Perceived Benefits and Barriers of mHealth Mindfulness Use for Caregivers of Older Adults with Cognitive Impairment: A Qualitative Exploration.

OBJECTIVES: Mobile (mHealth) mindfulness-based interventions have the potential to be feasible, acceptable, effective, and scalable interventions for caregivers of people living with cognitive impairment. This qualitative study of caregivers of older adults with cognitive impairment explored caregivers' experiences using a mindfulness therapy mobile application. METHODS: Fifteen caregivers were interviewed using a semi-structured interview guide. Analysis was guided by the phenomenological approach and inductive-deductive analysis. RESULTS: Six themes were generated from the data: convenience, barriers, perceived helpfulness, useful features, suggested app improvements, and skill transfer. Caregivers reported that the app was easy to use with many perceived benefits. Caregivers also noted some barriers to using the app. CONCLUSIONS: This study revealed that self-directed mHealth delivered mindfulness therapy may be a promising intervention for the caregivers involved in the study. Having the ability to use the app anywhere and at any time was a prominent reason for continued regular use for the participants. This was especially important to some caregivers during the COVID-19 pandemic. The barriers discussed by the caregivers are important considerations for future app-based interventions for caregivers. CLINICAL IMPLICATIONS: Clinicians can consider recommending mHealth mindfulness therapy to caregivers as a tool to provide caregivers with additional support.

The feasibility, acceptability, and preliminary efficacy of an mHealth mindfulness therapy for caregivers of adults with cognitive impairment.

Objectives: To examine the feasibility, acceptability, and preliminary efficacy of Mindfulness Coach, an mHealth Mindfulness Therapy intervention.Methods: We recruited 58 informal caregivers of older adults with cognitive impairment for this pilot feasibility trial. Participants completed measures of caregiver burden, stress, anxiety, and depression at baseline, 2 weeks, 4 weeks, and 8 weeks as well as acceptability and usability data at 8-weeks. The mobile app collected in-app use data including minutes spent using the app and number of unique visits to the app.Results: Users found the app acceptable to use and were satisfied with its design and usability. Over the course of the study period, depression, anxiety, caregiver burden and perceived stress improved. These outcome variables also improved more as caregivers spent more time using the Mindfulness Therapy mHealth intervention.Conclusions: Our results suggest that mHealth mindfulness therapy with caregivers of older adults with cognitive impairment is both feasible and acceptable to users, and that it successfully reduces psychological symptoms. Future work should focus on determining the appropriate doses of the mHealth therapy for particular outcomes and strategies to integrate it into routine care. Mindfulness Therapy delivered in an mHealth format may increase access to psychological treatment for caregivers.

The associations between social support and negative social interaction with suicidal ideation in US Chinese older adults.

To examine associations between social support and negative social interaction with past suicidal ideation (SI) at multiple time intervals. The study used cross-sectional data collected from 3157 US Chinese older adults in Chicago to assess past 2-week, 1-month, 1-year, and lifetime SI. Self-perceived social support and negative social interaction were measured. Multiple logistic regression analyses were used to examine the associations. People perceived more social support and less negative social interaction were 17-19% less likely to have SI. People perceived more social support were 14-20% less likely to have SI. Meanwhile, people perceived more negative social interaction were 28-37% more likely to have SI. The independent associations between different social interaction and SI are significant regardless of the time intervals. Research should pay attention not only to bolstering perceptions of social support, but also to strategies that help individuals cope with the influence of negative social interactions.

Associations between unmet palliative care needs and cognitive impairment in a sample of diverse, community-based older adults.

OBJECTIVE: Given a large number of community-based older adults with mild cognitive impairment, it is essential to better understand the relationship between unmet palliative care (PC) needs and mild cognitive impairment in community-based samples. METHOD: Participants consisted of adults ages 60+ receiving services at senior centers located in New York City. The Montreal Cognitive Assessment (MoCA) and the Unmet Palliative Care Needs screening tool were used to assess participants' cognitive status and PC needs. RESULTS: Our results revealed a quadratic relationship between unmet PC needs and mild cognitive impairment, controlling for gender, living status, and age. Participants with either low or high MoCA scores reported lower PC needs than participants with average MoCA scores, mean difference of the contrast (low and high vs. middle) = 2.15, P = 0.08. SIGNIFICANCE OF RESULTS: This study is a first step toward elucidating the relationship between cognitive impairment and PC needs in a diverse community sample of older adults. More research is needed to better understand the unique PC needs of older adults with cognitive impairment living in the community.

