Papers by Kristin Stegenga
BMC complementary medicine and therapies, Mar 27, 2023
Background Music therapy is a standard palliative care service in many pediatric and adult hospit... more Background Music therapy is a standard palliative care service in many pediatric and adult hospitals; however, most research has focused on the use of music to improve psychosocial dimensions of health, without considering biological dimensions. This study builds on prior work examining psychosocial mechanisms of action underlying an Active Music Engagement (AME) intervention, designed to help manage emotional distress and improve positive health outcomes in young children with cancer and parents (caregivers), by examining its effects on biomarkers of stress and immune function. Methods This two-group randomized controlled trial (R01NR019190) is designed to examine biological mechanisms of effect and dose-response relationships of AME on child/parent stress during the consolidation phase of Acute B-or T-cell Lymphoblastic Leukemia (ALL) and T-cell Lymphoblastic Lymphoma (TLyLy) treatment. Child/parent dyads (n = 228) are stratified (by age, site, risk level) and randomized in blocks of four to the AME or attention control condition. Each group receives one session (30-minutes AME; 20-minutes control) during weekly clinic visits (4 weeks standard risk B-cell ALL; 8 weeks high risk B-cell ALL/T-cell ALL/TLyLy). Parents complete questionnaires at baseline and post-intervention. Child/parent salivary cortisol samples are taken pre-and post-session (sessions 1-4). Child blood samples are reserved from routine draws before sessions 1 and 4 (all participants) and session 8 (high risk participants). We will use linear mixed models to estimate AME's effect on child/parent cortisol. Examining child/
Blood, Nov 16, 2007
The purpose of this study is to assess Quality of Life (AQoL) of adolescents with cancer and comp... more The purpose of this study is to assess Quality of Life (AQoL) of adolescents with cancer and compare it to adolescents with other hematological disorders who receive medical care from the Hematology/Oncology Clinic at Children’s Mercy Hospitals and Clinics (CMHC). Children with cancer are surviving longer due to improved medical care, and cancer is recently being recognized as a chronic illness. The other two disease conditions we are comparing the QoL of adolescents with cancer are - sickle cell disease (SCD) and hemophilia. Literature shows evidence that for each disease condition, patients have lower QoL compared to their healthy counter-parts, but there is a void in area of research comparing QoL of adolescents with cancer to other blood diseases like hemophilia and SCD. This project was funded by Children’s Mercy Cancer Center Board. Methods - Subjects between ages of 11 to 17 years with diagnosis of cancer, sickle cell disease or hemophilia that are followed at CMHC were eligible to participate. We mailed out AQoL questionnaires to 100 oncology, 100 sickle cell, and 52 hemophilia adolescents who were identified from database. Data was collected using a Likert-scaled instrument with 25 questions under four major sub-domains - Physical, emotional, social and functional well being. The AQOL scores for each domain represented an average of the Likert scale items with a theoretical minimum of 0 and a theoretical maximum of 4. We defined a difference of 0.5 or greater on any subdomain as having clinical relevance. Results 41 oncology, 29 SCD and 17 hemophilia responses were received back. Demographic data were self-disclosed to describe the sample population. Overall AQoL scores ranged from 0.0 to 4.0 for Phys, 1.0 to 4.0 for Soc, 0.4 to 4.0 for Emotional, and 1.4 to 4.0 for Functional subdomain. For all four measures, the scores were skewed right (clustered towards the upper limit with a long tail extending to the lower values). Only the Physical subdomain showed a borderline effect (p=0.056) with the Hemophilia group showing a larger mean than the other two groups. The remaining subdomains did not exhibit differences large enough to be clinically or statistically significant. Although there were small difference in the Oncology group with gender on the Physical and Emotional scale, these difference were not statistical significant. The differences on the Social and Functional well being scale were very small and within the range of clinical indifference, even after allowing for sampling error. There were no statistical or clinical differences in the Sickle Cell group between boys and girls, but this may be due to the small sample size in this group. No comparison with gender was possible in the hemophilia group. There were no statistical differences in the oncology group between those on or off treatment, but this may also be due to the small sizes in these groups. Conclusion With a few exceptions, the QOL subdomains showed no statistically significant or clinically significant differences between the three disease groups or between the boys and girls within each disease groups. This may be due, in part, to the small sample size of this study. There were two trends with achieved borderline significance: hemophilia patients showed higher AQOL scores on the physical and emotional subdomains.
