Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters.

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

Disparities and determinants of place of death: Insights from the Utah Population Database.

To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life.

Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers.

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.

What contextual factors account for anxiety and depressed mood in hospice family caregivers?

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.

A scoping review of nurse-led advance care planning.

BACKGROUND: Advance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care. PURPOSE: This project reviewed and synthesized literature on nurse-led ACP training models. METHODS: A scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes. FINDINGS: Of 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model. DISCUSSION: Nurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.

Cross-cultural adaptation of a Spanish version of a previously validated HPV survey that evaluates dental students' knowledge, perception and clinical practices in Latin America.

BACKGROUND: The global incidence of oropharyngeal cancer (OPC) is increasing. Dental professionals play a key role in the detection of oral lesions that could lead to cancer. However, scientific-based HPV-OPC visual inspection guidelines are underdeveloped and HPV knowledge and awareness has been reported to be low among dental students and professionals. The present study adapted and performed pretesting of a multi-scale survey evaluating knowledge, perceptions, and clinical practices regarding HPV and HPV-OPC for Latin American Spanish-speaking populations. METHODS: A previously developed questionnaire for English-speaking dental students was translated to Spanish. The questionnaire was administered to first year dental students at two Latin American universities with dental programs. Internal consistencies were measured using Cronbach Alpha. Analyses were conducted in SAS Version 9.4. RESULTS: Data from a total of 114 students, a majority of the which were female (61%), and Hispanic/Latino(a)/Spanish (91%). The HPV, HPV-OPC, and HPV vaccine knowledge subscales demonstrated good internal consistency, the Cronbach's alpha was 0.83, 0.75, and 0.86 respectively. The Barriers subscale had a Cronbach's alpha of 0.93, showing excellent internal consistency. The Clinical Procedures subscale, focused on factors surrounding dental students' hypothetical clinical practice procedures, had a Cronbach's alpha of 0.86. The Scope of Practice scale had a Cronbach's alpha of 0.93. CONCLUSIONS: Ultimately, this survey demonstrated reliability and applicability for the assessment of dental students' knowledge, perceptions, and clinical practices regarding HPV and HPV-OPC in Latin America.

Size and composition of family networks of decedents: A nationwide register-based study.

BACKGROUND: Seriously ill individuals rely heavily on family caregivers at the end of life. Yet many do not have family support. AIM: To characterize the size and composition of decedents' family networks by cause of death, demographic, clinical, socioeconomic, and geographic characteristics. DESIGN: A cross-sectional population-level study with data collected from nation-wide registers. SETTING/PARTICIPANTS: All adults in Denmark born between 1935 and 1998 who died of natural causes between 2009 and 2016 were linked at the time of death to living adult spouses/partners, children, siblings, parents, and grandchildren. RESULTS: Among 175,755 decedents (median age: 68 years, range: 18-81 years), 61% had a partner at the time of death and 78% had at least one adult child. Ten percent of decedents had no identified living adult family members. Decedents with family had a median of five relatives. Males were more likely to have a spouse/partner (65%) than females (56%). While 93% of decedents dying of cancer had adult family, only 70% of individuals dying of dementia had adult family at the time of death. The majority of cancer decedents co-resided or lived within 30 km of family (88%), compared to only 65% of those dying from psychiatric illness. CONCLUSIONS: While the majority of adults had an extensive family network at the time of death, a substantial proportion of decedents had no family, suggesting the need for non-family based long-term service and support systems. Assessment of family networks can expand our understanding of the end-of-life caregiving process and inform palliative care delivery.

Patterns of stress and support in social support networks of in-home hospice cancer family caregivers.

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.

A Multi-state Evaluation of Oral Health Students' Knowledge of Human Papillomavirus-Related Oropharyngeal Cancer and HPV Vaccination.

Human papillomavirus-related oropharyngeal cancers (HPV-OPCs) are on the rise, yet HPV knowledge among dental professionals remains low. The purpose of this multi-state study was to examine sociodemographic factors associated with final year dental hygiene (DH), third year dental (DS3), and fourth year dental (DS4) students' knowledge regarding HPV, HPV-OPC, and HPV vaccination. Twenty dental programs in the USA were approached in the implementation phase to complete an online, 153-item, self-administered questionnaire that was developed and tested in a previous study. Descriptive statistics and chi-square analyses were conducted in SAS version 9.4 to examine the relationship between sociodemographic variables with HPV, HPV-OPC, and HPV vaccination knowledge levels. This study included the participation of students from 15 dental programs (n = 380) with an overall response rate of 28%. Although the results cannot be generalized to the entire population of dental students in the USA, most students had inadequate overall HPV knowledge (65%), HPV-OPC knowledge (80%), and HPV vaccination knowledge (55%). While all student groups displayed adequate general HPV knowledge levels (≥ 70% correct responses), gender, racial, religious, age, and regional differences were observed. Future dental professionals need to have adequate levels of HPV knowledge to aid in reducing the HPV-OPC burden. This study identified sociodemographic factors related to lower knowledge of HPV, HPV-OPC, and HPV vaccination, and highlights groups of students with greater needs for HPV education. This study provides a foundation for future research and interventions to be developed. Dental institutions can use findings to strengthen curricula development.

Palliating Serious Illness During Disasters and Public Health Emergencies.

