Sharing health care wishes among older adults with cognitive impairment in primary care: Results from a randomized controlled trial.

INTRODUCTION: Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence-based models are lacking for the primary care setting. METHODS: We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person-family dyads from eight primary care practices. RESULTS: Mean patient age was 88.0 years, 85 (31.1%) were Black/Latino; 189 (69.2%) had moderate-to-severe cognitive impairment. Most (101/145; 69.6%) intervention dyads engaged in ACP. At follow-up, no treatment effect was observed for care partner-reported quality of communication about end-of-life care at 6 or 12 months, but intervention patients reported better quality of communication about end-of-life care at 12 months. Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and increased completion of key aspects of ACP. DISCUSSION: SHARE supported key aspects of ACP processes and communication about end-of-life care. HIGHLIGHTS: Primary care-based models of ACP for persons with dementia are lacking. Involving persons with cognitive impairment in remote ACP is feasible with care partner involvement. Results indicate benefit for aspects of ACP processes and communication about end-of-life care.

Spirituality moderates the relationship between cancer caregiver burden and depression.

OBJECTIVES: Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers' burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer. METHODS: This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates. RESULTS: Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers' spirituality on the relationship between depression and caregiver burden over time (b = -1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support. SIGNIFICANCE OF RESULTS: Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients' health.

A systematic review of specialty dementia care units in long-term care settings.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) are common among nursing home residents. Yet, conclusive evidence regarding best care practices among this population is lacking. Objectives of this systematic review were to explore features of dementia specialty care units (DSCUs) in long-term care settings and examine benefits for residents, staff, families, and facilities. METHODS: PubMed, CINAHL, and PsychINFO were searched to identify articles involving DSCUs in long-term care settings published in English with full text available between 01.01.2008 and 06.03.2022. Articles containing empirical data about ADRD special care in long-term care settings were included in the review. Articles focused on clinic-based or out-patient dementia care programs (e.g., adult day care) were excluded. Articles were categorized based on geography (U.S. vs. international) and study design: interventions, descriptive studies, or comparison studies (traditional vs. specialty ADRD care). RESULTS: Our review included 38 U.S. articles and 54 articles from 15 international countries. In the U.S., 12 intervention, 13 descriptive, and 13 comparison studies met the inclusion criteria. Articles from international countries included 22 intervention, 20 descriptive, and 12 comparison studies. Results were mixed in terms of the efficacy of DSCUs. Promising DSCU features include small-scale settings, dementia-educated staff, and multidisciplinary approaches to care. CONCLUSION: Overall, our review did not find conclusive evidence regarding the benefits of DSCUs in long-term care settings. No rigorous study designs were found examining 'special' features of DSCUs and associations with outcomes among residents, family, staff, and the facility. Randomized clinical trials are needed to disentangle the 'special' features of DSCUs.

Perspectives on Social Justice among Hospice and Palliative Care Social Workers: Voices from the Field.

Hospice and palliative care are burgeoning fields of social work practice. Within the social work profession, the pursuit of social justice is a defining ethical value. While some research exists on social justice within palliative and hospice care, no studies have examined its meaning within the context of this highly specialized field. To date, there is an absence of empirical research examining the meaning of social justice within a sample of hospice and palliative social workers. This study attempts to fill this gap. We used qualitative and quantitative survey items to ask hospice and palliative care social workers about the meaning of social justice within their unique practice setting, as well as to identify prominent social injustices and opportunities for action. Using responses from 51 seasoned practitioners, we found that social workers generally defined social justice as equitable access to three core areas-basic needs, high quality care, and education (for both patients, families, and providers)-regardless of a person's group membership (e.g., race, class, sexual orientation). Participants also made recommendations for improving social justice in clinical practice through advocacy and other initiatives.

Bereavement Support Services in a National Sample of Hospices: A Content Analysis.

Although the Medicare Hospice Benefit mandates that hospices offer bereavement support services to families for at least 1 year following the death of a patient, it does not stipulate which services they should offer. As a result, little is known about what bereavement support services hospices provide, especially on a national scale. The current study recruited a national sample of hospice representatives who responded to an open-ended question that asked, "What types of bereavement support services does your hospice provide to families?" Seventy-six viable responses were recorded and content analyzed. Four overarching domains emerged: (a) timing of support, (b) providers of support, (c) targets of support, and (d) formats of support. Other notable findings included the underutilization of bereavement support services and the utility of informal support formats. These findings present implications for future study regarding which specific aspects of hospice bereavement support services are most beneficial to bereaved families.