Springer eBooks, Nov 29, 2017
Participatory research that utilises creative methods has become central to understanding childre... more Participatory research that utilises creative methods has become central to understanding children and young people and how they experience the world they live in. We argue here that ‘the interview’, used appropriately, is a useful method, an important member in the researchers’ ‘toolbox’. This chapter offers reflections on the challenges and advantages of interviews and how to make the most of these social events, where power imbalances can be levelled to gain deep insights into the experiences of those we undertake research with. Understanding the population we are working with is key to our success, and we must be reflexive in our use of methods if we are to continue to individualise our approach to the population we are working with. We therefore focus on a range of techniques, used with different populations, and make suggestions on how the interview technique can be ‘adapted’ and ‘added to’, so that it can be individualised to the population in a research study.
Integrative Cancer Therapies, 2022
Treatment fidelity is the use of methodological strategies to monitor and enhance reliability and... more Treatment fidelity is the use of methodological strategies to monitor and enhance reliability and validity of behavioral intervention trials. Despite availability of guidelines and checklists, treatment fidelity remains underreported, hindering evaluation, interpretation, and cross-study comparisons. Treatment fidelity is particularly important for music interventions given the inherent complexity of musical stimuli and flexibility required for tailored delivery. The purpose of this paper is to define and describe treatment fidelity strategies for our trial of a music-based play intervention for young children with cancer and parents grounded in the NIH Behavior Change Consortium Treatment Fidelity Recommendations. We report strategies for all 5 areas: study design, training providers, delivery of treatment, receipt of treatment, and enactment of treatment skills. We also discuss 4 challenges our team encountered, including: (1) standardizing live music delivery, (2) defining boundaries for tailored intervention delivery, (3) managing extended time between participants, and (4) minimizing risk for bias. This paper expands on current fidelity literature and may provide a working model for other investigators examining dyadic and/or active music interventions.
Journal of PeriAnesthesia Nursing, Aug 1, 2015
Blood, 2006
Between 1995 and 2004, two NIH-sponsored studies (STOP/STOP II) showed that children with sickle ... more Between 1995 and 2004, two NIH-sponsored studies (STOP/STOP II) showed that children with sickle cell disease (SCD) and abnormal transcranial Doppler blood flow measurements (high stroke risk) are protected from stroke with regular blood transfusions. Iron overload, which may lead to complications and requires iron removal therapy, was monitored by serum ferritin (SF). Liver iron concentration (LIC) measurement was not mandated by protocol and was performed at investigator discretion. Biopsy dates and lab values were captured during STOP/STOP II, providing an opportunity to validate SF against LIC. 75 LICs on 36 patients (19 female, 17 male) at 8 centers were obtained. No liver biopsy complications were reported. LICs were correlated with STOP/STOP II core laboratory SF and alanine aminotransferase (ALT) obtained within 180 days of LICs. Median age at first biopsy was 11.1 years (range, 4.5–17.8), median time from start of transfusion was 36 months (range, 2–100). Iron removal treat...
Blood, 2007
The purpose of this study is to assess Quality of Life (AQoL) of adolescents with cancer and comp... more The purpose of this study is to assess Quality of Life (AQoL) of adolescents with cancer and compare it to adolescents with other hematological disorders who receive medical care from the Hematology/Oncology Clinic at Children’s Mercy Hospitals and Clinics (CMHC). Children with cancer are surviving longer due to improved medical care, and cancer is recently being recognized as a chronic illness. The other two disease conditions we are comparing the QoL of adolescents with cancer are - sickle cell disease (SCD) and hemophilia. Literature shows evidence that for each disease condition, patients have lower QoL compared to their healthy counter-parts, but there is a void in area of research comparing QoL of adolescents with cancer to other blood diseases like hemophilia and SCD. This project was funded by Children’s Mercy Cancer Center Board. Methods - Subjects between ages of 11 to 17 years with diagnosis of cancer, sickle cell disease or hemophilia that are followed at CMHC were eligi...
The Journal of nursing administration, 2018
The aim of this study was to understand how nurses in a 25-bed critical-access hospital (CAH) led... more The aim of this study was to understand how nurses in a 25-bed critical-access hospital (CAH) led change to become the 1st to achieve Magnet®. Approximately 21% of the US population lives in rural areas served by CAHs. Rural nurse executives are particularly challenged with limited resources. Staff nurses, nurse managers, interprofessional care providers, the chief nursing officer, and board of directors (n = 27) were interviewed. Observations of hospital units and administrative meetings were done, and hospital reports were analyzed. Nine themes emerged to support a conceptual model of leading change. The CAH spent 3 years of its 6-year journey establishing organizational readiness. Nurses overcame complex challenges by balancing operational support and fostering relationships. The Magnet journey led to significantly improved nurse and patient outcomes. A new organizational culture centered on shared governance, evidence-based practice, and higher education emerged. The journey to ...
