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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”

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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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4. Making Sense of Illness“The necklace is mostly blue because our planet is mostly water, then green for all plant life and finally the smallest…the white for ALL living creatures, including human beings, because we need to remember how small we really are in the whole scope of things”

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Goals• Explore how children conceptualize

cancer• Analyze representations/associations

children use to understand their illness

• 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

kids• Longitudinal study – IRB filed for 2 years, 100 kids

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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 Care Team

referrals: – Physicians– Nurses– Nurse Practitioners– Social Workers– Child Life Specialists

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Recruitment- Referrals

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Recruitment- Flyers

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Before Activity1. Complete Informed Consent2. Obtain written parent consent3. Begin recording4. Child oral assent

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Activity1. Sit down with each child2. Child can tell their story as they wish

through:- Writing- Drawing- Speaking

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?• 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

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Opportunity to Publish• Collaboration with

MPublishing

• 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 iBook compilation of narratives– iPad friendly format for kids–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

• 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

• 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)

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Thank you.

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Questions for Discussion

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Narrative medicine is an ever-growing field. In what ways can technology be incorporated in this field, and with what implications?

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How can these narrative understandings be implemented for educational and training purposes of health care professionals?

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How can we raise awareness of narratives amidst the health system?

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How could we spread this awareness of narratives globally? How can technology play a role in this?

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What are the sensitivities we need to consider in sharing these personal stories?

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