A conceptual framework for understanding financial burden during serious illness.

Life-threatening illness is associated with financial burden among families. During this time, care-related expenses often increase. The concept of financial burden has not fully been explored nor conceptually described in the literature. Our study coalesces the empirical literature on financial burden into a more comprehensive multidimensional theoretical framework to understand financial burden among patients and families dealing with serious illness. Using Jabareen's phased approach for building conceptual frameworks, we synthesized the existing scientific literature (including existing measures of financial burden) to construct an empirically derived model. Definitions of financial burden are overlapping with similarities, but also inconsistencies. Many studies have focused more on objective and operational definitions, than subjective and conceptual aspects. Regarding measures for financial burden, many studies have only used a few items. The financial burden is dependent on the illness trajectories and duration. By considering multidimensionality, we illustrate potential financial burden factors (objective, coping, and subjective). Although anticipation and expectations about future financial issues are important, patients and caregivers generally experience objective aspects of burden, followed by subjective impressions of burden. Coping skills likely reduce subjective burden. Based on the results, we redefine the financial burden among patients with life-threatening illness and caregivers.

Measures of financial burden for families dealing with serious illness: A systematic review and analysis.

BACKGROUND: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. AIM: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. DESIGN: A systematic review. DATA SOURCES: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. RESULTS: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures-based on Google Scholar citations-tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. CONCLUSION: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.

Spirituality among family caregivers of cancer patients: The Spiritual Perspective Scale.

Spirituality is a critical resource for family caregivers of patients with cancer. However, studies on spirituality are hampered because measures of spirituality lack consistency and have not been validated in cancer caregivers. This study examined the validity of the Spiritual Perspective Scale (SPS) among cancer caregivers and explored whether measurement bias may influence differences in spirituality across caregiver and patient characteristics. In this secondary analysis, 124 caregivers of cancer patients were used to evaluate the validity of the 10-item SPS. A multiple indicators multiple causes model was applied to explore differences in the association between a latent spirituality factor and characteristics of caregivers and patients. Overall reliability of the SPS was adequate (Cronbach's α = .95). The SPS scores were predictive of higher meaning and purpose (r = .32, p = .004) and lower depression (r = -.22, p = .046) at 3-month follow-up. Construct validity of the SPS with a single-factor structure was supported in cancer caregivers. Adjusting for a direct effect of race did not alter the pattern of results, and caregivers who were older, female, ethnic minorities, less-educated, affiliated with a religion, and who provided care to another individual in addition to the patient had greater levels of spirituality. This study provides evidence for psychometric validation of the SPS in cancer caregivers. Understanding differences in caregivers' spirituality by using the SPS with psychometrically acceptable properties and minimal measurement bias deserves more attention to optimize spirituality assessment and support in cancer caregiving.

Documenting the contributions of palliative care social work: testing the feasibility and utility of tracking clinical activities using medical records.

Access to data on quality metrics can better equip palliative care social workers to identify and address gaps in patient care, establish standards and accountability for social work functions on the interdisciplinary team, and evaluate the impact of interventions. The objective of this demonstration project was to create and pilot a data collection format in the patient electronic medical record (Epic) for documentation of social work metrics at each inpatient consultation, and to build corresponding pilot reports relevant to quality improvement goals. The successful implementation and initial pilot reports were reviewed for the feasibility of longer-term applications.

Advance Care Planning Communication: Oncology Patients and Providers Voice their Perspectives.

Advance care planning helps to ensure that patients' end-of-life preferences are understood and discussed with providers. It is an important component of patient-centered care, particularly when patients are facing life-limiting illness. It also has ethical implications for providers, yet evidence suggests that these conversations are not always occurring, particularly in underserved populations. The aim of this study was to understand the challenges and personal beliefs regarding ACP through interviews with patients undergoing active cancer treatment and their oncology providers. This study took place at an urban, multispecialty cancer center in the mid-Atlantic region where approximately 1400 patients are treated each year. Findings revealed differences among both patients and providers in terms of their ACP knowledge, preferences, and practices. Overall, 70% of patients were familiar with advance directives (100% of White patients and 45.5% of Black patients), yet only 35% of them reported having completed one (55.6% of White patients and 18.2% of Black patients, although not statistically significant). Most providers (70%) held ACP conversations with patients with advanced illness only. They tended to make assumptions about the amount of information that patients desired and noted the significant challenges that were inherent with these types of conversations. Overall, ethical implications are inherent in ACP as patients are making medical decisions without always having necessary information. There are various reasons why providers may not supply information regarding potential outcomes and end-of-life planning and why patients may not request (or know to request) more medical information.

Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review.

Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.

Validating the 11-Item Revised University of California Los Angeles Scale to Assess Loneliness Among Older Adults: An Evaluation of Factor Structure and Other Measurement Properties.

OBJECTIVE: To examine the measurement properties and factor structure of the short version of the Revised University of California Los Angeles (R-UCLA) loneliness scale from the Health and Retirement Study (HRS). METHODS: Based on data from 3,706 HRS participants aged 65 + who completed the 2012 wave of the HRS and its Psychosocial Supplement, the measurement properties and factorability of the R-UCLA were examined by conducting an exploratory factor analysis (EFA) and the confirmatory factor analysis (CFA) on randomly split halves. RESULTS: The average score for the 11-item loneliness scale was 16.4 (standard deviation: 4.5). An evaluation of the internal consistency produced a Cronbach's α of 0.87. Results from the EFA showed that two- and three-factor models were appropriate. However, based on the results of the CFA, only a two-factor model was determined to be suitable because there was a very high correlation between two factors identified in the three-factor model, available social connections and sense of belonging. CONCLUSION: This study provides important data on the properties of the 11-item R-UCLA scale by identifying a two-factor model of loneliness: feeling isolated and available social connections. Our findings suggest the 11-item R-UCLA has good factorability and internal reliability.

Factors Associated With Opinions About Hospice Among Older Adults: Race, Familiarity With Hospice, and Attitudes Matter.

Attitudes and opinions about end-of-life care among older adults are understudied. Using survey data from the American Association of Retired Persons (AARP) membership in Florida (N = 2714), this study identified predictors of opinions about hospice (OAH) among older adults. Relationships between race/ethnicity and attitudes were also examined. Results showed race of the respondent was the strongest predictor of one's OAH. Predictors of positive opinions of hospice included being of Caucasian race, non-Hispanic ethnicity, better health, greater familiarity with hospice, a high importance of pain control, the importance of fulfilling personal goals, a desire to have health-care professionals involved in one's care, and having engaged in advance care planning. These findings suggest a need for greater attention to culture-based elements in future research and practice.

Financial burden among US households affected by cancer at the end of life.

OBJECTIVE: Economic burden on families coping with end-stage cancer remains poorly understood. Advanced malignancy threatens financial stability of families, and interventions are needed to buffer them from impoverishment. This study examined the relationship between subjective and objective assessments of financial burden on families (financial strain and stress, respectively) and identified potentially modifiable factors to inform intervention efforts. METHODS: Using national survey data, we analyzed responses from households that had recently experienced a cancer death; 176 of households provided information on financial strain, and 158 provided data on financial stress. In addition to self-reported appraisals of financial burden, measures assessed elements of the cancer care experience, treatment, symptom burden, work impact, insurance coverage, and demographics. RESULTS: Despite being well insured, approximately a quarter of respondents reported that the cost of care was a major financial burden, and a third used all or most of their savings. Financial strain and stress were moderately positively correlated (r = 0.46, p < 0.01). Higher financial stress scores were negatively correlated with decedent's age at death (r = -0.34, p < 0.01), and minority respondents ('other' race) reported much higher financial stress (M = 4.7; SD = 3.2) than White (M = 0.8; SD = 1.4) or Black (M = 1.6; SD = 2.2) respondents (p < 0.001). Financial burden was also associated with no or limited insurance coverage, changes in employment, severe pain and nausea, and provider interactions during the cancer care experience (e.g., whether the MD paid attention to non-medical factors or having unanswered questions about medications) (p < 0.05 for all). CONCLUSIONS: The cancer care experience, symptoms, and work impact were associated with financial burden and have important implications for research and practice. Copyright © 2015 John Wiley & Sons, Ltd.

Willingness to Use Pain Medication to Treat Pain.

