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Joan E. Haase
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Dr. Joan Haase conducts collaborative research with faculty in the School of Nursing, the School of Music, and the School of Medicine to discover ways to improve the resiliency and quality of life of adolescents and young adults with cancer. Dr. Haase's Adolescent Resilience Model (ARM) is used as a guide for interventions to enhance individual, family, and social protective factors in order to increase resilience and quality of life.
These social protective factors include relationships with family, friends, and health care providers, positive coping, hope and spirituality. For example, a current study applies the ARM in a music video intervention for adolescents and young adults receiving stem cell transplants for cancer.
The adolescents and young adults complete on-line surveys to measure resilience factors improved by the music intervention. By assessing levels of resilience factors over time, across developmental stages, and among different age groups, health care providers can more accurately identify effective interventions.
ARM is an excellent example of how faculty at IUPUI are TRANSLATING their RESEARCH INTO PRACTICE.
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Item A Synergistic Dialogue: Clinical Nurses and Academic Researchers in Partnership(Elsevier, 2008-02-01) Barnes, Y.J.; Hendricks-Ferguson, V.L.; Oakley, B.; Roll, L.; Stegenga, K.; Haase, J.E.; School of NursingItem Stories and Music for Adolescent/Young Adult: Resilience During Transplant(Elsevier, 2009-02-01) Haase, J. A.; Robb, S. L.; Burns, D. S.; Stegenga, K.; Haut, P. R.; Rimkus, C.; Medicine, School of MedicineItem Powerful Messages Communicated Through Music Videos by Adolescents/Young Adults Undergoing Stem Cell Transplant(2011) Haase, Joan E.; Robb, Sheri L.; Fort, A.N.Item “The RESPECT (Research in Palliative and End-of-Life Communication and Training) Center”(Office of the Vice Chancellor for Research, 2011-04-08) Hickman, Susan E.; Sachs, Greg A.; Haase, Joan E.; Stickler, Molly DonovanCommunication is crucial to decision-making and high-quality care for patients with serious illness, but there are significant gaps in communication among patients, families, and clinicians. The Research in Palliative and End-of-Life Communication and Training (RESPECT) Center was funded in July 2010 under the IUPUI Signature Center Initiative to advance the science of palliative and end-of-life communication. The mission of the RESPECT Center is to build a collaborative, interdisciplinary scientific community of researchers and clinicians to work together to advance the science of communication in palliative and end-of-life care across the lifespan. The Center capitalizes on the complementary and expanding expertise at IU to support the advancement of research on communication in populations with serious illness that is lifethreatening, debilitating, or terminal. The Center is working to achieve its mission through three primary activities. First, the Center convenes researchers with shared expertise to utilize the collective wisdom of the interdisciplinary group in grant development and submission. The RESPECT Center uses a peer review meeting model to provide a forum for students, trainees, and faculty to develop and refine their grant writing activities focused on palliative and end-of-life care from idea development to grant revision. Second, research development is augmented by funding opportunities for peerreviewed pilot studies. Pilot funding is designed to attract new researchers to this area of study and to facilitate the generation of pilot data for more experienced researchers who are carving a new path in the field. Finally, several outreach activities are being undertaken with the goal of fostering new partnerships for translational science. The RESPECT Visiting Scholar series brings in external experts to present as part of a conference series and to meet with research faculty, clinicians, and administration to discuss issues related to advancing palliative and endof-life care research at IU. Additionally, a city-wide conference will be convened in year 3 to bring together members of the health care professional community with an interest in evidencebased practice in palliative and end-of-life care. The long-term goal of the RESPECT Center is to secure funding to permit the continued operation and expansion of Center activities.Item Development and Use of a Web-based Data Management System for a Randomized Clinical Trial of Adolescents and Young Adults(2011-06) Musick, Beverly S.; Robb, Sheri L.; Burns, Debra S.; Stegenga, Kristin; Yan, Ming; McCorkle, Kathy J.; Haase, Joan E.Recent advances in technology provide support for multi-site, web-based data entry systems and the storage of data in a centralized location, resulting in immediate access to data for investigators, reduced participant burden and human entry error, and improved integrity of clinical trial data. The purpose of this paper is to describe the development of a comprehensive, web-based data management system for a multi-site randomized behavioral intervention trial. Strategies used to create this study-specific data management system included interdisciplinary collaboration, design mapping, feasibility assessments, and input from an advisory board of former patients with characteristics similar to the targeted population. The resulting data management system and development strategies provide a template for other behavioral intervention studies.Item Principles and Strategies for Monitoring Data Collection Integrity in a Multi-site Randomized Clinical Trial of a Behavioral Intervention(2011-08) Phillips-Salimi, Celeste R.; Stickler, Molly A.; Stegenga, Kristin; Lee, Melissa; Haase, Joan E.Although treatment fidelity strategies for enhancing the integrity of behavioral interventions have been well described, little has been written about monitoring data collection integrity. This article describes the principles and strategies developed to monitor data collection integrity of the "Stories and Music for Adolescent/Young Adult Resilience During Transplant" study (R01NR008583; U10CA098543; U10CA095861) -- a multi-site Children's Oncology Group randomized clinical trial of a