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.

Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values.

Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

Communicating with LGBTQ+ persons at end of life: A case-based analysis of interdisciplinary palliative clinician perspectives.

OBJECTIVE: Lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ+) persons with serious illness and their families often experience end-of-life (EOL) care disparities, such as homophobia and transphobia, disrespect and mistreatment, and exclusion of significant others or life partners. The aim of the study was to explore interdisciplinary clinicians' communication knowledge and priorities using a case of a gay man at EOL and his same-sex, cisgender spouse. METHODS: Interdisciplinary clinicians (n = 150) who participated in a national 3-day communication training program, rooted in Adult Learning Theory and supported by the National Cancer Institute, responded to open-ended questions about a composite case study emphasizing diversity challenges relevant to LGBTQ + communities in the EOL context. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (48%), social work (35%) and chaplaincy (17%) responded to the survey. Five themes emerged: 1) provision of patient-centered care; 2) legal and ethical factors inform care and decision making; 3) considerations of same-sex spouse or couple context; 4) dynamics and role of family of origin; and 5) elements of inclusive clinical care. CONCLUSIONS: LGBTQ + inclusive communication training is essential for all palliative clinicians to deliver culturally safe care. Our findings have implications for identifying unconscious bias, addressing discriminatory care, filling clinician knowledge gaps, and informing educational interventions to support LGBTQ + inclusion. Future research must focus on micro- and macro-level communication issues that shape the quality of palliative and EOL care for patients and chosen family members.

Integrating evidence-based communication principles into routine cancer care.

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments.

Objective: Open communication during appointments exemplifies person-centered care. The current study characterized questions asked by persons with neurologic illnesses and their caregivers-and clinicians' responses to those questions-during initial outpatient palliative care appointments. Methods: We coded type (direct or indirect) and topic of questions stated by patients and their caregivers in audio recordings from 38 initial outpatient palliative care appointments. We also coded the completeness and quality features of clinicians' responses. Results: Patients and caregivers stated 556 total questions; most were direct questions (79.7%) and primarily about symptoms, treatment, and lifestyle issues. Clinicians responded to more than 90% of all questions. Responses to both question types were similar in completeness and quality, but clinicians more frequently offered support in response to direct questions and gave recommendations in response to indirect questions. Conclusion: Persons with neurologic illnesses and their caregivers use different question types to obtain information about symptoms and treatment during initial palliative care appointments. Results may guide clinician training and patient education for optimizing information exchange in palliative care. Innovation: This study is the first to explore patient and caregiver use of indirect questions in neuropalliative care appointments and the quality of clinicians' responses to those questions.

Palliative Care Clinician Perspectives on Person-Centered End-of-Life Communication for Racially and Culturally Minoritized Persons with Cancer.

The aim of this study was to examine interdisciplinary clinicians' perceptions of priorities in serious illness communication and shared decision-making with racially and culturally minoritized persons at end of life. Clinicians (N = 152) read a detailed case study about a patient self-identifying as Black and American Indian who describes mistrust of the healthcare system. Participants then responded to three open-ended questions about communication strategies and approaches they would employ in providing care. We conducted a thematic analysis of participants' responses to questions using an iterative, inductive approach. Interdisciplinary clinicians from nursing (48%), social work (36%), and chaplaincy (16%), responded to the study survey. A total of four themes emerged: (1) person-centered, authentic, and culturally-sensitive care; (2) pain control; (3) approaches to build trust and connection; and (4) understanding communication challenges related to racial differences. Significant efforts have been made to train clinicians in culturally inclusive communication, yet we know little about how clinicians approach "real world" scenarios during which patients from structurally minoritized groups describe care concerns. We outline implications for identifying unconscious bias, informing educational interventions to support culturally inclusive communication, and improving the quality of end-of-life care for patients with cancer from minoritized groups.

Development and evaluation of a national careers in aging webinar series for psychology trainees.

