Oncology's Silent Caregivers: A Mixed-Methods Exploration of the Experiences, Outcomes, and Unmet Needs of Caregiving Youth of a Parent With Cancer.

BACKGROUND: Cancer affects the whole family system causing reorganization of functioning and responsibilities where children may take on a caregiving role. In the United States, an estimated 204 000 to 475 000 caregiving youth provide multifaceted, extended care in oncology. This results in both positive and negative outcomes for youth-spanning multiple domains of health. OBJECTIVE: The aim of this study was to explore the caregiving experiences, outcomes, and unmet needs of caregiving youth (aged 12-24 years) in oncology. METHODS: An explanatory sequential mixed-methods study design was used. Fifty-two adults who lived with a parent with cancer as a child were recruited via social media and asked to complete an online survey. A subsample of 18 individuals reporting high to very high amounts of caregiving were subsequently interviewed. RESULTS: The mean reported caregiving youth age was 16.13 (±4.86) years. They provided care approximately 22.43 h/wk for approximately 3.04 years. Most (71.2%) reported high to very high amounts of caregiving activity. The highest reported categories of unmet needs were information, family, feelings, friends, and time out/recreation. Qualitative findings included 4 themes: stepping into the role, family communication, dealing with feelings, and a new separateness. CONCLUSIONS: Identified needs included a desire for more information to aid in uncertainty, better communication within the family, needing someone to help them process their feelings, and peer-to-peer support. IMPLICATIONS FOR PRACTICE: It is important for nurses and researchers to be aware of and acknowledge the needs of families dealing with cancer and aid in the development and implementation of tailored interventions to support caregiving youth.

Implementing Longitudinal Wellbeing Interventions and Evaluation Among Midwestern Healthcare Workers During COVID-19.

BACKGROUND: The impact of the COVID-19 pandemic on the mental health of healthcare workers throughout the world has been reported, but most studies have been cross-sectional and excluded the Midwestern U.S. healthcare workforce. OBJECTIVE: This study aimed to longitudinally assess the psychological wellbeing and wellness strategies used by a Midwestern academic health system's workforce at multiple points throughout waves of the COVID-19 pandemic to inform ongoing implementation of appropriate wellness activities. METHODS: An anonymous REDCap survey linked within our team-developed wellness education was posted in the employee online newsletter in April (T1), July (T2), October 2020 (T3), and May 2021 (T4). Surveys were open to all employees (approx. 9000) for approximately 12 days at each time point. Anxiety, depressive symptoms, stress, self-efficacy, and self-care activities were assessed. Following each data collection, team members discussed findings and planned wellness education implementation. RESULTS: Response ranged from n = 731 (T1) to n = 172 (T4). Moderate to severe stress was reported by 29.5% (n = 203) of respondents at T1 and 34.0% (n = 108) at T2. At T3, all psychological symptoms significantly increased (p < .001) as COVID-19 surged, with 48.5% (n = 141) of respondents reporting moderate to severe stress. At T4, stress significantly declined (p < .001). Exercise was the most frequently reported coping strategy. CONCLUSIONS: Mental health symptoms reported by a Midwestern healthcare workforce increased during surges of COVID-19 hospitalizations. Individuals in non-patient contact roles experienced symptom levels similar to and at times with greater severity than healthcare personnel with patient contact roles.

Health Care Professional Education on Cancer Screening of SGM Individuals: An Integrative Review.

Sexual and gender minority (SGM) individuals are disproportionately affected by cancer. Health care professional (HCP) and health sciences education rarely includes content on cancer screening in this population. This article aims to synthesize literature on educational programs for HCPs and health sciences students related to cancer screening for SGM individuals. An integrative review methodology guided a systematic search of five databases: CINAHL, PubMed, Embase, PsycInfo, and ERIC. Articles were included if they were empirically-based and described educational programs targeted at HCPs and health sciences students with content of cancer screening for SGM people. Eleven studies met the inclusion criteria. Of these, three were pilot studies and the majority of the articles (n = 9) used pre- and post-test designs. All of the interventions showed efficacy in increasing knowledge, attitudes, skills, and behavior. However, the vastly different programs and the fact that most of the cancer screening content was embedded in programs with broad SGM issues content limit the ability to make firm recommendations for any one particular program. In-person didactic content delivered multiple times incorporating modalities such as standardized patient encounters, case studies, and guest speakers increased knowledge, attitude, and skills of participants. Future studies should incorporate behavioral theories, develop more consistent aspects of educational programs, report demographic and pertinent data on participants, and utilize established instruments to measure outcomes when conducting educational interventions on HCPs and students in this area.

