Development and psychometric evaluation of the Symptom Self-Management Behaviors Tool for adolescents/young adults with cancer.

OBJECTIVES: Adolescents and Young Adults (AYAs) with cancer experience symptoms related to disease and treatment. To manage these symptoms, they need to develop self-management behaviors, yet no tool exists to assess these behaviors. The Symptom Self-Management Behaviors Tool (SSMBT) was developed to meet this need. METHODS: The study consisted of 2 phases. Phase 1 evaluated content validity, and Phase 2 evaluated reliability and validity. The SSMBT initially contained 14 items with 2 dimensions: (1) behaviors used to Manage Symptoms and (2) behaviors used to communicate with providers regarding symptoms. Four oncology professionals and 5 AYAs with cancer assessed the content validity. Evaluation of reliability and validity involved 61 AYAs with cancer. Reliability was evaluated using Cronbach's alpha. Construct validity was assessed with factor analysis. Discriminant validity was assessed using associations with symptom severity and distress. RESULTS: Content validity evaluation supported the importance of the items. Factor analysis supported a two-factor structure: Manage Symptoms (8 items) and Communicate with Healthcare Providers (4 items) subscales. Internal consistency reliability for the total SSMBT was acceptable with Cronbach's alpha = 0.74. Cronbach's alpha value for the Manage Symptoms subscale was α = 0.69 and for the Communicate with Healthcare Providers subscale was α = 0.78. The SSMBT total and the Manage Symptoms subscale scores were moderately correlated with symptom severity (r = 0.35, p = 0.014; r = 0.44, p = 0.002, respectively), partially supporting discriminant validity. SIGNIFICANCE OF RESULTS: Systematic assessment of behaviors AYAs use is critical for clinical practice and evaluate interventions to improve self-management. The SSMBT demonstrates initial reliability and validity but requires further evaluation for clinical interpretation and future use.

Directives Limiting Care in the Perianesthesia Setting: A Foucauldian Case Study Report.

PURPOSE: The purpose of this inquiry is to explore how adult patients with limiting directives, their families, and clinicians make decisions about resuscitative status during anesthesia. Although current practice guidelines recommend mandatory reconsideration of do not resuscitate and other limiting directives before anesthesia, the automatic suspension of directives limiting care continues in the adult perianesthesia setting. How patients and clinicians talk about these limiting directives is underexplored in the literature. DESIGN: This qualitative inquiry used the Foucauldian Poststructural Case Study Design. METHODS: Data were collected through interviews and observation of patients with existing advance directives who underwent surgery, family members, and perianesthesia clinicians who participated in their care. Contextualizing analysis, a qualitative methodology that fits well with Foucauldian Poststructural Case Study Design, was used to rigorously examine the data. FINDINGS: Twenty-seven participants completed the observation and interview components of the study. Observation data were collected from an additional 18 participants. Four authoritative discourses that constructed choices available to patients and clinicians were identified. The "We'll just suspend" discourse permeates perianesthesia culture and produces a will to suspend the limiting directive among clinicians. Discourses about lack of time, a desire not to talk about advance directives unless it is essential to care, and confusion about who is responsible for addressing the limiting directive were also identified in the case. In addition, patients had difficulty translating advance directive choices into the perianesthesia context, and this difficulty may be misunderstood by clinicians as agreement with the plan of care. Finally, power networks may sequester knowledge about patients' choices, leading to tension among clinicians and creating barriers to honoring patients' advance directive choices. CONCLUSIONS: Results suggest that even where policies of mandatory advance directive reconsideration exist, patients may experience environments that constrain their choices and decision-making agency.

An Integrative Review of the Use of the Individual and Family Self-Management Theory in Research.

The extent of the application of the Individual and Family Self-Management Theory (IFSMT) in research has yet to be determined. The purpose of this analysis was to review the use of the IFSMT in published research and evaluate posited constructs and relationships. Dimensions and categories of the IFSMT and the interrelationships were generally supported in the 77 articles reviewed. A majority focused on self-management of chronic conditions in the adult population. More research on the strength, direction, and interaction of relationships is needed. Defining and exploring social constructs, including race, ethnicity, and gender, should be prioritized in future IFSMT research.

Medication self-management behaviors of adolescents and young adults with cancer.

PURPOSE: Adolescents and young adults (AYAs) with cancer are challenged to manage complex medication regimens during treatment. The aims of the study are to (1) describe the medication self-management behaviors of AYAs with cancer and (2) examine the barriers and facilitators to AYAs' optimal use of medications, including their self-efficacy to manage medications. METHODS: This cross-sectional study enrolled 30 AYAs (18-29 years) with cancer who were receiving chemotherapy. Participants electronically completed a demographic form, a health literacy screen, and the PROMIS Self-efficacy for Medication Management instrument. They completed a semi-structured interview to answer questions about their medication self-management behaviors. RESULTS: Participants (53% female, mean age = 21.9 y) had a variety of AYA cancer diagnoses. Over half (63%) had limited health literacy. Most AYAs had accurate knowledge about their medications and average self-efficacy for managing medications. These AYAs were managing an average of 6 scheduled and 3 unscheduled medications. Oral chemotherapy was prescribed for 13 AYAs; other medications were for prevention of complications and symptom management. Many AYAs relied on a parent for obtaining and paying for medications, used multiple reminders to take medications, and used a variety of strategies to store and organize medications. CONCLUSION: AYAs with cancer were knowledgeable and confident about managing complex medication regimens but needed support and reminders. Providers should review medication-taking strategies with AYAs and ensure a support person is available.

