The association of religion with advance care planning.

Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion-personal religious beliefs and formal religion practices-may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God's role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God's role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.

Establishing a Spanish-Focused Advance Care Planning Educational Session for Latina Breast Cancer Survivors.

Minoritized groups including Latinos are less engaged in awareness and discussion of advance care planning (ACP) due to the United States English-dominated healthcare system that contributes to systemic inequities related to language and cultural barriers. Explicit interventions, such as a sole Spanish-speaking educational session, may begin discussions of ACP among Latina breast cancer survivors. However, what constitutes a culturally sensitive Spanish-language ACP educational session is currently unknown. To address this need, this current project (1) presented a nurse-led ACP educational session and (2) held a focus group to assess the acceptability of the Spanish-focused ACP educational session to a Spanish-speaking group of Latina breast cancer survivors. Thematic analysis revealed four themes: (1) familial involvement, (2) need for advance care planning education, (3) addressing language and cultural barriers, and (4) culturally sensitive and informative resources. Features of a culturally sensitive Spanish-focused ACP educational session were identified and found to reduce current barriers that hinder ACP conversations in Latina breast cancer survivors.

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.

Beyond Patient-Provider Relationships: Expanding the Roles and Boundaries of Families during Patient End-of-Life.

Role conflict and strain occur when healthcare providers are required to cross boundaries, either voluntarily or involuntarily, to meet the needs of their dying patients. This research is an unobtrusive digital ethnography of a publicly accessible online forum for healthcare providers (N = 242 posts); it explores the boundaries set by families and healthcare providers, and identifies how healthcare providers navigate and which circumstances require them to sometimes cross these professional boundaries. Results indicate that patient-and-family-centered care may not be fully achieved due to the ambiguity in the expected roles played by both families and healthcare providers during patient death and dying. Grounded in data, an expanded model of the therapeutic alliance, which includes the family, is suggested.

"Doing" healthcare at end-of-life: Identity tensions, negotiations, and conflicts.

Observing how healthcare providers deal with death and dying, in terms of "doing" identity, allows us to explore how they cope with patient end-of-life (EOL) and highlights how the professional identity breaks down while managing patient death and dying. We conducted a digital ethnography of a publicly-accessible online forum for healthcare professionals. Providers' personal experiences with patient death and dying were interpreted through internalized values associated with their professional identity, which when dealing with EOL are challenged and must be negotiated. Training and support are needed to better equip providers with the skills and tools needed at EOL.

Illness, Social Disadvantage, and Sexual Risk Behavior in Adolescence and the Transition to Adulthood.

This study investigated the influence of illness on sexual risk behavior in adolescence and the transition to adulthood, both directly and through moderation of the impact of social disadvantage. We hypothesized positive effects for social disadvantages and illness on sexual risk behavior, consistent with the development of faster life history strategies among young people facing greater life adversity. Using the first two waves of the National Longitudinal Study of Adolescent to Adult Health, we developed a mixed-effects multinomial logistic regression model predicting sexual risk behavior in three comparisons: risky nonmonogamous sex versus safer nonmonogamous sex, versus monogamous sex, and versus being sexually inactive, by social characteristics, illness, interactions thereof, and control covariates. Multiple imputation was used to address a modest amount of missing data. Subjects reporting higher levels of illness had lower odds of having safer nonmonogamous sex (OR = 0.84, p < .001), monogamous sex (OR = 0.82, p < .001), and being sexually inactive (OR = 0.74, p < .001) versus risky nonmonogamous sex, relative to subjects in better health. Illness significantly moderated the sex (OR = 0.88, p < .01), race/ethnicity (e.g., OR = 1.21, p < .001), and childhood SES (OR = 0.94; p < .01) effects for the sexually inactive versus risky nonmonogamous sex comparison. Substantive findings were generally robust across waves and in sensitivity analyses. These findings offer general support for the predictions of life history theory. Illness and various social disadvantages are associated with increased sexual risk behavior in adolescence and the transition to adulthood. Further, analyses indicate that the buffering effects of several protective social statuses against sexual risk-taking are substantially eroded by illness.

Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement.

OBJECTIVE: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement. METHODS: This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death. RESULTS: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement. CONCLUSIONS: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time.

A Comparison of the Influence of Anticipated Death Trajectory and Personal Values on End-of-Life Care Preferences: A Qualitative Analysis.