Journal of PeriAnesthesia Nursing, 2015
Journal of Pediatric Oncology Nursing, 2007
The purpose of this study is to enable adolescents with cancer to self-evaluate their quality of ... more The purpose of this study is to enable adolescents with cancer to self-evaluate their quality of life (QoL). Data were collected using a newly developed Likertscaled QoL instrument. In addition, each participant could comment on how the variable impacted his or her QoL. Demographic data were self-disclosed to describe the sample population of 75 adolescents (41 males and 34 females). Overall QoL scores ranged from 27 to 48 (mean = 41.27, SD = 4.31) of a possible 48. Quality of life scores were lowest among those who were female and presently receiving therapy. Overall reliability for the instrument is acceptable ( r = .77). These data reveal that adolescents are aware that their QoL is affected by cancer and its treatment. This instrument demonstrates scores that are statistically different (P = .000) between those presently receiving treatment compared with those not receiving treatment. Although not statistically significant, mean scores for females were lower than for males (P = ...
Participatory research that utilises creative methods has become central to understanding childre... more Participatory research that utilises creative methods has become central to understanding children and young people and how they experience the world they live in. We argue here that ‘the interview’, used appropriately, is a useful method, an important member in the researchers’ ‘toolbox’. This chapter offers reflections on the challenges and advantages of interviews and how to make the most of these social events, where power imbalances can be levelled to gain deep insights into the experiences of those we undertake research with. Understanding the population we are working with is key to our success, and we must be reflexive in our use of methods if we are to continue to individualise our approach to the population we are working with. We therefore focus on a range of techniques, used with different populations, and make suggestions on how the interview technique can be ‘adapted’ and ‘added to’, so that it can be individualised to the population in a research study.
Palliative & Supportive Care, Jun 30, 2023
PURPOSE: The purpose of this study was to conduct validity and reliability testing of a novel qua... more PURPOSE: The purpose of this study was to conduct validity and reliability testing of a novel quantitative instrument, the Symptom Intrusiveness Rating Scale (SyIRS), developed to assess health-related quality of life (HRQOL) based on individuals' perception of how symptoms associated with a chronic condition affect their quality of life. It was noted in a review of the literature that an instrument focusing on the impact of symptoms of HRQOL that can be used as a subjective assessment tool for all individuals with symptoms related to a chronic condition is currently not available. DESIGN: Prospective observational study. SUBJECTS AND SETTING: The sample was comprised of 50 participants experiencing pain associated with chronic wounds hospitalized in an urban 500-bed acute care hospital in the south central United States. METHODS: Cognitive pretesting was conducted to test the construct of the SyIRS. Two experts in the fi eld of HRQOL reviewed and scored statements on the SyIRS based on their relevance to HRQOL. Item-level content validity index (I-CVI) and scale-level content validity index average (S-CVI/Ave) were calculated to assess content validity. Internal consistency was tested using the Cronbach alpha. Test-retest reliability was obtained after administering the SyIRS twice over 2 weeks. The Pearson correlation was used to determine concurrent validity between the SyIRS and the SF-36v2 administered at the same time to confi rm HRQOL as the construct on the SyIRS. RESULTS: Cognitive pretesting indicated that participants interpreted the SyIRS instructions, statements, and response options as intended by the researchers. The SyIRS is a valid and reliable instrument with an S-CVI/Ave = 0.90, indicating the statement in the SyIRS all refl ected HRQOL, Cronbach α = 0.904 indicated the
Journal of Pediatric Nursing, Jul 1, 2022
Publisher, Feb 1, 2008
Stem cell transplantation (SCT) is an innovative treatment of hematological malignancies and offe... more Stem cell transplantation (SCT) is an innovative treatment of hematological malignancies and offers potential long-term survival. SCT services offered at one of the largest transplant centers in the country include: autologous, allogeneic and cord blood transplant. Frequently, it is a challenge to obtain transplant financial coverage because of the high-cost of treatment and insurance carriers considering the treatment experimental. The SCT Patient Access Staff, which include RN's and Patient Access Specialists, handle this complex process daily. Strategies employed to assure transplant approval from insurance carriers are: 1) A letter of medical necessity is sent to the insurance company with a clinical dictation from the SCT physician explaining the plan of treatment and outlining the experience and success rate of the treatment, 2) The patients are informed of their treatment so they can actively participate in the approval process with their insurance carriers, 3) A professional working relationship with the insurance Case Manager is established as they are also patient advocates, 4) Patients are encouraged to research and learn about their rights, state laws and to seek available advocacy programs, 5) An appeal is completed for in-network benefits if transplant services are out-of-network. The Patient Access Coordinators work closely with the managedcare office to negotiate the transplant cost between the insurance brought to you by CORE View metadata, citation and similar papers at core.ac.uk
