Unspoken Ink: A Structured,Creative Writing Workshop for Adolescents and Young Adult Cancer Patients as a Psychosocial Intervention

Creating Space: Unspoken Ink

Participants were young adults who had been diagnosed with cancer between the ages of 15 and 39, who learned of the workshop through the AYA oncology program at OHSU or by flyers posted in OHSU oncology clinics. Recruitment started 6 weeks before the start date of the first workshop and was ongoing (February 2013–April 2015). Three 10-week workshops were offered each year to a maximum of 10 participants per workshop. Two-hour sessions were conducted once a week for 10 weeks. Once a workshop had started, no new writers could join until the start of the next workshop. On average, workshops had seven participants who attended 62% of the sessions. Participants were not excluded based on gender, type of cancer, or where they were in their treatment/transition phase, although the majority of participants were post-treatment (Table 1). Other programs offered at OHSU for AYAs varied from month to month, but included a support group, cooking and nutrition classes, sexual health workshops, yoga, and a weekend First Descents program in the summer. The writing workshop and support group were intentionally held on separate days of the week, so AYAs could attend both.

In the workshop, participants went beyond merely talking about their cancer experience to either recreate their own story or tell an entirely fictional story. To the listening ear, it was unknown how much of the story was true and, therefore, it was always treated as fiction. The focus was on the story and not the writer, minimizing the vulnerability of the writer and creating a safe environment to explore their thoughts. During each session, writers were given a set amount of time to write from each provided prompt. Prompts had multiple potential stimuli (e.g., images, quotes, and sounds) that directly relate to cancer and age-related developmental challenges. With the option to ignore the prompt, the facilitator addressed challenging topics that the writers may have chosen not to verbalize or express to others throughout their cancer experience. This left space for writers to choose to explore these topics as they felt comfortable when creating their story.

What differed about this method compared with other expressive writing studies was that the prompted writing, done together as a group, was then shared with each other. Positive responses to the writing, not the writer, were shared to highlight what moved the listener or what was strong about that particular piece of writing. Reading aloud was an essential component to the workshop, serving three very important roles. First, writers were able to hear what they just wrote. The amount of emotional release that comes from putting words to one's thoughts could have a drastic impact on discovering meaning out of the story just created. Second, feedback to one's writing provided alternative perspectives that helped the writer process the story in a new way. Finally, in a time when young adults can feel very alienated, hearing each other's stories reminded them that they are not alone in the ongoing, evolving process of healing from cancer.

Participants anonymously filled out The Brief Symptom Inventory-18 (BSI-18) at the beginning and end of the 10-week workshop (n = 5). The BSI-18 is a standardized 18-item self-report scale using a five-point Likert scale to indicate how much respondents have been bothered by distress symptoms over the past 7 days. ¹⁹ There was a trend for decreased depression, anxiety, somatic distress, and the overall Global Symptom Index raw scores after the 10-week workshop (Table 2). Participants completed a personal writing questionnaire that used both a five-point Likert scale and qualitative questions that addressed their writing experiences before and after the workshop. Feedback questionnaires were also given at the end of the workshop to assess how the writing medium may have been beneficial to participants.

At the end of 10 weeks, writers reported an increased ability to process and understand their cancer, increased social support with peers, and decreased distress symptoms. They were more likely to use the writing medium to reflect on their experiences, which included things they had never told anyone. Writers felt affirmed that their honest feelings were appreciated as space was provided to verbalize frustrations that had been received negatively by noncancer friends and family. Participants reported that the honesty and raw emotion that were shared through writing were very powerful. Emerging from the interwoven stories, writers could hear their own voice, which affirmed their unique identity. Furthermore, the writing medium restored creativity and the value of their mind during a time when “chemobrain” felt invasive and troublesome.

Feedback on the writing allowed writers to hear their story from another perspective, challenging them to see their story in a different light. Writing often unearthed feelings that the reader did not know existed, and by hearing others express their thoughts, they were able to reinterrupt their own feelings that they had not been able to define. Stories created in the workshop have been used to share the writer's authentic feelings with family and friends through blog postings and storytelling events.

Although participants could attend both the support group and the writing workshop, we often found that AYAs liked either one format or the other. In the writing workshop, participants shared their story in a very different way than a support group setting. As the writers read the newly created story, face turned down to the writing, they received no visual feedback from other writers. It was in this very vulnerable situation that the reader may have experienced deep self-revelation and the intense emotional release that can come from hearing the spoken words. In addition, as all written stories were considered fictional, writers regained control over the stories being told as they could define events as they wished. The writing workshop became a way to see writers’ disease beyond a single event that happened to them, allowing them to identify the psychological effects from that event, adjust their perspective to a more positive outlook, and take action as needed to move forward.

Often AYAs are faced with confronting topics that their peers cannot relate to, resulting in social relationships being adversely affected.^20,21 For the 11 writers who choose to return to more than one workshop, they reported a restored sense of confidence and that they had regained a sense of control of their life. Prompts were rarely reused, so although similar topics were addressed, different prompts provoked different stories. Uncertainty and change persist long after treatment, so returning writers could continue to define life after cancer.

In this novel intervention, both aspects of writing and sharing were combined to provide a coping mechanism, age-specific social support, and an outlet to explore unspoken thoughts. Deliberate rumination can lead to post-traumatic growth, ²² and promoting post-traumatic growth as a cognitive process can lead to better coping skills and quality of life. ²³ A writing workshop could provide space for AYAs to re-experience their cancer in a way that facilitates growth ²⁴ and increase quality of life. A future randomized control study would further assess the value of this method compared with other available support programs. A structured, creative writing workshop for AYAs was successfully implemented and may be an effective psychosocial intervention. Although we acknowledge that there are limitations to this pilot study, we believe further research is warranted to evaluate the effectiveness of this cost-effective writing intervention for young adults diagnosed with cancer.