without having to worry about how to share them. It gives young people a safe space where they can explore what’s going on inside them.

Games can make exploring challenging issues more palatable, engaging, and interactive. They provide the player a chance to interact with the content, experiment, and practice what they learn, and all within a fun, immersive, and safe-to-fail environment. Gaming provides experiences without judgement or real-life consequence, thus allowing for safe experimentation.

More and more pediatric patients are surviving with complex diseases. Yet sadly, there hasn’t been parallel progress in helping young patients deal with the emotional side of their illnesses.

Patients may feel pressured to “be strong” for themselves or for their families. This may mean their true feelings stay bottled up. We all know how difficult it is to have hard conversations. Far too much remains unsaid, and patients are left alone with their feelings.

Complex treatments over an extended period of time take their emotional toll. Unfortunately, reimbursement pressure means shorter and shorter hospital stays. Patients may not be in the hospital long enough to receive the ongoing emotional support they need, or if they are in the hospital, they may be too sick to take advantage of it. Professional intervention and therapy are not easily accessible, often too expensive, may not be desirable to teens, or simply may not be available when they need it the most. The result is that only a small portion of teens who could benefit from ongoing emotional support are receiving it. Shadow’s Edge is designed to fill that gap.

Shadow’s Edge is designed for teens 13+ and young adults facing any type of significant health challenge. We targeted this age group because there are very limited resources for adolescents and young adults with these needs. This life stage is critical for identity formation—a process that can be impacted by illness.

Our typical player may be hospitalized or in outpatient treatment, have a serious, life-limiting, or chronic illness, perhaps be disabled or undergoing rehabilitation, or maybe be post-treatment and in remission. The content in Shadow’s Edge addresses the emotional content of these experiences, which are most common to young people facing medical conditions.

Most apps in the digital therapeutics space are designed to manage treatments, record symptoms, or promote healthy behaviors. To date, no apps for youth with medical conditions focus on the emotional wellbeing of the patient.

There are apps with a few “gamification” features, but they are not true games with immersive 3D worlds, characters, and storylines. Shadow’s Edge is unique in delivering psycho-educational content through a gaming platform.

Shadow’s Edge is not a shooting game, nor one about dominating your illness—it is about living in harmony with it. No other game exists for teens to reflect on their personal journey and to gain skills for dealing with their health challenges.

In Shadow’s Edge, players search for pages of a missing journal in a city devasted by a storm. Along the way, they bring color and life back to the city. The in-game story is a metaphor for the real-life situation the players are in. It serves to create a feeling of immersion, and it transports the player out of his or her real world into a fantasy world. Here, rules are simple and there is no real-world consequence or judgement for being true with one’s emotions.

The story provides the backdrop for the player’s actions and connects them with the quest. Shadow’s Edge is loaded with metaphors and subtle messages, and it is filled with psychological insights that resonate with players. Furthermore, the relevancy of the exercises and psychosocial content invites the players to apply what they learn to their real lives.

The player’s quest in Shadow’s Edge is to rejuvenate an abandoned, storm-ravaged city. Players accomplish this by searching for the pages of a lost journal, through which they express themselves in written word, and further by graffitiing their thoughts and feelings on the many surfaces of the city.

These writing prompts address common issues faced by young people with health challenges, and they guide self-discovery and insight. The only way to progress in-game is to write in the journal.  If the player doesn’t respond to the prompt when found, the page returns into the world where they take on a special glow, as though calling out.

The found prompts appear slowly, giving ample time to read and to absorb the questions. Once the player writes, he or she receives a stencil to use in spraying their graffiti. As a reward for writing, this acts as an immediate change in the game world that the player watches happen.

The more the player writes and sprays graffiti, the more the player is rewarded with fun and creative tools to continue to make more graffiti. Bit by bit, players see the impact their gameplay has on restoring the city of Shadow’s Edge. The idea is that this is a metaphor for emotional healing: as the players heal the city, they heal themselves. A player immediately sees the progressive impact his or her gameplay has on restoring the city of Shadow’s Edge. The goal of gameplay is to fully restore the city. Further, it is to honor the former city where the inhabitants had once connected through their artistic expression and the sharing of their inner selves. By doing this, players bring the characters’ families and the former citizens back to the world

In the second stage of the game, the player unlocks the ability to connect with other players through an Instagram-like sharing platform: Shadowgram.  With this, they can choose to share portions of their graffiti with others, even adding captions to their creations.  Other players in the game can then choose to send pre-set positive comments to that player. It is our hope that by sharing, players will feel more supported and less alone.

