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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.

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what are illness narratives
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
The Idea
  • Explore how children with cancer express their experience through narrative:
    • Writing
    • Drawing
    • Speaking
1 chronological coherence
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
2. Distance and Creation of Self

“A picture that shows my mind when it is confused.”

3 emotional expression empowerment
3. Emotional Expression/Empowerment

“This is how I feel about what has happened to me.”

goals
Goals
  • Explore how children conceptualize cancer
  • Observe how expression through narrative functions as a therapeutic process
current status
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
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
Participant Benefits
  • Empowered to tell the story of their cancer
  • Create and keep their storybook narrative
  • Opportunity to publish their narratives
participant risks
Participant Risks
  • Psychological discomfort from discussing cancer
  • No uncomfortable questions will be asked
  • Patients can skip questions that make them uncomfortable
recruitment referrals
Recruitment- Referrals
  • Pediatric Oncology Team referrals:
    • Physicians
    • Nurses
    • Nurse Practitioners
    • Social Workers
    • Child Life Specialists
before activity
Before Activity
  • Complete Informed Consent
  • Obtain written parent consent
  • Begin recording
  • Child verbal assent
activity
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
Activity- Prompts
  • Diagnosis
  • Symptoms
  • Hospital
  • Treatment
  • Advice
  • Reflections
post activity survey
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
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
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
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
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
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
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
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
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