Storytelling is as old as time, but incorporating digital storytelling as a therapy is a new concept. Catherine Laing, a registered nurse and University of Calgary assistant professor, grew curious about whether digital storytelling holds therapeutic value for someone who has experienced childhood cancer. She embarked on a research project and determined that it’s valuable – in more ways than one.
A digital story is a video woven together from music, photos and narration. In this case, childhood cancer survivors are narrating their own three to four minute video stories.
“The result is quite a powerful, effective snapshot,” says Catherine.
Children and young adults find digital stories particularly valuable, as they are easily engaged in stories, technology and interactive information (Wyatt and Hauenstein, 2008). Children are often challenged to explain an experience verbally, as they may lack the language to describe it, but their familiarity with digital stories and tools help them overcome this barrier.
Catherine connected with 16 people who had cancer as a child or teen to complete her research. Some of the participants were still in the hospital, and others talked about their experience from memory.
People often begin sharing their cancer experience chronologically, with something like, “I was diagnosed when I was 10…” But Catherine wasn’t looking for a timeline of events – she sought to understand the experience of childhood cancer, so she dug deeper.
Instead, “We asked them to share something that stood out about having cancer,” says Catherine. And each person was able to find at least one thing to discuss.
One person, Matt, spoke about ongoing body image issues, even though his treatment was 10 years previous.
Another participant spoke about donating bone marrow for her sister: feeling that it was forced on her as she was completely left out of the decision-making process.
Catherine’s research assistant, a skilled storyteller, explored the participants’ cancer experience in great detail, probing with queries such as, “Tell me about that,” and, “What was it about that…?”
“Most people tell us they’ve never been asked these questions before,” says Catherine, making the sessions a unique opportunity for cancer survivors to reflect on one of the most impactful experiences of their lives. And it’s the guided reflection that can be therapeutic – of helping them process the experience, and reconcile their past with their current lives.
“The act of telling one’s story is powerful, often transformative, and fundamentally helpful as we attempt to understand our experiences.” This is an excerpt from the Stories That Heal research paper. Indeed, some participants expressed they saw their own experience differently after watching their digital story. Some described that telling their story felt like letting go of secrets and relieving a weight, perhaps because they felt they had control over their own story for the first time.
Many described the process as healing without feeling like therapy – and this is key. The storytelling participants shared with Catherine that though they recognized they had psychosocial issues as a result of having cancer as a child, they wouldn’t feel comfortable discussing these issues with a counselor. They felt more comfortable delivering their story in a way that didn’t feel face-to-face.
“Digital storytelling is a sideways approach to addressing psychosocial health because it doesn’t feel like traditional therapy,” says Catherine. “This is an approach to counselling that recognizes we live by the stories we tell ourselves and others.”
The paper suggests participant comfort may also be due to the non-threatening nature of storytelling and the thought of playing with technology.
Catherine was surprised to find nearly every participant opted to share their story with others.
“At the end, they had this product that was representative of a piece of their experience,” says Catherine. “And many wanted others to understand what they went through.”
The Stories That Heal paper explains that having others
understand their experiences of cancer allowed for further healing
from their often traumatic experiences: “Participants described not
only wanting others to understand on an intellectual level, but using
their digital story as a way to help others feel their
experience.” One study participant said the images and music helped
accomplish this. Digital storytelling helped friends and family
understand the experience beyond explanations.
Some participants shared their story on social media, with their families, and or with certain selected people.
Thanks to social media sharing, one participant was able to meet his hero.
Mason Rodriguez, an eight-year-old in remission from stage four lymphoma, told his story about his love for hockey and included his dream of playing on Sidney Crosby’s team. When Mason’s mom (and family and friends) shared his video on Twitter, the Pittsburgh Penguins took notice and connected Mason with his hero.
The Calgary Sun quoted Mason after the meeting: “He said I had some good moves in my video. I loved that he watched it. I cannot believe Sidney Crosby watched my video.”
Catherine conducted an additional study to understand the effect on health-care professionals of watching these digital stories. Participants said watching the stories caused emotional engagement that made the patients’ experience more memorable. This deeper insight could lead to better practice.
Digital story sharing may also be valuable in RN education – imagine the opportunity for students to understand a patient’s experience almost first-hand.
Society is very focused on a cancer cure – for good reason – however, it’s important to consider the long-term effects of treatments and psychosocial impacts on survivors.
“I think we need to consider different approaches to psychosocial care,” Catherine says. Digital storytelling offered a means for these childhood cancer survivors to express themselves and share their experiences in a way that most found profoundly valuable.
But the therapeutic qualities of digital storytelling are not exclusively valuable for use in paediatric oncology. For example, a researcher at the Alberta Children’s Hospital has done a study with children with arthritis, and Catherine is currently running another digital storytelling study with adults with cancer. Catherine’s new paper will explain how to incorporate digital storytelling into other health-care programs.
In the future, Catherine would like to run national studies about the psychosocial late-effects of childhood cancer.