Trainees may be interested in careers in aging but unfamiliar with career options, leading to a shortage in the geriatric workforce. In response to needs identified at a national geropsychology training conference, a multisite faculty group developed a six-session webinar series about careers in geropsychology, detailing career options in six unique settings. Each webinar session featured a moderated discussion with a panel of four professionals currently employed in the career of interest. The webinar was advertised to clinical and counseling psychology trainees with a potential interest in age-related careers, with evaluation of the series primarily including trainees from graduate programs, clinical internships, and postdoctoral fellowships. Participants rated their attitudes and beliefs about each career option at pre- and post-discussion. On average, each webinar session was attended by 48 individuals (SD = 12, range = 33-60). At baseline, attendees reported significantly more interest in careers in clinical practice compared to other careers, and interest in university settings increased from pre- to post-discussion. Across all six sessions, participants reported increased understanding of training experiences that would be helpful in pursuing that specific career. Findings point to the feasibility and utility of webinars for enhancing interest and confidence in pursuing careers in aging.

Empathic communication between clinicians, patients, and care partners in palliative care encounters.

OBJECTIVE: Palliative care encounters often involve empathic opportunities conveyed by patients and their care partners. In this secondary analysis, we examined empathic opportunities and clinician responses with attention to how presence of multiple care partners and clinicians shapes empathic communication. METHODS: We used the Empathic Communication Coding System (ECCS) to characterize emotion-focused, challenge-focused, and progress-focused empathic opportunities and responses in 71 audio-recorded palliative care encounters in the US. RESULTS: Patients expressed more emotion-focused empathic opportunities than did care partners; care partners expressed more challenge-focused empathic opportunities than did patients. Care partners initiated empathic opportunities more frequently when more care partners were present, though they expressed fewer as the number of clinicians increased. When more care partners and more clinicians were present, clinicians had fewer low-empathy responses. CONCLUSION: The number of care partners and clinicians present affect empathic communication. Clinicians should be prepared for empathic communication focal points to shift depending on the number of care partners and clinicians present. PRACTICE IMPLICATIONS: Findings can guide development of resources to prepare clinicians to meet emotional needs in palliative care discussions. Interventions can coach clinicians to respond empathically and pragmatically to patients and care partners, particularly when multiple care partners are in attendance.

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.

Effects of a Patient Question Prompt List on Question Asking and Self-Efficacy During Outpatient Palliative Care Appointments.

CONTEXT: Question prompt lists (QPLs) promote participation during medical appointments, including in the context of serious illness care. However, no studies have used parameters of a theoretical framework to examine the effects of QPL use in outpatient palliative care. OBJECTIVES: The current pilot randomized controlled trial evaluated use of a 25-question QPL during initial outpatient palliative care appointments. We applied tenets of Self-Efficacy Theory to investigate how use of a QPL affected appointment participation and perceived self-efficacy. METHODS: Participants were patients and care partners attending the patient's first palliative care appointment. Participants either received a QPL before the appointment (n = 29 appointments) or usual care (n = 30 appointments). Audio recordings of appointments were coded for total questions asked. Participants reported perceived self-efficacy in question asking pre- and postappointment. Analysis of variance was used to compare appointment participation between study conditions, and a linear mixed effects model was used to compare changes in ratings of perceived self-efficacy. RESULTS: Participants who received the QPL did not ask significantly more questions compared to participants in usual-care appointments. There was a main effect of time on self-efficacy in question asking, such that self-efficacy increased from pre- to postappointment, but there was no effect of the intervention. CONCLUSION: Despite their promise in previous studies, results of the current study suggest that QPLs may lack potency to shift patient and care partner question asking in palliative care appointments, and that other mechanisms outlined in Self-Efficacy Theory may characterize the relation between question asking and self-efficacy.

House Hunters, Gerontology Style: a problem-based learning classroom activity for undergraduate students.