Sigma Theta Tau International's 24th International Nursing Research Congress, Oct 22, 2013
Journal of pediatric hematology/oncology nursing, 2022
Clinical Nurse Specialist, Jul 1, 2017
Evidence-based nursing is in the forefront of health care delivery systems. Federal and state age... more Evidence-based nursing is in the forefront of health care delivery systems. Federal and state agencies, academic institutions, and health care delivery systems recognize the importance of nursing research. This article describes mechanisms that facilitate nursing partnerships yielding high level research outcomes in a clinical setting. A phase II multi-center behavioral intervention study with pediatric stem cell transplant patients was the context of this academic/clinical research partnership. Strategies to develop and maintain this partnership involved a thorough understanding of each nurse's focus and barriers. A variety of communication plans and training events maximized pre-existing professional networks. Academic/clinical nurses' discussions identified barriers to the research process, the most significant being role conflict. Communication and validation of benefits to each individual and institution facilitated the research process during challenging times. Establishing strong academic/clinical partnerships should lead to evidencebased research outcomes for the nursing profession, healthcare delivery systems, and patients and families. "Research teams of the future" is one of the three key themes in the NIH Roadmap initiative to develop a more efficient and productive system of knowledge generation and
Journal of Alternative and Complementary Medicine, May 1, 2020
Objective: Primary aims of the proposed protocol are to determine the feasibility/acceptability o... more Objective: 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 interrelated 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
Journal of Clinical Oncology, Nov 1, 2013
217 Background: With increased survival rates, adult survivors of childhood cancers (ASCC) face l... more 217 Background: With increased survival rates, adult survivors of childhood cancers (ASCC) face lifelong screening and healthcare needs. Given increasing costs and demands across healthcare institutions, there is a significant need for survivorship models that emphasize regional collaboration, transition of pediatric patients to adult care, and focus on survivor-centered outcomes. Over the last two years, the presenters developed and implemented a survivor-centered regional approach to meet ASCC needs, addressing system, provider, and survivor barriers to successful transition and ongoing ASCC care. The presenters will describe community engagement strategies utilized to build a successful, sustainable survivor-centered approach across the region. The Midwest Cancer Alliance (MCA), the outreach arm of University of Kansas Cancer Center (KUCC), provides a supportive, neutral environment to bridge institution-specific concerns. Interdisciplinary teams from Children's Mercy Hospital and University of Kansas' Pediatrics department developed a formal working group with KUCC adult-focused partners. The group has taken an inclusive approach, bringing together pediatric and adult healthcare teams as well as expertise in outreach, patient navigation, telemedicine, education, and evaluation/research. Emphasis will be placed on how the team has prioritized needs-driven deliverables across metropolitan and rural communities. The transitions program has maintained monthly working group meetings; completed a survivor needs assessment and disseminated findings; and initiated a cross-institutional transitions clinic. The team is collaborating on a comprehensive survivorship training approach to educate regional healthcare providers. The presenters will describe the team's performance improvement processes to monitor outcomes and continuously refine the ASCC/AYA model. Community engagement is an ideal platform for regional program development to meet ASCC survivor needs. Future steps include measuring program outcomes, working toward EHR integration, increasing survivor input, and incorporating education into residency/fellowship training.
Journal of Pediatric Hematology/Oncology Nursing
Background: Mobile health technologies can assist children to communicate their symptom experienc... more Background: Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. Methods: Nineteen parents (18 mothers; median 35 years old, range 26–48 years) of children (6–12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child’s trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. Results: Parents perceived the app to (1) elicit the child’s voice about his/her symptom experience; (2) pro...
Uploads
Papers by Kristin Stegenga