Publications by authors named "Jeanne Erickson"

33 Publications

Building a Research Team in Adolescent/Young Adult Oncology Nursing.

J Pediatr Oncol Nurs 2020 Sep/Oct;37(5):330-337. Epub 2020 Jul 10.

Seattle Children's Hospital, Seattle, WA, USA.

Participation on a collaborative team is an attractive option for conducting research, especially in pediatric hematology/oncology nursing, where the patient population is small. The Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CSAYAC) is a nursing research team that has been in existence for over a decade. The authors share the process by which CSAYAC formed and describe key features that contribute to its sustainability. While the team developed organically rather than via the tenets of team science, key aspects of success include principles related to mentorship, communication, building trust, establishing shared goals, and managing conflict. This description of one team's experience may help other nurses build their own teams for research. Strong, collaborative research teams will advance pediatric hematology/oncology nursing science and scholarship and can be an important source of collegiality and support.
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http://dx.doi.org/10.1177/1043454220938359DOI Listing
July 2020

A Randomized Controlled Trial of a Physical Activity Intervention for Self-management of Fatigue in Adolescents and Young Adults With Cancer.

Cancer Nurs 2020 Jun 17. Epub 2020 Jun 17.

Author Affiliations: College of Nursing (Drs Erickson and Ke) and College of Health Sciences and Department of Kinesiology (Mr Tokarek and Dr Swartz), University of Wisconsin-Milwaukee, Milwaukee, Wisconsin.

Background: Fatigue remains a persistent and troubling symptom for adolescents and young adults (AYAs) with cancer. Physical activity (PA) is recommended as a strategy for self-management of fatigue.

Objective: The aim of the study was to examine a PA intervention to improve the self-management of fatigue in AYAs during chemotherapy.

Methods: This randomized controlled trial enrolled AYAs (18-39 years) receiving chemotherapy. Adolescents and young adults in the intervention group received a 12-week PA intervention integrated into 5 clinic visits that included education, PA tracking, and collaboration. Physical activity was measured with an accelerometer, and participants completed measures of fatigue severity, self-efficacy for PA, and self-regulation at baseline and end of study.

Results: Forty-four AYAs completed the study. At baseline, AYAs averaged 4290 (SD, 2423) steps/day and 14.4 (SD, 20.6) minutes/day of moderate- to vigorous-intensity PA; their average Patient-Reported Outcomes Measurement Information System fatigue score was 55.0 (SD, 9.2). At end of study, there were no significant differences between groups in fatigue, self-efficacy, self-regulation, or PA, but trends in the desired direction were observed for each of the variables in the intervention group.

Conclusion: During chemotherapy, AYAs had variable levels of PA and engaged in mostly light-intensity PA. Their average fatigue level was slightly worse than a national comparison group.

Implications For Practice: Tailored interventions are needed to promote PA in AYAs as a self-management strategy for fatigue. Enhancing self-efficacy and self-regulation may be important approaches to promote PA.
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http://dx.doi.org/10.1097/NCC.0000000000000834DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7744366PMC
June 2020

Qualitative Assessment of Unmet Information Management Needs of Informal Cancer Caregivers: Four Themes to Inform Oncology Practice.

JCO Clin Cancer Inform 2020 06;4:521-528

Medical College of Wisconsin, Milwaukee, WI.

Purpose: Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era.

Methods: This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes.

Results: Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care.

Conclusion: This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.
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http://dx.doi.org/10.1200/CCI.19.00159DOI Listing
June 2020

Adolescents and Young Adults with Cancer Using a Symptom Heuristics App: Provider Perceptions and Actions.

J Adolesc Young Adult Oncol 2020 10 23;9(5):579-585. Epub 2020 Apr 23.

Department of Family and Community Health, School of Nursing Virginia Commonwealth University, Richmond, Virginia, USA.

This study examined health care providers' perceptions of the usefulness and ease of use of a symptom heuristics app delivered via a tablet computer as a resource for understanding symptom experiences of adolescents and young adults (AYAs) with cancer. AYAs' app-generated symptom reports were compared with providers' documentation of AYAs' symptoms. This multisite study included responses from 86 AYAs 15-29 years of age who completed the Computerized Symptom Capture Tool (C-SCAT) before two scheduled visits for chemotherapy. After each visit, their providers completed a survey addressing their perspective of: (1) the usefulness of data provided by the C-SCAT to understand the AYAs' symptom experience, and (2) the nature of the discussion of symptoms with the AYA. An electronic health record review compared symptoms that AYAs identified by using the C-SCAT with providers' documentation of symptoms. One hundred forty-four complete surveys were returned after 162 visits. Fifty percent ( = 72) of responses reported that the C-SCAT helped identify the patient's symptoms, and 53% ( = 76) reported that it helped identify the patient's priority symptoms. Providers also reported higher patient engagement and more focused discussions regarding symptoms. They reported that use of the C-SCAT facilitated the development of symptom management plans. Priority symptoms were documented more frequently than nonpriority symptoms (54% vs. 32.7%;  < 0.01) as was a plan for managing priority symptoms (33.7% vs. 17.9%;  < 0.01). Use of the C-SCAT enhanced providers' understanding of AYAs' symptom experiences. Further research is needed to demonstrate the effectiveness of the C-SCAT as a resource to improve symptom management among AYAs with cancer.
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http://dx.doi.org/10.1089/jayao.2019.0160DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7578178PMC
October 2020

Priority Symptoms, Causes, and Self-Management Strategies Reported by AYAs With Cancer.