Problem-based learning is an evidence-based, pedagogical approach that invites students to solve complex, real-life problems using knowledge learned in the classroom. Effective use of problem-based learning in undergraduate gerontology courses, specifically, is likely to deepen students' knowledge about course content related to aging and may also promote students' long-term interest in gerontology. House Hunters: Gerontology Style is a problem-based learning activity that can be used in small-group discussions to facilitate students' understanding of issues related to relocation and homebuying in older adulthood. In this activity - based on the popular television show - students act as real estate agents for a fictional older couple relocating closer to adult children. Assignment features can be tailored easily by the instructor to optimize specific learning objectives. In an evaluation of the activity, students who completed this activity reported that it was engaging, that it enabled them to apply material from the class, and that it facilitated their application of course material to a "real world" problem. Suggestions for modifications to future iterations of this assignment may include a more pointed focus on budgetary constraints on homebuying in older adulthood, approaching homebuying from a life course lens, and considering the role of disparities in the home buying process.

Older adults' perceptions and experiences of ageism during the COVID-19 pandemic.

The current study investigates older adults' perceptions of ageism in the United States during the COVID-19 pandemic. Using tenets of Stereotype Embodiment Theory and the Behaviors from Intergroup Affect and Stereotypes Map framework, we sought to (a) examine whether older adults experienced ageism as self-relevant during the pandemic and (b) understand whether older adults experienced certain media messages and interpersonal behaviors during the pandemic and interpreted them as being motivated by potentialpaternalistic age stereotypes. Older adults aged 65 and older recruited from the community (n = 73) participated in a semi-structured interview about their perspectives on ageism toward older adults during the pandemic. Participants also completed an online survey about their experiences with a range of messages and interpersonal behaviors throughout the pandemic. We thematically analyzed interview data and identified three primary themes: self-relevance of age stereotypes; awareness of negative, overgeneralized portrayals of older adults; and defenses against self-relevance of age stereotypes. Survey responses were analyzed using descriptive statistics and frequency counts and suggest that participants attributed messages and behaviors potentially imbued with paternalistic ageism as motivated primarily by care and concern for older adults. The findings add to the field's understanding of older adults' experiences and perceptions of ageism in the media and in interpersonal behaviors in the context of COVID-19.

Empathic Communication in Specialty Palliative Care Encounters: An Analysis of Opportunities and Responses.

Background: Although empathic responding is considered a core competency in specialty palliative care (PC), patterns of empathic communication in PC encounters are not well understood. Objectives: In this secondary analysis, we delineate types and frequency of empathic communication and examine relationships between patient empathic opportunities and clinician responses. Design: We used the Empathic Communication Coding System to analyze empathic opportunities across three types: emotion (i.e., negative affective state), progress (i.e., stated recent positive life event or development), and challenge (i.e., stated problem or recent, negative life-changing event) and clinician responses. Setting/Subjects: Transcripts from a pilot randomized trial of communication coaching in specialty PC encounters (N = 71) audio-recorded by 22 PC clinicians at two sites in the United States: an academic health system and a community-based hospice and PC organization. Results: Empathic opportunities were frequent across encounters; clinicians often responded empathically to those opportunities (e.g., confirming or acknowledging patients' emotions or experiences). Even though challenge empathic opportunities occurred most frequently, clinicians responded empathically more often to progress opportunities (i.e., 93% of the time) than challenge opportunities (i.e., 75% of the time). One in 12 opportunities was impeded by the patient or a family member changing the topic before the clinician could respond. Conclusions: PC patients frequently express emotions, share progress, or divulge challenges as empathic opportunities. Clinicians often convey empathy in response and can differentiate their empathic responses based on the type of empathic opportunity. PC communication research and training should explore which empathic responses promote desired patient outcomes.

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.

Assessing the Care Modality Preferences and Predictors for Digital Mental Health Treatment Seekers in a Technology-Enabled Stepped Care Delivery System: Cross-sectional Study.