Determinants of breast cancer screening mammography uptake: Results from Jordan population and family health survey.

Background: Screening for breast cancer utilizing mammography is associated with reduced advanced cancer diagnosis and reduced breast cancer mortality. We aimed to assess the lifetime history of breast cancer screening utilization for Jordanian women aged 40 and 49 years and determinants of this utilization. Methods: This paper reports the analyzed data from the seventh cycle of the Jordan Population and Family Health Survey (JPFHS). For this study, the analysis was confined to 4486 women aged between 40 and 49 years at the time of data collection who reported their nationality as Jordanian. We used multivariate logistic regression analysis to assess whether any socio-demographic variables could predict greater breast cancer screening utilization. Results: Only 14% of all respondents aged 40-49 years reported ever having a mammogram. Results of multivariate logistic regression showed that area of residence, husband's level of education, younger age, and living in a wealthy status were strong predictors of lifetime history of breast cancer screening. Conclusions: This study elucidates that breast cancer screening mammography among Jordanian women has remained opportunistic and underutilized despite the efforts of national entities to promote screening and early detection of breast cancer. .: There is a geographic and social disparity in the utilization of mammography screening among Jordanian women.

Translation of Evidence-Based Interventions Into Oncology Care Settings: An Integrative Review.

BACKGROUND: Adoption of evidence remains slow, leading to variations in practices and quality of care. Examining evidence-based interventions implemented within oncology settings can guide knowledge translation efforts. OBJECTIVE: This integrative review aimed to (1) identify topics implemented for oncology-related evidence-based practice (EBP) change; (2) describe frameworks, guidelines, and implementation strategies used to guide change; and (3) evaluate project quality. METHODS: PubMed and CINAHL were searched to identify published practice change projects. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines were followed. Fifty articles met the inclusion criteria. Data were extracted; content analysis was conducted. The Quality Improvement Minimum Quality Criteria Set guided quality assessment. RESULTS: Topics included infection control/prevention (n = 18), pain/palliative care (n = 13), psychosocial assessment (n = 11), and medication adherence (n = 8). Among the projects, Plan, Do, Study, Act (n = 8) and Lean Six Sigma (n = 6) frameworks were used most. Thirty-six projects identified guidelines that directed interventions. Multiple implementation strategies were reported in all articles with planning, education, and restructuring the most common. Reach, sustainability, and ability to be replicated were identified as quality gaps across projects. CONCLUSION: The EBP topics that emerged are consistent with the oncology nursing priorities, including facilitating integration of EBP into practice. The studies identified used national guidelines and implementation strategies to move evidence into practice. Heterogeneity in measurement made synthesis of findings difficult across studies, although individual studies showed improvement in patient outcomes. IMPLICATIONS FOR PRACTICE: Development of an interprofessional oncology consortium could facilitate a standardized approach to implementation of high-priority topics that target improved patient outcomes, harmonize measures, and accelerate translation of evidence into practice.

Update to 2019-2022 ONS Research Agenda: Rapid Review to Address Structural Racism and Health Inequities.

