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.

Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer's Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes.

BACKGROUND: Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. METHODS/DESIGN: The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer's Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. DISCUSSION: This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants. TRIAL REGISTRATION: The project is registered on ClinicalTrials.gov: NCT04520698.

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 national survey of window-opening behavior in United States homes.

Air exchange is among the most important building parameters influencing indoor air quality and energy use. Over 18-month period we surveyed over 3800 individuals to generate a contemporary, nationwide measure of window- and door-opening behavior. We also identified influences of demographics, climate, and region. For the entire survey, including all seasons and geographic regions, 43.9% of respondents said that at least one window was open the day prior to taking the survey. Greater window-opening frequency was associated with having a lower income, living in attached homes or apartments, renting, lack of air conditioning, or being Asian or Hispanic. People living in the west and north open windows considerably more frequently and longer than those in the southeastern US. Window-opening frequency and duration increases with outdoor temperature until a maximum occurs at 18-21°C. At temperatures greater than this, window frequency decreases. The pattern roughly holds, by region, with the peak occurring at a lower temperature in the NW (12°C), and a higher temperature in the SW and SE. The frequency of door opening is roughly half that of window opening with similar, but not identical, demographic, regional, and climate associations.

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.

Evaluation of Force Sensing Resistors for the Measurement of Interface Pressures in Lower Limb Prosthetics.

Understanding the pressure distributions at the limb-socket interface is essential to the design and evaluation of prosthetic components for lower limb prosthesis users. Force sensing resistors (FSRs) are employed in prosthetics research to measure pressure at this interface due to their low cost, thin profile, and ease of use. While FSRs are known to be sensitive to many sources of error, few studies have systematically quantified these errors using test conditions relevant to lower limb prosthetics. The purpose of this study was to evaluate FSR accuracy for the measurement of lower limb prosthetics interface pressures. Two FSR models (Flexiforce A201 and Interlink 402) were subjected to a series of prosthetic-relevant tests. These tests included: (1) static compression, (2) cyclic compression, and (3) a combined static and cyclic compression protocol mimicking a variable activity (walk-sit-stand) procedure. Flexiforce sensors outperformed Interlink sensors and were then subjected to two additional tests: (4) static curvature and (5) static shear stress. Results demonstrated that FSRs experienced significant errors in all five tests. We concluded that: (1) if used carefully, FSRs can provide an estimate of prosthetic interface pressure, but these measurements should be interpreted within the expected range of possible measurement error given the setup; (2) FSRs should be calibrated in a setup that closely matches how they will be used for taking measurements; and (3) both Flexiforce and Interlink sensors can be used to estimate interface pressures; however, in most cases Flexiforce sensors are likely to provide more accurate measurements.

Challenges of Dealing with Financial Concerns during Life-Threatening Illness: Perspectives of Health Care Practitioners.

The costs of serious medical illness and end of life care are often a heavy burden for patients and families (Collins, Stepanczuk, Williams, & Rich, 2016 ; Kim, 2007 ; May et al., 2014 ; Zarit, 2004 ). Twenty-six practitioners, including social workers, managers/administrators, supervisors, and case managers from five health care settings, participated in qualitative semistructured interviews about financial challenges patients encountered. Seven practitioners took part in a focus group. Practitioners were recruited from hospice (n = 5), long-term care (n = 5), intensive care (n = 5), dialysis (n = 6), and oncology (n = 5). Interview and focus group questions focused on financial challenges patients encountered when facing life-threatening illness. Interview data were transcribed and thematically coded and trustworthiness of data was established with peer debriefing, member checking, and agreement on themes among the authors. Practitioners described interacting micro, meso, and macroinfluences on the financial well-being and challenges patients encountered. Microlevel influences involved patient characteristics, such as their demographic profile and/or health status that set them up for financial aptitude or challenges. Macrolevel influences involved the larger health care/safety net system, which provided valuable resources for some patients but not others. Practitioners also discussed the mesolevel of influence, the local setting where they worked to match available resources with patients' individual needs given the constraints emerging from the micro and macrolevels. Practitioners described how they navigated the interplay of these three areas to meet patients' needs and cope with financial challenges. Implications for practice point to directly addressing the kind of financial concerns that patients and families facing financial burden from serious medical illness have, and identifying ways to bridge knowledge and resource access gaps at the individual, organizational, and societal levels.

