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This study explores how children with cancer express their experience through various forms of narrative, such as writing, drawing, and speaking. The study aims to understand how children conceptualize cancer and how expression through narrative can serve as a therapeutic process. Initial data collection begins in July through a longitudinal study involving pediatric oncology patients. Participants will have the opportunity to create and keep their own storybook narrative, and there is a potential for their narratives to be published. The study also aims to analyze the invisible scars of cancer that become visible through narrative and examine the different understandings of medical terminology. The study will also explore the therapeutic effects of writing, drawing, and speaking on children with cancer and investigate any trends or preferences based on age, gender, and stage of treatment. Participants will receive compensation and have the option to collaborate with Michigan Publishing in publishing their stories. The study will also analyze artistic representations of cancer and explore other mediums such as video and interactive multimedia formats for the narratives.
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What are Illness Narratives? • “Expressions of the experience of being ill” • Can take many forms (art, film, dance, etc.) • Can be told from a variety of perspectives (Health professionals, loved ones, etc.)
The Idea • Explore how children with cancer express their experience through narrative: • Writing • Drawing • Speaking
1. Chronological Coherence “Sometimes I feel like this experience will never end. But I know it will. Having my friends makes me want to keep on going. Friends are forever.”
2. Distance and Creation of Self “A picture that shows my mind when it is confused.”
3. Emotional Expression/Empowerment “This is how I feel about what has happened to me.”
Goals • Explore how children conceptualize cancer • Observe how expression through narrative functions as a therapeutic process
Current Status • IRB application submitted • Preparation for recruitment • Data collection begins in July • Begin with pilot study of about 40 children • Longitudinal study • IRB filed for 2 years, 100 children
Participants • Pediatric Oncology patients at Mott • Inpatients • Outpatients • Ages 10-17 • Basic understanding of their illness • Interested in opening up about their illness
Participant Benefits • Empowered to tell the story of their cancer • Create and keep their storybook narrative • Opportunity to publish their narratives
Participant Risks • Psychological discomfort from discussing cancer • No uncomfortable questions will be asked • Patients can skip questions that make them uncomfortable
Recruitment- Referrals • Pediatric Oncology Team referrals: • Physicians • Nurses • Nurse Practitioners • Social Workers • Child Life Specialists
Before Activity • Complete Informed Consent • Obtain written parent consent • Begin recording • Child verbal assent
Activity • Sit down with each child • Child can tell their story as they wish through: • Writing • Drawing • Speaking • All of the above • If need encouragement, ask prompting questions to guide child
Activity- Prompts • Diagnosis • Symptoms • Hospital • Treatment • Advice • Reflections
Post-Activity Survey 1. How does this activity make you feel? 2. Does writing make you feel better? Why? • Drawing? • Speaking? 3. Which form did you prefer? 4. Why did you prefer this method?
After Activity- Researchers • Scan narratives • Return hard copies to patients • Store digital copies with recordings on secure laptop • Patient confidentiality • Number assigned to narratives for analysis
Data Analysis- Literary • How do children conceptualize cancer? • What invisible scars of cancer become visible through narrative? • How do children understand medical terminology? • How do narratives differ by a child’s diagnosis and stage in treatment?
Data Analysis- Statistical • Is writing, drawing, or speaking therapeutic? • Which medium did children prefer? • Was there a trend for this preference based on age, gender, stage of treatment? • What was different about each form of expression?
After Activity- Patients • Keep hard copy of narrative • $20 gift card for compensation • Opportunity to publish their story • Collaboration with Michigan Publishing • Children choose disclosure
Further Research • Analyze artistic representations of cancer • Transcribe and analyze recorded narratives • Explore other mediums (ex. Video) • Create interactive compilation of narratives • iBooksas child-friendly format • Multimedia (text, audio, video)
Conclusions • Narratives are important and inherent in medicine • How children tell their story can provide insight into how illness has affected them. • Chronological coherence • Distance and creation of self • Emotional expression/empowerment • Only in appreciating these unique experiences, I believe, can we work together to treat the many facets of cancer.
Special Thanks to Supporters • Patients and families • Dr. RajenMody (PedsHeme/Onc) • Dr. Alexander Blackwood (Peds ID) • Melanie Yergeau (English) • JenniGretzema (Child Life) • Donovan Bowerbank(Child Life) • J.J. Bouchard (Child Life) • Angela Stovall (PedsHeme/Onc) • PedsHeme/Onc Staff