OBJECTIVES: We examined anticipated preferences for end-of-life (EOL) care in healthy older adults in the context of various terminal disease scenarios to explore the relationship between personal values and diseases and conditions that would influence EOL care choices. METHODS: Qualitative Descriptive Analysis was used to derive themes and the relationship between EOL preference themes and personal value themes in 365 respondents in a national sample of healthy older adults who completed a survey on their anticipated preferences for end-of-life (EOL) care. RESULTS: Reluctance to burden close others was the most frequently voiced personal value across all conditions affecting EOL preferences, followed by the personal value of quality of life. Concern about whether one's wishes would be honored was more commonly voiced in the context of hypothetical, prospective terminal cancer than in neurological conditions. Respondents who voiced desire for autonomy in how they would die clearly attributed extreme pain as the primary influence on EOL preferences. CONCLUSIONS: Comprehensive assessment of patient personal values should include consideration of particular chronic disease scenarios and death trajectories to fully inform EoL preferences. CLINICAL IMPLICATIONS: Because personal values do influence EOL preferences, care should be taken to ascertain patient values when presenting diagnoses, prognoses, and treatment options. In particular, patients and families of patients with progressive neurological diseases will likely face a time when the patient cannot self-represent EOL wishes. Early discussion of values and preferences, particularly in the context of cognitive disease is vital to assure patient-directed care.

Cancer Caregivers' Preparedness for Loss and Bereavement Outcomes: Do Preloss Caregiver Attributes Matter?

Past studies examining the relationship between preparedness for loss and bereavement outcomes among caregivers of spouses/partners with life-limiting illness did not adequately account for preloss caregiver attributes that could potentially confound the relationship. Using a sample of spouse/partner cancer caregivers (N = 226), we examined how preloss caregiver attributes were associated with how prepared one felt for loss and their role in the relationship between preparedness and later bereavement outcomes. Nearly half reported they were not emotionally prepared, and 35% were not prepared for the practical challenges associated with the loss. Although attributes such as depression, anxiety, competence in daily activities, and financial adequacy were associated with both preparedness and bereavement outcomes, regression analyses revealed that preparedness remained the strongest predictor in all models. We suggest that early interventions enhancing caregivers' preparedness for loss may hold considerable promise for improved bereavement outcome.

Variation in reproductive outcomes of women with histories of bulimia nervosa, anorexia nervosa, or eating disorder not otherwise specified relative to the general population and closest-aged sisters.

OBJECTIVE: This study seeks to examine the long-term reproductive consequences of eating disorders (ED), to assess variation in reproductive outcomes by ED type, and to examine reproductive differences between women with previous ED diagnosis and their discordant sisters. METHOD: Using a sample of women with previous ED diagnosis generated by the Utah Population Database, this study compares the fecundity (parity) and age at first birth of women by ED subtype (bulimia nervosa [BN], anorexia nervosa [AN], and ED not otherwise specified [EDNOS]) (n = 1,579). We also employed general population match case-control, and discordant sibling pair analyses, to estimate the magnitude of association between EDs and reproductive outcomes. RESULTS: Women previously diagnosed with AN or EDNOS experienced delayed first birth (HRR = 0.33, HRR = 0.34, respectively) and lower parity (IRR = 0.19, IRR = 0.22, respectively) relative to BN (p < .05), the general population (p < .05), and closest-aged sisters (p < .05). Women previously diagnosed with BN experienced more moderate reductions and delays to their reproduction, and had similar reproductive outcomes as their discordant sisters. DISCUSSION: Clinicians should consider ED type and family fertility histories when addressing the long-term reproductive health needs of women with prior AN, BN, or EDNOS diagnosis. Women previously diagnosed with AN or EDNOS likely experience the greatest reductions and delays in reproduction across their lifespan. Reproductive health screenings may be especially critical for the wellbeing of women with a history of AN or EDNOS.

The influence of adolescent eating disorders or disordered eating behaviors on socioeconomic achievement in early adulthood.

OBJECTIVE: Much research documents the etiology and health consequences of adolescent eating disorders (ED), but very little is known about the long-term effects of EDs on the transition to adulthood. This study explores gender differences in the influence of EDs or disordered eating behaviors (DEB) on measures of socioeconomic independence in early adulthood. METHOD: Using the National Longitudinal Study of Adolescent Health (Add Health), this study compares individuals who self-identified as have been diagnosed with an ED or engaged in DEBs in late adolescence to those without ED or DEB on three measures of socioeconomic independence during early adulthood, including educational attainment, income, and likelihood of owning a home. This study uses multiple regression techniques and attempts to account for early-life conditions and health outcomes associated with EDs and DEBs. RESULTS: For females, ED or DEB in late adolescence had a statistically significant, negative association with educational attainment (coefficient = -0.20, p = .05), personal income (coefficient = -0.12, p < .05) and odds of owning a home (odds ratio = 0.73, p < .02) in early adulthood. For males, ED or DEB was not associated with socioeconomic attainment. DISCUSSION: Our findings suggest that EDs and DEBs are negatively associated with socioeconomic achievement during early adulthood for females, but not for males. EDs or DEBs during adolescence may set individuals on a different trajectory whereby they do not have the same life chances or opportunities for success in adulthood. These results confirm the public health message that EDs or DEBs have lasting negative consequences for women.

