Ensuring Intervention Fidelity of an Attention Control Arm in a Multisite Randomized Controlled Trial.

BACKGROUND: Intervention fidelity is a critical element of randomized controlled trials, yet reporting of intervention fidelity among attention control arms is limited. Lack of fidelity to attention control procedures can affect study outcomes by either overestimating or underestimating the efficacy of the intervention under examination. OBJECTIVES: This brief report describes the approach researchers took to promote fidelity to the attention control arm of a pediatric palliative care randomized controlled trial funded by the National Institutes of Health. METHODS: The Informational Meetings for Planning and Coordinating Treatment trial aims to determine the efficacy of a communication intervention that uses care team dyads (i.e., physicians partnered with nurses or advanced practice providers) to engage parents of children with cancer who have a poor prognosis in structured conversations about prognostic information, goals of care, and care planning. The intervention is compared with an attention control arm, which provides parents with structured conversations on common pediatric cancer education topics, such as talking to their child about their cancer, clinical trials, cancer treatment, side effects, and so forth. National Institutes of Health guidelines for assessing and implementing strategies to promote intervention fidelity were used to design (a) the attention control arm of a randomized controlled trial, (b) related attention control arm training, and (c) quality assurance monitoring. RESULTS: Attention control study procedures were designed to mirror that of the intervention arm (i.e., same number, frequency, and time spent in study visits). Cluster randomization was used to allocate care team dyads to one arm of the randomized controlled trial. Care team dyads assigned to the attention control arm participated in online training sessions to learn attention control procedures, the different roles of research team members, and quality assurance methods. Fidelity to attention control procedures is assessed by both the interveners themselves and a quality assurance team. DISCUSSION: Study design, training, and delivery are all critical to attention control fidelity. Baseline training often needs to be supplemented with booster training when time gaps occur between study start-up and implementation. Quality assurance procedures are essential to determine whether interveners consistently deliver attention control procedures correctly.

Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures.

BACKGROUND: High-quality communication in pediatric and adolescent cancer is the standard of care. Yet, we lack pediatric-specific communication measures. We designed self-report and caregiver-report communication measures for use in pediatric oncology settings. METHODS: We recruited adolescent and young adults (AYAs; 12-24 years) with cancer and parents of children and AYAs between 1 month post-diagnosis and 2 months after completing treatment. Participants completed measures including 58 questions addressing eight previously characterized communication functions. For each function, we conducted factor analysis, and assessed reliability and construct validity. Based on psychometric properties, we created final long-form (31 items) and short-form (eight items) communication measures (PedCOM) for both self- and caregiver-report. RESULTS: Participants included 200 parents and 88 AYAs. The final 31-item and eight-item PedCOM measures for parents and AYAs demonstrated good unidimensional model fit. Each communication function (e.g., building relationships) demonstrated high reliability, coefficient alphas ranged from .83 to .93 for parents and .85 to .93 for AYAs. The overall 31-item and eight-item PedCOM measures also demonstrated high reliability (alphas >.9). For construct validity, PedCOM-Parent-31 and PedCOM-Parent-8 correlated positively with satisfaction with care, trust, emotional self-management, and decisional satisfaction, and negatively with anxiety and caregiver burden. PedCOM-AYA-31 and PedCOM-AYA-8 correlated positively with satisfaction with care, trust, emotional self-management, symptoms self-management, and decisional satisfaction, and negatively with anxiety. DISCUSSION: We developed valid and reliable measures of communication functions for parents and AYAs with cancer. These measures can support organizations and stakeholder groups that are striving to improve the quality of cancer care.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review.

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness. Methods: Scoping review methodology as outlined by Arksey and O'Malley. Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review. Interventions focused on supporting advance care planning (ACP), facilitating treatment decision making, managing pain, and promoting resilience, psychosocial well-being, and quality of life. Interventions were delivered face-to-face and via different eHealth platforms and were targeted to AYAs with cancer, HIV/AIDS, and cystic fibrosis in both inpatient and outpatient settings. Conclusions: Few evidence-based multidisciplinary palliative care interventions have documented benefit for AYAs with serious illness. The limited work that has been done demonstrates that AYAs are open to engaging in palliative care interventions and suggests that individual members of the multidisciplinary team can implement these different interventions to support enhanced patient outcomes.

