Accentuate the Positive: Fostering Resilience in Adolescents and Young Adults with Cancer

2010 TEXAS ADOLESCENT AND YOUNG ADULT (AYA)

ONCOLOGY CONFERENCESan Antonio, TX Oct. 1-2, 2010

Joan E. Haase, PhD, RN, FAANEmily Holmquist Professor of Pediatric Oncology Nursing

Indiana University School of Nursing

Lona Roll, RN, MSCHRISTUS Santa Rosa Children's Hospital, San Antonio, TX

Resilience In Illness for AYA

Background perspectivesTriangulation of methodsPreliminary model testsCurrent randomized clinical trialFuture directions

Background Perspectives

Meaning-based models Hultch & Deutsch, 1981; Weekes, 1991 patterns and experience of illness subjective and holistic perspective

Lifespan Development Costain, Hewison, & Howes, 1993 Context of historical and contemporary influences on development Universal (e.g. puberty); Historical cohort (e.g age on 9/11/01);

(random individual (e.g cancer)

Positive Health Singer, B. H., & Ryff, C. D. 2001 Resilience: Process of identifying or developing resources and

strengths to flexibly manage stressors to gain a positive outcome, a sense of confidence, mastery and self-esteem

Mixed Methods Approaches Iterative MethodsQualitative Model Development Contributions of Qualitative StudiesQuantitative Measurement and Model Evaluation

Haase, 1987, 2004; Haase, Britt, Coward, Leidy, & Penn, 1992; Haase et al., 1999; Haase & Hinds, 2003; Haase & Rostad, 1994; Haase, Heiney, Ruccione, & Stutzer, 1999 Haase, Kintner, Monahan (in revision); Burns, Robb, & Haase, 2009Representation

Illness-related Distress

FamilyEnvironment

PerceivedSocial Support

DefensiveCoping

PositiveCoping

DerivedMeaning

Resilience

Qualityof

Life

+

+

++

++

+

+

+

-

-

Hypothesized Theoretical Resilience in Illness Model (RIM)

RIM Risk and Protective FactorsFactor Variable

1 Illness-related Distress Uncertainty In IllnessSymptom-related Distress

2 Family Environment Family Adaptability/CohesionFamily CommunicationPerceived Support From Family

3 Perceived Social Support Perceived Social Support From FriendsPerceived Social Support From Healthcare Providers

4 Defensive Coping EvasiveEmotiveFatalistic

5 Positive coping ConfrontiveOptimisticSupportant

6 Derived meaning HopeSpiritual Perspective

7 Resilience ConfidenceSelf-EsteemSelf-Transcendence

8 Quality of life Sense of well-being

Preliminary RIM Evaluation Studies

RIM 1 The Adolescent Resilience Model: Model Development and Instrumentation University of Arizona Vice President for Research Faculty Small Grant

RIM 2 Resilience and Quality of Life in Adolescents with Cancer National Institutes of Health/National Institute of Nursing Research NIH/NINR 1R29

NR03882 Walther Cancer Institute, Indianapolis, IN, Factors Affecting Quality of Life Outcomes for

Adolescents with Cancer

Sites and Collaborative Investigators British Columbia Children’s Hospital Richland Memorial Hospital, Columbia, SC Children’s Hospital of Oklahoma Children's Hospital-Los Angeles University Hospital, Tucson, AZ Indiana University-Riley Hospital for Children

Results Summary

Support for RIMPsychometric properties met reliability criteria;

hypothesized relationships supported construct validity High level of explained variance for outcomes of

resilience (67%) and self-transcendence (63%). Variance explained for proximal outcomes ranged

from 18% to 76%. Hypothesized Spiritual Perspective path not supported

RIM may be useful guide to targeted interventions grounded in the experiences of the adolescents/young adults.