Additionally, there are three teen characters within the game who are referred to as “Guardians.” They lived in the city before the storm, and each of the three is dealing with their loss in their own way. These Guardians further embody the stages that deal with illness: Disruption, Disillusionment, and Discovery. The Guardians carry with them the wisdom of the city before the storm. With these pieces of wisdom, they support the player on his or her quest to restore life to Shadow’s Edge.

Shadow’s Edge guides patients to discover their personal story. The journey through Shadow’s Edge is non-linear.  Players complete their tasks at their own speed, in their own order, in their own way—the player is in control.

When the player enters the city of Shadow’s Edge, the city is dark and barren. Everything is out of whack, and it appears as though time has frozen. Gameplay has a direct impact on this world: as the player progresses through the stages, the weather becomes better, more light appears, buildings begin to repair themselves, plants and flowers return, and the world is filled with greenery. The player can move higher and higher in the city to view the progress that has been created through their graffitiing and journaling. Their progress follows through three distinct stages: Disruption, Disillusionment, and finally Discovery.

First, in the stage of Disruption, the world is “out of whack.” Cars are floating, the weather is bad, the buildings are broken or boarded up, and the city is dark, mysterious, and contained. As the player writes, dust appears on the ground as a sign of their progress, marking the places where they’ve been.

When a player progresses to the stage of Disillusionment, the dust has settled, the floating objects are grounded, and the weather has changed. It is now drizzling, yet light starts to appear through the clouds.  Plants start growing and the player can move higher to reveal new parts of the city.

The final stage is Discovery, where the world is now green, the weather is sunny and clear, and the buildings are repaired and modernized. The grounded objects have been cleaned up or are overgrown with beautiful plants, and sunflowers appear as a sign of optimism. The world is beautiful – covered by the player’s graffiti. Shadow’s Edge is full of promise, illustrated from Disruption all the way through to Discovery.

The characters and game worlds symbolize stages of emotional healing—Disruption, Disillusionment, and Discovery are the stages one goes through when moving through a difficult period to acceptance, and then to integration.

Each Guardian embodies the characteristics of a patient or survivor going through that specific stage.  As players help these Guardians, these characters provide players figure with whom to identify and empathize.

The Guardians don’t know the that other Guardians exist, and this creates mystery. “Why is this?” the players ask, and are challenged to investigate.

The color and style of clothes, the characters’ mannerisms, their dialogue, and even their names were chosen to represent their stages.  For example, Ty, the Guardian of Disruption, is quite tough-looking, yet seems broken and beaten, hiding behind her glasses.  She speaks about powering through and getting back to normal.

The next character, Maize, the Guardian of Disillusionment, hides behind her long hair, and her dark and baggy clothes, which help her to hide and to blend into the world. She turns away from the camera, hangs her head, and feels heavy.  She seems on the edge of losing hope, yet “finds herself” through her poetry, which helps her to see light at the end of the tunnel.

The final character is Pax, the Guardian of Discovery. Her name means “peace” and her clothes and hair convey her personal, effervescent style: she is bursting with thoughts for the player. She is confident and filled with optimism despite, like the other Guardians, being in difficult circumstances.

Journal writing is at the core of the game. The writing prompts address common issues faced by young people with health challenges, and they guide self-discovery and insight. Journaling is a way to capture a player’s story, then to reflect that story back to the player. Writing helps clarify thoughts and feelings and track personal growth over time.

All the pages are gathered together, along with their associated graffiti, into a “black book.” This black book is designed to look like a journal, which is a graffiti artist’s sketch book. The journal can be reviewed at any time, and individual entries can be reworked as the player wishes. The more the player writes, the more rewards he or she will receive. These can be stickers, new colors, or stencils to decorate and bring more life to their world.

As we express ourselves through writing, we both release feelings and come to a greater point of self-understanding.  Experiencing emotions and deriving meaning from understanding these emotions are critical steps to emotional recovery. As we work through this process, a new story of our life emerges. This “re-storying” helps us to integrate the trauma into who we are and to look more closely at our lives.  Acknowledging and understanding our story merges emotions and meaning, which helps us move forward.

The graffiti-making within the game helps express emotions when words prove too difficult.  Graffiti was chosen as a metaphor of self-expression: in real life, graffiti artists have something to share, and they put themselves “out there” to express it. It’s like a plant breaking free from underneath the concrete. Metaphorically, that’s exactly what young people with health challenges need to do—put themselves “out there” in a real way so they can be better understood and feel connected to others. 

Graffiti implies spontaneity—freedom for the artist to have it not be perfect–to take a chance and to create something, then to have the option of covering it, or adding layers to create something new atop it.  This encourages experimentation and is a metaphor for how one evolves over time.