J Pain Symptom Manage 2019 11 16;58(5):774-783. Epub 2019 Jul 16.

Seattle Children's Hospital, Seattle, Washington, USA.

Context: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors.

Objectives: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms.

Methods: Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better?

Results: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies."

Conclusion: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management.
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http://dx.doi.org/10.1016/j.jpainsymman.2019.07.008DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6823142PMC
November 2019

Using a Heuristic App to Improve Symptom Self-Management in Adolescents and Young Adults with Cancer.

J Adolesc Young Adult Oncol 2019 04 24;8(2):131-141. Epub 2018 Oct 24.

5 Division of Hematology/Oncology, Children's Mercy Hospital , Kansas City, Missouri.

Purpose: Adolescents and young adults (AYAs) with cancer need self-management strategies to cope with multiple symptoms. Self-efficacy, self-regulation, and negotiated collaboration are key theoretical components of the self-management process and have not been fully explored with AYAs with cancer. This study examined the effects of a heuristic symptom assessment tool on AYAs' self-efficacy for symptom management, AYAs' self-regulation abilities related to their symptoms, and communication with their providers about symptoms.

Methods: AYAs (15-29 years of age) receiving chemotherapy used the Computerized Symptom Capture Assessment Tool (C-SCAT) to illustrate their symptom experience and discuss their symptoms with providers during two clinic visits. Participants completed the PROMIS Self-efficacy for Managing Symptoms Scale, a measure of satisfaction with provider communication, and a short interview about self-regulation and communication behaviors at baseline and after each provider visit.

Results: Eighty-five AYAs who used the C-SCAT showed improved self-efficacy for managing symptoms. Qualitative data suggest that the C-SCAT was useful for enhancing a number of AYAs' self-regulation abilities related to symptom management, such as awareness and recall of symptoms, how symptoms were related, and how they planned to talk about their symptoms to providers. AYAs reported C-SCAT facilitated communication with providers about symptoms and symptom management because it was a visual prompt showing priority and related symptoms.

Conclusions: Because AYAs continue to experience multiple distressing symptoms, symptom self-management remains an important area for practice and research. Use of heuristic tools, such as the C-SCAT, may help AYAs more effectively self-manage their symptoms for better health outcomes.
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http://dx.doi.org/10.1089/jayao.2018.0103DOI Listing
April 2019

Sedentary behavior and physical activity of young adult university students.

Res Nurs Health 2018 02 9;41(1):30-38. Epub 2018 Jan 9.

College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, Wisconsin.

Movement and non-movement behaviors include sleep, sedentary behavior (SB) and physical activity (PA). While young adults are generally perceived as healthy, the level and relationship of SB and PA in college-age students has not been greatly explored. The purpose of this study was to objectively measure the levels of SB and PA in 18-20 year-old university students, record their self-reported extracurricular activities, and explore the relationship of all these with body mass index (BMI) and waist circumference (WC). Male (n = 48) and female (n = 46) students participated in this cross-sectional study. Hierarchical multiple regression analyses were used to examine time spent in SB, moderate to vigorous physical activity (MVPA), number of self-reported sedentary extracurricular activities, and their relation to the dependent variables of BMI and WC. In correlation analyses, SB (p < .001) and MVPA (p = .017) both were negatively associated with BMI, and "other" race or ethnicity (African American, Hispanic, mixed; p = .013) and number of self-reported sedentary extracurricular activities (p = .006) were positively associated with BMI. In the WC regression model, SB (p = .018) was negatively associated and number of self-reported sedentary extracurricular activities (p = .006) was positively associated with WC. University students may be both highly active and highly sedentary. Future researchers should consider targeting interventions to reduce SB in addition to improving PA.
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http://dx.doi.org/10.1002/nur.21845DOI Listing
February 2018

Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy.

Support Care Cancer 2017 12 17;25(12):3793-3806. Epub 2017 Jul 17.

College of Nursing, Virginia Commonwealth University, Richmond, VA, USA.

Purpose: Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool.

Methods: The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms.

Results: Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take … or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy.

Conclusion: AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies.
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http://dx.doi.org/10.1007/s00520-017-3811-8DOI Listing
December 2017

What is the Role of the Oncology Nurse in Fertility Preservation Counseling and Education for Young Patients?

J Cancer Educ 2018 12;33(6):1301-1305

University of Virginia Emily Couric Cancer Center, Charlottesville, VA, USA.

