Trisha Paul
description
Transcript of Trisha Paul
![Page 1: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/1.jpg)
1
Trisha Paul
![Page 2: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/2.jpg)
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.)
![Page 3: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/3.jpg)
3
Literary Illness Narratives about Cancer
![Page 4: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/4.jpg)
4
![Page 5: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/5.jpg)
5
The Idea• Explore how children with cancer
express their experience through narrative:–Writing – Drawing– Speaking
![Page 6: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/6.jpg)
6
“Express what it is like to have cancer”3 Principle Themes
![Page 7: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/7.jpg)
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.”
![Page 8: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/8.jpg)
8
2. Distance and Creation of Self
“A picture that shows my mind when it is confused.”
![Page 9: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/9.jpg)
9
3. Emotional Expression/Empowerment
“This is how I feel about what has happened to me.”
![Page 10: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/10.jpg)
10
Goals• Explore how children conceptualize
cancer• Observe how expression through
narrative functions as a therapeutic process
![Page 11: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/11.jpg)
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
![Page 12: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/12.jpg)
12
Participants• Pediatric Oncology patients at Mott– Inpatients– Outpatients
• Ages 10-17• Basic understanding of their illness• Interested in opening up about their
illness
![Page 13: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/13.jpg)
13
Participant Benefits• Empowered to tell the story of their
cancer• Create and keep their storybook
narrative• Opportunity to publish their
narratives
![Page 14: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/14.jpg)
14
Participant Risks• Psychological discomfort from
discussing cancer
• No uncomfortable questions will be asked
• Patients can skip questions that make them uncomfortable
![Page 15: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/15.jpg)
![Page 16: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/16.jpg)
16
Recruitment- Referrals • Pediatric Oncology Team referrals: – Physicians– Nurses– Nurse Practitioners– Social Workers– Child Life Specialists
![Page 17: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/17.jpg)
17
Recruitment- Eligibility
![Page 18: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/18.jpg)
18
Before Activity1. Complete Informed Consent2. Obtain written parent consent3. Begin recording4. Child verbal assent
![Page 19: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/19.jpg)
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
![Page 20: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/20.jpg)
20
Activity- Prompts1. Diagnosis2. Symptoms3. Hospital4. Treatment5. Advice6. Reflections
![Page 21: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/21.jpg)
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?
![Page 22: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/22.jpg)
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
![Page 23: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/23.jpg)
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?
![Page 24: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/24.jpg)
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?
![Page 25: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/25.jpg)
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
![Page 26: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/26.jpg)
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)
![Page 27: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/27.jpg)
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.
![Page 28: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/28.jpg)
28
Special Thanks to Sponsors
![Page 29: Trisha Paul](https://reader035.fdocuments.us/reader035/viewer/2022081513/568166de550346895ddb0e3e/html5/thumbnails/29.jpg)
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