Putting one’s “true self” out there is extremely challenging for anyone, and especially so for teens and young adults faced with health challenges. It is our hope that, by learning how to do so in Shadow’s Edge, in a medium that these young people are comfortable with, they will be find themselves more able to express themselves in real life.

Narrative therapy is central to Shadow’s Edge: understanding our evolving personal narrative helps us to move through and to heal from our trauma. Shadow’s Edge is based on the idea that, in retelling our personal story, we come to understand and accept it—to own it, and to incorporate it into who we are. 

From positive psychology, we know that trauma can set a stage for growth.  We believe resilience can be built. We designed targeted questions to develop the factors shown in the academic literature to correlate with resilience. 

From humanistic psychology, we value the expression of one’s full range of emotion.  From existential psychology, we understand the importance of deriving meaning from one’s experience in order to heal, then to move on.

We embedded psychosocial interventions within the metaphors of Shadow’s Edge—in the characters, the game worlds, and the main quest.  We’ve also inserted psycho-educational “nuggets” inside the in-game as another way of providing useful self-help content to Shadow’s Edge users.

Like therapy, Shadow’s Edge creates a safe place—a blank slate—to hold and to process feelings. In the world of Shadow’s Edge, this “blank slate” is not a sterile white sheet of paper, nor is it a therapist’s office. Instead, it takes the form of a sprawling cityscape—one that comes to life through players’ self-expression.

Just like therapy, the goal of Shadow’s Edge is to help players to process their emotions and to give meaning to their experiences in order heal and to move on. Shadow’s Edge lets players do this in a fun way: by spraying graffiti and creating a journal which holds their personal narrative. Through gameplay, players find their voice, come to terms with their experience, and connect to others in similar circumstances.

Shadow’s Edge can be used in conjunction with therapy, helping young people identify their needs and put words to feelings.  We encourage players to combine self-help with professional intervention whenever possible. We hope that Shadow’s Edge acts as an effective tool to help young people to interact with therapists or caregivers in a new, productive way.

Shadow’s Edge is the first-ever mobile game that empowers young people to discover their personal story and to find the courage to express themselves authentically as they live with significant medical conditions. It is not a game about dominating your illness and shooting it down as in other games for children with illness.  We know this may not be a reality for many young patients.  Instead, the goal of Shadow’s Edge is to learn to live in harmony with one’s medical condition.

A “Digital Therapeutic” is a product that harnesses the power of technology to deliver interventions to patients in order to achieve positive health outcomes.  Other Digital Therapeutics are not true games in the sense of havening a storyline, quest, and characters, and would more rightly be considered apps. The majority of apps on the market today that fall into the “psychology” space deliver cognitive behavioral interventions for diagnoses such as depression, anxiety, phobias; teach stress reduction, mindfulness or coping; or in the case of virtual reality, are being used for distraction for pain management, visualization, desensitization, or entertainment. Shadow’s Edge is the only truly immersive game for helping a young person move through the emotional experience of illness.  

For Shadow’s Edge to be a Digital Therapeutic, we need scientific research to prove its effect on patients. We are heading in this direction, with a first study through Northwestern University Feinberg School of Medicine and the Lurie Children’s Hospital Chicago. This study will run from November 2018 to October 2019; it will investigate the impact of gameplay with 174 adolescents and young adults who are in the final stage of cancer directed treatments at Lurie Children’s It is directed at patients in the final stage of treatment because these patients consistently report compromised quality of life, including higher rates of anxiety and depressive mood, activity limitations, and health issues such as fatigue and pain. Resilience, especially the tendency to experience positive moments and persevere amidst life stressors as well as too find meaning and to benefit from challenges, has emerged as an important skill in enhancing health outcomes among individuals with chronic health conditions, including cancer.

Shadow’s Edge has an Instagram-like sharing feature called Shadowgram. Players can take a picture of the graffiti they have created with the in-game “camera.” Next, before they post their image, they can embellish their photo with stickers and filters. Players also have the option of adding a description or caption to their image.

Other players on Shadow’s Edge can see these posts on the in-game feed and react to posts by giving “likes” or pre-set “canned” positive comments of support. We have restricted the commenting on players’ shared artwork to predefined comments to ensure that all interactions remain supportive. Our teen testers requested this feature to create a safe environment free of bullying and offensive posts.  When a player comments on another player’s graffiti, we provide six positive messages of support “So inspiring,” “Here’s a hug,” “So helpful,” “Hang in there,” “Hits home,” “I love this!”

