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Patients undergoing oncology-related gynecologic surgical procedures experience substantial symptom burden and distress. Support from specialist palliative care teams may benefit these patients and their families; however, an evidence-informed approach to the integration of palliative care and gynecologic oncology is needed. To inform such an approach, a scoping review synthesizing current evidence on the palliative care needs of patients and families in gynecologic surgical oncology was performed. Reviewers performed a structured search of online databases CINAHL, Scopus, PsycINFO, MEDLINE, and PubMed in addition to the grey literature to identify relevant studies published between 2011 and June 11th, 2021. The original search identified 993 articles, which were dually screened for study inclusion, resulting in a final sample of articles from which data were systematically extracted and synthesized. This review of 59 publications predominantly consisted of European studies (n=26, 44.1%), described quantitative study methods (n=47, 79.6%), followed an observational study design (n=49, 83.1%), and focused on psychological impact of treatment as a major topic of study (n=21, 35.6%). The dataset also described sexual function of women post treatment (n= 15, 25.4%), quality of life (n=10, 16.9%), therapeutic decision making (n= 9, 15.2%), pain assessment (n=2, n=3.6%), and medication for symptom management (n=2, 3.6%). Explicit discussion of specialist palliative care involvement was rare. The needs of patients and families in gynecologic surgical oncology are well-suited to palliative care collaboration; however, the body of literature on palliative care services provided to this unique population is underdeveloped.

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Facebook ® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [ Journal of Gerontological Nursing, 48 (7), 10–17.]

Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic.Researchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020.Researchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis.Hospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective.Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.

Objective: To describe key stakeholders’ perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders’ general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care’s definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.

BACKGROUND: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. OBJECTIVES: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. DESIGN: Secondary analysis of baseline data from two randomized clinical trials. SETTING/SUBJECTS: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. MEASUREMENTS: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index–Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). RESULTS: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. CONCLUSIONS: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

Purpose Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. Methods The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. Results Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. Conclusion Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. Trial registration This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).

Family caregivers of people with cancer encounter a wide range of problems including challenges managing patients' symptoms, difficulties navigating complex healthcare systems, and financial stressors associated with caregiving. Outpatient palliative care teams are ideally positioned to help caregivers respond to these challenges; however, little evidence is available to inform problem-solving support for caregivers in this setting. This article presents results from a secondary analysis of data obtained as part of a randomized clinical trial of a problem-solving intervention for family caregivers of people with cancer receiving outpatient palliative care. It describes the extent to which caregivers report adoption of positive and negative problem orientations and use of rational, impulsive, and avoidant problem-solving styles, and examines whether these problem-solving dimensions differ by age and gender. Results reveal statistically significant negative correlations between caregiver age and positive and negative problem orientations and use of a rational problem-solving style, and statistically significant gender differences with regard to negative problem orientation and use of an impulsive problem-solving style. Findings from this exploratory study highlight unique potential strengths and needs of caregivers, and set the stage for future research on problem-solving among cancer caregivers in the growing field of outpatient palliative care.

Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “ interrupted” sleep and frequent night-waking due to “ on-call” “ vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting.This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials?The characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial.Overall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving.The benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.

Objective Investigators sought to determine how family caregivers’ psychological and physical wellbeing influenced their perceptions of communication with hospice providers. Methods Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers’ (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. Results Caregivers’ anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers’ perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. Conclusions Variation in caregivers’ perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers’ perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver’s social network—especially other family—is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.

Background: Hospice is intended to promote the comfort and quality of life of dying patients and their families. When patients are discharged from hospice prior to death (ie, experience a “live discharge”), care continuity is disrupted. This systematic review summarizes the growing body of evidence on live discharge among hospice patients with Alzheimer’s Disease and related dementias (ADRD), a clinical subpopulation that disproportionately experiences this often burdensome care transition. Methods: Researchers conducted a systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Reviewers searched AgeLine, APA PsycINFO (Ovid), CINAHL Plus with Full Text, ProQuest Dissertations & Theses Global, PubMed, Scopus, and Web of Science (Core Collection). Reviewers extracted data and synthesized findings from 9 records, which reported findings from 10 individual studies. Results: The reviewed studies, which were generally of high quality, consistently identified diagnosis of ADRD as a risk factor for live discharge from hospice. The relationship between race and live hospice discharge was less clear and likely dependent upon the type of discharge under investigation and other (eg, systemic-level) factors. Research on patient and family experiences underscored the extent to which live hospice discharge can be distressing, confusing, and associated with numerous losses. Conclusion: Research specific to live discharge among ADRD patients and their families is limited. Synthesis across included studies points to the importance for future research to differentiate between types of live discharge—revocation vsversus decertification—as these are vastly different experiences in choice and circumstances.

