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” 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

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” 10

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 11

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 12

Participants Pediatric Oncology patients at Mott –Inpatients –Outpatients Ages Basic understanding of their illness Interested in opening up about their illness 13

Participant Benefits Empowered to tell the story of their cancer Create and keep their storybook narrative Opportunity to publish their narratives 14

Participant Risks Psychological discomfort from discussing cancer No uncomfortable questions will be asked Patients can skip questions that make them uncomfortable 15

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

Recruitment- Referrals 17

Recruitment- Flyers 18

Before Activity 1.Complete Informed Consent 2.Obtain written parent consent 3.Begin recording 4.Child oral assent 19

Activity 1.Sit down with each child 2.Child can tell their story as they wish through: -Writing -Drawing -Speaking 3.If need encouragement, ask prompting questions to guide child 20

Activity- Prompts 1.Diagnosis 2.Symptoms 3.Hospital 4.Treatment 5.Advice 6.Reflections 21

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? 22

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 23

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? 24

Data Analysis- Statistical Is writing, drawing, or speaking therapeutic? Which medium did children prefer? What was different about each form of expression? 25

After Activity- Patients Keep hard copy of narrative $20 gift card for compensation Opportunity to publish their story 26

Opportunity to Publish Collaboration with MPublishing Children choose disclosure 27

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) 28

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. 29

Special Thanks to Sponsors 30

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) 31

Thank you. 32

Questions for Discussion 33

Narrative medicine is an ever-growing field. In what ways can technology be incorporated in this field, and with what implications? 34

How can these narrative understandings be implemented for educational and training purposes of health care professionals? 35

How can we raise awareness of narratives amidst the health system? 36

How could we spread this awareness of narratives globally? How can technology play a role in this? 37

What are the sensitivities we need to consider in sharing these personal stories? 38

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