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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

Trisha Paul


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.)


Literary illness narratives about cancer

Literary Illness Narratives about Cancer


The idea

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

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


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


Recruitment eligibility

Recruitment- Eligibility


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 sponsors

Special Thanks to Sponsors


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


Thank you trisha paul tkpaul@umich edu

Thank you.Trisha [email protected]


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