Oncology nurses are uniquely positioned to offer fertility preservation counseling and education for cancer patients of reproductive age, yet there is a dearth of research that focuses on current practice and perceptions of nursing role. In 2013, the American Society of Clinical Oncology extended the duties of fertility preservation counseling among patients of reproductive age undergoing cancer treatment to include registered nurses and other allied health professionals as active partners in the counseling and education process. This study used a cross-sectional descriptive survey to assess current practices, role perceptions, and barriers to fertility preservation counseling among registered nurses working in an academic care setting with outpatient and inpatient services. There were significant gaps in current practices and perceptions of roles regarding fertility preservation counseling. Many nurses expressed the perception that fertility preservation counseling was important, but it was outside the scope of their practice to perform this education. This preliminary work defined need for an interdisciplinary fertility preservation team, communication surrounding educational practice norms, and designated oncofertility navigator.
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http://dx.doi.org/10.1007/s13187-017-1247-yDOI Listing
December 2018

Measuring the impact of clinically relevant interprofessional education on undergraduate medical and nursing student competencies: A longitudinal mixed methods approach.

J Interprof Care 2016 Jul 7;30(4):448-57. Epub 2016 Jun 7.

a School of Medicine, University of Virginia , Charlottesville , Virginia , USA.

Interprofessional education (IPE) to improve collaborative competencies is essential for delivering high-quality care. Yet creating clinically relevant IPE and linking it to improvements in behaviours remains challenging, and few objective measurement instruments are available. We developed a process for creating IPE and objective observational tools through collaborative care best practice models (CCBPMs). These models describe the professional and interprofessional behaviours needed for specific patient populations, illnesses, and care settings. Four IPE workshops based on CCBPMs were implemented for all medical and nursing students during their clinical/clerkships years. Students in Cohort 1 completed two IPE workshops: rapid response and end-of-life. For Cohort 2, students completed four IPE workshops, adding chronic paediatric illness and transitions for the cognitively impaired. Valid and reliable collaborative behaviors observational assessment tools (CBOATs) derived from CCBPMs for the rapid response and end-of-life workshops were developed. CBOATs were used in the longitudinal assessment of student learning for both cohorts during two Interprofessional Teamwork Objective Structured Clinical Examinations (ITOSCEs) conducted before and after the students completed the IPE workshops. Over a 2-year period, 457 students completed the IPE simulations and ITOSCEs. Both medical and nursing students demonstrated significant improvement in CBOAT scores. Comparisons between the cohorts showed that participation in four versus two IPE experiences did not significantly improve most CBOAT scores. We conclude that undergraduate IPE simulation experiences based on CCBPMs result in measurable improvements in learner behaviours necessary for effective collaborative and team-based practice in specific care areas.
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http://dx.doi.org/10.3109/13561820.2016.1162139DOI Listing
July 2016

Effectiveness of an interprofessional workshop on pain management for medical and nursing students.

J Interprof Care 2016 Jul 6;30(4):466-74. Epub 2016 Jun 6.

b Schools of Medicine and Nursing , University of Virginia , Charlottesville , Virginia , USA.

Interprofessional (IP) care is critical for effective pain management, but evidence is lacking about the best way to teach pain management skills to medical and nursing students using IP strategies. In 2013 and 2014, 307 medical and 169 nursing students participated in an IP case-based pain management workshop. The aims of this study were to determine (1) if students who participate in IP case-based learning groups will have improved pain management skills compared to students who participate in uniprofessional case-based learning groups, and (2) if students mentored by faculty with IP training will have improved pain management skills compared to students who are not mentored by IP-trained faculty. Student learning was assessed and compared using scored checklists for each group's pain management plans. Findings show that IP mentorship and IP group participation improved medical students' pain management skills but did not have the same effect on nursing student performance. Continued work is needed to develop, refine, and integrate innovative and tailored IP strategies into the curricula of medical and nursing schools to advance the pain management competencies of students before they enter clinical practice.
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http://dx.doi.org/10.3109/13561820.2016.1159185DOI Listing
July 2016

Symptoms and Symptom Clusters Identified by Adolescents and Young Adults With Cancer Using a Symptom Heuristics App.

Res Nurs Health 2015 Dec 12;38(6):436-48. Epub 2015 Oct 12.

Assistant Professor College of Nursing, University of Utah, Clinical Nurse Specialist, Primary Children's Hospital, Salt Lake City, UT.

