1. Accentuate the Positive: Fostering Resilience in Adolescents and Young Adults with Cancer 2010 TEXAS ADOLESCENT AND YOUNG ADULT (AYA) ONCOLOGY CONFERENCE San Antonio, TX Oct. 1-2, 2010 Joan E. Haase, PhD, RN, FAAN Emily Holmquist Professor of Pediatric Oncology Nursing Indiana University School of Nursing Lona Roll, RN, MS CHRISTUS Santa Rosa Children's Hospital, San Antonio, TX

2. Resilience In Illness for AYA Background perspectives Triangulation of methods Preliminary model tests Current randomized clinical trial Future directions

3. 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 Background Perspectives

4. Iterative Methods Qualitative Model Development Contributions of Qualitative Studies Quantitative 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 Mixed Methods Approaches

6. RIM Risk and Protective Factors

7. 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

8. Results Summary Support for RIM Psychometric 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.

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

11. National Institute of Nursing Research R01 NR008583 (Haase, PI; Robb,Co-PI)

12. Children’s Oncology Group ANUR0631 National Cancer Institute U10 CA098543 & U10 CA095861 (Co-chairs: Haase & Robb)

13. American Cancer Society

17. less symptom distress and defensive coping;

18. greater

19. family adaptability/cohesion/communication,

20. positive coping,

21. hope, spiritual perspective,

22. resilience (confidence, self-transcendence, self-esteem),

23. quality of life.Qualitatively Evaluate the Effectiveness of the TMV

25. Two-groups: low dose and experimental

26. 6 intervention sessions over 3-week period

27. Outcomes measured at baseline, post-intervention and 100 days post-transplant

30. Contextual Support Model of Music Therapy (Robb, 2000)

31. Guide problem

34. Selected AYA Song Lyrics Representing Resilience in Illness Model Variables Derived Meaning:SpiritualPerspective, 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”

35. 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”

36. 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.”

37. 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.”

38. Summary and Next Steps Preliminary Findings RIM working as hypothesized to guide interventions Findings indicate greatest impact on family support Qualitative interview data and DVD content support findings and next steps Next Steps: SMART + Parents Family Environment High risk, palliative care sample Social Support: Connectedness w/ HCP Resilience Enhancement with AYA Profile (REAP)

39. Progress towards Next Steps COG Concept: SMART Translation to Palliative Care Co-Principal Investigators: Sheri L. Robb, PhD, MT-BC Joan E. Haase, PhD, RN, FAAN Collaborative effort: COG Nursing Discipline COG Cancer Control Committee – Palliative Care Sub-committee

40. 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.

41. 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.

42. Proposed Study Design Two-group randomized clinical trial TMV Group and TMV + P group Parent Communication Component 3 tailored 40-minute sessions with a trained intervener Managing 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.

43. “…only your mind can break the mold” ~Heather, age 12