RIM 3: Stories and Music for Adolescent/Young Adult Resilience During Transplant (SMART)

• National Institutes of Health• National Institute of Nursing Research

R01 NR008583 (Haase, PI; Robb,Co-PI)• Children’s Oncology Group ANUR0631

National Cancer Institute U10 CA098543 & U10 CA095861 (Co-chairs: Haase & Robb)

• American Cancer Society• Institutional Grant for Pilot Study, (Burns,

PI)

Funding

8 Performance Sites, 11 Hospitals, Cast of “Thousands”*

*Closed to New Enrollment

1. *Mott Children’s Hospital Eileen Kintner, PhD

2. Children’s Hospital of Atlanta, Emory University Hospital Ann Haight, MD, Brooke Cherven, MSN

3. Durham, NC: Duke University Hospital Sharron Docherty, RN, PhD

4. *DeVos Children’s Hospital David Fryer, MD

5. Riley Hospital for Children, Indiana University Hospital Sheri Robb, PhD, MT-BC, Debra Burns, PhD, MT-BC, Paul Haut, MD, Patrick Monahan, PhD

6. Children’s Mercy Hospital Kristin Stegenga, RN, PhD, CPON

7. *Texas Transplant Institute Lona Roll, MSN, CPON

8. *Barnes Jewish Hospital, St. Louis Children’s Hospital Verna Ferguson, PhD

*56 Personnel; 8 Disciplines

TMV

Illness-related Distress

FamilyEnvironment

PerceivedSocial Support

DefensiveCoping

PositiveCoping

DerivedMeaning

Resilience

Qualityof

Life

+

+

++

++

+

+

+

+

+

-

-

+

+

-

Theoretical Model RIM + TMV

-

SMART Study Aims

1. Test the efficacy of a therapeutic music video (TMV) intervention for AYA during the acute phase of SCT

• Hypotheses: Compared to low dose, TMV group will have:

• less symptom distress and defensive coping; • greater

• family adaptability/cohesion/communication, • positive coping, • hope, spiritual perspective, • resilience (confidence, self-transcendence, self-esteem), • quality of life.

2. Qualitatively Evaluate the Effectiveness of the TMV

SMART Design

• Phase II randomized clinical trial• Two-groups: low dose and experimental • 6 intervention sessions over 3-week

period• Outcomes measured at baseline, post-

intervention and 100 days post-transplant

• Brief symptoms (anxiety, mood, pain, fatigue, sedation, mucositis) measure pre- post- 3 of 6 sessions

SMART Target Sample

Targeted N=130

Inclusion criteria

Oncology condition requiring SCT Both allogeneic and autologous transplants Ages 11-24 Able to read and speak English

Exclusion criteria Cognitive impairment precluding completion of

measures/intervention Cancer diagnoses usually occurring in childhood/adolescent or

young adult populations Married Have Children

Conceptual Frameworks

• Guide Therapeutic Music Intervention (TMV)• Contextual Support Model of Music Therapy

(Robb, 2000)

• Guide problem • Resilience in Illness Model (RIM) (Haase et al., 1999)

Significant Effects of TMV on RIM

TMV

Self-Transcendence

Resilience+

+

Defensive Coping

-

+

Social Integration

+

+ +

+

Courageous Coping

Family Support

SpiritualPerspective

Illness-related Distress

+

--

Hope-derived Meaning

+

Selected AYA Song Lyrics Representing Resilience in Illness Model Variables

Illness Related Distress: Uncertainty, Symptom Distress “Chemo makes me nauseous, makes the room spin” “And so I play these games, to keep my mind off the pain” “I’ve got a test tomorrow and it worries me”  “Best friends forever for the rest of our lives, no matter what”

Defensive Coping: Avoidant, Emotive, Fatalistic “Restin’ up for running, running away” “They work as a distraction, even with my slow reactions”

Courageous Coping: Confrontive, Optimistic, Supportant “Looking for someone to help me come out right” “Don’t you worry, I’m alright, just keep yourselves in the fight,

think of that”

Selected AYA Song Lyrics Representing Resilience in Illness Model Variables

Derived Meaning:Spiritual Perspective, Hope “Through the storms and tribulations, when I’m taken through the

valley. I’m reminded of Your Gift, Your Love, Your Son. How, then can I hang my head in sorrow, when I know You hold tomorrow in Your hands?”

