Complex identities, intersectionality and research approaches in millennial family caregivers in the United States.

AIMS: A discussion of the personal and social contexts for Millennial family caregivers and the value of including complex identity and intersectionality in Millennial family caregiving research with practical application. DESIGN: Discussion paper. DATA SOURCES: This discussion paper is based on our own experiences and supported by literature and theory. IMPLICATIONS FOR NURSING: Millennial family caregivers have distinct generational, historical and developmental experiences that contribute to the care they provide as well as their own well-being. Complex identity, the integration of multiple identities, and intersectionality, systems and structures that disempower and oppress individuals with multiple identities, need to be addressed in nursing research so intervention tailoring and health equity can be better supported in this population. From research conceptualization and design to data analysis, data must be used intentionally to promote equity and reduce bias. The inclusion of diverse Millennial caregivers throughout all stages of the research process and having a diverse nursing research workforce will support these efforts. CONCLUSION: Millennial family caregivers comprise one-quarter of the family caregiving population in the United States, and they are more diverse than previous family caregiving generational cohorts. Their needs will be more fully supported by nursing scientists with the adoption of methods and techniques that address complex identity and intersectionality. IMPACT: Nursing researchers can use the following research approaches to address complex identity and intersectionality in Millennial caregivers: inclusion of qualitative demographic data collection (participants can self-describe); data disaggregation; data visualization techniques to augment or replace frequencies and descriptive statistics for demographic reporting; use of researcher reflexivity throughout the research process; advanced statistical modelling techniques that can handle complex demographic data and test for interactions and differential effects of health outcomes; and qualitative approaches such as phenomenology that centre the stories and experiences of individuals within the population of interest.

Equity in the Provision of Diabetes Self-Management Education and Support.

Diabetes self-management education and support (DSMES) interventions must be accessible to all people with diabetes. To address equity in the delivery of DSMES, interventions should consider the unique needs of various populations. This article outlines the needs of a wide range of populations, including people with diabetes who are racially or ethnically diverse; have limited English proficiency or literacy; are deaf or hard of hearing; are blind or have low vision; are neurodiverse; live with learning disabilities or intellectual or developmental disabilities; have dementia or cognitive impairment; or are of sexual and/or gender minority. The authors discuss how best to tailor DSMES to meet the needs of these diverse groups.

Stress and Supportive Care Needs of Millennial Caregivers: A Qualitative Analysis.

Millennial caregivers, born between 1981 and 1996, are an understudied caregiver group. They experience stress-related consequences of caregiving and are unique in their developmental stage and generational norms. The purpose of this study was to understand the context of caregiving and stressors for these caregivers. In total, 42 caregivers were recruited through Research Match and social media platforms. Caregivers completed online surveys with open-ended response questions and 15 caregivers completed semistructured interviews. Data were analyzed deductively and inductively using the Stress Process Model as a framework. Millennial caregivers described uncertainty and disruption as overarching experiences. Stressors related to balancing caregiving, work, and family responsibilities were most prominent. Caregivers reported needing support from friends/family, health care team members, community, and work/governmental policy. Mental health treatment was identified as most helpful for managing stress. Millennial caregivers have distinctive contexts that impact their caregiving needs. Caregiving interventions must take these needs into consideration.

Understanding Factors That Predict Advance Directive Completion.

Background: Advance care planning was designed for the purpose of ensuring that patients receive care at end of life (EOL) that is congruent with their wishes, goals, and values. Despite the evidence of the negative impact of not having advance directives (ADs), only one-third of adults in the United States have written ADs. Determining the patient's goals of care in the setting of metastatic cancer is vital to the delivery of high-quality healthcare. Although much is known about barriers to AD completion (e.g., the uncertainty of the disease process and trajectory, readiness of patient and family to have these discussions, and patient-provider communication barriers), little is known about the role of both patient and caregiver factors influencing AD completion. Objective: This study aimed to understand the relationship between patient and family caregiver demographic characteristics, and processes, and their influence on AD completion. Design: This study was a cross-sectional descriptive correlational design and employed secondary data analysis. The sample was composed of 235 patients with metastatic cancer and their caregivers. Results: A logistic regression analysis was performed to analyze the relationship between predictor variables and the criterion variable of AD completion. Out of the 12 predictor variables, only 2 variables (patient age and race) predicted AD completion. Of those two predictor variables, patient age made a greater and unique contribution to explaining AD completion, compared with patient race. Conclusion: There is a need for further research on cancer patients with historical low AD completion.

Disparities and Racism Experienced Among Older African Americans Nearing End of Life.

Purpose of Review: The purpose of this review is to examine racism in healthcare as it relates to older African American adults. We focus on health disparities in old age and medical mismanagement throughout their lifespan. Recent Findings: In the United States there have been extensive medical advances over the past several decades. Individuals are living longer, and illnesses that were deemed terminal in the past are now considered chronic illnesses. While most individuals living with chronic illness have experienced better quality of life, this is not the case for many African American older adults. Summary: Older African American adults are less likely to have their chronic illness sufficiently managed and are more likely to die from chronic illnesses that are well controlled in Whites. African American older adults also continue to suffer from poorer healthcare outcomes throughout the lifespan to end-of-life.

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers.

Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.