Interactive Health Literacy and Symptom Self-management in Patients With Lung Cancer: A Critical Realist Analysis.

BACKGROUND: Patients with lung cancer experience multiple symptoms requiring self-management. Little is known about how self-management is influenced by interactive health literacy, defined as communicating with healthcare providers to obtain and process information. OBJECTIVE: This study explored how interactive health literacy relates to symptom self-management among patients with lung cancer. A second aim explored how interactive health literacy might be integrated into the Individual and Family Self-management Theory. METHODS: This study used a cross-sectional mixed-methods design. Quantitative data included demographics, the All Aspects of Health Literacy Scale, and the Memorial Symptom Assessment-Short Form. Qualitative data were collected using semistructured interviews. Data analysis followed a critical realist model. RESULTS: Twelve adults who recently received treatment for lung cancer reported an average of 14 symptoms that caused moderate distress. Average interactive health literacy of the sample was in the moderate range. Participants' experiences of self-management differed based on their interactive health literacy. A generative mechanism proposes that those with higher interactive health literacy who accessed online information used this information as a basis for engaging with providers regarding potential symptom self-management strategies. CONCLUSIONS: Interactive health literacy skills may play a role in patients' ability and confidence in symptom self-management through interactions with oncology providers. Further research should clarify the relationship between interactive health literacy, self-efficacy, and collaboration with oncology providers. IMPLICATIONS FOR PRACTICE: The patient-provider relationship is a key factor influencing how patients obtain and process symptom self-management information. Oncology providers should implement patient-centered strategies to engage patients in symptom self-management.

A Scoping Review of the Experiences of Adolescents and Young Adults in the ICU, Their Family Members, and Their Health Care Team.

Adolescents and young adults (AYAs) may be cared for in a pediatric or adult ICU. Specific needs of AYAs differ from those of populations typically found in either ICU. This review identifies research focused on experiences of AYAs in ICUs, their family members, and the health care professionals who care for them, revealing limited research about AYAs in ICUs: 10 articles met inclusion criteria and findings revealed that AYAs want to be treated as individuals and need health care professionals to partner with them. Further research is needed to inform developmentally appropriate care and improve serious illness communication.

Symptom Profiles of Adolescents and Young Adults in Active Cancer Treatment by Diagnostic Groups.

BACKGROUND: The symptom experience of adolescents and young adults (AYAs) with cancer can differ based on the cancer and its treatments. A dearth of information exists on how symptoms differ by individual factors such as age and gender. OBJECTIVES: The objectives were to describe symptoms in AYAs across 5 cancer diagnostic groups by the individual factors of age group, sex, race/ethnicity, and time since diagnosis; and then to describe symptoms based on these individual factors within diagnostic groups. METHODS: This was a secondary analysis of baseline data pooled from 2 multisite studies on symptoms in AYAs with acute lymphoblastic leukemia, brain cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma. Symptoms were assessed using the Computerized Symptom Capture Tool. RESULTS: Data from 118 AYAs with cancer, aged 13 to 29 years, were analyzed. Eight of the most commonly reported symptoms were reported in at least 4 diagnostic groups. Across diagnostic groups, symptoms varied little based on individual factors. Within groups, certain symptoms differed in frequency by individual factors. CONCLUSIONS: The lack of major differences in symptom prevalence based on individual factors across diagnostic groups supports a heterogeneous approach to symptom research with AYAs. The study identified individual factors within diagnostic groups worthy of further exploration. IMPLICATIONS FOR PRACTICE: Providers can facilitate discussions with AYAs about symptoms by being aware of common symptoms that may occur in certain cancer diagnostic groups and based on individual factors. The significance of the individual symptom experience should not be underestimated, emphasizing the importance of person-centered symptom assessment.

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

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.

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

Introduction: 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 (CS2AYAC) is a nursing research team that has been in existence for over a decade. Purpose: The authors share the process by which CS2AYAC formed and describe key features that contribute to its sustainability. Results: 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. Conclusions: 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.

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

Purpose: 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. Methods: 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. Results: One hundred forty-four complete surveys were returned after 162 visits. Fifty percent (n = 72) of responses reported that the C-SCAT helped identify the patient's symptoms, and 53% (n = 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%; p < 0.01) as was a plan for managing priority symptoms (33.7% vs. 17.9%; p < 0.01). Conclusion: 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.

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

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.

Sedentary behavior and physical activity of young adult university students.

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.

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

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.

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

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.

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

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.

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

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.

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

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.

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

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.