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 Mixed-Methods Feasibility Study: Eliciting ICU Experiences and Measuring Outcomes of Family Caregivers of Patients Who Have Undergone Hematopoietic Stem Cell Transplantation.

The impact of an intensive care unit (ICU) admission on family caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT) has not been well described. Aims of this study were to determine the feasibility of conducting research with family caregivers of HSCT patients during an ICU admission and generate preliminary data about their experiences and engagement in care. Using a mixed-methods, repeated measures design, we collected data from family caregivers after 48 hr in the ICU (T1) and at 48 hr after transferring out of ICU (T2). Enrolling HSCT caregivers in research while in the ICU was feasible (10/13 consented; 9/10 completed data collection at T1); however, data collection at T2 was not possible for most caregivers. Caregiver distress levels were high, and engagement in care was moderate. The three themes that emerged from interviews (n = 5) highlighted that although HSCT family caregivers faced many challenges and received limited support during their ICU experience, they were able to access their own personal resources and demonstrated resilience.

Development of an International Competency Framework for Nurses in the Provision of Self-management Support to Cancer Populations.

BACKGROUND: Cancer survivors are required to manage their health, healthcare, and a myriad of symptoms through self-management. OBJECTIVE: The aim of this study was to develop a comprehensive framework of competencies and performance criteria that identifies the requisite knowledge and skills for nursing practice in the provision of self-management support for cancer survivors and their families. METHODS: The competency framework was developed using the following 3-stage consensus building approach: (1) development of a preliminary list of self-management support competencies and performance criteria informed by relevant literature, (2) a 2-round modified Delphi conducted with a panel of cancer nurse experts, and (3) a research team consensus meeting to finalize framework components. RESULTS: Seventy-one items, comprising 13 core competencies and 58 performance criteria, across 6 domains were generated. In round 1 of the modified Delphi, a panel of 21 oncology nurses produced consensus on retaining 28 items for inclusion in the final framework. Thirty-one items (including new items generated in round 1) were sent to round 2 for further rating. A panel of 19 nurses produced consensus on retaining a further 20 items in the framework in round 2. Of the 11 items that did not reach consensus, the research team proposed to include 7 in the final framework. Fifty-nine items were included in the final framework. CONCLUSIONS: This study provides a comprehensive, self-management support competency framework for oncology nurses. IMPLICATIONS FOR PRACTICE: This framework is the first step toward the development of training program curricula that prepares nurses in self-management for cancer and associated coaching knowledge and skills.

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 Person-Centered Approach to Symptom Assessment and Management for Children and Adolescents Receiving Cancer Treatment.

OBJECTIVES: Discuss the clinical assessment and management of symptoms for children and adolescents receiving treatment for cancer with attention to a person-centered approach to care. DATA SOURCES: Review of currently published literature and guidelines pertaining to symptom assessment and management for children and adolescents receiving treatment for cancer. CONCLUSION: Symptoms such as pain, nausea, and fatigue are commonly reported by children and adolescents receiving cancer treatment and are associated with greater symptom burden. Symptom assessment should be tailored to the child or adolescent and include the child's or adolescent's preference for reporting symptoms and attention to the symptoms that are of greatest priority. Evidence-based guidelines for the management of symptoms, including pain and nausea, are available to guide symptom management interventions and should be tailored to provide person-centered care. IMPLICATIONS FOR NURSING PRACTICE: Nurses can lead efforts through clinical practice and research initiatives to advance person-centered symptom care for children and adolescents with cancer on a global level. Priorities for future work to advance person-centered symptom assessment and management include (1) identification of best practices for symptom assessment, (2) attention to social determinants of health and their subsequent influence on symptom outcomes, (3) compilation of evidence for management of less commonly reported symptoms, and (4) implementation of published clinical guidelines for symptom management in practice settings.

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.

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

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.

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.

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

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.

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.

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

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.