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14a haase roll 2010 texas aya conference handouts


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14a haase roll 2010 texas aya conference handouts

  1. 1. Accentuate the Positive: Fostering Resilience in Adolescents and Young Adults with Cancer <br />2010 TEXAS ADOLESCENT AND YOUNG ADULT (AYA)<br />ONCOLOGY CONFERENCE<br />San Antonio, TX Oct. 1-2, 2010<br />Joan E. Haase, PhD, RN, FAAN<br />Emily Holmquist Professor of Pediatric Oncology Nursing<br />Indiana University School of Nursing<br />Lona Roll, RN, MS<br />CHRISTUS Santa Rosa Children's Hospital, San Antonio, TX<br />
  2. 2. Resilience In Illness for AYA<br /> Background perspectives<br />Triangulation of methods<br />Preliminary model tests<br />Current randomized clinical trial<br />Future directions<br />
  3. 3. Meaning-based models Hultch & Deutsch, 1981; Weekes, 1991<br />patterns and experience of illness <br />subjective and holistic perspective<br />Lifespan Development Costain, Hewison, & Howes, 1993<br />Context of historical and contemporary influences on development<br />Universal (e.g. puberty); Historical cohort (e.g age on 9/11/01); (random individual (e.g cancer)<br />Positive Health Singer, B. H., & Ryff, C. D. 2001<br />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<br />Background Perspectives<br />
  4. 4. Iterative Methods<br />Qualitative Model Development <br />Contributions of Qualitative Studies<br />Quantitative Measurement and Model Evaluation <br />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<br />Mixed Methods Approaches<br />
  5. 5.
  6. 6. RIM Risk and Protective Factors<br />
  7. 7. Preliminary RIM Evaluation Studies<br />RIM 1 The Adolescent Resilience Model: Model Development and Instrumentation<br />University of Arizona Vice President for Research Faculty Small Grant<br />RIM 2 Resilience and Quality of Life in Adolescents with Cancer<br />National Institutes of Health/National Institute of Nursing Research NIH/NINR 1R29 NR03882<br />Walther Cancer Institute, Indianapolis, IN, Factors Affecting Quality of Life Outcomes for Adolescents with Cancer<br />Sites and Collaborative Investigators<br />British Columbia Children’s Hospital<br />Richland Memorial Hospital, Columbia, SC<br />Children’s Hospital of Oklahoma<br /> Children's Hospital-Los Angeles<br />University Hospital, Tucson, AZ <br />Indiana University-Riley Hospital for Children<br />
  8. 8. Results Summary<br />Support for RIM<br />Psychometric properties met reliability criteria; hypothesized relationships supported construct validity<br /> High level of explained variance for outcomes of resilience (67%) and self-transcendence (63%). <br />Variance explained for proximal outcomes ranged from 18% to 76%. <br />Hypothesized Spiritual Perspective path not supported<br />RIM may be useful guide to targeted interventions grounded in the experiences of the adolescents/young adults. <br />
  9. 9. RIM 3: Stories and Music for Adolescent/Young Adult Resilience During Transplant (SMART)<br />
  10. 10. Funding<br /><ul><li>National Institutes of Health
  11. 11. National Institute of Nursing Research R01 NR008583 (Haase, PI; Robb,Co-PI)
  12. 12. Children’s Oncology Group ANUR0631 National Cancer Institute U10 CA098543 & U10 CA095861 (Co-chairs: Haase & Robb)
  13. 13. American Cancer Society
  14. 14. Institutional Grant for Pilot Study, (Burns, PI)</li></li></ul><li>8 Performance Sites, 11 Hospitals, Cast of “Thousands”*<br />*Mott Children’s Hospital<br />Eileen Kintner, PhD<br />Children’s Hospital of Atlanta, Emory University Hospital<br />Ann Haight, MD, Brooke Cherven, MSN<br />Durham, NC: Duke University Hospital<br />Sharron Docherty, RN, PhD<br />*DeVos Children’s Hospital<br />David Fryer, MD<br />Riley Hospital for Children, Indiana University Hospital<br />Sheri Robb, PhD, MT-BC, Debra Burns, PhD, MT-BC, Paul Haut, MD, Patrick Monahan, PhD<br />Children’s Mercy Hospital<br />Kristin Stegenga, RN, PhD, CPON<br />*Texas Transplant Institute<br />Lona Roll, MSN, CPON<br />*Barnes Jewish Hospital, St. Louis Children’s Hospital <br />Verna Ferguson, PhD<br />*56 Personnel; 8 Disciplines<br />*Closed to New Enrollment<br />
  15. 15.