Adolescents and young adults (AYAs) with cancer experience multiple distressing symptoms during treatment. Because the typical approach to symptom assessment does not easily reflect the symptom experience of individuals, alternative approaches to enhancing communication between the patient and provider are needed. We developed an iPad-based application that uses a heuristic approach to explore AYAs' cancer symptom experiences. In this mixed-methods descriptive study, 72 AYAs (13-29 years old) with cancer receiving myelosuppressive chemotherapy used the Computerized Symptom Capture Tool (C-SCAT) to create images of the symptoms and symptom clusters they experienced from a list of 30 symptoms. They answered open-ended questions within the C-SCAT about the causes of their symptoms and symptom clusters. The images generated through the C-SCAT and accompanying free-text data were analyzed using descriptive, content, and visual analyses. Most participants (n = 70) reported multiple symptoms (M = 8.14). The most frequently reported symptoms were nausea (65.3%), feeling drowsy (55.6%), lack of appetite (55.6%), and lack of energy (55.6%). Forty-six grouped their symptoms into one or more clusters. The most common symptom cluster was nausea/eating problems/appetite problems. Nausea was most frequently named as the priority symptom in a cluster and as a cause of other symptoms. Although common threads were present in the symptoms experienced by AYAs, the graphic images revealed unique perspectives and a range of complexity of symptom relationships, clusters, and causes. Results highlight the need for a tailored approach to symptom management based on how the AYA with cancer perceives his or her symptom experience.
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http://dx.doi.org/10.1002/nur.21697DOI Listing
December 2015

Validation of Accelerometer Thresholds and Inclinometry for Measurement of Sedentary Behavior in Young Adult University Students.

Res Nurs Health 2015 Dec 7;38(6):492-9. Epub 2015 Oct 7.

Assistant Professor, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI.

Sedentary behavior (SB) is a major contributor to obesity and significant morbidity and mortality in adolescence and adulthood, yet measurement of SB is still evolving. The purpose of this study was to assess the degree of construct validity of the inclinometer function and single-axis and vector magnitude accelerometry metrics of the ActiGraph GT3X+ in objectively measuring SB and physical activity in 28 young adult university students who performed nine semi-structured activities, each for five minutes: lying, sitting, reading, seated video gaming, video watching, seated conversation, standing, stationary biking, and treadmill walking. Inclinometry and four output metrics from the ActiGraph were analyzed in comparison to direct observation by a researcher recorded each minute. For overall accuracy in measuring both SB and physical activity, all four accelerometer metrics (94.7-97.8%) outperformed the inclinometer function (70.9%). Vector magnitude accelerometry with a threshold of 150 counts per minute as the cut point for sedentary behavior was superior to other methods. While accelerometry was more accurate overall at detecting the behaviors tested, inclinometry had some advantages over accelerometry methods at detecting walking, biking, and standing. The findings support use of accelerometry as a valid objective measure of body movement, while use of inclinometry as a sole measure is not recommended. Additional research would be beneficial to improve the calibration of the inclinometer and explore ways of combining this with accelerometer data for objectively measuring SB and physical activity.
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http://dx.doi.org/10.1002/nur.21694DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363364PMC
December 2015

Measures and Methods for Symptom and Symptom Cluster Assessment in Adolescents and Young Adults with Cancer.

Semin Oncol Nurs 2015 Aug 7;31(3):206-15. Epub 2015 May 7.

Objectives: To provide an overview of resources for measuring symptoms and symptom clusters in adolescents and young adults (AYAs) with cancer and to examine methodological strategies for evaluating symptom clusters.

Data Sources: Published research articles and clinical experience.

Conclusion: Limited research has addressed symptoms and symptom clusters in AYAs with cancer. Reliable, valid, and developmentally appropriate measures are needed to advance this area of research.

Implications For Nursing Practice: Use of mobile technology and mixed qualitative and quantitative methods to understand AYAs' experience of symptoms and symptom clusters could enhance symptom awareness and the evidence base for practice.
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http://dx.doi.org/10.1016/j.soncn.2015.05.002DOI Listing
August 2015

An interprofessional workshop for students to improve communication and collaboration skills in end-of-life care.

Am J Hosp Palliat Care 2015 Dec 29;32(8):876-80. Epub 2014 Aug 29.

University of Virginia School of Medicine, Department of Public Health Sciences, Charlottesville, VA, USA.

Interprofessional care is critical for patients at the end of life (EOL), but programs to teach communication skills to medical and nursing students are rare. The aims of this study were to determine whether an interprofessional workshop improves (1) student attitudes toward teamwork and (2) self-efficacy for communicating in difficult situations. Nursing and medical students attended a workshop with collaborative role play of an EOL conversation. Before the workshop, students showed different attitudes toward teamwork and collaboration and varying levels of confidence about communication skills. After the workshop, both groups reported more positive attitudes toward teamwork but a mixed picture of confidence in communication. Experiential interprofessional education workshops enhance perceptions about the benefits of teamwork, but further teaching and evaluation methods are needed to maximize the effectiveness.
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http://dx.doi.org/10.1177/1049909114549954DOI Listing
December 2015

Feasibility and acceptability of an iPad application to explore symptom clusters in adolescents and young adults with cancer.

Pediatr Blood Cancer 2014 Nov 25;61(11):1996-2003. Epub 2014 Jul 25.

Seattle Children's Hospital & University of Washington School of Nursing, Seattle, Washington.

