Exploring Experiences of Pain Management Among Family Caregivers of Community-Dwelling Older Adults With Dementia.

BACKGROUND: Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. Surprisingly, research has not delved into the experiences of FCGs' concerning pain management in this context. METHODS: A qualitative descriptive study was conducted to gain a deep understanding of FCGs' experiences in managing pain for their loved ones. Family caregivers participated in semi-structured face-to-face or telephone interviews. Inclusion criterion included being an adult providing care to community-dwelling older adults with dementia. Recruitment stopped upon reaching thematic saturation. Basic demographic characteristics was also collected. Constant comparison analytic method was employed. RESULTS: The study included 25 FCGs in central Virginia, spanning ages from 29 to 95. Participants were predominantly white, female, married, and had a minimum high school education. Most of them were adult children (52%) or the spouses (28%) of the care recipients. Four thematic categories emerged around exploring FCGs' pain management experiences: (1) Values; (2) Barriers; (3) Support; and (4) Adaptation. Each theme included sub-themes. CONCLUSION: Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home.

OBJECTIVE: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. METHODS: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. RESULTS: A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures. CONCLUSIONS: Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers' physical health. PRACTICE IMPLICATIONS: Given caregivers' needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.

HPNA 2019-2022 Research Agenda: Development and Rationale.

Building on the strong work of previous research agendas (2009-2012, 2012-2015, 2015-2018), the Hospice and Palliative Nurses Association Research Advisory Council developed the 2019-2022 Research Agenda in consultation with Hospice and Palliative Nurses Association (HPNA) membership and assessment of major trends in palliative nursing. The HPNA Research Advisory Council identified 5 priority areas and asked subject experts in each area to summarize the state of the science, identify critical gaps, and provide recommendations for future research. This document expands the executive summary published on the HPNA website (www.advancingexpertcare.org/hpna/) and provides supporting evidence for the 2019-2022 recommendations. The 5 priority areas are as follows: (1) pediatric hospice and palliative nursing research; (2) family caregiving; (3) interprofessional education and collaborative practice; (4) big data science, precision health, and nursing informatics; and (5) implementation science.

Relationship Between Expectation of Death and Location of Death Varies by Race/Ethnicity.

BACKGROUND: Older black and Latino Americans are more likely than white Americans to die in the hospital. Whether ethnic differences in expectation of death account for this disparity is unknown. OBJECTIVES: To determine whether surviving family members' expectation of death has a differential association with site of death according to race or ethnicity. METHODS: We conducted an analysis of decedents from the Health and Retirement Study, a nationally representative study of US older adults. Telephone surveys were conducted with family members for 5979 decedents (decedents were 55% were women, 85% white, 9% black, and 6% Latino). The outcome of interest was death in the hospital; the predictor variable was race/ethnicity, and the intervening variable was expectation of death. Covariates included sociodemographics (gender, age, household net worth, educational attainment level, religion) and health factors (chronic conditions, symptoms, health-care utilization). RESULTS: Decedents' race/ethnicity was statistically related to the expectation of death and death in the hospital. When death was not expected, whites and Latinos were more likely to die in the hospital than when death was expected (49% vs 29% for whites and 55% vs 37% for Latinos; P < .001). There was no difference in site of death according to family's expectation of death among blacks. CONCLUSION: Expectation of death did not fully account for site of death and played a greater role among whites and Latinos than among black Americans. Discussing prognosis by itself is unlikely to address ethnic disparities. Other factors appear to play an important role as well.

"Planting the Seed": Perceived Benefits of and Strategies for Discussing Long-Term Prognosis with Older Adults.

OBJECTIVES: To characterize the goals and approaches of clinicians with experience discussing long-term prognostic information with older adults. DESIGN: We used a semistructured interview guide containing 2 domains of perceived benefits and strategies to explore why and how clinicians choose to discuss long-term prognosis, defined as life expectancy on the scale of years, with patients. SETTING: Clinicians from home-based primary care practices, community-based clinics, and academic medical centers across San Francisco. PARTICIPANTS: Fourteen physicians, including 11 geriatricians and 1 geriatric nurse practitioner, with a mean age of 40 and a mean 9 years in practice. MEASUREMENTS: Clinician responses were analyzed qualitatively using the constant comparisons approach. RESULTS: Perceived benefits of discussing long-term prognosis included establishing realistic expectations for patients, encouraging conversations about future planning, and promoting shared decision-making through understanding of patient goals of care. Communication strategies included adapting discussions to individual patient preferences and engaging in multiple conversations over time. Clinicians preferred to communicate prognosis in words and with a visual aid, although most did not know of a suitable visual aid. CONCLUSION: Engaging in customized longitudinal discussions of long-term prognosis aids clinicians in anchoring conversations about future planning and preparing patients for the end of life. J Am Geriatr Soc 66:2367-2371, 2018.

