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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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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

  • Explore how children with cancer express their experience through narrative:

    • Writing

    • Drawing

    • Speaking


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


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

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


3. Emotional Expression/Empowerment

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


Goals

  • Explore how children conceptualize cancer

  • Observe how expression through narrative functions as a therapeutic process


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

  • Pediatric Oncology patients at Mott

    • Inpatients

    • Outpatients

  • Ages 10-17

  • Basic understanding of their illness

  • Interested in opening up about their illness


Participant Benefits

  • Empowered to tell the story of their cancer

  • Create and keep their storybook narrative

  • Opportunity to publish their narratives


Participant Risks

  • Psychological discomfort from discussing cancer

  • No uncomfortable questions will be asked

  • Patients can skip questions that make them uncomfortable


Recruitment- Referrals

  • Pediatric Oncology Team referrals:

    • Physicians

    • Nurses

    • Nurse Practitioners

    • Social Workers

    • Child Life Specialists


Recruitment- Eligibility


Before Activity

  • Complete Informed Consent

  • Obtain written parent consent

  • Begin recording

  • Child verbal assent


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

  • Diagnosis

  • Symptoms

  • Hospital

  • Treatment

  • Advice

  • Reflections


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

  • 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

  • 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

  • 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

  • Keep hard copy of narrative

  • $20 gift card for compensation

  • Opportunity to publish their story

    • Collaboration with Michigan Publishing

    • Children choose disclosure


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

  • 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 Sponsors


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


Thank you.Trisha [email protected]


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