An examination of Latino advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study.

OBJECTIVES: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP. METHODS: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication. RESULTS: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences. SIGNIFICANCE OF RESULTS: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

Words Matter.

Palliative care consultation teams (PCCTs) provide input to other health-care providers working with patients who have life-limiting disease. This study examines whether the diction and phrasing of consultation recommendations in the electronic health record influence their implementation. We reviewed 288 verbatim PCCT recommendations that were made for 111 unique patients in a Veterans Affairs hospital and available in the electronic health record. Recommendations were coded for linguistic features, such as the presence of conditionals (e.g., "could") and tentative phrasing (e.g., "would suggest"). Each patient's subsequent treatment was followed in the medical record to determine whether PCCT recommendations were implemented. Only 57% of the consultation recommendations were eventually implemented. Recommendations that included a conditional word or phrase were significantly less likely to be implemented. In particular, recommendations that included the words "could" and "consider" were less likely to be implemented. PCCTs may enhance their effectiveness by attending to the subtle pragmatics of how they communicate with other health-care providers, particularly in electronic communication where nonverbal features of communication are unavailable.

Development and validation of the Palliative Care Knowledge Scale (PaCKS).

OBJECTIVE: The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals. METHOD: An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18-89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed. RESULTS: The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development. SIGNIFICANCE OF RESULTS: Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.

Knowledge Gaps in End-Of-Life Family Caregiving for Persons Living With Dementia: A Study of Hospice Clinician Perspectives.

INTRODUCTION: More than 35% of hospice care recipients 65 and older have a dementia diagnosis. Yet family care partners of persons living with dementia report feeling unprepared to address their hospice recipient's changing needs nearing end of life. Hospice clinicians may have unique insight into the knowledge needs of family care partners and strategies for end-of-life dementia caregiving. METHODS: Semi-structured interviews were conducted with 18 hospice physicians, nurse practitioners, nurses, and social workers. Interview transcripts were deductively analyzed using thematic analysis to examine clinicians' perspectives on gaps and strategies related to family care partner knowledge about end-of-life dementia caregiving. RESULTS: We identified 3 themes related to gaps in family care partners' knowledge: dementia is a progressive, fatal disease; end-of-life symptoms and symptom management in persons living with advanced dementia; and understanding hospice goals and guidelines. Three themes related to clinicians' strategies to increase knowledge included: providing education; teaching strategies to facilitate coping and preparedness for end-of-life care; and communicating with empathy. DISCUSSION: Clinicians perceive gaps in knowledge specific to dementia and end of life among family care partners. These gaps include a lack of understanding of Alzheimer's symptom progression and strategies to manage common symptoms. Recommendations for approaches to reduce knowledge gaps include providing education and strategies delivered with empathy toward the family care partner experience. CONCLUSION: Clinicians who work with persons living with dementia receiving hospice care have valuable insights regarding family care partners' gaps in knowledge. Implications on the training and preparation of hospice clinicians working with this care partner population are discussed.

Mental Health Integration and Delivery in the Hospice and Palliative Medicine Setting: A National Survey of Clinicians.

CONTEXT: Mental health comorbidities among individuals with serious illness are prevalent and negatively impact outcomes. Mental healthcare is a core domain of palliative care, but little is known about the experiences of palliative care clinicians delivering such care. OBJECTIVES: This national survey aimed to characterize the frequency with which palliative care providers encounter and manage common psychiatric comorbidities, evaluate the degree of mental health integration in their practice settings, and prioritize strategies to meet the mental health needs of palliative care patients. METHODS: A e-survey distributed to the American Academy of Hospice and Palliative Medicine membership. RESULTS: Seven hundred eight palliative care clinicians (predominantly physicians) were included in the analysis. Mood, anxiety, and neurocognitive disorders were frequently encountered comorbidities that many respondents felt comfortable managing. Respondents felt less comfortable with other psychiatric comorbidities. Eighty percent of respondents noted that patients' mental health status impacted their comfort delivering general palliative care at least some of the time. Mental health screening tool use varied and access to specialist referral or to integrated psychiatrists/psychologists was low. Respondents were unsatisfied with mental health training opportunities. CONCLUSION: Palliative care clinicians play a crucial role in addressing mental health comorbidities, but gaps exist in care. Integrated mental health care models, streamlined referral systems, and increased training opportunities can improve mental healthcare for patients with serious illness.