Background: The aim of this study was to evaluate the feasibility and acceptability of a computer-based symptom cluster heuristics tool designed to explore symptom clusters experienced by adolescents and young adults (AYAs) with cancer. The Computerized Symptom Capture Tool (C-SCAT) is a newly developed iPad application, which combines graphical images and free text responses in an innovative heuristics approach to explore symptoms and symptom clusters.

Procedure: Seventy-two AYAs (13-29 years of age) with cancer at five institutions across the US completed the C-SCAT 24-96 hours after the initial chemotherapy dose in a chemotherapy cycle.

Results: All participants completed the C-SCAT successfully in a mean of 25 minutes, with 74% reporting that the final image was an accurate or very accurate representation of their symptom experience. Little clarification/coaching was necessary while completing the C-SCAT. Few technical problems were encountered. Participants judged the C-SCAT questions to be clear and endorsed ease of following instructions, typing, and drawing.

Conclusions: The C-SCAT demonstrated feasibility and acceptability. With refinement based on study results, the C-SCAT has potential to: (a) empower AYAs to communicate their symptom experience and partner with providers in their care; (b) improve symptom management and ameliorate distress; and (c) translate to use with other highly symptomatic populations.
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http://dx.doi.org/10.1002/pbc.25152DOI Listing
November 2014

End-of-life care characteristics for young adults with cancer who die in the hospital.

J Palliat Med 2014 Dec;17(12):1359-64

1 School of Nursing, University of Virginia , Charlottesville, Virginia.

Background: Evidence suggests nonelderly adults with cancer are likely to receive aggressive treatment in their last month of life and less likely to receive hospice and/or palliative services. Young adults with cancer (18-39 years) are a unique population, and little is known about the characteristics of their end-of-life care trajectories when they die in the hospital.

Objective: The purpose of this descriptive pilot study was to explore the characteristics of death among young adults with cancer who died in a tertiary academic hospital in order to elucidate their end-of-life trajectories.

Methods: A retrospective chart review was conducted among hospitalized young adults with a primary cancer diagnosis who died in the hospital within a 10-year period. Study variables were abstracted for quantification and medical record notes were reviewed for validation.

Results: A review of 61 patient records indicate that young adults commonly received cancer treatment within weeks of death and that do-not-resuscitate orders were frequently written only when death appeared imminent. Palliative care teams were frequently consulted for management of physical symptoms but often within days of death and most commonly on the day of death.

Conclusions: Findings suggest palliative care was initiated late in the care trajectory for young adults with cancer who died in the hospital. This study highlights the need for further inquiry into end-of-life care for young adults with cancer so that interventions can be developed to meet the physical, emotional, social, and spiritual needs of this unique group of patients, their families, and friends.
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http://dx.doi.org/10.1089/jpm.2013.0661DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4268553PMC
December 2014

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep-Wake Disturbances, and Depression in Young Adults During Chemotherapy.

J Adolesc Young Adult Oncol 2014 Mar;3(1):37-41

University of Virginia School of Nursing , Charlottesville, Virginia.

Little is known about the physical activity (PA) of young adults (YAs) during cancer therapy. In this feasibility study, 14 YAs (20-34 years old) completed a six-minute walk test, recorded their steps per day for one week, and answered weekly self-reports about physical activity, fatigue, sleep-wake disturbances, and depression during one cycle of chemotherapy. Findings suggest YAs are willing to complete a PA study during chemotherapy and have variable sleep and activity schedules. Their symptoms varied in severity, with highest scores for fatigue. Studies to improve PA in YAs during chemotherapy are warranted to manage short- and long-term treatment effects.
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http://dx.doi.org/10.1089/jayao.2013.0028DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3955977PMC
March 2014

Development and validation of a collaborative behaviors objective assessment tool for end-of-life communication.

J Palliat Med 2014 Jan 13;17(1):68-74. Epub 2013 Dec 13.

1 University of Virginia School of Medicine , Charlottesville, Virginia.

Context: Helping families make end-of-life decisions requires close collaboration between physicians and nurses. However, medical and nursing students have little formal training in how to collaborate in this task, and few instruments are available to measure collaborative behaviors.

Objectives: The objective of this project was to develop and validate observational assessment tools to measure specific interprofessional competencies in medical and nursing students related to end-of-life discussions.

Design: A literature search for evidence-based guidelines and competencies and focus groups with an expert panel of nurses and physicians were used to outline best collaborative practice behaviors for nurses and physicians in an end-of-life decision making simulation. The panel used these practice-behavior checklists to rate videotaped student scenarios and then refined the checklists for validity and clarity until the tools had acceptable inter-rater reliability.

Setting: The setting was a workshop teaching end-of-life communication to third-year nursing and medical students.

Measurements: Inter-rater reliability was measured using percent agreement and kappa; internal consistency was measured using Cronbach's alpha.

