Cynthia J. Bell, PhD, RN Postdoctoral Fellow, Vanderbilt University School of Nursing

1. Advancing Theoretical Understanding of Readiness and End-of-Life Preparedness in Adolescents Living with Advanced Cancer Cynthia J. Bell, PhD, RN Postdoctoral Fellow, Vanderbilt University School of Nursing Victoria L. Champion, PhD, RN, FAAN Mary Margaret Walther Distinguished Professor Indiana University

2. How beautifully leaves grow old. How full of light and color are their last days. - John Burroughs, Naturalist

3. Description of the Problem Cancer is the leading cause of death by disease (10-21yrs) • Each year in the United States 7000 adolescents (10-19yrs) • 6800 young adults (20-24yrs) diagnosed with cancer • One out of five adolescents with cancer will die • Psychological symptoms reported ~ adolescents at EOL • (Sadness, Loss of perspective, Distress, Fear) • Clinical experts ~ adolescents unprepared for EOL • Insufficient research ~ adolescents at EOL Albritton et al., 2006; Bleyer, 2005; Block, 2006; Bluebond-Langner, 1978; Brandon, 2007;Dunsmore & Quine, 1995;George & Hutton, 2003; Hinds, 2004; McGrath, 2001; Palmer, 2007; Pensonet al., 2005; Steinhauseret al., 2000; Theunissen et al., 2007; U.S. Cancer Stats. 2009; Wolfe, 2004; Young, 2004

4. Study Purpose • Advance theoretical understanding of factors influencing two processes: • Readiness to engage in EOL discussions • EOL preparedness • Provide foundation for Adolescent EOL • research • Improve QOL when curative treatment • suspended

5. EOL Case Study Model Analyze & Conclude Prepare, Collect & Analyze Define & Design Single Case Reports Draw within-case Conclusions C1 T1 C1 T2 C2 T1 C2 T2 Develop Theoretical Framework Case # 1 Time 1 Case # 1 Time 2 o o o Select Cases Write case report Write case report Design Study and Data Collection Procedure Multiple Cross Case Report Case # 2 Time 1 Case # 2 Time 2 Draw Cross Case Conclusions C1T1 T2 C2T1 T2 Write case report Write case report Modify Theory Write Final Report Adapted from Yin, 2003 Case Study Method

6. Conceptual Model for Case Study Method Communication QOL EOL Preparedness Readiness Time Bell & Champion, 2008

7. Data Collection: Multiple Sources (1)Degner, Sloan, et al., 1997; (2)Zimet, et al., 1990 ; (3)Kaasa & Wessel, 2001 ; (4) Mack et al., 2008; (5)Steinhauser et al., 2004

9. Global Question “Would you please tell me what it is like to be 17 years old and living with advanced cancer?”

10. Semi-structured Interviews Can you tell me a little more about the seriousness of your cancer and whether that has changed over time? “It hasn’t changed dramatically. It’s still the same size and they stopped it from growing but it’s still there. And they’re trying to figure out how to get rid of it. I think it’s getting better…just a little. It got better just a tiny bit. But it’s still better, so”.

11. Determining the Level of Awareness Awareness: cognitive recognition of incurable prognosis Closed- Suspected- Mutual Pretense- Open “That I’ll be sick the rest of my life, and not be able to take care of myself like I would like to. I want to have a family and kids and get out and mow the grass on Sundays and stuff like that. I guess my biggest worry is not being able to basically take care of myself when I get older because of the cancer” Glaser and Strauss, 1965 Awareness of Dying; Bluebond-Langner, 1978 The Private Worlds of Dying Children

12. Medical Record MSPSS Social support Direct observation Interview

13. Findings Awareness: • Non-linear • Dynamic ~ changed within and across time • Awareness = influential factor in EOL discussions • Contextual Factors • Noticeable change in condition • Honest discussions about incurable prognosis with HCP Glaser and Strauss, 1965 Awareness of Dying; Bluebond-Langner, 1978 The Private Worlds of Dying Children

14. Awareness Changed across Time TIME 1 • “Not knowing how much longer I will take the chemo…and not knowing when it’s going to be over and what it’s going to do to me in the future. Not knowing what’s going to happen” TIME 2 “Not knowing if the chemo’s gonna work…not knowing how strong I’m gonna be when I wake up in the morning…not knowing if I’m gonna make it to college…not knowing if I’m gonna wake up at all really… It’s difficult not knowing.”

15. Awareness Changed within Time Points

16. Awareness influenced EOL Discussions Discussions with HCP Knowledge about EOL Awareness Acknowledgement of Grief & Emotions Uncertainty Acceptance of Death & Incurable Prognosis EOL Preparedness Identification of Meaning of Death & Spirituality Acceptance Struggle to Accept

17. Social Constraint versus Social Support Social constraint “Sometimes I don’t like talking about my feelings with them because I could tell it gets them all worked up or depressed and they don’t like seeing me depressed. Or sometimes they don’t really want to talk about it because they don’t know what to say and it’s hard for them. So being hard for them to talk about it…makesit hard for me to talk about it, because I wouldn’t have the help, because it would be too sad for them”. “…their body language…their facial expressions…You see sadness in their face…her eyes tell it all…” Social support: “Talking about my feelings was helpful. Because there’s certain things that you want to talk about with people and you can’t talk about it, because you don’t know if they want to talk about it. But if someone is asking you those certain questions about those certain feelings, you know that they can handle talking to you about it. I felt a little better, you know, relieved or relaxed after talking about it”.

18. Revised Conceptual Model – Bell 2010

19. Live Life! Shoot for your Goals… “And so you have to deal with… missing out on things, and not being able to do things. And the things that you want to do and you can do, you gotta try to shoot for it…and try to have as much fun as you can. ‘Cause those are some scary thoughts and you want to try to keep those off your mind by having as much fun as you can and …shooting for your goals!”

20. Come Dance with Meby Cindy Bell My life is a dance between living and dying between knowing what is real and pretending it is not between accepting my destiny and rejecting my fate between celebrating the moments… and grieving my time is running out My life is a dance between Hoping and Believing that my life actually does matter I AM LIVING Come dance with me

21. I would like to thank… My Dissertation Committee: Victoria Champion, PhD, RN, FAAN, Chair Marion Broome , PhD, RN, FAAN Rose Mays, PhD, RN, FAAN Anna McDaniel , PhD, RN, FAAN Greg Zimet, PhD ~ for their incredible insight and guidance. And the adolescents who participated in this study: ~ for so generously sharing their time and stories. I am forever changed.

22. Acknowledgements: Mary Margaret Walther Program for Cancer Care Research/ BCOG American Cancer Society DSCNR-06-206-03 Oncology Nursing Foundation Doctoral Scholarship Research Incentive Fellowship, Indiana University School of Nursing