Mental Health and Well-Being Among Home Health Aides.

Importance: Home health aides and attendants (HHAs) provide essential care to older adults and those with chronic conditions in the home. However, some HHAs struggle with poor mood and stress, which may have been exacerbated by the COVID-19 pandemic. Objective: To elicit HHAs' perspectives toward mental health and well-being, including how their job influences both and how to better support the workforce in the future. Design, Setting, and Participants: For this qualitative study, focus groups and interviews with HHAs were facilitated in English and Spanish from August 17, 2022, to February 9, 2023, in partnership with the 1199SEIU Training and Employment Fund, a benefit fund of the 1199SEIU United Healthcare Workers East and the largest health care union in the US. Included were HHAs at risk for poor mental health and well-being, which were defined as having at least mild or more symptoms on either the 8-item Personal Health Questionnaire depression scale, the 4-item Cohen Perceived Stress Scale, or the University of California, Los Angeles Loneliness Scale. Exposure: Mental health and well-being of HHAs. Main Outcomes and Measures: Focus groups and interviews were audio recorded, professionally transcribed, and translated. A thematic analysis was performed that was informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health model. Results: A total of 28 HHAs from 14 different agencies participated (mean [SD] age, 54.3 [10.8] years; 26 female [93%]). Seventeen participants (61%) spoke Spanish at home. Five key themes emerged: (1) HHAs' attitudes toward mental health and well-being were influenced by a variety of personal and cultural factors; (2) HHAs' relationships with their patients impacted their mood in both positive and negative ways; (3) structural and organizational aspects of the job, alongside the COVID-19 pandemic, impacted HHAs' mood and stress levels; (4) HHAs used a variety of strategies to cope with their emotions; and (5) HHAs were eager for interventions that can improve their mood, particularly those that bring them closer to their colleagues. Conclusions and Relevance: These findings suggest that HHAs' mental health and well-being may be influenced by both personal and occupational factors. Interventions and policies to better support their emotional well-being on the job are warranted.

Palliative Care Use in Advanced Cancer in the Garden State.

BACKGROUND: Cancer is the second leading cause of death in the United States. Patients with metastatic cancer have a high symptom burden. Major global and domestic cancer care recommendations advise integration of palliative care services for these patients. Palliative care is specialized care that can decrease cost, improve symptom burden, and improve quality of life. Patient factors driving the use of palliative care remain poorly understood but may include both physiological and psychological needs, namely, pain and depression, respectively. OBJECTIVE: The objective of this study was to identify patient-level predictors associated with inpatient palliative care use in patients with metastatic cancer. METHODS: This was a secondary analysis of the 2018 New Jersey State Inpatient Database. The sample was limited to hospitalized adults with metastatic cancer in New Jersey. Descriptive statistics characterized the sample. Generalized linear modeling estimated the effects of pain and depression on the use of inpatient palliative care. RESULTS: The sample included 28 697 hospitalizations for patients with metastatic cancer. Within the sample, 4429 (15.4%) included a palliative care consultation. There was a 9.3% documented occurrence of pain and a 10.9% rate of depression. Pain contributed to palliative care use, but depression was not predictive of an inpatient care consultation. Age, income category, and insurance status were significant factors influencing use. CONCLUSION: Understanding demographic and clinical variables relative to palliative care use may help facilitate access to palliative care for adults experiencing metastatic cancer. IMPLICATION FOR PRACTICE: Increased screening for pain and depression may expand palliative care use for adults with metastatic cancer receiving inpatient care.

Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life.

BACKGROUND: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community-dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges. METHODS: Semi-structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes. RESULTS: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well-being: self-care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end-of-life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression. CONCLUSIONS: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end-of-life issues.

Palliative Care Interventions Effects on Psychological Distress: A Systematic Review & Meta-Analysis.