Palliative social work in rural communities supports seriously ill patients and their families in the places they call home, from remote rural Alaskan fishing villages to small Appalachian mountain towns and countless locations in between. Social work’s person-in-environment perspective provides a useful lens for understanding the biopsychosocial and spiritual realities of living with serious illness and enables an in-depth understanding of how those realities are shaped by rural ways of life. Providing access to high-quality palliative care in rural communities remains a pressing challenge for social workers, as does ensuring that care is responsive to the unique values, preferences, and experiences of rural patients and their families. Social work leadership is needed across the full practice continuum in rural palliative care as social workers harness community strengths to provide patient- and family-centered care.

Objective: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD). Design: The study is a mixed-method, 2-group, randomized controlled trial. Setting: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States. Participants: Participants include hospice family caregivers of PLWD. Intervention: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group. Outcomes Measured: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants’ perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present).

The translation of evidence-based interventions into routine hospice care is impeded by numerous barriers, including a disconnect between research priorities and clinical care. To inform the development of a more practice-informed agenda for hospice intervention research, our team conducted a qualitative descriptive study, posing the following research questions: 1) How do hospice staff members describe their most significant work-related challenges? and 2) What regulatory changes do hospice staff members report would most improve hospice care? To answer these research questions, we interviewed 22 hospice staff members and then conducted a template analysis of the interview content. In doing so, we identified themes that described challenges in 5 key areas: time, documentation, professional roles, recruitment and retention, and burn-out. In addition, we identified a perceived need among hospice staff members for more regulatory flexibility and clarity. Based on our findings, we conclude that a practice-informed agenda for hospice intervention research includes the development and testing of interventions that increase efficiency, explicitly speak to the humanity of hospice care, and elevate the roles of all members of the interdisciplinary team.

Objective The goal of this study was to explore whether features of recorded and transcribed audio communication data extracted by machine learning algorithms can be used to train a classifier for anxiety. Materials and Methods We used a secondary data set generated by a clinical trial examining problem-solving therapy for hospice caregivers consisting of 140 transcripts of multiple, sequential conversations between an interviewer and a family caregiver along with standardized assessments of anxiety prior to each session; 98 of these transcripts (70%) served as the training set, holding the remaining 30% of the data for evaluation. Results A classifier for anxiety was developed relying on language-based features. An 86% precision, 78% recall, 81% accuracy, and 84% specificity were achieved with the use of the trained classifiers. High anxiety inflections were found among recently bereaved caregivers and were usually connected to issues related to transitioning out of the caregiving role. This analysis highlighted the impact of lowering anxiety by increasing reciprocity between interviewers and caregivers. Conclusion Verbal communication can provide a platform for machine learning tools to highlight and predict behavioral health indicators and trends.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

Dissemination and implementation of evidence-based interventions is best accomplished with input from stakeholders. This project used a Discrete Choice Experiment to determine the preferences of a nationwide sample of hospice social workers toward the most preferred way to scale the delivery of an online support group. While the majority of social workers preferred referring caregivers to online support groups facilitated outside their agency rather than to facilitate groups themselves, the results were not statistically significant. Social workers reported concerns with both options. Further work with stakeholders is needed to develop implementation strategies and determine the feasibility of both options.

BACKGROUND: Speech and language cues are considered significant data sources that can reveal insights into one’s behavior and well-being. The goal of this study is to evaluate how different machine learning (ML) classifiers trained both on the spoken word and acoustic features during live conversations between family caregivers and a therapist, correlate to anxiety and quality of life (QoL) as assessed by validated instruments. METHODS: The dataset comprised of 124 audio-recorded and professionally transcribed discussions between family caregivers of hospice patients and a therapist, of challenges they faced in their caregiving role, and standardized assessments of self-reported QoL and anxiety. We custom-built and trained an Automated Speech Recognition (ASR) system on older adult voices and created a logistic regression-based classifier that incorporated audio-based features. The classification process automated the QoL scoring and display of the score in real time, replacing hand-coding for self-reported assessments with a machine learning identified classifier. FINDINGS: Of the 124 audio files and their transcripts, 87 of these transcripts (70%) were selected to serve as the training set, holding the remaining 30% of the data for evaluation. For anxiety, the results of adding the dimension of sound and an automated speech-to-text transcription outperformed the prior classifier trained only on human-rendered transcriptions. Specifically, precision improved from 86% to 92%, accuracy from 81% to 89%, and recall from 78% to 88%. INTERPRETATION: Classifiers can be developed through ML techniques which can indicate improvements in QoL measures with a reasonable degree of accuracy. Examining the content, sound of the voice and context of the conversation provides insights into additional factors affecting anxiety and QoL that could be addressed in tailored therapy and the design of conversational agents serving as therapy chatbots.

The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach α for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.