Sprinting in a Marathon: Nursing Staff and Nurse Leaders Make Meaning of Practicing in COVID-19 Devoted Units Pre-Vaccine.

Objective: To describe the lived experience of nursing staff and nurse leaders working in COVID-19 devoted units (intensive care or medical unit) prior to vaccine availability. Research Design: Qualitative phenomenological design with a focus group approach. Methods: The study team recruited a convenience sample of nursing staff (nurses, and nursing assistants/nurse technicians) and nurse leaders (managers, assistant nurse managers, clinical nurse specialists, and nurse educators) at an academic medical center in the midwestern United States. Focus groups and individual interviews were conducted to encourage participants to describe their (1) experiences as nursing professionals, (2) coping strategies, and (3) perspectives about supportive resources. Moral distress was measured with the moral distress thermometer and qualitative data were analyzed with Giorgi-style phenomenology. Results: We conducted 10 in-person focus groups and five one-on-one interviews (n = 44). Seven themes emerged: (1) the reality of COVID-19: we are sprinting in a marathon; (2) acute/critical care nurse leaders experience unique burdens; (3) acute/critical care staff nurses experience unique burdens; (4) meaning of our lived experience; (5) what helped us during the pandemic; (6) what hurt us during the pandemic; and (7) we are not okay. Participants reported a moderate level of moral distress (M = 5.26 SD = 2.31). They emphasized that peer support was preferred over other types of support offered by the healthcare organization. Participants expressed positive feedback about the focus group experience and commented that group processing validated their experiences and helped them "feel heard." Conclusion: These findings affirm the need for trauma-informed care and grief support for nurses, interventions that increase meaning in work, and efforts to enhance primary palliative communication skills. Study findings can inform efforts to tailor existing interventions and develop new, more comprehensive resources to meet the psychosocial needs of nursing staff and nurse leaders practicing during a pandemic.

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).

Providing Palliative and Hospice Care to Children, Adolescents and Young Adults with Cancer.

OBJECTIVES: To describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice. DATA SOURCES: Peer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care. CONCLUSION: Understanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.

Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents.

BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.

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.

The Nurse's Role in Prognosis-Related Communication in Pediatric Oncology Nursing Practice.

The experiences of pediatric oncology nurses with prognosis-related communication (PRC) remain largely unknown. The purpose of this article is to report results of focus groups wherein 15 pediatric oncology nurses from three Midwestern pediatric cancer programs provided descriptions of PRC and how they experience PRC within their daily practice. Data from focus groups were analyzed via an interpretive descriptive approach, which resulted in three themes: (1) nurses' operational definition of PRC, (2) nurses' roles in PRC, and (3) nurses' preparation for engagement in PRC. From discussions within the focus groups, nurses recognized that PRC occurs across a continuum. Nurses distinguished that the definition of PRC expands beyond simply reporting life expectancy to describing the consequences of cancer- and treatment-related toxicities and effects. When nurses are not actively invited by their physician partners to participate in PRC, nurses will often develop workarounds to ensure that they understand what was said to patients and families. This allows them to function more effectively as supporters, advocates, and informants. Nurses described little preparation to participate in such challenging conversations. Pediatric oncology nurses need to acknowledge and embrace that they are an integral part of PRC. Interprofessional communication training is necessary to enhance the comfort and confidence of nurses engaging in PRC.

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.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

Pediatric oncology nurses' perceptions of prognosis-related communication.

BACKGROUND: Disclosure of prognosis-related information is an essential aspect of communication with pediatric patients with cancer and their families. The nurse is believed to play an important role in this process, but nurse perceptions and experiences have not been well-described. PURPOSE: Provide an exploration of pediatric oncology nurses' experiences with prognosis-related communication (PRC). METHOD: Mixed-methods, multiphase design. This paper highlights the qualitative portion of the study. FINDINGS: Three themes were identified: Importance of collaboration, impact of PRC, and delivery of prognostic information. DISCUSSION: Collaboration is a critical element of PRC. Nurses are often not included in the disclosure process, which limits the ability of nurses to fully function in their roles, compromising patient, family, and nurse outcomes. A paradigm shift is required to empower nurses to be more active participants. More education of physicians and nurses is necessary to consistently engage nurses in PRC and prepare nurses for critical conversations.