BACKGROUND: Access to mental health services continues to be a systemic problem in the United States and around the world owing to a variety of barriers including the limited availability of skilled providers and lack of mental health literacy among patients. Individuals seeking mental health treatment may not be aware of the multiple modalities of digital mental health care available to address their problems (eg, self-guided and group modalities, or one-to-one care with a provider). In fact, one-to-one, in-person treatment is the dominant care model with a masters- or doctoral-level trained mental health provider, and it may or may not be the appropriate or preferred level of care for an individual. Technology-enabled mental health platforms may be one way to improve access to mental health care by offering stepped care, but more research is needed to understand the care modality preferences of digital mental health care seekers because additional modalities become increasingly validated as effective treatment options. OBJECTIVE: The purpose of this study was to describe and evaluate the predictors of care modality preferences among individuals enrolled in a technology-enabled stepped mental health care platform. METHODS: This exploratory, cross-sectional study used employee data from the 2021 Modern Health database, an employer-sponsored mental health benefit that uses a technology-enabled platform to optimize digital mental health care delivery. Chi-square tests and one-way analysis of variance (ANOVA) were conducted to evaluate associations among the categorical and continuous factors of interest and the preferred care modality. Bivariate logistic regression models were constructed to estimate the odds ratios (ORs) of preferring a one-on-one versus self-guided group, or no preference for digital mental health care modalities. RESULTS: Data were analyzed for 3661 employees. The most common modality preference was one-on-one care (1613/3661, 44.06%). Approximately one-fourth of the digital mental health care seekers (881/3661, 24.06%) expressed a preference for pursuing self-guided care, and others (294/3661, 8.03%) expressed a preference for group care. The ORs indicated that individuals aged 45 years and above were significantly more likely to express a preference for self-guided care compared to individuals aged between 18 and 24 years (OR 2.47, 95% CI 1.70-3.59; P<.001). Individuals screening positive for anxiety (OR 0.73, 95% CI 0.62-0.86; P<.001) or depression (OR 0.79, 95% CI 0.66-0.95; P=.02) were more likely to prefer one-on-one care. CONCLUSIONS: Our findings elucidated that care modality preferences vary and are related to clinical severity factors and demographic variables among individuals seeking digital mental health care.

The Feasibility and Acceptability of an Intergenerational, Web-Based Intervention to Enhance Later-Life Family Care Planning.

BACKGROUND AND OBJECTIVES: Adult children collaborate with older parents on care needs, yet later-life families are often uncertain about how to approach these conversations. Using the McMaster Model of Family Functioning as a framework, we developed a web-based tool for later-life families to enhance communication, knowledge, and problem solving around parent preferences for care. RESEARCH DESIGN AND METHODS: Participants were older adult parents aged 65+ and at least one of their adult children. Families answered questions about the parent's care preferences via a web-based survey. Responses were aggregated in a tailored PDF that was distributed to each participant. Descriptive statistics were calculated to examine recruitment, retention, and satisfaction with the program. Repeated measures analyses of variance were calculated to determine preliminary efficacy of the intervention. RESULTS: This study included 142 participants across 49 families (n = 49 older adult parents, n = 93 adult children). Of them, 75.4% completed all three phases of the study while 18.3% completed two phases and 6.3% completed only one phase. Seventy-four percent of participants reported being satisfied or very satisfied with the intervention. At baseline, most families were modestly incongruent in their ratings of future care preferences. Participants reported increased conversations about care across the course of the study (F(1.71,179.32) = 42.18, p < .001). DISCUSSION AND IMPLICATIONS: This study demonstrated that a web-based intervention to enhance intergenerational communication is feasible, acceptable, and has preliminary efficacy to improve intergenerational communication. Despite recruitment challenges, similarly designed web-based resources may improve accessibility and scalability of intergenerational communication-enhancing interventions.