music therapy intervention for adolescents and young adults undergoing stem cell transplant. The principles and strategies outlined in this article provide one model for development and evaluation of a data collection integrity monitoring plan for behavioral interventions that may be adapted by investigators and may be useful to funding agencies and grant application reviewers in evaluating proposals.Item Ensuring Treatment Fidelity in a Multi-site Behavioral Intervention Study: Implementing NIH Behavior Change Consortium Recommendations in the SMART Trial(2011-11) Robb, Sheri L.; Burns, Debra S.; Docherty, Sharron L.; Haase, Joan E.The Stories and Music for Adolescent/Young Adult Resilience during Transplant (SMART) study (R01NR008583; U10CA098543; U10CA095861) is an ongoing multi-site Children’s Oncology Group randomized clinical trial testing the efficacy of a therapeutic music video intervention for adolescents/young adults (11–24 years of age) with cancer undergoing stem cell transplant. Treatment fidelity strategies from our trial are consistent with the NIH Behavior Change Consortium Treatment Fidelity Workgroup (BCC) recommendations and provide a successful working model for treatment fidelity implementation in a large, multi-site behavioral intervention study. In this paper we summarize 20 specific treatment fidelity strategies used in the SMART trial and how these strategies correspond with NIH BCC recommendations in 5 specific areas: 1) study design, 2) training providers, 3) delivery of treatment, 4) receipt of treatment, and 5) enactment of treatment skills. Increased use and reporting of treatment fidelity procedures is essential in advancing the reliability and validity of behavioral intervention research. The SMART trial provides a strong model for the application of fidelity strategies to improve scientific findings and addresses the absence of published literature illustrating the application of BCC recommendations in behavioral intervention studies.Item Research in Palliative and End-of-Life Communication and Training (RESPECT) Center: Year 2(Office of the Vice Chancellor for Research, 2012-04-13) Hickman, Susan E.; Haase, Joan E.; Sachs, GregThe mission of the Research in Palliative and End-of-Life Communication and Training (RESPECT) Center is to build a collaborative, interdisciplinary scientific community of researchers and clinicians to work together to advance the science of communication in palliative and end-of-life care across the lifespan. Center Goals: • Accelerate the development of innovative descriptive and intervention research trials relevant to communication and decision-making in children, adolescents, adults, and elders with serious and/or life-threatening illness • Develop new community partnerships for translational science to enhance palliative and end-of-life care research and practice • Create mentorship opportunities for developing scholars who will become the next generation of productive, passionate palliative and end-of-life care researchers The RESPECT Center is comprised of 18 faculty, 3 post-doctorial trainees and 3 staff members. The RESPECT Center meets twice monthly to review and discuss members’ projects, content, design, draft proposals, and brainstorming sessions. In the first year, 9 grants were submitted, 12 publications were accepted and $6,534,611 dollars awarded. In Year 1, the RESPECT center sponsored 2 visiting scholars. Finally, the RESPECT Center is funding 4 pilot projects and will continue to mentor developing scholars.Item Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer(Elsevier, 2013) Hendricks-Ferguson, Verna; Cherven, Brooke; Burns, Debra S.; Docherty, Sharron L.; Phillips-Salimi, Celeste R.; Roll, Lona; Stegenga, Kristin A.; Haase, Joan E.; Stickler, Molly Donovan; Nursing, School ofINTRODUCTION: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART). METHODS: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer. RESULTS: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study. DISCUSSION: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies.Item Family Adaptability and Cohesion Influences on Positive Health Outcomes for Adolescent and Young Adults Undergoing Stem Cell Transplant for Cancer(Office of the Vice Chancellor for Research, 2013-04-05) Huddleston, Bailey M.; Haase, Joan E.Stem cell transplant (SCT) is a physically and emotionally difficult experience for adolescents/young adults (AYA) with cancer. AYA undergoing SCT require high levels of support to deal with illness-related distress. Family adaptability and cohesion are key protective factors influencing AYA outcomes throughout the SCT treatment process. Research on the influences of family protective factors on SCT outcomes for AYA is minimal. Purposes of this secondary analysis are to: 1) longitudinally examine the trajectory of family adaptability/cohesion and well-being; 2) describe AYA perceived family adaptability/cohesion and well-being at each of 3 three time points; 3) describe relationships between adaptability, cohesion and well-being from each time point to all other subsequent time points; 4) examine the longitudinal influence of adaptability/cohesion on well-being. The Haase Resilience in Illness Model (RIM) that guides this study identifies two risk factors and five protective factors that influence resilience and quality of life outcomes. The study design was longitudinal, descriptive. The sample included 53 AYA, 11 to 24 years of age, undergoing SCT for cancer at 11 pediatric or adult hospitals. AYA completed measures on a secure web-based server immediately prior to, during, and 90 days post-SCT. The RIM-related variables family adaptability, cohesion, and well-being were measured by the Family Adaptability and Cohesion Scale (FACES II) and Index of Well-Being (IWB). Descriptive and correlational statistics were used to analyze the data. We found that improvement in adaptability/cohesion is not strongly associated with improvement in well-being from T2 to T1 or T3 to T1, but is statistical significance when compared between T3 to T2. It is necessary to understand how family adaptability/cohesion influences AYA uncertainty and symptoms, coping, derived meaning of illness, and resilience, in order to develop effective family-focused interventions that foster resilience outcomes.