Pediatric Oncology Nurses' Experiences With Prognosis-Related Communication.

OBJECTIVES: To examine nurses' experiences of prognosis-related communication (PRC) with parents of children with cancer. SAMPLE & SETTING: Cross-sectional, correlational study in the pediatric oncology setting involving 316 members of the Association of Pediatric Hematology/Oncology Nurses. METHODS & VARIABLES: Online survey regarding individual nurse factors, PRC, interprofessional collaboration, moral distress, and perceived quality of care. RESULTS: Nurses strongly agreed that prognostic disclosure is critical for decision making, but they are challenged in determining their role. Nurses with more years of experience and training in PRC, those working in an outpatient setting, and those with higher levels of nurse-physician collaboration reported more positive experiences with PRC. Positive experiences with PRC and collaboration were significantly associated with higher nurse-perceived quality of care and reduced nurse moral distress. IMPLICATIONS FOR NURSING: Nurses should work to be active participants in the process of PRC by collaborating with physician colleagues. When nurses sense that prognostic discussions have been absent or unclear, they should feel confident in approaching physician colleagues to ensure parent understanding and satisfaction with communication.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

Nurses' Perceptions of Diagnosis and Prognosis-Related Communication: An Integrative Review.

BACKGROUND: Disclosure of diagnostic and prognostic information has become the standard in the United States and increasingly around the world. Disclosure is generally identified as the responsibility of the physician. However, nurses are active participants in the process both intentionally and inadvertently. If not included in initial discussions regarding diagnosis and prognosis, the nurse may find it challenging to openly support the patient and family. OBJECTIVE: The aim of this study is to synthesize published literature regarding nurses' perceptions and experiences with diagnosis and prognosis-related communication. METHODS: The Whittemore and Knafl method guided the integrative review process. Electronic databases including Cumulative Index to Nursing and Allied Health Literature, Health Sciences in ProQuest, PubMed, and Web of Science were used to review the literature from 2000 to 2015. Constant comparison methods were used to analyze the data and develop themes. RESULTS: Thirty articles met all of the inclusion criteria and were included in this review. Several themes emerged from the data, including the nurse's role in the process of diagnosis and prognosis-related communication, barriers and difficulties related to communication, and positive and negative outcomes. CONCLUSIONS: Nurses play an integral role in the process of diagnostic and prognostic disclosure. Further exploration of both physician and patient perceptions of the nurse's role are needed. Interprofessional training regarding diagnosis and prognosis-related communication is essential to promote collaboration and better empower nurses in this process. IMPLICATIONS FOR PRACTICE: Nurses should aim to purposefully partner with physician colleagues to plan and participate in diagnostic and prognostic discussions. Nurses should identify opportunities to improve their knowledge, understanding, and comfort with challenging conversations.

Reliability and validity of a tool to assess oncology nurses' experiences with prognosis-related communication.

PURPOSE/OBJECTIVES: To establish the reliability and validity of a previously developed survey measuring nurses' experiences with prognosis-related communication. DESIGN: Psychometric testing of survey. SETTING: Mailed survey of Oncology Nursing Society (ONS) members. SAMPLE: 392 ONS members. METHODS: Reliability was analyzed using Cronbach's alpha. Total scale and subscale characteristics were evaluated through inter-item correlation matrices, average inter-item correlations, corrected item-to-total correlations, and Cronbach's alpha coefficients if the items were removed. Construct validity was assessed using exploratory factor analysis and contrasted group comparisons. MAIN RESEARCH VARIABLES: Measures of attitudes toward prognosis-related communication, demographic variables. FINDINGS: A three-factor structure emerged with acceptable reliability and validity. Contrasted group comparisons revealed differences in prognosis-related communication by nurses' years of experience with patients with cancer, level of education, and extent of education about prognosis-related communication. CONCLUSIONS: The final three-factor instrument, Prognosis-Related Communication in Oncology Nursing, was found to have acceptable reliability and validity. IMPLICATIONS FOR NURSING: The final instrument can serve as a tool to measure nurses' experiences with prognosis-related communication. Such measurements may guide interventions that aim to improve the process of prognostic disclosure and elucidate the role of the nurse in the process.