Trisha Paul

1

Trisha Paul

2

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.)

3

Literary Illness Narratives about Cancer

4

5

The Idea• Explore how children with cancer

express their experience through narrative:–Writing – Drawing– Speaking

6

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

7

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.”

8

2. Distance and Creation of Self

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

9

3. Emotional Expression/Empowerment

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

10

Goals• Explore how children conceptualize

cancer• 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

children• Longitudinal study – IRB filed for 2 years, 100 children

12

Participants• Pediatric Oncology patients at Mott– Inpatients– Outpatients

• Ages 10-17• 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

16

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

17

Recruitment- Eligibility

18

Before Activity1. Complete Informed Consent2. Obtain written parent consent3. Begin recording4. Child verbal assent

19

Activity1. Sit down with each child2. 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

20

Activity- Prompts1. Diagnosis2. Symptoms3. Hospital4. Treatment5. Advice6. Reflections

21

Post-Activity Survey1. 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?–Was there a trend for this preference

based on age, gender, stage of treatment?

• 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– Collaboration with Michigan Publishing– Children choose disclosure

26

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)

27

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.

28

Special Thanks to Sponsors

29

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

30

Thank you.

Trisha Paultkpaul@umich.edu