End-of-Life Doulas: A Systematic Integrative Review and Redirection.

Background And Objectives: End-of-life (EOL) doulas (EOLD) are an emerging role providing nonmedical support and advocacy for the dying and their families. Research about EOLD is new and currently highlights a need for more clarity in role definition and application. This review aims to comprehensively analyze existing knowledge regarding EOLD and their role in EOL care.

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.

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.

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

More than 17.7 million people in the U.S.

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.

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.

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.

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

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. A sample of family caregivers ( = 163) used the tool for 16 weeks, which included completing the Computer Proficiency Questionnaire (CPQ-12) at baseline.

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 ( = 26) caring for an individual with a long-term disability and/or health condition(s).

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias).

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.

Health Disparities in Advance Care Planning: Development of a Spanish-Language LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias).

Introduction: The LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Guide is an advance care planning (ACP) tool for use within the context of dementia. To meet the needs of diverse communities, we sought to create a culturally sensitive and translated Latin American Spanish version of the guide.

Methods: First, the guide was translated into Spanish.

Caregiver burden among diverse caregivers.

Caregivers are diverse. Research needs to focus on understanding the similarities and differences of diverse caregivers, in order to develop the most supportive policies and programs.

"You Feel Very Isolated": Effects of COVID-19 Pandemic on Caregiver Social Connections.

One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers' social connections.

Evaluation of Family Characteristics and Multiple Hospitalizations at the End of Life: Evidence from the Utah Population Database.

Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records.

A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.

Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP). To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic. Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP.

Online interventions to support family caregivers: The value of community-engaged research practices.

Family members provide significant amounts of unpaid care to aging, chronically ill, and disabled persons in their homes. They often do this with little education or support and commonly report feeling overwhelmed and stressed. Providing education and support to family caregivers has demonstrated benefit on the health and well-being of the caregiver and care-receiver.

Families in Later Life: A Decade in Review.

Later-life families encompass the legal, biological, romantic, and kin-like relationships of persons ages 65 and older. Research on older families has flourished over the past decade, as population aging has intensified concerns regarding the capacities of families to care for older adults and the adequacy of public pension systems to provide an acceptable standard of living. Shifting patterns of family formation over the past half-century have created a context in which contemporary older adults' family lives differ markedly from earlier generations.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

Study Aims: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.

Design & Methods: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death.

For Better or for Worse: Health and Marital Quality during Midlife.

To examine how changes in health are associated with marital quality over a 20-year period of midlife. The health benefit associated with marriage (compared to non-marriage) is well established. Less work has explored how health and changes in a couple's health are associated with the marital relationship.

Reproductive Outcomes Among Women with Eating Disorders or Disordered Eating Behavior: Does Methodological Approach Shape Research Findings?

Background: There is a well-documented link between eating disorders (EDs) and adverse health outcomes, including fertility difficulties. These findings stem largely from clinical data or samples using a clinical measure (e.g.

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.