ABSTRACT: The increase in disasters and public health emergencies in recent years is a serious public health concern. The needs of suffering victims can be multifaceted, particularly the needs of those who are from systematically marginalized populations. Palliative care nurses play a vital role in mitigating the suffering of those affected by these events. Despite the acute need, there is a lack of nurses who specialize in hospice and palliative care and generalist nurses are not sufficiently prepared to provide palliative care during disasters and public health emergencies. Nurses and nursing students should use national and global resources and training opportunities to hone their palliative care skills as well as learn self-care skills to increase their resiliency. Outcomes from research and collaborative efforts should be used to educate the future nursing workforce and advocate for equitable delivery of quality palliative care for all people who are affected by disasters and public health emergencies.

Incident Diabetes among Older Asian, Native Hawaiian and Pacific Islander Women with Breast Cancer.

BACKGROUND: The risk of diabetes among Asian, Native Hawaiian and Pacific Islander (ANHPI) women after breast cancer is unclear. This study estimated the risk of incident type II diabetes in older ANHPI and older Non-Hispanic White (NHW) women with breast cancer from the US National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Medicare linked claims. METHODS: A matched cohort of 7,122 older ANHPI and 21,365 older NHW women with breast cancer were identified from the SEER-Medicare between 2000 and 2017. To assess the risk of incident type II diabetes after breast cancer, hazard ratios (HRs) and 95% confidence intervals (95%CI) were estimated using Cox proportional hazards model. RESULTS: During the mean 8 years of follow-up, 9.3% of older women with breast cancer developed incident type II diabetes. In comparison with NHW women, all older ANHPI women without known history of diabetes had an elevated risk of diabetes after breast cancer; with strong associations observed for Pacific Islander (HR = 3.09, 95%CI 1.43, 6.67), Vietnamese (HR = 2.12, 95%CI 1.33, 2.36), and Filipino (HR = 2.02, 95%CI 1.57, 2.59) women with breast cancer, adjusting for potential confounders. Among ANHPI women with breast cancer, more baseline comorbidities and obesity were risk factors for developing incident type II diabetes. CONCLUSION: ANHPI women diagnosed with breast cancer had an elevated risk of type II diabetes compared with older NHW women with breast cancer. Routine monitoring and management of diabetes are warranted in older ANHPI women with breast cancer.

Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families.

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.

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.

Incident Cardiovascular Disease Risk among Older Asian, Native Hawaiian and Pacific Islander Breast Cancer Survivors.

BACKGROUND: Cardiotoxicity among breast cancer survivors is associated with chemotherapy and radiation therapy. The risk of cardiovascular disease (CVD) among Asian, Native Hawaiian and Pacific Islander (ANHPI) breast cancer survivors in the United States is unknown. METHODS: We used the SEER-Medicare linked database to estimate the risk of CVD among older breast cancer survivors. International Classification of Disease diagnosis codes were used to identify incident CVD outcomes. Cox proportional hazards models were used to estimate HRs and 95% confidence intervals (CI) comparing ANHPI with Non-Hispanic White (NHW) patients with breast cancer for CVD, and among ANHPI race and ethnicity groups. RESULTS: A total of 7,122 ANHPI breast cancer survivors and 21,365 NHW breast cancer survivors were identified. The risks of incident heart failure and ischemic heart disease were lower among ANHPI compared with NHW breast cancer survivors (HRheart failure, 0.72; 95% CI, 0.61-0.84; HRheart disease, 0.74; 95% CI, 0.63-0.88). Compared with Japanese patients with breast cancer, Filipino, Asian Indian and Pakistani, and Native Hawaiian breast cancer survivors had higher risks of heart failure. ischemic heart disease and death. Among ANHPI breast cancer survivors, risk factors for heart failure included older age, higher comorbidity score, distant cancer stage and chemotherapy. CONCLUSIONS: Our results support heterogeneity in CVD outcomes among breast cancer survivors among ANHPI race and ethnicity groups. Further research is needed to elucidate the disparities experienced among ANHPI breast cancer survivors. IMPACT: Filipino, Asian Indian and Pakistani, and Native Hawaiian patients with breast cancer had higher risks of heart failure, ischemic heart disease and death among ANHPI patients with breast cancer.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

"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.

Young Adult Cancer Care Partners: A Theoretical Description of an Emerging Population with Unique Needs.

As the U.S. population's demographics shift, young U.S. adults are increasingly engaged in informal caregiving for aging generations. Yet, there is little research on the unique experiences and needs of young adults who take on caregiving roles for adult cancer patients. Herein we demonstrate through a theoretical description that young adult cancer care partners deserve distinct recognition in the cancer control continuum given the psychological, physical, financial, and social features unique to their cancer experience.

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.

End-of-Life Experiences Among "Kinless" Older Adults: A Nationwide Register-Based Study.

Background: The population of older adults who are unpartnered and childless (i.e., "kinless") is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of "kinless" older adults. Objectives: To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death). Design: The study design is a cross-sectional population-based register study of the population of Denmark. Subjects: Participants include all adults age 60 years and older who died of natural causes in Denmark from 2009 to 2016 (n = 137,599 decedents). Results: "Kinless" older adults (reference = has partner, has child) were the least likely group to visit the hospital (two or more times; odds ratio [OR] = 0.74, confidence interval [CI] = 0.70-0.77), emergency department (one or more times; OR = 0.90, CI = 0.86-0.93), and intensive care unit (one or more times; OR = 0.71, CI = 0.67-0.75) before death. Conclusions: "Kinless" older adults in Denmark were less likely to experience medically intensive care at the EoL. Further research is needed to understand factors associated with this pattern to ensure that all individuals receive high quality EoL care regardless of their family structure and family tie availability.

Family Caregiver Reports of Their Own and Patient Symptoms in Cancer Home Hospice Approaching End-of-Life.

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.