trisha paul
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Trisha Paul. 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.). Literary Illness Narratives about Cancer. The Idea. - PowerPoint PPT PresentationTRANSCRIPT
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Trisha Paul
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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.)
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Literary Illness Narratives about Cancer
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The Idea• Explore how children with cancer
express their experience through narrative:–Writing – Drawing– Speaking
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“Express what it is like to have cancer”3 Principle Themes
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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.”
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2. Distance and Creation of Self
“A picture that shows my mind when it is confused.”
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3. Emotional Expression/Empowerment
“This is how I feel about what has happened to me.”
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Goals• Explore how children conceptualize
cancer• Observe how expression through
narrative functions as a therapeutic process
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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
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Participants• Pediatric Oncology patients at Mott– Inpatients– Outpatients
• Ages 10-17• Basic understanding of their illness• Interested in opening up about their
illness
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Participant Benefits• Empowered to tell the story of their
cancer• Create and keep their storybook
narrative• Opportunity to publish their
narratives
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Participant Risks• Psychological discomfort from
discussing cancer
• No uncomfortable questions will be asked
• Patients can skip questions that make them uncomfortable
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Recruitment- Referrals • Pediatric Oncology Team referrals: – Physicians– Nurses– Nurse Practitioners– Social Workers– Child Life Specialists
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Recruitment- Eligibility
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Before Activity1. Complete Informed Consent2. Obtain written parent consent3. Begin recording4. Child verbal assent
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Activity1. Sit down with each child2. Child can tell their story as they wish through:
- Writing- Drawing- Speaking- All of the above
3. If need encouragement, ask prompting questions to guide child
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Activity- Prompts1. Diagnosis2. Symptoms3. Hospital4. Treatment5. Advice6. Reflections
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Post-Activity Survey1. 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?
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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
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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?
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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?
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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
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Further Research• Analyze artistic representations of
cancer• Transcribe and analyze recorded
narratives• Explore other mediums (ex. Video)• Create interactive compilation of
narratives– iBooks as child-friendly format–Multimedia (text, audio, video)
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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.
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Special Thanks to Sponsors
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Special Thanks to Supporters
• Patients and families• Dr. Rajen Mody (Peds Heme/Onc)• Dr. Alexander Blackwood (Peds ID)• Melanie Yergeau (English)• Jenni Gretzema (Child Life)• Donovan Bowerbank (Child Life)• J.J. Bouchard (Child Life)• Angela Stovall (Peds Heme/Onc)• Peds Heme/Onc Staff