Results: Collaborative behaviors objective assessment tools (CBOATs) for nursing and medical students were developed. For the medical CBOAT we found 85% agreement between raters, with an overall kappa of 0.744 and Cronbach's alpha of 0.806. For the nursing CBOAT there was 81% agreement, with a kappa of 0.686 and Cronbach's alpha of 0.845.

Conclusions: Development of an end-of-life CBOAT clarified the important collaborative behaviors needed by physician and nurse. The resulting instruments provide a helpful guide for teaching interprofessional sessions related to the end of life and measuring student outcomes using an objective strategy.
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http://dx.doi.org/10.1089/jpm.2013.0262DOI Listing
January 2014

Self-care strategies to relieve fatigue in patients receiving radiation therapy.

Clin J Oncol Nurs 2013 Jun;17(3):319-24

School of Nursing, University of Virginia in Charlottesville, USA.

Despite advances in symptom management, patients commonly experience fatigue during radiation therapy (RT). Minimal research has been conducted to determine how evidence-based recommendations are put into clinical practice and used by patients to manage fatigue. The aims of the current study were to identify the self-care strategies used by patients receiving RT, explore the effectiveness of those strategies, and identify how patients learned about fatigue management. Participants reported using multiple recommended interventions to relieve fatigue. The majority of participants reported they primarily rested or slept to improve fatigue. They also reported decreasing their activity level, exercising, using stimulants and complementary therapies, and eating and drinking nutritious items. More than half of the participants reported some relief of fatigue regardless of the intervention used. The majority of participants reported that they learned how to manage their fatigue mostly through experience and trial and error. Nurses need to explore the complex dynamics of each patient's fatigue and tailor multiple evidence-based interventions to maximize each patient's functional status and quality of life. When assessing and teaching about fatigue, nurses need to explore patients' daytime activity level and daytime sleep to be sure that excessive inactivity is not contributing to fatigue.
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http://dx.doi.org/10.1188/13.CJON.319-324DOI Listing
June 2013

Using an iPad in research with children and adolescents.

J Spec Pediatr Nurs 2013 Apr;18(2):158-4

University of Utah, College of Nursing and Clinical Nurse Specialist Primary Children’s Medical Center Salt Lake City, UT, USA.

The features of the iPad and its widespread adoption support its use as a tool in research involving children and adolescents. Although use in our current research has been limited to a hospital-based setting,the iPad’s design and features support its potential use in home- and community-based settings as well.In addition to collecting data through web-based platforms and applications, the iPad may facilitate telehealth-based interventions through the use of its built-in camera and Face Time applications.In our experience with children and adolescents,the iPad has been a useful tool to support multiple types of data collection as well as support other aspects of the research process. The use of iPad application technology certainly opens up opportunities for new and novel ways to collect meaningful data and support research with individuals across the lifespan.
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http://dx.doi.org/10.1111/jspn.12023DOI Listing
April 2013

Symptoms and symptom clusters in adolescents receiving cancer treatment: a review of the literature.

Int J Nurs Stud 2013 Jun 29;50(6):847-69. Epub 2012 Nov 29.

University of Virginia School of Nursing, Charlottesville, VA, United States.

Objectives: The purpose of this literature review is to document what is known about the most common symptoms and symptom clusters in adolescents receiving cancer treatment in order to advance the science of symptom management for this unique group of patients.

Design: This review identified primary research reports focused on cancer-related symptoms in adolescents using methodology that included objective measurement of the symptom(s) or self-report from the adolescents.

Data Sources: We searched the literature using Medline, PubMed, and CINAHL from 2000 to 2011.

Review Methods: The first step of the review was to synthesize evidence to identify the most common symptoms experienced by adolescents during the cancer treatment period. The second step located findings from additional research about these specific symptoms individually or as clusters.

Results: From 12 reports, we identified 6 common symptoms in adolescents during the treatment period: fatigue, sleep-wake disturbances, nausea/eating problems, pain, mood disturbances, and appearance changes. Findings from 51 studies provided a foundation of evidence about symptom trajectories, contributing factors, and associations between symptoms.

Conclusions: This review of the literature identified a relatively small body of research related to symptoms in adolescents during the cancer treatment period. Most of the studies were of low quality evidence and described individual symptoms rather than associations or clusters. A few longitudinal studies described symptoms during a cycle of chemotherapy and across months of chemotherapy treatment. With the exception of nausea, no studies tested any interventions to relieve these common symptoms in adolescents. To ensure that adolescents complete the challenging period of cancer treatment and emerge capable of achieving the developmental milestones of young adulthood, important work remains to be done in this field of symptom management.
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http://dx.doi.org/10.1016/j.ijnurstu.2012.10.011DOI Listing
June 2013

Blogging through cancer: young women's persistent problems shared online.

Cancer Nurs 2013 Mar-Apr;36(2):163-72

School of Nursing, University of Virginia, Charlottesville, VA 22908, USA.

Background: Many young women have turned to illness blogs to describe their lived experience with cancer. Blogs represent an untapped source of knowledge for researchers and clinicians.