PURPOSE: The Oncology Nursing Society (ONS) formed a team to develop a necessary expansion of the 2019-2022 ONS Research Agenda, with a focus on racism and cancer care disparities. METHODS: A multimethod consensus-building approach was used to develop and refine the research priorities. A panel of oncology nurse scientists and equity scholars with expertise in health disparities conducted a rapid review of the literature, consulted with experts and oncology nurses, and reviewed priorities from funding agencies. RESULTS: Critical gaps in the literature were identified and used to develop priority areas for oncology nursing research, practice, and workforce development. SYNTHESIS: This is the first article in a two-part series that discusses structural racism and health inequities within oncology nursing. In this article, three priority areas for oncology nursing research are presented; in the second article, strategies to improve cancer disparities and equity and diversity in the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Research priorities are presented to inform future research that will provide methods and tools to increase health equity and reduce structural racism in oncology nursing practice, research, education, policy, and advocacy.

Update to 2019-2022 ONS Research Agenda: Rapid Review to Promote Equity in Oncology Healthcare Access and Workforce Development.

PURPOSE: The Oncology Nursing Society (ONS) tasked a rapid response research team (RRRT) to develop priorities to increase diversity, equity, and inclusivity in oncology clinical care and workforce development. METHODS: An RRRT of experts in health disparities conducted a rapid review of the literature, consulted with oncology nurse leaders and disparities researchers, and reviewed priorities from funding agencies. RESULTS: Significant gaps in the current oncology disparities literature were identified and used to inform priority areas for future research practice and workforce development in oncology nursing. SYNTHESIS: This is the second article in a two-part series that presents findings on structural racism and health inequities in oncology nursing. In the first article, three priority areas for oncology nursing research were presented. In this article, strategies to improve diversity, equity, and inclusivity in clinical practice and the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Recommendations are presented to inform research, clinical, administrative, and academic oncology nursing settings on increasing diversity, equity, and inclusivity and deconstructing structural racism.

Use of an Unguided, Web-Based Distress Self-Management Program After Breast Cancer Diagnosis: Sub-Analysis of CaringGuidance Pilot Study.

BACKGROUND: Unguided, web-based psychoeducational interventions are gaining interest as a way to reach patients while reducing pressure on clinical resources. However, there has been little research on how patients with cancer use these interventions. OBJECTIVE: The objective of this analysis was to evaluate how women newly diagnosed with breast cancer used the unguided web-based, psychoeducational distress self-management program CaringGuidance After Breast Cancer Diagnosis while enrolled in a pilot feasibility study. METHODS: Women with stage 0 to II breast cancer diagnosed within the prior three months were recruited from clinics primarily in the Northeastern United States for participation in a 12-week pilot study of CaringGuidance plus usual care versus usual care alone. Usage prompts included sets of emails sent weekly for 12 weeks; standardized congratulatory emails after every two hours of program use, and informative emails for each cognitive-behavioral exercise. Individual user activity on the site was automatically tracked by an analytics system and recorded directly in the CaringGuidance database. RESULTS: Complete usage data were available for 54 subjects. Ninety-eight percent of the intervention group logged into CaringGuidance independently at least once. Thirty-eight (70%) logged in during all three months, 15 (28%) were intermittent users, and one (2%) was a non-user. Users (n=53) averaged 15.6 (SD 9.85) logins. Mean logins were greatest in month 1 (7.26, SD 4.02) and declined in months 2 (4.32, SD 3.66) and month 3 (4.02, SD 3.82). Eleven (21%) used CaringGuidance with both the frequency and activity level intended at study outset, 9 (17%) exceeded intended frequency and activity (high-high users), and 10 (19%) were below expected usage on both login frequency and activity (low-low users). Low-low users and high-high users differed significantly (P<.001) in the total number of views and unique views of all program components. Change in depressive symptoms and the number of sessions (r=.351) and logins (r=.348) between study months 1 and 2 were significantly correlated (P=.018, .019). Higher baseline distress was associated with more unique views of program resources (r=.281, P=.043). Change in intrusive/avoidant thoughts from baseline to month 3, and the number of users' unique exercise views were negatively correlated (r=-.319, P=.035) so that more unique exercise views, equated with greater decline in intrusive/avoidant thoughts from baseline to month 3. CONCLUSIONS: These findings favor the hypothesis that the key ingredient is not the amount of program use, but each user's self-selected activity within the program. More research is needed on the ideal ways to maintain use, and capture and define engagement and enactment of behaviors by people with cancer accessing unguided, self-management web-based programs.

eHealth Education: Methods to Enhance Oncology Nurse, Patient, and Caregiver Teaching.

