Cancer Survivors' and Care Partners' Audio Diaries on Stress and Social Support Resources During the COVID-19 Pandemic.

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 (χ2 = 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.

LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy.

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.

The Burden of having to Wonder: Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers.

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.

Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries.

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.

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

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.

Online Experiences, Internet-Fostered Connection, Resilience, and Adjustment Among Adolescent Siblings of Children With Cancer.

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.

Caregiver Burden and Workplace Productivity Among Hospice Cancer Caregivers.

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.

Experiences of Homeless Recipients of Social Model Hospice Care: A Photovoice Exploration.

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.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

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.

Engaging Sexual and Gender Minority Older Adults to Elicit Concerns and Recommendations for Communicating Care Preferences in Long-Term Care: Focus Group Findings.

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.

Racial and ethnic disparities in postpartum weight retention: A narrative review mapping the literature to the National Institute on Minority Health and Health Disparities Research Framework.

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.

Hospice Caregivers' Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support.

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.

The development of knowledgeable nursing assistants as creative caregivers (KNACC).

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.

Pilot testing the knowledgeable nursing assistants as creative caregivers (KNACC) guide.

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.

"Being careful": How much caution is enough? The relational context of fear of older adult falling in older adult-family caregiver dyads.

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.

Moderating Effect of Work on Burden and Hospice Family Caregiver Well-Being.

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 (ß = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (ß = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (ß = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (ß = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (ß = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (ß = 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.

Technology-Mediated Support Among Siblings of Children with Cancer.

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.

Preparing for the Future While Living in the Present: Older Adults' Experiences Creating a Legacy of Values.

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.

Home Hospice Family Caregivers' Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms.

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.

"We Treat Everyone Equally": Hospice Care Team Members' Language Use Regarding Sexual and Gender Minority Patients and 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.