Objectives To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications. Data Sources Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer. Conclusion The evidence base is growing; however, more studies are needed to test the effectiveness of technology. Implications for Nursing Practice Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.

Objectives Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing. Design In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC). Setting Home hospice. Participants A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years. Intervention PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions. Measurements Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview. Results Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition. Conclusion The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

Background: Understanding challenges of family caregivers within specific palliative care contexts is needed. Objective: To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care. Methods: We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States. Results: Caregiver worry and difficulty managing side effects or symptoms other than pain, constipation, and shortness of breath were most common. "Financial concerns" was cited most as a "top 3" problem. Almost half of caregivers reported "other" problems, including family members, patient physical function, care coordination, and patient emotional state. Conclusions: The most common and most challenging problems of family caregivers of cancer patients receiving outpatient palliative care may differ from those experienced in other serious illness care contexts. Comparative studies on caregiver problems across the cancer care continuum can help develop and refine interventions.

Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Seven themes describing caregivers’ comfort needs were identified including the need to understand, need for self-efficacy, need to derive meaning, need for informal support, need for formal support, need for resources, and need for self-care. Findings have clear implications for palliative nursing, as they directly address cancer family caregivers’ needs in five of the eight domains of care delineated by the National Consensus Project for Quality Palliative Care’s Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers’ needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

When bereaved cancer caregivers have the opportunity to tell stories about their caregiving and bereavement journey, they are better able to make meaning of these experiences. Creating a space where they can share stories with other bereaved caregivers increases social validation, facilitates the meaning-making process, and reduces distress and risk for complicated grief. This study explored the feasibility and acceptability of an innovative storytelling intervention for bereaved family caregivers of cancer patients. Twenty-one participants engaged in the intervention, and eleven were interviewed about their experience. Results indicated study feasibility and intervention acceptability. Suggestions for future intervention were also provided.

Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers ( n = 21) and family caregivers ( n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [ Journal of Gerontological Nursing, 46 (7), 9–14.]

Background and Objectives: Parenting during residency is increasingly common, and resident parents face unique demands on their time and emotional and cognitive resources. Physicians at all levels of training perceive negative impacts of parenting on career and family life. Surveys of program directors (PDs) in other specialties reveal concern about performance and quality of life of parenting residents. The primary aims of this study were to examine family medicine PDs’ perceptions of parenting residents’ performance and the adequacy of parenting support structures. Methods: Data were collected from the 2017 Council of Academic Family Medicine (CAFM) Educational Research Alliance (CERA) Family Medicine Residency Program Directors survey. Directors provided the number and status of parenting residents and rated adequacy of parenting resources, resident performance, and impact of parenting on residents using a Likert scale. Results were compared between male/female PDs and male/female residents. Results: Response rate was 57.1%. Less than half of PDs reported adequate parenting support structures in their program (46%). Over 40% of PDs reported that 81%-100% of female residents who take parental leave end up extending their residency training, the most common response category. PDs did not report gender-based differences in performance of parenting residents. PDs most often reported significantly worse well-being for female parenting residents but perceived improved well-being of male parents. Conclusions: Less than half of family medicine PDs feel their program has adequate parenting resources. Female parenting residents commonly extend residency training. PDs perceive parenting negatively impacts well-being of female residents, but not male residents.

Family caregivers (FCGs) face numerous stressors and are at heightened risk of psychological distress. While theoretical explanations exist linking caregiving stressors with outcomes such as anxiety and depression, limited testing of these theories has occurred among FCGs of patients nearing the end of life.Researchers sought to evaluate mediational relationships among burden experienced by hospice FCGs because of symptom management demands, caregivers' coping responses, and caregivers' psychological distress.Quantitative data for this descriptive exploratory study were collected through survey. Hypothesized relationships among caregiver variables were examined with structural equation modeling.Respondents were FCGs (N = 228) of hospice patients receiving services from a large, non-profit community hospice in the Mid-Southern United States.Burden associated with managing hospice patients' psychological symptoms was shown to predict psychological distress for FCGs. Caregivers' use of escape-avoidance coping responses mediated this relationship.Results suggest that FCGs would benefit from additional tools to address patients' psychological symptoms at end of life. When faced with psychological symptom management burden, caregivers need a range of coping skills as alternatives to escape-avoidance coping.

Context Shared decisions between health care providers and patients and families are replacing the traditional physician-driven plans of care. Hospice philosophy recognizes the patient and family as a unit of care and embraces their role in decision making. Objective The goal of this study was to evaluate the shared decisions between hospice nurses and patients and family members. Methods A secondary analysis of audio recordings of 65 home hospice nurse visits from 65 home hospice nurse visits in 11 different U.S. hospice programs. Results To varying degrees, hospice nurses used all the recommended elements of shared decision making during home visits with patients and families; however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding. Conclusions Hospice staff can benefit from a more purposeful shared decision-making process and a greater focus on assessment of patient and family understanding and ability to implement plans of care.