BACKGROUND: eHealth can enhance the delivery of clinical cancer care by offering unique education opportunities for oncology nurses, patients, and family caregivers throughout the cancer trajectory. OBJECTIVES: This article reviews eHealth technology that can be applied to oncology education, such as mobile health applications, text messaging, web-based education, and audio- and videoconferencing. METHODS: Case studies provide exemplars of eHealth technologies used for delivering oncology education to nurses, patients, and caregivers. FINDINGS: By using eHealth technologies to obtain and provide education, oncology nurses are well positioned to improve the lives of patients and caregivers.

Experiences and Needs of African American Children and Adolescents in Supportive Care Roles for a Relative With Breast Cancer.

PURPOSE: To explore the experiences and needs of African American (AA) children and adolescents who were identified by a cancer survivor in their family as providing substantial supportive care during diagnosis and treatment. PARTICIPANTS & SETTING: 5 AA young adults who provided care and support to a family member with cancer when they were aged 7-19 years and 4 cancer survivors from a northeastern U.S. city. METHODOLOGIC APPROACH: Focus groups and interviews were conducted, recorded, transcribed, and analyzed using content analysis until thematic saturation was reached. FINDINGS: Themes focused on AA young supporters' lack of cancer-related information, reduced ability to communicate needs, and challenged views of themselves, relationships, faith, and the future at the time that they provided support. IMPLICATIONS FOR NURSING: Nurses can support AA children and adolescents in caregiving roles by assessing their needs and providing information on diagnosis and treatment. In addition, nurses can conduct research on culturally adapted interventions that can better support AA children and adolescents caring for a parent or grandparent with cancer.

CaringGuidance™ after breast cancer diagnosis eHealth psychoeducational intervention to reduce early post-diagnosis distress.

PURPOSE: Significant cancer-related distress affects 30-60% of women diagnosed with breast cancer. Fewer than 30% of distressed patients receive psychosocial care. Unaddressed distress is associated with poor treatment adherence, reduced quality of life, and increased healthcare costs. This study aimed to evaluate the preliminary efficacy of a new web-based, psychoeducational distress self-management program, CaringGuidance™ After Breast Cancer Diagnosis, on newly diagnosed women's reported distress. METHODS: One-hundred women, in five states, diagnosed with breast cancer within the prior 3 months, were randomized to 12 weeks of independent use of CaringGuidance™ plus usual care or usual care alone. The primary multidimensional outcome, distress, was measured with the Distress Thermometer (DT), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Impact of Events Scale (IES) at baseline and months 1, 2, and 3. Intervention usage was continually monitored by the data analytic system imbedded within CaringGuidance™. RESULTS: Although multilevel models showed no significant overall effects, post hoc analysis showed significant group differences in slopes occurring between study months 2 and 3 on distress (F(1,70) = 4.91, p = .03, η2 = .065) measured by the DT, and depressive symptoms (F(1, 76) = 4.25, p = .043, η2 = .053) favoring the intervention. CONCLUSIONS: Results provide preliminary support for the potential efficacy of CaringGuidance™ plus usual care over usual care alone on distress in women newly diagnosed with breast cancer. This analysis supports and informs future study of this self-management program aimed at filling gaps in clinical distress management.

Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.

Effects of social constraints and web-based psychoeducation on cancer-related psychological adjustment early-after breast cancer diagnosis.

Purpose: Social constraints are interactions between individuals that result in preventing one's disclosure of thoughts and emotions needed to facilitate cognitive processing of a traumatic event such as a breast cancer diagnosis. This study explored women's perceived social constraints from spouse/partners (S/P) and family/friends (F/F) in the first months after diagnosis while engaged in a study of CaringGuidance™ After Breast Cancer Diagnosis, a web-based, psychoeducational, self-management intervention aimed at women's psychological adjustment. Design: Randomized, controlled, pilot study. Sample: 100 women within 0-3 months of first, stage 0-II breast cancer diagnosis. Methods: Subjects were randomized to self-guided use of CaringGuidance™ for three months plus usual care or usual care alone. Social constraints (S/P) and (F/F), distress, depressive-symptoms, intrusive/avoidant thoughts, and coping were measured at baseline, 1, 2, and 3 months. Findings: The CaringGuidance™ group experienced a significantly greater decrease in perceived social constraints from S/P and F/F over three months than the usual care group. Change in social constraints from F/F significantly moderated change in depressive-symptoms and intrusive/avoidant thoughts, but the same was not true for change in S/P constraints. Conclusions: CaringGuidance™ holds promise as an intervention for newly diagnosed women to self-manage perceptions of social constraints. Implications for Psychosocial Providers: Providers should assess newly diagnosed women's perceptions of social constraining behavior from F/F, recognizing the potential significant impact of these interactions on psychological adjustment.

NCCN Guidelines Insights: Survivorship, Version 2.2019.

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for consequences of cancer and cancer treatment to aid healthcare professionals who work with survivors of adult-onset cancer. Guidance is also provided to help promote physical activity, weight management, and proper immunizations in survivors and to facilitate care coordination to ensure that all needs are addressed. These NCCN Insights summarize some of the topics discussed by the NCCN Survivorship Panel during the 2019 update of the guidelines, including the survivorship population addressed, ways to improve care coordination, and pain management.

Feasibility and acceptance of the CaringGuidance web-based, distress self-management, psychoeducational program initiated within 12 weeks of breast cancer diagnosis.

OBJECTIVE: Limited clinical resources create barriers to quality management of cancer-related distress. CaringGuidance After Breast Cancer Diagnosis is a web-based, patient-controlled, psychoeducational program of cognitive-behavioral, coping and problem-solving strategies aimed at early post-diagnosis distress reduction without clinical resources. This study evaluated the feasibility of recruiting and retaining newly diagnosed women to 12 weeks of CaringGuidance and program acceptance. METHODS: Women with stage 0 to II breast cancer diagnosed within the prior 3 months were recruited from clinics and communities in four states, from 2013 to 2015 and randomized to 12 weeks of CaringGuidance plus usual care (n = 57) or usual care alone (n = 43). Recruitment, retention, and program use were tracked. Using standard and study-derived measures, demographic and psychological variables were assessed at baseline and monthly and program satisfaction at 12 weeks. RESULTS: Of 139 women screened, 100 enrolled, five withdrew, and 12 were lost to follow-up (83% retention rate). Total program engagement was positively associated with greater baseline intrusive/avoidant thoughts. Intervention participants (92%) believed CaringGuidance would benefit future women and was easy to use. Sixty-six percent believed CaringGuidance helped them cope. Women used program content to change thoughts (49%) or behaviors (40%). Stress in the previous year was positively associated with reports that CaringGuidance was reassuring and helpful. CONCLUSIONS: Feasibility and acceptance of CaringGuidance was demonstrated pointing to the program's potential as a cancer-distress self-management intervention. Future research will explore program feasibility and acceptability in other regions of the United States, leading to clinical implementation trials.

Feasibility of Synchronous Online Focus Groups of Rural Breast Cancer Survivors on Web-Based Distress Self-Management.

PURPOSE: To obtain rural breast cancer survivors' perceptions of CaringGuidance™ After Breast Cancer Diagnosis, a web-based, psychoeducational, distress self-management program, and explore the feasibility of gathering survivors' perceptions about CaringGuidance using online focus groups (OFGs). PARTICIPANTS & SETTING: 23 survivors of early-stage breast cancer, a mean of 2.5 years postdiagnosis, living in rural Nebraska. METHODOLOGIC APPROACH: Participants reviewed the CaringGuidance program independently for an average of 12 days prior to their designated OFG. The extent of participants' pre-OFG review was verified electronically. Four synchronous, moderated OFGs were conducted. Demographic and OFG participation data were used to assess feasibility. Transcripts of OFGs were analyzed using directed content analysis. FINDINGS: All enrolled women participated in their designated OFG. Five themes of the quality and usability of CaringGuidance were identified. Recommendations were used to modify CaringGuidance prior to the pilot efficacy trial. IMPLICATIONS FOR NURSING: The findings contribute to nurses' knowledge and guide assessment and interventions pertaining to psychosocial needs of rural women with breast cancer, OFGs, and qualities rural women seek in web-based psychological interventions.

Survivorship, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common physical and psychosocial consequences of cancer and cancer treatment to help healthcare professionals who work with survivors of adult-onset cancer in the posttreatment period. This portion of the guidelines describes recommendations regarding the management of anthracycline-induced cardiotoxicity and lymphedema. In addition, recommendations regarding immunizations and the prevention of infections in cancer survivors are included.

Nurse Practitioner Knowledge, Attitudes, and Beliefs When Caring for Transgender People.

Purpose: The aim of this study was to explore Nurse Practitioner (NP) knowledge, attitudes, and beliefs when working with transgender people and to inform about Practitioner education needs. Methods: A qualitative descriptive design was used to explore (NP) experiences. Focused semistructured interviews were conducted in 2016 with 11 (N=11) NPs in the northeastern United States who represent various years of experience and encounters with transgender patients. The interviews explored NP knowledge attitudes and beliefs when caring for transgender patients and described their overall experiences in rendering care in the clinical setting. The interviews were professionally transcribed and analyzed independently and jointly by two investigators using conventional content analysis. Results: Four main themes and six subthemes were identified: Main themes include personal and professional knowledge gaps, fear and uncertainty, caring with intention and pride, and creating an accepting environment. Conclusions: NPs in this study perceive gaps in their knowledge that threaten their ability to deliver quality, patient-centered care to transgender patients, despite their best intentions. These findings have implications for changes in nursing practice, education, and research needed to address vital gaps in the healthcare of transgender people.

Jordanian physicians' perceived barriers and facilitators to patient participation in treatment decision-making: An exploratory study.

BACKGROUND: Successful implementation of shared decision-making in clinical encounters is influenced by system, patient, and clinician factors that both facilitate and present barriers to patient-centered care. Little is known about which factors Jordanian physicians believe influence their ability to implement shared decision-making with cancer patients. AIMS: To determine Jordanian physicians' perceived barriers and facilitators to patient participation in treatment decision-making. SETTINGS AND DESIGN: A cross-sectional exploratory survey design was used in the study. A convenience sample of 86 Jordanian medical and radiation oncologists and surgeons was recruited. MATERIALS AND METHODS: A valid measure of physicians' views of shared decision-making was slightly modified from its original English and used to collect data. Data were analyzed using the Statistical Package for the Social Sciences (SPSS) for windows version 19.0 (SPSS, Inc., Chicago, IL, USA). Descriptive and inferential statistics were carried as appropriate. RESULTS: Insufficient time to spend with the patient, patient expecting a certain treatment rather than a consultation, and the patient's family overriding the decision-making process were the most frequently reported barriers to patient participation in treatment decision-making. Physicians believed that patients trust in physicians and patient being accompanied at the consultation were important facilitators of patient participation in treatment decision-making. CONCLUSIONS: Jordanian physicians perceive multiple barriers to patient participation in treatment decision-making. Patient-related difficulties (e.g., indecision), and system-related difficulties, in particular, patient's family influence on the decision-making process are more prevalent among Jordanian physicians compared to Western physicians.

Survivorship, Version 2.2017, NCCN Clinical Practice Guidelines in Oncology.

Many cancer survivors experience menopausal symptoms, including female survivors taking aromatase inhibitors or with a history of oophorectomy or chemotherapy, and male survivors who received or are receiving androgen-ablative therapies. Sexual dysfunction is also common in cancer survivors. Sexual dysfunction and menopause-related symptoms can increase distress and have a significant negative impact on quality of life. This portion of the NCCN Guidelines for Survivorship provide recommendations for screening, evaluation, and treatment of sexual dysfunction and menopausal symptoms to help healthcare professionals who work with survivors of adult-onset cancer in the posttreatment period.