Missed Opportunity: Hospice Care and the Family.

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

Using Digital Inequality Framework to Evaluate a Technology-Delivered Intervention for Caregivers: Age, Education, and Computer Proficiency.

Objectives: Using "digital inequality" as a conceptual framework, this study evaluates the feasibility and usability of a technology-delivered intervention (an "app") for Alzheimer's and related dementia family caregivers. Time for Living and Caring (TLC) is an on-line intervention that provides virtual coaching and self-administered education and resources. Methods: A sample of family caregivers (n = 163) used the tool for 16 weeks, which included completing the Computer Proficiency Questionnaire (CPQ-12) at baseline. Analyses investigate the relationship between age, CPQ scores, intervention use, appraisal, and caregiver outcomes. Results: Age was inversely associated with CPQ; however, CPQ scores did not have a significant relationship with participant's self-perceived benefits or intervention appraisal. Computer Proficiency Questionnaire scores provided insight regarding research feasibility, with lower scores associated with greater odds of discontinuing engagement. Discussion: CPQ-12 scores can be used as a screening tool to identify those who may need additional support to engage with and benefit from technology-delivered interventions.

Evaluating the Efficacy of Time for Living and Caring: An Online Intervention to Support Dementia Caregivers' Use of Respite.

Background and Objectives: Respite, defined as time away from caregiving, is the most requested type of caregiver support. Time for Living and Caring (TLC) is a virtual coaching "app" that helps caregivers schedule and plan their respite time-use. The objectives of this analysis are: (1) to assess the efficacy of the TLC intervention on respite time-use and on caregiver well-being and (2) to identify the key features of the intervention that serve as the likely mechanism of action. Research Design and Methods: A sample of dementia caregivers (n = 163, 79% female, 84% White, 6% Hispanic, average age 62) were randomized into one of two intervention delivery methods. Intervention efficacy was evaluated using pre/post-comparisons of respite time-use and an additive "dosing" model that estimated unique parameters associated with the exposure to each specific intervention component. Results: Both immediate and delayed-attention groups reported increased respite time. They also improved in their ability to plan and perceive benefit from their respite time-use over the 16-week intervention period. At 8 weeks, the immediate group did not change in anxiety, whereas the delayed group worsened (p < .001). At 16 weeks, the groups were similar in their anxiety levels. By the 20-week follow-up period, when neither group had access to TLC, both experienced an increase in anxiety. Discussion and Implications: TLC is a promising intervention that may support caregivers' well-being, by helping them schedule and plan their respite to maximize its benefit. The provision of weekly coaching seems to be the intervention component (mechanism) associated with caregiver outcomes. Clinical Trial Registration: NCT03689179.

Comparison of recruitment methodologies for clinical trials: Results from the time for living and caring (TLC) intervention study.

BACKGROUND: Recruiting participants for research studies is a critical yet challenging task. Community-engaged recruitment strategies have gained prominence as effective means to engage diverse populations and ensure the representativeness of study samples. This case study aims to investigate the cost and effectiveness of various recruitment methods in enhancing research participation. METHODS: A comparative approach was employed to assess the outcomes of five different recruitment strategies used in the Time for Living & Caring (TLC) research study. Data on recruitment success, participant demographics, and retention rates were collected and analyzed using descriptive statistics, including ANOVA and Chi-squares, to statistically compare the outcomes associated with 5 different recruitment methodologies. The recruitment methodologies included two community-engaged strategies (community partner referral and community-based recruiters), a clinical database, social media, and word-of-mouth referral. CONCLUSION: The meta-data used to build this methodological case study describe different recruitment methodologies that may be used for clinical trials. This data-driven evaluation provides examples and considerations for researchers when developing budgets and proposals for future clinical trials. The primary finding is that there are tradeoffs in terms of cost, time, labor, and ultimately the representativeness of the sample, based on the type of recruitment methodology chosen.

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.

Advance Care Planning in the Context of Dementia: Defining Concordance.

BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis.

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.