Additionally, players can “favorite” art that is meaningful to them, which will then appear in their in-game Hall of Inspiration. If they associate a home hospital at the time of registration, they can see the posts that are created by other players from that hospital in a separate Shadowgram feed. We issue notifications that promote photo hunts–challenges to paint pictures about specific topics or in a specific place—to keep the sharing interesting and fresh art, even if the game has been played to the conclusion of its main quest.

Our community guidelines focus on creating a safe and respectful environment for players. The rules of engagement actively ask our players to report to us if they feel that they have seen a violation. To provide further safety and anonymity, players are encouraged not to share any identifiable information with other players through their Shadowgam posts. We provide daily monitoring, and we remove any offensive posts to guarantee that “Shadowgram” is a safe environment for sharing and commenting.  The community guidelines and privacy policy can be found on the Shadow’s Edge Website

Shadow’s Edge is currently available in English, French, Spanish, Dutch, Portuguese, and German.  It will be released in December in Hindi and Italian as well and we will continue to add languages as we make Shadow’s Edge a global tool.

We started with the founder, Sheri Brisson’s, own personal journey. As a young adult, Sheri was a brain tumor survivor, and she combines this experience with illness with her 23 years of clinical experience in health psychology working directly with young people with illness issues and their families.  We also worked closely with health and mental health professionals to design the metaphors and interventions within the game’s worlds, characters, and narration.  We collaborated with pediatric psychologists, child life specialists, palliative care teams, art therapists, social workers, and educators to create a truly interdisciplinary product.

During game development, we recruited teen experts to validate our content as well as to test Shadow’s Edge. We had over 500 direct patient interactions with teens and young adults with various kinds of serious and chronic medical conditions, including diseases such as cancer, lyme, irritable bowel, heart disease, cystic fibrosis, mental health issues, and diabetes. We conducted surveys every two weeks during the seven-month development cycle, had in-person focus groups both in the US and Europe, and had crews of youth game-testers to review player experience.  By incorporating the voice of the youth, we produced a game that reflects the true experience of young people. It is one of the reasons why young people so readily identify with it.

In each of the three phases, Disruption, Disillusionment, and Discovery, there are four neighborhoods, each representing different parts of the self. 

• Central introduces each phase and is where the elevator is located that helps the player move through the stages. It represents a person’s stable core.  The prompts in Central are about the illness or trauma, and the feelings that one’s challenge elicits.
• Downtown is about the players’ inner self—perhaps their bottled-up feelings which can, at times, feel limiting. The buildings in Downtown are dense and there are small alleys with construction, which symbolize work in progress. Because it is a smaller area to walk through, the player has the impression that he or she is outside themselves, looking in.
• Commercial is about the players’ persona in the outside world, as well as their own perception of reality. The buildings in Commercial are a bit taller and more colorful. Signs of activity, such as advertisements and shops, have been added as well. This area has wider roads, so players may feel as though they are going places—on a new path, so to speak.
• Park is the area for reflection and serenity. It may also be that internal place where one retreats for comfort. The park has a center statue that represents the city’s soul. All streets in the park lead to, and encircle, this statue, perhaps suggesting to players to put themselves in the center of their narrative.

Living with a serious or ongoing health challenge can feel like a shadow is hovering over the player—surreal, like he or she is living someone else’s life. But at the edge of that shadow, out beyond the darkness, there is a ray of hope. It takes courage and hope to cross that edge into the light. 

Standing at the ‘shadow’s edge,’ between this darkness and light, is opportunity to see one’s self clearly—to define hopes, dreams, and a vision of what it means to be a person who has looked into the shadow and returned—that is Shadow’s Edge.

Shadow’s Edge is designed to build emotional resilience and to help teens be proactive in dealing with the realities of their situations. Our hope is that young people discover and listen to their own voice, and that they learn to trust their feelings.  We believe that players will become more confident in expressing themselves and proud of their personal narrative. We expect that young people will feel more connected, less alone, and more able to reach out for help in their real lives.

Specifically, as we continue to gather impact data, we expect players will:

• gain perspective and adapt to health challenge
• be aware of, express, and manage their full range of emotions
• understand oneself and one’s needs better
• feel more confident and accepting of oneself
• feel less emotionally burdened
• recognize personal strengths
• address challenges proactively
• reach out and share more openly
• derive meaning from their experience and be proud of their story
• feel less alone, learn from others, and develop empathy
• maintain a growth mindset that helps to rebuild their lives
• transfer learning—embrace one’s journey in real life, too

Prior to game launch, we conducted in-house research with 55 teens and young adults facing health and mental health challenges.  Each player played Shadow’s Edge daily for 20-30 minutes during a six-week period.  We found Shadow’s Edge significantly impacted all seven resilience factors tested, most notably Emotional Regulation, Optimism, and Positive Self-Identity. 