Sense of Control in End-of-Life Decision-Making.

OBJECTIVES: To explore how older adults in the community with a limited life expectancy make healthcare decisions and the processes used when they are not in an acute crisis. DESIGN: Grounded theory. SETTING: Medical programs and geriatrics clinics at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. PARTICIPANTS: Community-dwelling adults aged 67 to 98 with a life expectancy of less than 1 year (N = 20). MEASUREMENTS: In-depth semistructured interviews in participants' homes. Constant comparative analysis was used to develop codes and identify themes. RESULTS: Participants generally delegated decisions to others, expressing their wishes by describing desired end-of-life outcomes and highlighting meaningful aspects of their lives. They did this in the belief that the delegate would make appropriate decisions on their behalf. In this way, participants were able to achieve a sense of control without being in control of decisions. Four themes emerged from the analysis that reflect the various approaches participants used to articulate their goals and maintain a sense of control: direct communication, third-party analogies, adaptive denial, and engaged avoidance. CONCLUSION: These findings challenge the prevailing view of personal autonomy. These older adults suggest a path to decision-making that focuses on priorities and goals, allowing them to take a more-passive approach to decision-making while still maintaining a sense of control.

Prognosis Communication in Late-Life Disability: A Mixed Methods Study.

IMPORTANCE: Long-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm. OBJECTIVE: To explore the safety of and reactions to prognosis communication in late-life disability. DESIGN: Participants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later. SETTING: Community-dwelling older adults age 70+ residing in the San Francisco Bay Area. PARTICIPANTS: Thirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living. RESULTS: Self-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare. CONCLUSIONS AND RELEVANCE: About half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.

Viewing Hospice Decision Making as a Process.

Research focused on understanding that the nature of hospice decision making has both described the characteristics of those who do and do not utilize hospice and identified many factors related to choosing hospice. However, this literature has not explored the underlying decision-making processes, limiting our understanding. We examine the extant literature and propose a framework that views hospice decisions as an evolving process, identify key factors that bear directly on this process, and discuss the contextual environment, including the idea of a decision maker triad. We end with a discussion of how this framework can be used to support clinical practice and future research. Our goal is to provide a framework from which to understand the end-of-life needs of all patients, no matter where they receive care.

Decision Making Among Older Adults at the End of Life: A Theoretical Perspective.

Understanding changes in decision making among older adults across time is important for health care providers. We examined how older adults with a limited prognosis used their perception of prognosis and health in their decision-making processes and related these findings to prospect theory. The theme of decision making in the context of ambiguity emerged, reflecting how participants used both prognosis and health to value choices, a behavior not fully captured by prospect theory. We propose an extension of the theory that can be used to better visualize decision making at this unique time of life among older adults.

Perceptions of successful aging among diverse elders with late-life disability.

PURPOSE: Researchers often use the term "successful aging" to mean freedom from disability, yet the perspectives of elders living with late-life disability have not been well described. The purpose of this study was to explore the meaning of successful aging among a diverse sample of community-dwelling elders with late-life disability. DESIGN AND METHODS: Using qualitative grounded theory methodology, we interviewed 56 African American, White, Cantonese-speaking Chinese, and Spanish-speaking Latino disabled elders who participate in On Lok Lifeways, a Program of All-inclusive Care for the Elderly. Through semi-structured interviews with open-ended questions, we explored the elders' perceptions of what successful aging and being old meant to them. RESULTS: Despite experiencing late-life disability, most participants felt they had aged successfully. An overarching theme was that aging results in Living in a New Reality, with two subthemes: Acknowledging the New Reality and Rejecting the New Reality. Participants achieved successful aging by using adaptation and coping strategies to align their perception of successful aging with their experiences. Themes were common across race/ethnic groups but certain strategies were more prominent among different groups. IMPLICATIONS: Across race and ethnic groups, most of these participants with late-life disability felt they had aged successfully. Thus, successful aging involves subjective criteria and has a cultural context that is not captured in objective measurements. Understanding elders' perception will help establish common ground for communication between clinicians and elders and identify the most appropriate interventions to help elders achieve and maintain the experience of successful aging.