“I think I need my Savior to help me get things right” Family Environment: Adaptability, Cohesiveness, Communication,

Perceived Strengths “I love my mom, she takes care of me, and when I need it, she just lets

me be. You see, she’s been through everything with me.” “Remember when, the sound of family met brought such joy”

Social Environment: Support from Friends, Support from Healthcare Providers “All of my friends sittin’ back and drinkin’ thinkin’ about them keeps me

going” “I guess the docs say what can make me feel this way; My nurse, my

nurse, my nurse, talking ‘bout my nurse, my nurse”

Selected AYA Song Lyrics Representing Resilience in Illness Model Variables

Resilience: Self-transcendence, Confidence/Mastery, Self-esteem

“Hey! Just cause…Just cause, because I’m gonna be ok, I won’t submit myself to low chances and slim odds”

“We’re gonna win no matter what; Just cause, Just cause we believe in ourselves!”

Quality of Life: Well-being “No complaints from me; My life is full” “I don’t need any fortune, riches, or fame, I’ve got all the

dreams a person should claim”

Selected Parent Statements of Benefit Indirectly Derived from AYA Focused TMV Intervention

1“It was great for the two of them [father, son] to have something to work on together.”

2“…nobody listed that as one of the study benefits…that we would have a bonding experience over this.”

3“…very deep things like what she’s been going through with this illness – there was silence about that. With the video…she is talking now. [The video] helped me understand her emotions and the value she had placed on different people.”

4“…it gave me kind of some peace.”5“…this could be the last record we have of him. In that

regard, it was a big deal. It’s definitely something we’ll always keep.”

Parent Statements of Need for Parent Communication Intervention

“We have never had any problems but I think the very deep things like what she’s been going through with this illness there was silence about that. We were not sharing those emotions or [able] to bring out her emotions to be able to talk about them.” 

“…it probably would have been better if I could have been more connected to [my son during his transplant] stay, instead of pushed away, with the strategies to help me talk to him.” “It might be an asset to have a parent support group to teach the strategies to them or maybe even another parent saying hey I did this and maybe this would work.”  

Summary and Next Steps

Preliminary Findings RIM working as hypothesized to guide interventionsFindings indicate greatest impact on family supportQualitative interview data and DVD content support

findings and next stepsNext Steps:

SMART + Parents ─ Family Environment─ High risk, palliative care sample

Social Support: Connectedness w/ HCP Resilience Enhancement with AYA Profile (REAP)

Progress towards Next Steps

COG Concept: SMART Translation to Palliative CareCo-Principal Investigators:

Sheri L. Robb, PhD, MT-BC Joan E. Haase, PhD, RN, FAAN

Collaborative effort:COG Nursing DisciplineCOG Cancer Control Committee – Palliative Care

Sub-committee

Overall Goal of Study

To assist parents to open and sustain dialogue with their adolescent/young adult (AYA) with high risk cancers. It is hypothesized that adding a parent communication component to the established Therapeutic Music Video (TMV) intervention will positively influence parent outcomes and strengthen AYA outcomes.

Aim 2

(Parents) Evaluate the efficacy of a TMV + P intervention compared to a TMV intervention for parents of AYA undergoing moderate to high intensity chemotherapy, with an estimated event-free survival of 50% or less.

(Adolescents/Young Adults): Evaluate the efficacy of a TMV + P intervention compared to a TMV intervention for adolescents/young adults undergoing moderate to high intensity, with an estimated event-free survival of 50% or less.

Proposed Study Design

Two-group randomized clinical trial TMV Group and TMV + P group

Parent Communication Component3 tailored 40-minute sessions with a trained intervenerManaging the Chaos: Self Care as the First Step to

Caring for Your AYA; Strategies for AYA Autonomy Support: Understanding

AYA’s Ways of Coping; and Relationship Support: Choosing the Right Parenting

Role for the Moment and Strategies for Open Dialogue.

“…only your mind can break the mold”

~Heather, age 12