1 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.) 2

Literary Illness Narratives about Cancer 3

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The Idea Explore how children with cancer express their experience through narrative: –Writing –Drawing –Speaking 5

“Express what it is like to have cancer” 3 Principle Themes 6

1. Chronological Coherence 7 “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.” 8

3. Emotional Expression/Empowerment “This is how I feel about what has happened to me.” 9

Goals Explore how children conceptualize cancer Observe how expression through narrative functions as a therapeutic process 10

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 11

Participants Pediatric Oncology patients at Mott –Inpatients –Outpatients Ages Basic understanding of their illness Interested in opening up about their illness 12

Participant Benefits Empowered to tell the story of their cancer Create and keep their storybook narrative Opportunity to publish their narratives 13

Participant Risks Psychological discomfort from discussing cancer No uncomfortable questions will be asked Patients can skip questions that make them uncomfortable 14

Recruitment- Referrals Pediatric Oncology Team referrals: –Physicians –Nurses –Nurse Practitioners –Social Workers –Child Life Specialists 16

Recruitment- Eligibility 17

Before Activity 1.Complete Informed Consent 2.Obtain written parent consent 3.Begin recording 4.Child verbal assent 18

Activity 1.Sit down with each child 2.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 19

Activity- Prompts 1.Diagnosis 2.Symptoms 3.Hospital 4.Treatment 5.Advice 6.Reflections 20

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? 21

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 22

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? 23

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? 24

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 25

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) 26

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. 27

Special Thanks to Sponsors 28

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 29

Thank you. Trisha Paul 30