Objective: The purpose of this qualitative, exploratory study was to describe the life disruptions caused by cancer among young women, as well as to understand the facilitators and barriers in accessing healthcare services during and after active treatment.

Methods: Sixteen Internet illness blogs were analyzed among women, aged between 20 and 39 years, diagnosed with cancer. These blogs were analyzed based on phenomenological qualitative methods and thematic analysis.

Results: There were 4 dimensions of persistent problems that were articulated in the narratives of the young women without any relief. They included pain and fatigue, insurance and financial barriers, concerns related to fertility, and symptoms of posttraumatic stress and anxiety.

Conclusion: The young women's narratives capture fear, uncertainty, anger, and the debilitating nature of these persistent issues. Many of the women expressed their lingering physical, psychosocial, and emotional problems.

Implications For Practice: Online illness narratives are a naturalistic form of inquiry that allows nurses to understand the experience of the patient through their own words and accounts. This study provides a foundation for nursing-based interventions that transcend traditional clinic experiences.
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http://dx.doi.org/10.1097/NCC.0b013e31824eb879DOI Listing
January 2014

A program design for full integration and assessment of clinically relevant interprofessional education into the clinical/clerkship year for nursing and medical students.

J Interprof Care 2012 May 9;26(3):242-4. Epub 2012 Feb 9.

School of Nursing, University of Virginia, University of Virginia, Charlottesville, VA, USA.

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http://dx.doi.org/10.3109/13561820.2011.653610DOI Listing
May 2012

Collaborative care best practice models: a new educational paradigm for developing interprofessional educational (IPE) experiences.

J Interprof Care 2012 Mar 10;26(2):153-5. Epub 2012 Jan 10.

School of Medicine, University of Virginia, Charlottesville, VA, USA.

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http://dx.doi.org/10.3109/13561820.2011.645958DOI Listing
March 2012

Fatigue, sleep-wake disturbances, and quality of life in adolescents receiving chemotherapy.

J Pediatr Hematol Oncol 2011 Jan;33(1):e17-25

University of Virginia, Charlottesville, VA, USA.

Background: Adolescents with cancer experience distressing physical and psychosocial symptoms, especially during treatment. Fatigue and sleep disturbances commonly affect adolescents' quality of life, but little is known about how adolescents experience these symptoms during an early month of chemotherapy. This study measured fatigue, sleep disturbances, and quality of life in 20 adolescents over 1 month while they were receiving chemotherapy.

Methods: Multidimensional fatigue and quality of life were measured weekly with modules from the PedsQL Measurement Model, and sleep disturbances were measured with the General Sleep Disturbance Scale.

Results: Adolescents experienced increased severity of fatigue and sleep disturbances during the week after treatment. Common sleep-wake problems included daytime sleepiness, decreased alertness, and poor sleep quality. Fatigue and sleep-wake disturbances were related symptoms, and both symptoms were associated with various domains of quality of life.

Conclusions: Fatigue and sleep-wake disturbances are significant problems for adolescents receiving chemotherapy and negatively affect the quality of life. Clinicians should routinely screen adolescent patients for fatigue and sleep disturbances and intervene to minimize their impact using pharmacologic and nonpharmacologic strategies.
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http://dx.doi.org/10.1097/MPH.0b013e3181f46a46DOI Listing
January 2011

Patterns of fatigue in adolescents receiving chemotherapy.

Oncol Nurs Forum 2010 Jul;37(4):444-55

School of Nursing, University of Virginia, Charlottesville, USA.

Purpose/objectives: To describe patterns of fatigue in adolescents and the impact of fatigue during one month of chemotherapy, to explore variables that affect fatigue, and to explore the feasibility of collecting daily self-report data in this population.

Design: Longitudinal, descriptive.

Setting: Two pediatric oncology centers in central Virginia.

Sample: 20 adolescents with a variety of cancer diagnoses receiving chemotherapy.

Methods: Adolescents described daily fatigue for one month using rating scales and qualitative diaries.

Main Research Variables: Fatigue severity.

Findings: Adolescents commonly reported a peak in fatigue in the days immediately following chemotherapy administration. The most common pattern for adolescents who received chemotherapy on a schedule every three to four weeks was a "declining rollercoaster" pattern, with fatigue severity alternating on a daily basis but gradually declining until chemotherapy was scheduled again. Adolescents who received chemotherapy weekly showed more frequent peaks and troughs (the "yo-yo" pattern) that did not diminish in severity over the weeks of the study. Adolescents associated fatigue with other symptoms, particularly sleep-wake disturbances, pain, and nausea, and frequently reported that fatigue interfered with daily activities.

Conclusions: Fatigue commonly bothers adolescents receiving chemotherapy, particularly in the days following chemotherapy administration and when other symptoms are present. Although fatigue interfered with the adolescents' abilities to maintain their usual lifestyles, many still participated in the typical activities of adolescence.