An Inductive Sensing System to Measure In-Socket Residual Limb Displacements for People Using Lower-Limb Prostheses.

The objective of this research was to assess the performance of an embedded sensing system designed to measure the distance between a prosthetic socket wall and residual limb. Low-profile inductive sensors were laminated into prosthetic sockets and flexible ferromagnetic targets were created from elastomeric liners with embedded iron particles for four participants with transtibial amputation. Using insights from sensor performance testing, a novel calibration procedure was developed to quickly and accurately calibrate the multiple embedded sensors. The sensing system was evaluated through laboratory tests in which participants wore sock combinations with three distinct thicknesses and conducted a series of activities including standing, walking, and sitting. When a thicker sock was worn, the limb typically moved further away from the socket and peak-to-peak displacements decreased. However, sensors did not measure equivalent distances or displacements for a given sock combination, which provided information regarding the fit of the socket and how a sock change intervention influenced socket fit. Monitoring of limb⁻socket displacements may serve as a valuable tool for researchers and clinicians to quantitatively assess socket fit.

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.

Development of Standardized Material Testing Protocols for Prosthetic Liners.

A set of protocols was created to characterize prosthetic liners across six clinically relevant material properties. Properties included compressive elasticity, shear elasticity, tensile elasticity, volumetric elasticity, coefficient of friction (CoF), and thermal conductivity. Eighteen prosthetic liners representing the diverse range of commercial products were evaluated to create test procedures that maximized repeatability, minimized error, and provided clinically meaningful results. Shear and tensile elasticity test designs were augmented with finite element analysis (FEA) to optimize specimen geometries. Results showed that because of the wide range of available liner products, the compressive elasticity and tensile elasticity tests required two test maxima; samples were tested until they met either a strain-based or a stress-based maximum, whichever was reached first. The shear and tensile elasticity tests required that no cyclic conditioning be conducted because of limited endurance of the mounting adhesive with some liner materials. The coefficient of friction test was based on dynamic coefficient of friction, as it proved to be a more reliable measurement than static coefficient of friction. The volumetric elasticity test required that air be released beneath samples in the test chamber before testing. The thermal conductivity test best reflected the clinical environment when thermal grease was omitted and when liner samples were placed under pressure consistent with load bearing conditions. The developed procedures provide a standardized approach for evaluating liner products in the prosthetics industry. Test results can be used to improve clinical selection of liners for individual patients and guide development of new liner products.

Patient Reluctance to Discuss Pain: Understanding Stoicism, Stigma, and Other Contributing Factors.

Some patients are hesitant to disclose when they are experiencing pain. However, the reasons for this, such as stoicism and concern about being a bother to others, are poorly understood. If patient pain goes unrecognized during clinical encounters, patients may also be at greater risk for pain-related crises, use of hospice/palliative care on-call services, and in-patient transfers. This is an evidence-informed development of a practice-oriented conceptual model to understand and address patient reluctance to admit pain. We used a review of the available evidence to better understand the various factors that contribute to an unwillingness to disclose one's pain, create a conceptual model, and identify relevant assessment measures that may be useful to practitioners. Our review identified six primary attitudes and beliefs that contribute to patient reluctance to openly admit pain: (a) stigma; (b) stoicism; (c) cautiousness; (d) fatalism; (e) bother; and (f) denial. Four assessment measures that address elements of barriers to pain-related communication and four measures of nonverbal signs of pain were also identified and reviewed. Based on the model, social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. Implications for practice and research are presented.

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.