Advancing Theoretical Understanding of Readiness and End-of-Life Preparedness in Adolescents Living ...
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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

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

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Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

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


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

How beautifully leaves grow old. How full of light and color are their last days.

- John Burroughs, Naturalist


Description of the problem

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


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

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


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

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


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

Conceptual Model for Case Study Method

Communication

QOL

EOL Preparedness

Readiness

Time

Bell & Champion, 2008


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

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


Global q uestion

Global Question

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


Semi structured interviews

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”.


Determining the level of a wareness

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


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

Medical

Record

MSPSS

Social support

Direct observation

Interview


Findings

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


Awareness changed a cross time

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.”


Awareness changed within time points

Awareness Changed within Time Points


Awareness influenced eol discussions

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


Social constraint versus social support

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”.


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

Revised Conceptual Model – Bell 2010


Live life shoot for your goals

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!”


Come dance with me by cindy bell

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


I would like to thank

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.


Cynthia j bell phd rn postdoctoral fellow vanderbilt university school of nursing

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


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