BACKGROUND: Managing psychological distress is an objective of palliative care. No meta-analysis has evaluated whether palliative care reduces psychological distress. OBJECTIVES: Examine the effects of palliative care on depression, anxiety, and general psychological distress for adults with life-limiting illnesses and their caregivers. DESIGN: We searched PubMed, PsycInfo, Embase, and CINAHL for randomized clinical trials (RCTs) of palliative care interventions. RCTs were included if they enrolled adults with life-limiting illnesses or their caregivers, reported data on psychological distress at 3 months after study intake, and if authors had described the intervention as "palliative care." RESULTS: We identified 38 RCTs meeting our inclusion criteria. Many (14/38) included studies excluded participants with common mental health conditions. There were no statistically significant improvements in patient or caregiver anxiety (patient SMD: -0.008, P = 0.96; caregiver SMD: -0.21, P = 0.79), depression (patient SMD: -0.13, P = 0.25; caregiver SMD -0.27, P = 0.08), or psychological distress (patient SMD: 0.26, P = 0.59; caregiver SMD: 0.04, P = 0.78). CONCLUSIONS: Psychological distress is not likely to be reduced in the context of a typical palliative care intervention. The systemic exclusion of patients with common mental health conditions in more than 1/3 of the studies raises ethical questions about the goals of palliative care RCTS and could perpetuate inequalities.

To care for them, we need to take care of ourselves: A qualitative study on the health of home health aides.

OBJECTIVE: To understand the perspectives of home health aides (HHAs) toward their own health and health behaviors, and how their job impacts both. DATA SOURCES AND STUDY SETTING: Interviews were conducted with 28 HHAs from 16 unique home care agencies from August 2021 to January 2022. The study was conducted in partnership with the 1199SEIU Training and Employment Fund, a labor-management fund of the largest health care union in the US. STUDY DESIGN: A qualitative study with English and Spanish-speaking HHAs. Interviews were conducted using a semi-structured topic guide, informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health Model. To be eligible, HHAs had to be currently employed by a home care agency in New York, NY. DATA COLLECTION/EXTRACTION METHODS: Interviews were recorded, professionally transcribed, and analyzed thematically. PRINCIPAL FINDINGS: The 28 HHAs had a mean age of 47.6 years (SD 11.1), 39% were non-Hispanic Black, 43% were Hispanic, and they had a mean of 14.1 years (SD 7.8) of job experience. Five themes emerged; HHAs were: (1) Healthy enough to work, but were managing their own chronic conditions while working; (2) Motivated to be healthy, in part driven by their desire to care for others; (3) Worked closely with sick patients, which influenced their perceptions of health; (4) Experienced occupational and patient-level barriers to practicing healthy behaviors; (5) Sought support and resources to improve their health and wellbeing. CONCLUSIONS: HHAs have numerous health challenges, many of which are influenced by their job. Culturally and occupationally tailored interventions may mitigate the barriers that HHAs experience to achieve optimal health.

Food Insecurity and Mental Health Trajectories during the COVID-19 Pandemic: Longitudinal Evidence from a Nationally Representative Survey.

Food insecurity and mental disorders are pressing public health issues during COVID-19. Empirical evidence on the extent to which food insecurity affects mental health outcomes of American adults as the pandemic unfolds remains limited. Longitudinal data from the Understanding Coronavirus in America survey collected biweekly between April and December 2020 were used (N=4,068). Respondents were asked about their food insecurity experiences and stress, anxiety, and depressive symptoms. Linear mixed-effect models were estimated. Food insecurity was associated with higher levels of stress, anxiety, and depressive symptoms. Stress, anxiety, and depressive symptoms declined among food-secure U.S adults. However, mental health trajectories of respondents with various food insecurity categories remained stable or worsened over time. The mental health gap between food-secure and food-insecure groups widened over time. Food insecurity has substantial mental health implications amidst the pandemic. Screening for and addressing food insecurity may alleviate the mental health burden borne by food-insecure people.

Older patients' and their caregivers' understanding of advanced care planning.

PURPOSE OF REVIEW: The aim of this study was to review the recent literature (2019-2021) on older patients' and their caregivers' understanding of advance care planning. RECENT FINDINGS: Recent studies highlight the continued gaps in knowledge about advance care planning for older adults with cancer and their caregivers both domestically and abroad. The recent literature also revealed that there is a lack of research methodology to assess knowledge of advance care planning reliably and validly in older adults with cancer and their caregivers given the lack of uniform scales to measure knowledge of advance care planning. SUMMARY: Older adults with cancer are at an elevated risk of death from their illness, and it is essential they understand how advance care planning can improve their quality of life, facilitate goal congruent care and ultimately decrease medical expenditures at end of life. In order to engage in a process such as advance care planning, patients must know what it is and how it can be helpful to them. The lack of understanding about advance care planning presents a significant barrier to patients engaging in the process. Public health campaigns to increase advance care planning knowledge are needed to ensure that older adults with cancer and their caregivers understand how this service can be helpful to them as they approach end of life.