Additionally,

• 85% of players felt more creative and had fun
• 81% reported that Shadow’s Edge helped them to understand others better
• 73% reported Shadow’s Edge helped them realize other teens think and feel the way they do
• 73% of players reported they felt “more real” after playing

We are currently working with Northwestern University, Lurie Children’s Hospital, to evaluate the impact of playing Shadow’s Edge.  Specifically, they are conducting research with 174 cancer survivors and young patients in end-stage treatment between the ages of 13 and 24. We look forward to collaborating with other academic institutions for both qualitative and quantitative studies with a variety of illness subgroups to further our evidence base.

Data Protection and privacy is key when working with any audience, but especially when working with minors. We create a safe and respectful environment both by providing community guidelines and by complying with the standards in the process and technology used to store and to maintain data.

To ensure data protection and privacy for Shadow’s Edge, we collect only a limited set of data from players at registration and use only anonymous and aggregated data when considering feedback for game improvements. The mobile phone application is hosted securely on the Microsoft Azure Cloud. Shadow’s Edge requires players to register and to create a password, which they will use upon their first login.  We don’t sell or distribute any data to third parties. Our privacy policy allows for parents to contact us on a dedicated email: privacy@shadowsedge.com and we welcome any feedback on feedback@shadowsedge.com.

We manually monitor the content posted to our in-game sharing feature, Shadowgram.  If we see a post that we feel may be from a person in distress, we respond by publishing our own message, inviting the player to reach out to us.  

Similarly, our social media only allows comments first reviewed by the social media manager to be posted. To ensure that we can react in a timely manner to requested posts, two additional team members will also receive notification in addition to the social media manager.

To make it easy for a patient or caregiver to reach out to our staff for support, questions, or feedback, we invite comments on feedback@shadowsedge.com, publicized in-game, on our website, and on our social media.

We want to help a much broader group of young people by adding relevant content for additional audiences such as foster youth, trauma, mental health, siblings, etc. The process of emotional healing and taking charge of one’s emotional health is similar regardless of the specific challenges faced, so the game can be readily adapted by adding specific content for different challenges. We will first add content for siblings, followed by expanded content in mental health, trauma, foster youth, and teens generally. 

Our goal for game development is to add augmented reality and virtual reality to the core game.  We strongly feel that the more we can help young people “step into” their game world, the more teens will be able to transfer in-game learning to real life. There is no limit to what we can do with support!

In addition to the Shadow’s Edge, The Digging Deep Project has grown into two communities centered around blogs: one written for parents and professionals at diggingdeep.org that addresses the emotional and practical needs of pediatric patients, and one specifically for teens and young adults at shadowsedge.com, written in part by teens and young adults themselves.

In addition to our external communities, Shadow’s Edge provides an in-game community through our in-game Instagram-like sharing platform, Shadowgram.

We started with a psychosocial journal writing book, Digging Deep: A Journal for Young People Facing Health Challenges (Resonance House, 2014: Offner, Brisson).  As this book is now out of print, we have made all the exercise pages available in writable PDF format, which can be easily downloaded onto a patient’s preferred device.  These exercise pages are also available in Spanish and responses can be either typed or entered via voice-to-text, in any language.  Please contact us for access to these pages.

We invite comments or feedback on feedback@shadowsedge.com.  We encourage you to contact us via www.shadowsedge.com and www.diggingdeep.org if you would like to set up an appointment to discuss any questions or feedback by phone.

If you know a youth potentially interested in providing feedback or participating in our game community, please have him or her reach out to us at feedback@shadowsedge.com.

Love what we do and want to help us? One of the ways to get involved is to spread the word so as many young people as possible learn about our community and tools. We have a lot of free materials available for you to share with your network and your audience. Use any of it on your website, social media, blog, or simply show or send things directly to someone that needs it. Here, you will find everything you need to help us get the word out.

We are a small non-profit and have big dreams to help as many young people around the world as possible. Contact us if you would like to learn more about how you can support us or make a secure donation online here. 

Together we are stronger, and we appreciate your support. Below are some resources that you or your organization may find helpful. We are always happy to hear your suggestions for resources.

Loved the book, but have no more copies? Our partner Soaring Words has published the worksheets on their website:

http://www.soaringwords.org/diggingdeep/

Do you want to know more about Digital Art Therapy? Read our whitepaper: 

Would you like to learn more about how Journaling can help? Read our whitepaper: