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The documentation of pain in the labor and delivery setting is one of the essential tasks of all health care providers who care for women in labor. The Joint Commission standards mandate regular pain assessments, but compliance with this mandate in the highly unique patient population of laboring woman is problematic when using the standard 0 to 10 Numeric Rating Scale. Labor pain is always unique given the various contributing physiologic, emotional, social, and cultural components. This article describes the work of a process improvement group to create an alternative pain assessment tool named the Coping With Labor Algorithm. The group, consisting of nurses and nurse-midwives, used the FOCUS format and Deming's 'Plan, Do, Check, and Act' cycle to create a formalized assessment tool for use with laboring women. The Coping With Labor Algorithm is currently in use in the labor unit of a large tertiary care facility, which successfully passed a Joint Commission inspection while using the coping algorithm. The value of the coping algorithm is two-fold: it provides a mechanism for pain documentation, and it provides nursing care suggestions for the laboring woman. This article reports nurses' perceptions of the tool. [ABSTRACT FROM AUTHOR]

'Care' is central to nursing theory and practice, and has been described in a variety of ways. Intense conversations about care have been developing in other fields of study as well, from the social sciences to the humanities. Care ethics has grown out of intellectual exchange between feminist thought, moral theory and the critique of traditional western political philosophy. However, care ethics is not without its critics, as these accounts of care have also sparked vigorous challenges. This paper traces the construct of care through nursing theory, care ethics, feminist critiques of moral and political theory and agonistic feminism to outline a set of problematics that a political theory of care should engage. It discusses how care is conventionally posited in more or less essentialist, universalizing and naturalizing terms. It introduces the ideas of feminist theorists who resist dichotomizing care and the political, and situate care in the context of power and politics. The tensions between care feminism and agonistic feminism are highlighted in order to explore the potential of theorizing both care and nursing in political terms. [ABSTRACT FROM AUTHOR]

Objectives: 1) Describe sexual and gender minority (SGM) older adults' current practices and concerns for communicating end-of-life (EOL) and daily care preferences in long-term care (LTC); 2) Elicit ideas about adapting a video-based intervention to facilitate communication., Methods: After consulting a community advisory board, we conducted two focus groups with SGM older adults ≥55 years of age recruited from a community-based service organization ( n  = 4) and a continuing care retirement community ( n  = 9). We audio-recorded, transcribed, and coded data using directed content analysis methods and summarized results descriptively., Results: Most participants were cisgender ( n  = 12), female ( n  = 11), lesbian ( n  = 10), White and non-Hispanic ( n  = 13); mean age was 70.62. Participants' concerns included discrimination, autonomy, chosen family, and community; they linked daily care preferences with personhood and quality of life. They advocated for building intentional community-based support networks to help peers discuss preferences and produce videos before LTC transition and ensure compliance after., Conclusions: For SGM older adults, asserting and protecting their full personhood, through daily care preferences, is essential to quality of life in LTC., Clinical Implications: Video-recorded statements of daily preferences, facilitated and supported by a peer network, could promote culturally competent, person- and community-centered care for SGM older adults in LTC settings.

Background: Sleep difficulty in caregivers is associated with poor physical and psychological outcomes. The purpose of this study was to describe family caregivers' perception of sleep difficulty through the hospice trajectory after a cancer diagnosis as predicted by age, sex, self-report of anxiety or depression, and cohabitation., Methods: We conducted a secondary analysis of longitudinal data using multilevel modeling with nested model comparisons. Beginning with an unconditional growth model, predictors were added to nested models to test differential impact., Results: Caregivers (n = 164) were predominately white (n = 160; 97%) and female (n = 113, 69%). We hypothesized that age, sex, history of anxiety or depression, and cohabitation would predict sleep difficulty. The cohabitation predictor model was a statistically significant model for caregiver perception of sleep difficulty that worsened throughout hospice caregiving ( b = .184, χ 2 = 7.199, P = 0.027) but age, sex, and history of depression or anxiety did not improve model fit., Conclusion: Our findings indicate that family caregivers who cohabitate exhibit increased perception of sleep difficulty over the course of hospice. Future studies and interventions for hospice family caregivers' sleep should consider cohabitation between the patient and the caregiver as a significant predictor of sleep difficulty to observe and potentially mediate the negative outcomes associated with caregiver sleep difficulty. Further, determining the underlying reasons for sleep difficulty in cohabitation (e.g., patient symptoms or treatments) should be explored., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: To describe cancer survivors' and care partners' perceived stress and social support during the COVID-19 pandemic and assess the feasibility of audio diaries for assessing role-related needs and resources., Methods: Participants (N = 51; n = 28 survivors, n = 23 care partners) recorded three monthly audio diaries reporting stress and support experiences. Diaries were transcribed and content-analyzed using a hybrid approach. Stress-related content was inductively coded, and social support content was deductively coded by type (instrumental, information, emotional, companionship, appraisal; κ = 0.75) then inductively coded. Descriptive statistics summarized sociodemographic data and compared coding frequencies by role. We developed narrative summaries of stress and support categories and selected quotes for contextual detail., Results: Cancer-related stressors were most prevalent (28.8%), followed by work (26.8%), family (23.1%), social isolation (13.4%), and finances (8.0%). While no significant difference in reporting frequency was observed between roles, cancer-related stress was more prevalent for survivors while work-related stress was mentioned more by care partners. Emotional support was the most prevalent support type (32.1%), followed by companionship (25.3%), appraisal (17.9%), instrumental (16.67%), and informational support (8%). Survivors reported more appraisal support than care partners (χ 2  = 6.48, df = 1, P = .011) and more support for self-care, while care partners expressed more other-oriented concerns and focused more on managing responsibilities and interactions outside the household., Conclusions: The pandemic complicated and intensified role-based stressors already present in the survivorship context. Our findings highlight the importance of informal social support networks, particularly when access to formal services is limited, and suggest that audio diaries can be an effective tool for assessing support needs and resources., Implications for Nursing Practice: Nurses and healthcare providers should tailor social support assessments to address the distinct support needs and individual resources of cancer survivors and their care partners. This is especially critical in contexts that limit access to care and formal services., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Sarah Wawrzynski reports financial support was provided by National Institute of Nursing Research. Jacqueline Kent-Marvick reports financial support was provided by National Institute of Nursing Research., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Emerging literature suggests that LGBTQ+ cancer survivors are more likely to experience financial burden than non-LGBTQ+ survivors. However, LGBTQ+ cancer survivors experience with cost-coping behaviors such as crowdfunding is understudied., Methods: We aimed to assess LGBTQ+ inequity in cancer crowdfunding by combining community-engaged and technology-based methods. Crowdfunding campaigns were web-scraped from GoFundMe and classified as cancer-related and LGBTQ+ or non-LGBTQ+ using term dictionaries. Bivariate analyses and generalized linear models were used to assess differential effects in total goal amount raised by LGBTQ+ status. Stratified models were run by online reach and LGBTQ+ inclusivity of state policy., Results: A total of N = 188,342 active cancer-related crowdfunding campaigns were web-scraped from GoFundMe in November 2022, of which N = 535 were LGBTQ+ and ranged from 2014 to 2022. In multivariable models of recent campaigns (2019-2022), LGBTQ+ campaigns raised $1608 (95% CI: -2139, -1077) less than non-LGBTQ+ campaigns. LGBTQ+ campaigns with low (26-45 donors), moderate (46-87 donors), and high (88-240 donors) online reach raised on average $1152 (95% CI: -$1589, -$716), $1050 (95% CI: -$1737, -$364), and $2655 (95% CI: -$4312, -$998) less than non-LGBTQ+ campaigns respectively. When stratified by LGBTQ+ inclusivity of state level policy states with anti-LGBTQ+ policy/lacking equitable policy raised on average $1910 (95% CI: -2640, -1182) less than non-LGBTQ+ campaigns from the same states., Conclusions and Relevance: Our findings revealed LGBTQ+ inequity in cancer-related crowdfunding, suggesting that LGBTQ+ cancer survivors may be less able to address financial burden via crowdfunding in comparison to non-LGBTQ+ cancer survivors-potentially widening existing economic inequities., (© 2024 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background and Objectives: LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice., Research Design and Methods: We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized., Results: The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL., Discussion and Implications: Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities., Objective: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding., Methods: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related., Results: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement., Conclusions: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research., (©Austin R Waters, Cindy Turner, Caleb W Easterly, Ida Tovar, Megan Mulvaney, Matt Poquadeck, Hailey Johnston, Lauren V Ghazal, Stephen A Rains, Kristin G Cloyes, Anne C Kirchhoff, Echo L Warner. Originally published in JMIR Cancer (https://cancer.jmir.org), 30.10.2023.)

Background: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience., Objective: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer., Methods: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling., Results: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience., Conclusions: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment., Implications for Practice: Efforts should be made to preserve and foster resilience among siblings who use social media for support., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Background and Objectives: A legacy of values (e.g., legacy letter) is a nonlegal way to intentionally communicate intangible assets (e.g., values, life lessons, and emotional and supportive instruction) with others. There is scant research on legacy creation outside of a palliative care context, and no studies have explored the experiences of community-dwelling older adults creating a legacy of values., Research Design and Methods: As part of an exploratory sequential mixed methods study, we conducted semistructured interviews with older adults (N = 16) who had previously created a legacy of values. We analyzed transcribed interviews using an interpretive descriptive approach. We iteratively coded interviews deductively with sensitizing concepts identified in the literature (existential well-being, end-of-life preparation and completion, generativity, and resilience), and inductively, based on participants' descriptions. Codes were categorized by patterns of motivations, content, outcomes, and meaning, and thematically summarized., Results: We conceptualized the overall experience of creating a legacy of values as Preparing for the Future While Living in the Present and identified 4 themes: Preserving the Intangible for You and for Me, Sharing What I Want You to Know, Obtaining Peace through Reflection and Preparation, and Living into a Continuing Legacy. Participants attained peace, realized their life was not complete, and were challenged to live intentionally through legacy creation., Discussion and Implications: Creating a legacy of values may concurrently prepare older adults for the end of life and the remainder of life. These findings offer insight into a generative act that can promote intentional living among older adults., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample ( N  = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.

Homelessness and caregiver insecurity are barriers to accessing hospice for end-of-life care. Some communities have implemented a community-based social model of hospice care, and reports of its characteristics and outcomes are growing in hospice and homeless literature. This case report explored the experiences of social model hospice recipients using photovoice, a community-based participatory method to photograph meaningful aspects of care. Participants (n = 3) took photos (n = 93), journaled, and participated in semistructured interviews as co-analyzers. Through deductive codes from the literature and inductive analysis of data, 6 themes were identified: having a physical location to receive care, involving the community, having spiritual needs attended to, acknowledging family/family of choice, connecting with animals, and feeling cared for. Participants offered few suggestions to improve care. Social model hospice provided a location for care, funding, and social support to address housing and caregiver insecurity. Results corroborated the social model hospice concept (antecedents, attributes, consequences). Findings add to the growing literature with implications for communities and leaders looking to start or improve care. Results suggest that photovoice may be a feasible method for eliciting firsthand experiences of residents. Findings may guide discussions about patient-reported aspects of care for a more accurate understanding of meaningful social model hospice care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Objectives: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving., Sample & Setting: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis., Methods & Variables: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions., Results: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age., Implications for Nursing: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health ( β  = -0.82 [-1.22 to -0.42], p  < 0.001), positive affect and well-being scores ( β  = -0.69 [-1.03 to -0.36], p  < 0.001), and higher depression ( β  = 0.24 [0.12-0.37], p  < 0.001) and anxiety scores ( β  = 0.22 [0.07-0.37], p  < 0.005). Employment status significantly moderated the relationship between burden and global health ( β  = 0.65 [0.22 to 1.08], p  < 0.005), and burden and positive affect and well-being ( β  = 0.45 [0.06 to 0.84], p  < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.

Purpose: The way Hospice Care Team (HCT) members talk about patients and caregivers reflects personal attitudes and experiences, training, and broader social and cultural discourse. This secondary analysis examined the framing language professional hospice care providers used when discussing end-of-life care for LGBTQ+ patients and caregivers., Methods: Discourse analysis and frame theory informed a secondary, qualitative analysis of focus group data collected with hospice providers (N = 48) in 3 U.S. states regarding their knowledge, experience, and opinions about end-of-life care for LGBTQ+ patients and caregivers., Results: The following four (often overlapping) frames were identified (1) A normalizing frame which dismissed differences between LGBTQ+ patients/caregivers and non-LGBTQ+ individuals in general, and especially at end-of-life (2) A homogenizing frame which cast being LGBTQ+ as an intrinsic, universal characteristic and did not differentiate between different groups, specifically conflating orientation and gender identity (3) A pathologizing frame in which providers related being LGBTQ+ to disease conditions or illegal behaviors (4) An individualizing frame which focused on between-group differences, acknowledged variation, and emphasized the importance of historical context for personalized care., Conclusion: Examination of discursive frames used by providers enhances understanding of how social and cultural influences, along with training and experience, shape how HCT members approach working with LGBTQ+ patients and families, and illuminates areas where additional education and training are needed. Our findings support the need for ongoing efforts to improve HCT members' knowledge and skill regarding the needs of LGBTQ+ patients and families within the context of hospice and end-of-life care.

Certified nursing assistants (CNAs) provide 80% of direct care in long-term care settings and are critical to maintaining resident well-being. Arts-based approaches to enhancing meaningful engagement have the potential to empower CNA ownership in the process of improving patient-centered care. We held a series of focus groups with CNAs (n = 14) to adapt arts-based creative caregiving (CCG) techniques for use in long-term care. Iterative revisions focused on CCG techniques, factors influencing implementation, and usability. The Knowledgeable Nursing Assistants as Creative Caregivers (KNACC) manual developed from the adapted CCG describes training guidelines and instructions to facilitate CNA use of creative caregiving techniques in direct care., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Context : Family caregivers assume the primary responsibility of assessing and managing hospice cancer patient symptoms while simultaneously managing their own wellbeing and symptoms. Objectives : Describe caregivers' assessment of hospice cancer patient and their own symptoms during the last 60 days of patient life, and assess the relationship between patient and caregiver symptoms over time. Methods : Caregiver symptom report of self and cancer home hospice patient symptom data were collected via telephone in the final 60 days of patient life. Descriptive data on symptom severity and prevalence were summarized. Exploratory Factor Analysis was used to group individual symptoms. Factors representing patient symptoms, caregiver symptoms, and caregiver outlook were analyzed using mixed-effects analysis to determine relationships between factors and change in relationship between factors over time. Results : Data from 61 patient-caregiver dyads are presented. At least 1 day of moderate-to-severe symptoms were reported in the majority of dyads. Significant auto-regressive associations were found, namely previous factor scores for an individual positively predicted the next factor scores for that individual. Previous caregiver report of patient symptoms was also positively associated with the next report of caregiver symptoms; previous caregiver report of their own symptoms were negatively associated with their next report of patient symptoms. Patient and caregiver symptoms and caregiver outlook worsened over time and the relationship between patient and caregiver symptoms strengthened closer to death. Conclusion : Our findings may guide hospice care team responses to caregiver and patient symptoms to promote individual level and unit level functioning.

Knowledgeable Nursing Assistants as Creative Caregivers (KNACC) was developed to train certified nursing assistants (CNAs) to apply arts-based techniques to enhance care and support to older adults in long-term care (LTC) settings. We piloted (n=8) KNACC techniques for use in LTC and assessed its potential for influence on the CNA outcomes of structural empowerment and job satisfaction. During preliminary implementation, CNAs working in memory care units were more open to applying all techniques. The techniques in KNACC have the potential to improve CNA skills in working with long-term care residents., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Family caregivers play an important role in coping with older adult falls; however, their perspectives on fear of older adult falling are lacking from the falls prevention literature. A mixed-method design (N=25 dyads) with interview and survey data examined linguistic characteristics and coping strategies used by older adult and family caregiver dyads to manage fear of older adult falling. Fear of older adult falling consisted of both affective (e.g., worry) and cognitive (e.g., cautious) properties. Family caregivers more frequently used affective words and first-person plural pronouns ("we" language) when talking about fear of older adult falling, while older adults more frequently used cognitive and first-and-second person singular pronouns ("I", "you"). The concept of "being careful" was shared within dyads. However, dyad partners differed in their perspectives of what constituted "being careful" and the possibilities of future falling. Findings suggest that the need for family-centered interventions to prevent falls are needed., Competing Interests: Declaration of Competing Interest The authors report there are no competing interests to declare, (Copyright © 2023 Elsevier Inc. All rights reserved.)

Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.

Context: Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being., Objectives: 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms., Methods: Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes., Results: Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%)., Conclusion: Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices., Methods: Six focus groups conducted with HCT providers ( n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded ( κ = 0.77), aggregated by topical categories, and descriptively summarized., Results: Participants were mostly white and non-Hispanic ( n = 43, 89.6%), cisgender female ( n = 42, 87.5%), heterosexual ( n = 35, 72.9%), and religious ( n = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers., Significance of Results: Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

Plain Language Summary: A Review of the Literature Using the National Institutes of Health, National Institute on Minority Health and Health Disparities (NIMHD) Research Framework to Create a Roadmap of the Studies Investigating Racial and Ethnic Disparities in Excess Weight Retained After Pregnancy., Why Was This Study Done?: Three out of four people who give birth retain excess weight at 1-year post-pregnancy. This is concerning, as weight that is retained following pregnancy is associated with increased risk for the development of disease. People from racial and ethnic minority groups experience weight retention more frequently post-pregnancy. Black and Hispanic/Latina/o/x birthing people are more likely to begin pregnancy overweight or obese. They are also more likely to retain excess weight following pregnancy. Investigating these risks in people from racially/ethnically diverse backgrounds may be an important way to address disparities in excess weight retained post-pregnancy., What Did the Researchers Do?: This review of the literature used a tool called the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework to map the literature to date on racial and ethnic disparities in excess weight retained post-pregnancy., What Did the Researchers Find?: We used the NIMHD Research Framework as a visual guide of the existing research about excess weight retained following pregnancy. Results illustrate the levels and domains at which research has been investigated. These results reveal that efforts have been focused at the individual level, with most attention given to diet and activity. Mapping the literature to the NIMHD Research Framework sheds light on gaps in the research., What Do the Findings Mean?: Mapping the literature has revealed a need for investigations that make connections between the levels and domains of the Framework, so that we may understand underlying factors that contribute to health disparities.

Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.

Objective: This study examined: (1) Differences among sexual and gender minority (SGM) and non-SGM couples' life course stress, posttraumatic growth (PTG), individual, and dyadic wellbeing while facing cancer, (2) The predictive ability of PTG and life course stress on wellbeing for each dyad member, and (3) The predictive ability of dyad-level PTG and dyad-level life course stress on dyadic wellbeing., Methods: Thirty SGM and 30 non-SGM dyads (N = 60) completed measures assessing demographics, life course stress, PTG, individual, and dyadic wellbeing. Regression and multilevel models tested predictive hypotheses., Results: Participants were 56.3 years old on average (SD = 13.6) and were together for 24.2 (SD = 14.9) years. SGM participants reported greater life course stress and higher scores on the Depression, Anxiety, and Stress Scales (DASS-21) than non-SGM participants. A dyad members' higher PTG predicted their partners' higher DASS-21 score, dyad members' higher life course stress predicted their own higher DASS-21 score, and patients' higher life course stress predicted their partners' higher DASS-21 score. Greater dyadic PTG predicted greater dyadic wellbeing., Conclusions: SGM and non-SGM couples experience PTG equally despite SGM couples' greater life course stress and higher DASS-21 scores. Future research is needed to explore how PTG may affect individuals and couples differently., (© 2022 John Wiley & Sons Ltd.)

Purpose: The purpose of this study was to test the feasibility, usability, and acceptability of implementing a web-based method for collecting social network and longitudinal daily interaction data from cancer survivors and their caregivers., Methods: Young adult and sexual/gender minority cancer survivors and their informal caregivers were recruited as dyads. Feasibility data, including enrollment and retention, were captured. Individual social network data were collected at baseline and used to individualize daily electronically delivered surveys assessing characteristics of daily social support-related interactions with identified network members for 14 days. Follow-up questionnaires assessing usability and exit interviews assessing acceptability were completed at the end of the 2-week study period., Results: Fourteen survivor-caregiver dyads (28 individual participants) were enrolled and completed all baseline and final measures. Participants completed 85.2% of daily diary reports and reported excellent usability ratings. Acceptability was also high. In qualitative interviews, participants reported enjoying the daily reflection on social support facilitated by our methods., Conclusions: Our method has been shown to be highly feasible, usable, and acceptable., Implications for Cancer Survivors: Developing better data collection tools can lead to better understanding of the social support cancer survivors and their caregivers receive, and how the social network structure facilitates or creates barriers to accessing this support., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: The purpose of this study was to describe the social support networks and daily support interactions of cancer-affected individuals, including young adult (YA) and LGBTQIA+ survivors and care partners., Methods: Participants were recruited at two United States cancer centers and via social media for a pilot study testing a novel online method for collecting prospective, daily social support interaction data (N=28). All participants were aged 18+; survivors had a current or recent cancer diagnosis and were engaged in treatment and/or services; care partners were identified by the survivors. Enrollment also purposefully targeted YA and LGBTQIA+ survivors. Social network data (up to 10 members) were assessed at baseline. Daily online surveys assessed support interactions between participants and specific network members over 14 days. Descriptive statistics summarized data and explored between-group (YA/non-YA, LGBTQIA+/non-LGBTQIA+) differences in social network characteristics (size, heterogeneity, density, centralization, cohesion) and support interactions (support source and type)., Results: There were no significant differences between YA and non-YA participants on any measures. LGBTQIA+ participants' support networks were less dense (Mdn=0.69 vs. 0.82, p=.02), less cohesive (Mdn=0.85 vs. 0.91,.02), more centered on the participant (Mdn=0.40 vs. 0.24, p=.047), and included more LGBTQIA+ members (Mdn=0.35 vs. 0.00, p<.001). LGBTQIA+ participants reported having more interactions with LGBTQIA+ network members (Mdn=14.0 vs. Mdn=0.00, p<.001) and received significantly more of all types of support from LGBTQIA+ vs. non-LGBTQIA+ members. LGBTQIA+ participants also reported receiving more appraisal support than non-LGBTQIA+ (Mdn 21.64 vs. 9.12, p=.008) including more appraisal support from relatives (Mdn=11.73 vs 6.0, p+.037)., Conclusions: Important information related to support access, engagement, and needs is embedded within the everyday contexts of the social networks of cancer-affected people. Individualized, accessible, and prospective assessment could help illuminate how their "real world" support systems are working and identify specific strengths and unmet needs. These insights would inform the development of more culturally competent and tailored interventions to help people understand and leverage their unique support systems. This is particularly critical for groups like YA and LGBTQIA+ survivors and care partners that are underserved by formal support services and underrepresented in cancer, caregiving, and social support research., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Cloyes, Guo, Tennant, McCormick, Mansfield, Wawrzynski, Classen, Jones and Reblin.)

Purpose: To explore how family/friend young adult cancer caregivers (YACC) used social media for social support in a cross-sectional retrospective mixed-methods study., Methods: Eligible YACC were recruited online and in-person from September 2017 to June 2018, were 18-39 years, used social media weekly, and cared for an adult cancer patient diagnosed 6 months-5 years prior (N = 34). Social media posts were randomly sampled, and content analyzed for five types of social support (emotional, informational, validation, companionship, instrumental). Generalized linear models were fit to estimate changes in the prevalence of social support in posts over the 6-month period following diagnosis., Results: The investigators analyzed N = 2090 social media posts, 26.9% made by YACC, and 73.1% by followers; 36.8% were cancer-related. The most common type of social support for YACC on social media was emotional (63.3%), followed by informational (27.7%), validation (15.3%), companionship (5.7%), and instrumental (1.3%). When controlling for platform (e.g., Instagram), the odds of posts containing emotional support decreased significantly over the first 6 months of caregiving (adjusted odds ratio [aOR]: 0.90, 95%CI 0.85-0.94), while informational (aOR: 1.15, 95%CI 1.09-1.21) and companionship (aOR: 1.12, 95%CI 1.02-1.24) support increased., Conclusions: YACC and their followers share emotional and informational support on social media. Next steps should determine how social media may improve (e.g., social support) or hinder (e.g., misinformation) cancer caregiving throughout survivorship., Implications for Cancer Survivors: Caregivers and patients should be aware of possible fluctuations in social media support after diagnosis and the utility of using social media for different types of social support., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC part of Springer Nature.)

Objective: End-of-life caregiving is associated with poorer mental health compared with other caregiving. The objective of this study was to examine the association between contextual characteristics and appraisal factors on family caregivers' mental health and well-being., Methods: Family hospice caregivers were recruited across four states using a non-probabilistic sampling approach. This study analyzed contextual (demographic, caregiving, economic) and appraisal factors (Medical Outcomes Study Social Support Survey, Zarit Burden Interview) on caregivers' anxiety and depression (Hospital Anxiety and Depression scale, and positive affect and well-being (Positive Affect and Well-being Scale). Hierarchical linear regression models were generated in SPSS version 24., Results: Data from 102 family caregivers were analyzed. On average, participants were 58.93 years of age (SD = 14.24), mostly female (72.55%), spouses/partners (51.96%), and non-Hispanic White (78.43%). Most (75.49%) described their financial situation as comfortable or more than adequate. Younger age (B = -0.11, 95% CI = -0.18 to -0.05) and increased caregiving burden (B = 0.18, 95% CI = 0.09 to 0.27) were associated with increased anxiety, while lower perceived financial adequacy (B = -1.19, 95% CI = -2.07 to -0.32), lower social support (B = -0.04, 95% CI = -0.06 to -0.01), and increased caregiving burden (B = 0.15, 95% CI = 0.08-0.22) were associated with worsened depression. Greater social support (B = 0.10, 95% CI = 0.05-0.14) and lower caregiving burden (B = -0.19, 95% CI = -0.32 to -0.07) were associated with greater positive affect and well-being., Conclusions: Findings suggest significant impact of contextual factors on mental health and well-being, and support the need for holistic assessment of hospice caregivers' wellbeing and programs and policies providing social services and economic support to caregivers., (© 2022 John Wiley & Sons Ltd.)

Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12-17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings' support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.

Purpose: To determine how social media platform and cancer content is associated with the presence of social support in responses to young adult cancer caregivers' (YACC) posts., Design: We retrospectively collected YACC's Facebook and/or Instagram posts and all responses from the first six months of caregiving., Sample: Eligible YACC were 18-39, caring for a cancer patient diagnosed 6 months-5 years prior, spoke English, and used social media weekly., Methods: Social media posts and responses were manually coded for five social support types, then transformed to depict the proportion of responses per post representing each type of support. Using mixed-effects models, we compared the distributions of responses with social support types by platform (Facebook vs. Instagram) and cancer content (no vs. yes)., Findings: More responses contained emotional support on Instagram than Facebook (B = 0.25, Standard Error (SE)=0.09, p = 0.007). More responses with cancer content contained -validation support (B = 0.20, SE = 0.07, p = 0.002), but fewer contained emotional (B=-0.17, SE = 0.07, p = 0.02) and instrumental support (B=-0.06, SE = 0.02, p = 0.001) than posts without cancer content., Conclusions: Studying the responsiveness of social media followers by platform and cancer content provides a foundation for intervention development., Implications for Psychosocial Providers: Emphasizing the suitability of different social media platforms for particular support seeking behaviors is essential.

Objective: Sexual and gender minority (SGM) or LGBTQ+ communities were designated as a National Institutes of Health (NIH) disparity population in 2016, yet research exploring SGM cancer disparities is still limited. Thus, we sought the insight of LGBTQ+ cancer survivors, care partners, and community advocates to learn their recommendations for cultivating competent and inclusive cancer research for LGBTQ+ individuals., Data Sources: We conducted a focus group with LGBTQ+ survivors and care partners of LGBTQ+ survivors who were 18 years or older (N = 8) and interviews with community advocates who are leaders in LGBTQ+ cancer (N = 8). The focus group and interviews were recorded, transcribed, and qualitatively analyzed using an inductive thematic analysis., Conclusion: Qualitative analysis elicited an overarching theme of cultivating competent research for LGBTQ+ individuals, including three subthemes: (i) Cisheteronormativity: An inhospitable ecosystem for LGBTQ+ patients, survivors, and care partners, (ii) Study design: Shifting from invasive 'othering' to a sustainable community-driven climate, and (iii) Recruitment and data collection: Ways to cultivate ecosystem health. Cultivating inclusive, competent research with SGM populations is crucial for addressing health disparities and improving cancer survivors' and care partners' health., Implications for Nursing Practice: Recommendations from LGBTQ+ survivors, care partners, and community advocates ranged from small alterations to systemic changes, highlighting the multifaceted yet feasible process of cultivating LGBTQ+ competent cancer research. The process of cultivating competent research for LGBTQ+ populations will take substantial investment from researchers, providers, and health systems., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Lesbian, gay, bisexual, and transgender (LGBT) older adults are at particular risk for receiving inequitable end-of-life care. Their health care wishes may be ignored or disregarded, their families of choice are less likely to be included in their decision making, and they may experience increased isolation, bullying, mistreatment, or abuse, which ultimately contribute to receipt of poor-quality health care. This is particularly important during sensitive transitions along the care continuum to end-of-life settings; 43% of respondents of a 2018 survey of 865 hospice professionals reported having directly observed discriminatory behavior toward LGBT patients. Lack of visibility and accountability perpetuates vulnerabilities and the potential for discriminatory treatment. Unfortunately, while other areas of health care have prioritized and normalized collecting sexual orientation and gender identity (SOGI) data, hospices do not routinely assess patients' SOGI in the context of end-of-life wishes and decisions. Drawing insight from a sample of 31 in-depth interviews with older LGBT adults, this paper focuses on one participant's story-Esther's. We chose her story to illustrate how care can be compromised at the end of life if an open discussion with patients about what and who matters most to them at the end of life, is avoided., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Family caregivers of home hospice cancer patients often experience burden and distress, which can be mitigated by perceived social support. However, less attention has been paid to the non-family sources of support within social networks, or to how sources of support may also be sources of stress. We describe support and stress in social networks of hospice family caregivers and identify caregiving characteristics associated with classes identified in our data. We collected demographic and psychosocial self-report data from family caregivers providing in-home hospice care for advanced cancer patients (N = 90). Caregivers also reported perceived support and stress from specific family and non-family relationships. We identified three classes with unique patterns of stress and support within caregivers' support networks using a latent class analysis. Classes include: 1) high support, low stress across family and non-family network members ("supportive"; 53% of caregivers); 2) high support, high stress across family and non-family network ("ambivalent maximizers"; 26%); and 3) high support, high stress across family network only ("family-focused ambivalent"; 21%). Caregivers in the ambivalent maximizer class reported more burden than caregivers in the supportive class ( p = .024). This is one of the first studies to systematically explore the role of non-family support, as well as how stress and support co-occur within relationships and across networks. As informal support networks of hospice family caregivers are complex and multifaceted, understanding the patterns of support and stress across various network members is essential to offer services to more effectively manage caregiver burden.

Background: Transitioning from education to practice is stressful for new nurses and those entering new roles and can lead to workforce attrition and burnout. This dynamic is likely complicated when graduates are transitioning to practice during a pandemic., Purpose: The purpose of this study was to describe recent nurse graduates' perceptions of the impact of the COVID-19 pandemic on their transition from education to practice., Methods: We conducted an online survey of BSN, RN-BSN, and DNP students who graduated between December 2019 and April 2020 (n = 82), including demographics, employment information, and free-response questions about the impact of the pandemic on their transition experiences, post-graduation plans, and perceptions of nursing. We used a qualitative descriptive approach to content analysis to synthesize and summarize the data., Results: Participants expressed three overarching concerns: 1) altered plans such as difficulty finding employment; 2) logistical, system-related stressors including licensing delays and chaotic onboarding; and 3) feeling pride in profession despite perceiving ambivalence in public discourse., Conclusion: COVID-19 exacerbated challenges often experienced by new graduates. Common stressors, intensified during the pandemic, could exert long-term effects on the workforce. Educators and healthcare organizations must work to ensure nursing graduates receive the necessary support for a successful transition., (Copyright © 2021 Elsevier Inc. All rights reserved.)

The COVID-19 pandemic has dramatically changed social life. This secondary qualitative analysis aimed to better understand the impact of the pandemic on bereaved hospice family caregivers' experiences of social connection and isolation in a time of social distancing and general anxiety. Six caregivers in 3 states recorded audio diaries (N = 59) between March 13 and May 15, 2020. Caregivers were, on average, 56.80 years old (SD, 14.22; range, 32-67 years old) and consisted of spouses (n = 2), adult children (n = 3), and a sibling (n = 1). Using NVIVO 12, caregiver diaries were coded for (1) "social connection" (n = 23), defined as being able to access or seeking informal or formal social support networks; (2) "isolation" (n = 17), defined as being unable or reluctant to access informal or formal social support networks, or feeling alone; and (3) "bereavement processes" (n = 147), informed by the dual process model of bereavement (restoration and loss-oriented stressors). Content analysis revealed that caregivers were able to connect with others despite physical distancing expectations, expressed loneliness and grief while in isolation, and described moving on in the face of uncertainty. Findings provide insight into how caregivers experienced bereavement during the initial period of the pandemic and highlight implications for hospice bereavement services., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: The objective of this study was to describe young adult cancer caregivers' exposure to cancer misinformation on social media., Methods: Eligible participants were 18 to 39 years old, used social media weekly, and cared for an adult patient with cancer diagnosed 6 months to 5 years before (N = 21). Recruitment occurred from August 2017 to June 2018 in person at oncology clinics and online. Semistructured telephone interviews were recorded and analyzed with grounded theory methods through 2 rounds of coding (κ = 0.88)., Results: Caregivers were on average 29.1 years old, female (76.2%), non-Hispanic White (90.5%), college educated (57.1%), and caring for a spouse/partner (47.6%). Caregivers were exposed to a variety of cancer misinformation topics; some felt uncertain in their caregiving ability when confronted with cancer misinformation. Caregivers crosschecked online sources and consulted trusted individuals (eg, family, friends, and health care providers) to determine the quality of cancer-related information and manage cancer misinformation., Conclusions: Cancer misinformation on social media may influence caregiving behaviors and decision making. Whether caregivers correctly and consistently identify cancer misinformation on social media is unknown. Supporting digital literacy to mitigate cancer misinformation on social media may improve young cancer caregivers' access to credible cancer information., Lay Summary: Cancer misinformation on social media affects young adult cancer caregivers' perceptions of their social support network. Caregivers differ in how they evaluate cancer information for quality and in how this information influences their health behaviors and caregiving decisions., (© 2020 American Cancer Society.)

Purpose of Review: Sexual and gender minority (SGM) cancer survivors (post-diagnosis to end-of-life) can face inadequate services along the cancer care continuum, including palliative and end-of-life (EOL) care. A growing literature base calls for more research on factors influencing palliative and EOL care access, outcomes, and distinct needs of SGM cancer survivors and caregivers. We analyzed peer-reviewed articles published 2015-present to identify trends., Recent Findings: Ten articles were SGM-focused or inclusive, cancer-focused, and included substantive discussion of palliative and/or EOL care. Four were research studies (three case studies and one qualitative interview study) and six were literature reviews. Recurrent topics included disparities in cancer risk, access, and care; essential cultural and clinical competencies; and need for professional and organizational standards and policies addressing interpersonal and institutional discrimination and inclusion. Provision of equitable, competent palliative and EOL care depends on continued advancements in research, translated into person-centered approaches to care. We discuss implications of findings for improving palliative and EOL care for SGM cancer survivors.

Background: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share., Aim: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives., Design: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions., Setting/participants: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age., Results: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions., Conclusions: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.

Background: The Centers for Disease Control and Prevention (CDC) in United States initially alerted the public to three COVID-19 signs and symptoms-fever, dry cough, and shortness of breath. Concurrent social media posts reflected a wider range of symptoms of COVID-19 besides these three symptoms. Because social media data have a potential application in the early identification novel virus symptoms, this study aimed to explore what symptoms mentioned in COVID-19-related social media posts during the early stages of the pandemic., Methods: We collected COVID-19-related Twitter tweets posted in English language between March 30, 2020 and April 19, 2020 using search terms of COVID-19 synonyms and three common COVID-19 symptoms suggested by the CDC in March. Only unique tweets were extracted for analysis of symptom terms., Results: A total of 36 symptoms were extracted from 30,732 unique tweets. All the symptoms suggested by the CDC for COVID-19 screening in March, April, and May were mentioned in tweets posted during the early stages of the pandemic., Discussion: The findings of this study revealed that many COVID-19-related symptoms mentioned in Twitter tweets earlier than the announcement by the CDC. Monitoring social media data is a promising approach to public health surveillance., (© 2020 Wiley Periodicals LLC.)

Objective: Hospice interdisciplinary team (IDT) providers' attitudes toward sexual and gender minority (SGM) patients and family caregivers impacts quality of care and end-of-life outcomes. This study assessed hospice IDT provider attitudes toward SGM patients and caregivers and identified demographic predictors., Methods: Hospice IDT providers (N = 122) completed an adapted 11-item scale measuring attitudes toward SGM hospice patients and caregivers. Descriptive statistics, confirmatory factor analysis, and regression models were conducted., Results: The hospice-adapted Attitudes Toward LGBT Patients Scale (ATLPS) demonstrated acceptable Cronbach's alpha (0.707). Total scores ranged from 32 to 55 (M = 47.04, SD = 5.64) showing that attitudes were generally positive. Being religious (B=-3.169, p = 0.008) was associated with more negative attitudes, while higher education (B = 1.951, p = 0.002) and time employed in hospice agency (B = 0.600, p = 0.028) were associated with more positive attitudes., Conclusion: This is among the first studies to assess SGM-specific hospice IDT attitudes. Participants had relatively positive attitudes, influenced by religious beliefs, clinical experience, and education. CFA results suggest the need for better instruments to measure this complex construct., Practice Implications: Education incorporating evidence of disparities, life-course perspectives, and end-of-life experiences of diverse cohorts of SGM patients and families may build on hospice IDT members' experience and training by influencing attitudes, reducing bias and improving competency., (Copyright © 2020. Published by Elsevier B.V.)

Aims: (1) Determine the content validity of the Fear of Older Adult Falling Questionnaire-Caregivers using a panel of gerontological experts and a target sample of family caregivers (Stage 1) and (2) Examine the response patterns of the Fear of Older Adult Falling Questionnaire-Caregivers and compare it with older adult version of Fear of Falling Questionnaire Revised using graded-response modelling (Stage 2)., Design: Cross-sectional mixed-method design., Methods: Five content experts and 10 family caregivers were involved in the Stage 1 study and 53 family caregiver-older adult dyads (N = 106) were included in the Stage 2 study. The content-validity index and graded-response modelling were used to analyse data., Results: Among experts, the Fear of Older Adult Falling Questionnaire-Caregivers content-validity index for relevancy, importance, and clarity of individual items and total scale ranged from 0.60-1.00 and from 0.77-0.87, respectively. Among family caregivers, the ratings of the item and scale level content-validity index for relevancy, importance, and clarity ranged from 0.90-1.00 and from 0.95-0.97, respectively. Combining feedback from both groups, we revised one item. Subsequently, the graded-response modelling revealed that a 1-factor, 3-item version of the Fear of Older Adult Falling Questionnaire-Caregivers had acceptable psychometric properties., Conclusions: The brief 3-item version of the Fear of Older Adult Falling Questionnaire-Caregivers is promising for assessing caregivers' fear of their older adult care recipient falling., Impact: A significant concern for family caregivers is fearing that older adult care recipients will fall, but a lack of validated measures limits the study of this phenomena. A 3-item version of the Fear of Older Adult Falling Questionnaire-Caregivers has the potential to identify family caregivers with high fear of older adult falling so that fall risk can be appropriately assessed and addressed., (© 2020 John Wiley & Sons Ltd.)

Objective: To describe how young adult cancer caregivers (YACC) use social media for social support during a cancer experience., Methods: Eligible YACC were 18 to 39 years, used Facebook and/or Instagram at least once per week, and cared for an adult cancer patient diagnosed 6 months to 5 years prior (N = 34). Recruitment of a cross-sectional sample occurred through oncology clinics in Utah and online advertising by caregiving and cancer organizations from September 2017 to June 2018. Semi-structured telephone interviews were recorded, transcribed, iteratively coded, and qualitatively analyzed, yielding four categories concerning how YACC use social media., Results: Caregivers were most commonly spouses aged 29 years on average (range 21-38); cancer patients were 37 years (range 19-76). Analysis yielded four distinct yet related categories: Category 1: Posting about cancer on social media often begins as a strategy for YACC to efficiently provide updates about the cancer patient. Category 2: Caregivers who actively post on social media experience a variety of different functional social supports to which they otherwise would not have access. Category 3: Posting about cancer online presents an opportunity for negative consequences. Category 4: Potential for negative consequences influences how some caregivers use social media., Conclusions: Supportive services, including social media-based supports, are needed for YACC in formats that are convenient for them as they balance their caretaking duties with their daily lives., (© 2020 John Wiley & Sons, Ltd.)

Informal or family caregivers are a substantial component of the U.S. health care system and are essential for addressing the needs of a growing number of U.S. citizens who are aging, managing chronic or disabling conditions, or facing life-limiting illness. The purpose of this study was to examine the representation of family caregiving in a set of foundational documents that shape nursing education, practice standard, and related policy. Electronic copies of these "canonical" documents were systematically mapped for the appearance of language, terms, and concepts related to family caregiving. Additionally, relevant passages of caregiving-related text were coded for content, phrasing, and meaning. Few meaningful references were found, exposing how the nursing profession may also be perpetuating the role of the family caregiver as unsupported and invisible. When present in the documents, family caregivers were generally situated as background or context for patient care, often as objects and less frequently as agents with influence. These findings are considered within the context of the emerging caregiving public health crisis and family caregiver health outcomes, family caregiver integration into the health care team, nursing education and practice standards, nursing leadership and workforce development, and nursing's policy advocacy role., (Copyright © 2019 Elsevier Inc. All rights reserved.)

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support., Method: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups., Results: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05)., Significance of Results: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Acute care nurses continue to rely on personally created paper-based tools-their "paper brains"-to support work during a shift, although standardized handoff tools are recommended. This interpretive descriptive study examines the functions these paper brains serve beyond handoff in the medical oncology unit at a cancer specialty hospital. Thirteen medical oncology nurses were each shadowed for a single shift and interviewed afterward using a semistructured technique. Field notes, transcribed interviews, images of nurses' paper brains, and analytic memos were inductively coded, and analysis revealed paper brains are symbols of patient and nurse identity. Caution is necessary when attempting to standardize nurses' paper brains as nurses may be resistant to such changes due to their pride in constructing personal artifacts to support themselves and their patients.

Purpose: Social media (SM) is a burgeoning source of social support for young adults (YAs). We explored the language used to communicate about YA cancer on Instagram and for indicators of social support (i.e., number of likes and comments)., Methods: Instagram posts using #youngadultcancer were randomly selected (N = 50). Text and hashtags were collected, and posts were coded for gender (female and male), treatment status (active treatment and survivorship), type of user (individual and organization), and caregiver status (yes and no). Indicators of social support, valence (e.g., positive vs. negative terms), and lexical content (e.g., emotional terms and pronouns) were measured using Yoshikoder and Linguistic Inquiry Word Count and compared by gender, treatment status, type of user, and caregiver status., Results: Survivors' posts had more likes compared to those in active treatment (mean: 54.5 vs. 32.3, p = 0.03). Individuals' posts had more comments than those of organizations (mean: 5.3 vs. 1.2, p = 0.01). More positive (30%) than negative (13%) terms were used by survivors (p < 0.01) and those in active treatment (20% vs. 9%, p = 0.04). Individuals' used more positive than negative language (p < 0.01), whereas organizations used equally positive and negative terms. Survivors used more emotional terms (79.6% vs. 34.9%, p < 0.01) and fewer pronouns (mean: 39.5 vs. 71.7, p = 0.01) than those in active treatment. Organizations (71.0%) used more emotional terms than individuals (55.9%, p = 0.03)., Conclusions: We describe how Instagram users communicate about YA cancer and whether the language they use garners social support. Studying online language use may help YA patients, caregivers, and organizations use SM to gain social support.