  16. 16. SMART Study Aims<br />Test the efficacy of a therapeutic music video (TMV) intervention for AYA during the acute phase of SCT<br /><ul><li>Hypotheses: Compared to low dose, TMV group will have:
  17. 17. less symptom distress and defensive coping;
  18. 18. greater
  19. 19. family adaptability/cohesion/communication,
  20. 20. positive coping,
  21. 21. hope, spiritual perspective,
  22. 22. resilience (confidence, self-transcendence, self-esteem),
  23. 23. quality of life.</li></ul>Qualitatively Evaluate the Effectiveness of the TMV<br />
  24. 24. SMART Design<br /><ul><li>Phase II randomized clinical trial
  25. 25. Two-groups: low dose and experimental
  26. 26. 6 intervention sessions over 3-week period
  27. 27. Outcomes measured at baseline, post-intervention and 100 days post-transplant
  28. 28. Brief symptoms (anxiety, mood, pain, fatigue, sedation, mucositis) measure pre- post- 3 of 6 sessions </li></li></ul><li>SMART Target Sample<br />Targeted N=130<br />Inclusion criteria<br />Oncology condition requiring SCT <br />Both allogeneic and autologous transplants <br />Ages 11-24<br />Able to read and speak English<br />Exclusion criteria<br />Cognitive impairment precluding completion of measures/intervention<br />Cancer diagnoses usually occurring in childhood/adolescent or young adult populations <br /> Married<br />Have Children<br />
  29. 29. Conceptual Frameworks<br /><ul><li>Guide Therapeutic Music Intervention (TMV)
  30. 30. Contextual Support Model of Music Therapy (Robb, 2000)
  31. 31. Guide problem
  32. 32. Resilience in Illness Model (RIM) (Haase et al., 1999)</li></li></ul><li>Significant Effects of TMV on RIM<br />Illness-related Distress<br />Defensive Coping<br />+<br />-<br />TMV<br />-<br />-<br />Self-Transcendence<br />Courageous Coping<br />+<br />Family Support<br />Social Integration<br />+<br />+<br />Resilience<br />+<br />+<br />Hope-derived Meaning<br />+<br />+<br />Spiritual<br />Perspective<br />+<br />
  33. 33. Selected AYA Song Lyrics Representing Resilience in Illness Model Variables<br /><ul><li>Illness Related Distress: Uncertainty, Symptom Distress</li></ul>“Chemo makes me nauseous, makes the room spin”<br />“And so I play these games, to keep my mind off the pain” <br />“I’ve got a test tomorrow and it worries me” <br />“Best friends forever for the rest of our lives, no matter what”<br /><ul><li>Defensive Coping: Avoidant, Emotive, Fatalistic</li></ul>“Restin’ up for running, running away”<br />“They work as a distraction, even with my slow reactions”<br /><ul><li>Courageous Coping: Confrontive, Optimistic, Supportant</li></ul>“Looking for someone to help me come out right”<br />“Don’t you worry, I’m alright, just keep yourselves in the fight, think of that”<br />
  34. 34. Selected AYA Song Lyrics Representing Resilience in Illness Model Variables<br />Derived Meaning:SpiritualPerspective, Hope<br />“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?”<br />“I think I need my Savior to help me get things right”<br />Family Environment: Adaptability, Cohesiveness, Communication, Perceived Strengths<br />“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.”<br />“Remember when, the sound of family met brought such joy”<br />Social Environment: Support from Friends, Support from Healthcare Providers<br />“All of my friends sittin’ back and drinkin’ thinkin’ about them keeps me going”<br />“I guess the docs say what can make me feel this way; My nurse, my nurse, my nurse, talking ‘bout my nurse, my nurse”<br />
  35. 35. Selected AYA Song Lyrics Representing Resilience in Illness Model Variables<br />Resilience: Self-transcendence, Confidence/Mastery, Self-esteem<br />“Hey! Just cause…Just cause, because I’m gonna be ok, I won’t submit myself to low chances and slim odds”<br />“We’re gonna win no matter what; Just cause, Just cause we believe in ourselves!”<br />Quality of Life: Well-being<br />“No complaints from me; My life is full”<br />“I don’t need any fortune, riches, or fame, I’ve got all the dreams a person should claim”<br />
  36. 36. Selected Parent Statements of Benefit Indirectly Derived from AYA Focused TMV Intervention<br />1“It was great for the two of them [father, son] to have something to work on together.”<br />2“…nobody listed that as one of the study benefits…that we would have a bonding experience over this.”<br />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.”<br />4“…it gave me kind of some peace.”<br />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.” <br />
  37. 37. Parent Statements of Need for Parent Communication Intervention<br />“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.”  <br />“…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.”  <br />
  38. 38. Summary and Next Steps<br />Preliminary Findings<br /> RIM working as hypothesized to guide interventions<br />Findings indicate greatest impact on family support<br />Qualitative interview data and DVD content support findings and next steps<br />Next Steps:<br />SMART + Parents <br />Family Environment<br />High risk, palliative care sample<br />Social Support: Connectedness w/ HCP<br />Resilience Enhancement with AYA Profile (REAP) <br />
  39. 39. Progress towards Next Steps<br />COG Concept: SMART Translation to Palliative Care<br />Co-Principal Investigators:<br />Sheri L. Robb, PhD, MT-BC<br />Joan E. Haase, PhD, RN, FAAN<br />Collaborative effort:<br />COG Nursing Discipline<br />COG Cancer Control Committee – Palliative Care Sub-committee<br />
  40. 40. Overall Goal of Study<br />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. <br />
  41. 41. Aim 2<br />(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.<br />(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.<br />
  42. 42. Proposed Study Design<br />Two-group randomized clinical trial <br />TMV Group and TMV + P group<br />Parent Communication Component<br />3 tailored 40-minute sessions with a trained intervener<br />Managing the Chaos: Self Care as the First Step to Caring for Your AYA; <br />Strategies for AYA Autonomy Support: Understanding AYA’s Ways of Coping; and <br />Relationship Support: Choosing the Right Parenting Role for the Moment and Strategies for Open Dialogue. <br />
  43. 43. “…only your mind can break the mold”<br />~Heather, age 12<br />