Implications For Nursing: Fatigue is a complex and dynamic symptom. Oncology clinicians and researchers should frequently assess fatigue in adolescents receiving chemotherapy and apply timely and tailored interventions to match the factors that contribute to fatigue and influence fatigue severity. Management of fatigue during treatment will help adolescents stay involved in age-related activities and meet developmental milestones.
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http://dx.doi.org/10.1188/10.ONF.444-455DOI Listing
July 2010

Eating experiences of children and adolescents with chemotherapy-related nausea and mucositis.

J Pediatr Oncol Nurs 2010 Jul-Aug;27(4):209-16

Massachusetts General Hospital, Boston, USA.

Despite many advances in symptom management, children and adolescents with cancer still have trouble maintaining adequate oral intake during routine chemotherapy treatment. The purpose of this qualitative study was to explore the eating experiences of children and adolescents receiving chemotherapy when they had problems with nausea and mucositis. Eight children and adolescents and their caregivers were interviewed to describe how and what the children and adolescents ate when they were nauseated and/or had a sore mouth. Findings reveal that these children and adolescents all experienced nausea and frequently preferred not to eat during these periods. Eating problems related to mucositis also limited oral intake in this sample. These children and adolescents and their caregivers tried a variety of foods and strategies to maintain intake, including those recommended by health care providers. Prevention and management of nausea remains a challenge for children and adolescents receiving chemotherapy. Health care providers need to offer detailed eating suggestions throughout therapy so that these patients can maintain adequate nutrition and weight for optimal treatment tolerance as well as normal growth and development. Continued research is needed to test the effectiveness of interventions focused on maintaining oral intake during cancer treatment.
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http://dx.doi.org/10.1177/1043454209360779DOI Listing
September 2010

Approaches to measure sleep-wake disturbances in adolescents with cancer.

J Pediatr Nurs 2009 Aug 1;24(4):255-69. Epub 2008 Oct 1.

University of Utah College of Nursing, Salt Lake City, UT, USA.

Sleep-wake disturbances commonly occur in healthy adolescents. Although diminished sleep and sleepiness seem normal for healthy adolescents, adolescents with chronic illnesses face additional disruption in the quantity and quality of their sleep as a result of the disease process, ongoing treatment, and associated symptoms. Little is known about how sleep in adolescents is affected by cancer, cancer treatment, and concurrent symptoms or about the consequences of sleep disruption for these patients. Although there is limited evidence to guide sleep measurement in adolescents with cancer, researchers may learn effective strategies from sleep studies completed with adolescents with other conditions. This systematic review examines how researchers have measured sleep using actigraphy, diary, and/or self-report questionnaires in diverse samples of healthy and ill adolescents. Psychometric properties are reported for nine self-report sleep questionnaires that were used in studies with mostly healthy adolescent samples. Nineteen studies provide evidence that actigraphy can be successfully and reliably used as an effective objective method to measure sleep in adolescents, including those with chronic illness. Daily sleep diaries were used less frequently to collect data from adolescents. The suitability of these techniques for the study of cancer-related sleep-wake disturbances in adolescents as well as strategies to enhance the reliability, validity, and feasibility of these measures will be discussed. Future sleep research in adolescents affected by cancer can be strengthened by the consistent use of sleep terminology, measurement of key sleep parameters, and efforts to develop and use psychometrically sound instruments. Oncology clinicians should be ready to add emerging evidence from sleep research to their care of adolescents with cancer.
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http://dx.doi.org/10.1016/j.pedn.2008.03.004DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752640PMC
August 2009

Substance use risk behaviors and decision-making skills among cancer-surviving adolescents.

J Pediatr Oncol Nurs 2007 Sep-Oct;24(5):264-73

University of Virginia School of Nursing, Charlottesville, USA.

The aims of this study were to compare decision making and substance use risk behaviors of a cohort of cancer-surviving adolescents to those of 2 earlier cohorts as well as adolescents in the US general population and to determine the relationship of decision making to substance use risk behaviors. This correlational study used a semistructured interview at the time of the annual clinic visit to obtain data. Teen cancer survivors (N = 76), ages 14-19 years, were recruited from 5 clinics within the United States. Adherence to quality decision-making skills reported by different cancer-surviving adolescent cohorts appears to remain the same over time. However, reported substance use risk behaviors by these teen survivor cohorts have decreased over time. The prevalence rates for lifetime use for the 2004 cohort of teen cancer survivors were 25%, 49%, and 16%, for cigarettes, alcohol, and marijuana use, respectively. These rates are somewhat lower than those in the US general population; yet, they are high given the health vulnerability of cancer-surviving adolescents. Poor-quality decision making was significantly associated with higher levels of substance use risk behaviors for these teen cancer survivors. In conjunction with the statistics related to higher health risks in this vulnerable group of teens, these findings support continued efforts in developing interventions for risk behavior counseling.
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http://dx.doi.org/10.1177/1043454207304910DOI Listing
November 2007