OBJECTIVE: Despite the growth of the economic impact of pain and pain management, there remains a lack of knowledge about disparities, especially, evidence regarding individual attitudes and beliefs about accepting pain treatments. This study provides preliminary information on the prevalence of public concerns about pain management and a better understanding of factors that may ultimately lead to improved pain management and treatment adherence. METHODS: Using a cross-sectional survey of community-dwelling adults 18+ in the US, 123 randomly selected respondents were telephone-interviewed in 2012. Principal components factor analysis (PCA) was used to detect statistical groupings of attitudes and beliefs about pain and pain management. The modified Protection Motivation Theory was applied to examine the willingness to use pain medicine. RESULTS: The five most important components pertained to threat appraisal, coping appraisal, attitudes, subjective norms, and perceived control. Threat appraisal was the most common factor, and subjective norms was the least common factor. Lower income, more awareness of hospice, and less misconceptions about threat appraisal and attitudes toward pain and pain management were associated with more willingness to use pain medicine in hierarchical regression. CONCLUSIONS: These components are useful for future research on the willingness to use pain medicine and may have implications for assessing cognitive barriers toward pain and pain management among the general public.

Quality of death among hospice decedents: Proxy observations from a survey of community-dwelling adults in the contiguous United States.

This study examines hospice service experience and quality of death. A survey of 123 community-dwelling adults in the United States found that physical comfort, pain-free, and spiritual peace were more important to respondents reporting a personal experience with hospice. A "good death" was associated with older patients who died at home, and respondent satisfaction with hospice service. A "good death" was mapped as 29 nodes and 79 links using semantic network analysis. Three subjects (patient, family, hospice), three timeframes (end-of-life, moment of dying, death), and four central causes (home, peaceful, pain-free, and expected) were identified.

Impact of brief communication training among hospital social workers.

Hospital social workers are often the fulcrum of communication between physicians, patients, and families especially when patients are facing life-threatening illness. This study aims to understand the impact of a brief training for hospital social workers. The training is designed to improve communication skills and self-efficacy, as well as lessen fears of death and dying. Repeated-measures tests were used to assess outcomes across three time points. Twenty-nine university-based hospital social workers participated. Results trended in the desired directions. Communication self-efficacy improved immediately following the training, and this was sustained 1 month following training completion. Although participants were relatively experienced, improvement was still demonstrated and maintained suggesting brief communication training is promising for hospital social workers across the career.

Correlates of a good death and the impact of hospice involvement: findings from the national survey of households affected by cancer.

PURPOSE: Knowing how to improve the dying experience for patients with end-stage cancer is essential for cancer professionals. However, there is little evidence on the relationship between clinically relevant factors and quality of death. Also, while hospice has been linked with improved outcomes, our understanding of factors that contribute to a "good death" when hospice is involved remains limited. This study (1) identified correlates of a good death and (2) provided evidence on the impact of hospice on quality of death. METHODS: Using data from a survey of US households affected by cancer (N = 930, response rate 51 %), we fit regression models with a subsample of 158 respondents who had experienced the death of a family member with cancer. Measures included quality of death (good/bad) and clinically relevant factors including: hospice involvement, symptoms during treatment, whether wishes were followed, provider knowledge/expertise, and compassion. RESULTS: Respondents were 60 % female, 89 % White, and averaged 57 years old. Decedents were most often a respondent's spouse (46 %). While 73 % of respondents reported a good death, Hispanics were less likely to experience good death (p = 0.007). Clinically relevant factors, including hospice, were associated with good death (p < 0.05)--an exception being whether the physician said the cancer was curable/fatal. With adjustments, perceptions of provider knowledge/expertise was the only clinical factor that remained associated with good death. CONCLUSIONS: Enhanced provider training/communication, referrals to hospice and greater attention to symptom management may facilitate improved quality of dying. Additionally, the cultural relevance of the concept of a "good death" warrants further research.

Differences in assisted living staff perceptions, experiences, and attitudes.

Research within residential care/assisted living (RC/AL) settings has shown that the attitudes of personal care (PC) staff toward their organization and its residents and families can affect the quality of resident care. This article describes the perceptions, experiences, and attitudes of PC staff and their supervisors, and considers these data in the context of non-hierarchical staffing patterns-a philosophically expected, yet unproven tenet of RC/AL. Using data collected from 18 RC/AL communities, these analyses compared the characteristics, perceptions, experiences, and attitudes of PC staff (N = 250) and supervisors (N = 30). Compared to supervisors, PC staff reported greater burden, frustration, depersonalization, hassles, and feeling significantly more controlling of, and less in partnership with, families (p < 0.05). Because the PC staff experience is crucial for resident outcomes, more work is needed to create an environment where PC staff are less burdened and have better attitudes toward work and families.