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 Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study(Wiley, 2022-03) Szilagyi, Csaba; Lion, Alex H.; Varner Perez, Shelley E.; Koch, Sarah; Oyedele, Oladele; Slaven, James E.; Montz, Kianna; Haase, Joan E.; Puchalski, Christina M.; Pediatrics, School of MedicineBackground Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians’ capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients’ spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. Methods Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants’ skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. Results Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants’ ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). Conclusions Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members’ capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.Item 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 Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer(Oxford Academic, 2020-02) Haase, Joan E.; Robb, Sheri L.; Burns, Debra S.; Stegenga, Kristin; Cherven, Brooke; Hendricks-Ferguson, Verna; Roll, Lona; Docherty, Sharron L.; Phillips, Celeste; School of NursingThis empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.Item The experiences of health-care providers during the COVID-19 crisis in China: a qualitative study(Elsevier, 2020-06-01) Liu, Qian; Luo, Dan; Haase, Joan E.; Guo, Qiaohong; Wang, Xiao Qin; Liu, Shuo; Xia, Lin; Liu, Zhongchun; Yang, Jiong; Yang, Bing Xiang; School of NursingBackground In the early stages of the outbreak of coronavirus disease 2019 (COVID-19) in Hubei, China, the local health-care system was overwhelmed. Physicians and nurses who had no infectious disease expertise were recruited to provide care to patients with COVID-19. To our knowledge, no studies on their experiences of combating COVID-19 have been published. We aimed to describe the experiences of these health-care providers in the early stages of the outbreak. Methods We did a qualitative study using an empirical phenomenological approach. Nurses and physicians were recruited from five COVID-19-designated hospitals in Hubei province using purposive and snowball sampling. They participated in semi-structured, in-depth interviews by telephone from Feb 10 to Feb 15, 2020. Interviews were transcribed verbatim and analysed using Haase's adaptation of Colaizzi's phenomenological method. Findings We recruited nine nurses and four physicians. Three theme categories emerged from data analysis. The first was “being fully responsible for patients' wellbeing—‘this is my duty’”. Health-care providers volunteered and tried their best to provide care for patients. Nurses had a crucial role in providing intensive care and assisting with activities of daily living. The second category was “challenges of working on COVID-19 wards”. Health-care providers were challenged by working in a totally new context, exhaustion due to heavy workloads and protective gear, the fear of becoming infected and infecting others, feeling powerless to handle patients' conditions, and managing relationships in this stressful situation. The third category was “resilience amid challenges”. Health-care providers identified many sources of social support and used self-management strategies to cope with the situation. They also achieved transcendence from this unique experience. Interpretation The intensive work drained health-care providers physically and emotionally. Health-care providers showed their resilience and the spirit of professional dedication to overcome difficulties. Comprehensive support should be provided to safeguard the wellbeing of health-care providers. Regular and intensive training for all health-care providers is necessary to promote preparedness and efficacy in crisis management. Funding National Key R&D Program of China, Project of Humanities and Social Sciences of the Ministry of Education in China.Item Active Music Engagement and Cortisol as an Acute Stress Biomarker in Young Hematopoietic Stem Cell Transplant Patients and Caregivers: Results of a Single Case Design Pilot Study(Frontiers in Psychology, 2020-11) Holochwost, Steven J.; Robb, Sheri L.; Henley, Amanda K.; Stegenga, Kristin; Perkins, Susan M.; Russ, Kristen A.; Jacob, Seethal A.; Delgado, David; Haase, Joan E.; Krater, Caitlin M.; Medicine, School of MedicineThis paper reports the results of a single case design pilot study of a music therapy intervention (the Active Music Engagement, or AME) for young children undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers’ perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.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 Cortisol as an Acute Stress Biomarker in Young Hematopoietic Cell Transplant Patients/Caregivers: Active Music Engagement Protocol(Mary Ann Liebert, 2020-05-11) Russ, Kristen A.; Holochwost, Steven J.; Perkins, Susan M.; Stegenga, Kristin; Jacob, Seethal A.; Delgado, David; Henley, Amanda K.; Haase, Joan E.; Robb, Sheri L.; Medicine, School of MedicineObjective: Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. Design: The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Setting/Location: Pediatric inpatient HSCT unit. Subjects: Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. Intervention: AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Outcome Measures: Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Results: Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Conclusions: Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.Item Engaging Clinical Nurses in Research: Nurses’ Experiences Delivering a Communication Intervention in a Behavioral Oncology Clinical Trial(Lippincott, Williams & Wilkins, 2020-04-01) Landon, Leslie; Crane, Stacey; Nance, Stacy; Stegenga, Kristin; Cherven, Brooke; Perez Prado, Luz N.; Butrum, Karen Dawn; Beacham, Barbara; Haase, Joan E.; School of NursingDespite the recognized need for clinical nurses to engage in the conduct of research, little is known about their research experiences. This article describes the experiences of nurses who delivered the communication intervention in a behavioral oncology clinical trial for parents of adolescents and young adults (AYAs) with cancer. A qualitative thematic analysis was conducted of nurse interveners’ (NIs’) reflections on their experiences delivering the communication intervention. Ten data-generating questions were developed to guide NIs’ reflections. Twelve NIs responded via verbal discussions. Six of these also provided written responses. Overall, nurses’ experiences as interveners were powerful and positive, and included time and space to be fully present with patients and families. NIs identified barriers to their involvement in research related to time constraints, administrative support, physical space to privately conduct the intervention, and difficulties maintaining expertise with the intervention. The importance of ongoing collaboration between nurses, unit staff, leaders, and study teams was corroborated. An unexpected finding was the importance of Reflective Clinical Research.Item A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents(Sage, 2019-12) Dias, Nancy; Hendricks-Ferguson, Verna L.; Wei, Holly; Boring, Elizabeth; Sewell, Kerry; Haase, Joan E.; School of NursingAims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.Item Well-Being of Child and Family Participants in Phase 1 Pediatric Oncology Clinical Trials(Oncology Nursing Society, 2018-09-01) Crane, Stacey; Haase, Joan E.; Hickman, Susan E.; School of NursingPROBLEM IDENTIFICATION: Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children. The purpose of this integrative review was to synthesize and appraise the evidence of how P1T participation, which begins with consent and ends with the transition off the P1T, can affect the well-being (either positively or negatively) of children with cancer. The Resilience in Individuals and Families Affected by Cancer Framework, which has an outcome of well-being, was used to synthesize findings. LITERATURE SEARCH: Articles on the experiences of child (n = 21) and adult (n = 31) P1T participants were identified through systematic searches. DATA EVALUATION: Articles were evaluated on rigor and relevance to P1T participant experiences as high, medium, or low. SYNTHESIS: Minimal empirical evidence was found regarding the effect of P1T participation on the well-being of children with cancer. Adult P1T participant experiences provide insights that could also be important to children's P1T experiences. IMPLICATIONS FOR PRACTICE: To achieve a balanced approach in P1T consent discussions, nurses and healthcare providers who work with children considering participation in a P1T should share the potential effect of participation on participants' well-being.