An emerging body literature exists highlighting the use of Digital Storytelling as an educational, and/or therapeutic intervention. Authors of this manuscript have studied Digital Storytelling as a narrative bereavement intervention designed to help individuals make meaning of adverse life events, like the death of a family member. Until recently, Digital Storytelling is typically delivered in person. The purpose of this article is to describe the steps to implementing Digital Storytelling as a bereavement intervention in a completely virtual setting, using Zoom technology. Best practices and lessons learned for the virtual delivery of Digital Storytelling are provided.

Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an innovative social work intervention that employs Digital Storytelling. This is a narrative technique that combines photography, music, and spoken word to help families bereaved by child death make meaning of their loss and envision a future without their deceased child.

Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives.To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers.We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers' interviews from a randomized clinical trial.We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient.The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver's medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework.The study provided an investigation on hospice family caregivers' difficulties in pain management. The results can inform health-care providers and researchers of family caregivers' challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.

While effective communication is important in the care of seriously ill patients, little is known about communication challenges faced by healthcare providers serving U.S. patients of South Asian origin, one of the fastest growing demographic groups in the United States.Researchers sought to examine communication challenges faced by healthcare providers serving seriously ill South Asian patients and their families and present strategies recommended by providers for effective communication.Researchers conducted a thematic analysis of qualitative data obtained through focus groups and individual interviews with 57 healthcare providers, including physicians, social workers, nurses, chaplains, and others drawn from different healthcare settings in one Midwestern city.While acknowledging the considerable diversity within the U.S. South Asian community, participants discussed three types of communication challenges they often encounter when serving this population: ensuring effective interpretation, identifying a spokesperson, and challenges posed by different cultural norms. Participants shared strategies to address these challenges such as proactively inquiring about patients' and families' preferences and encouraging early appointment of a spokesperson.While providers should avoid stereotyping patients, an awareness of common challenges and adoption of recommended strategies to address these challenges may enhance the provision of culturally responsive person-centered services for seriously ill South Asian patients and their families receiving care in the United States.

Interprofessional collaboration is the foundation of hospice service delivery. In the United States, hospice agencies are required to regularly convene interprofessional meetings during which teams review plans of care for the patients and families they serve. A small body of research suggests that team functioning could be significantly enhanced in hospice interprofessional meetings; however, systematic investigation of this possibility has been limited to date. The purpose of this qualitative study was to better understand the experiences and perspectives of hospice providers who regularly participate in interprofessional meetings as a first step toward improving teamwork in this setting. We interviewed 24 hospice providers and conducted a template analysis of qualitative data to identify barriers and facilitators to effective team functioning in interprofessional meetings. Participants recognised the ways meetings supported high-quality, holistic patient and family care but voiced frustrations over meeting inefficiencies, particularly in light of caseloads they perceived as overly demanding. Time constraints were often viewed as prohibiting the inclusion of interprofessional content and full participation of all team members. Findings suggest that modifications to interprofessional meetings such as standardising processes may enhance meeting efficiency and team functioning.

Background: Although research has linked sleep problems, anxiety, and poor health outcomes among patients’ family members in nonhospice settings, little is known about these often interrelated issues among hospice family caregivers. Objectives: We sought to examine the relationships between sleep problems, anxiety, and global self-rated health among hospice family caregivers. Methods, Setting, and Patients: We conducted a secondary analysis of quantitative data from 395 family caregivers of hospice patients in the Midwest and Southeastern United States. Results: Nearly one-third of the hospice family caregivers who participated in this study experienced clinically noteworthy levels of sleep problems and/or anxiety. Caregivers’ symptoms of anxiety and sleep problems were strongly correlated. Caregivers who reported more frequent sleep problems and higher levels of anxiety reported poorer overall health. Conclusion: Hospice providers, who are charged with attending to the needs of both patients and their family caregivers, may improve their practice by regularly assessing for sleep problems and anxiety among family caregivers and providing appropriate interventions or referrals.

Depression and anxiety are common concerns for hospice caregivers.This study looked at the prevalence and variables associated with hospice caregiver depression and anxiety, as well as the relationship between the two conditions.We did a secondary analysis of preexisting data.Measures included the PHQ-9 and GAD-7.Nearly one-quarter of caregivers were moderately to severely depressed, and nearly one-third reported moderate to severe symptoms of anxiety. Risk factors for both depression and anxiety included younger age and poorer self-rated global health. Depression-specific risk factors included being married and caring for a patient with a diagnosis other than cancer. The sole anxiety-specific risk factor identified was geographic location, as caregivers living in the Southeast were found to have greater anxiety than those in the Midwest.Hospice providers' recognition of family caregivers as both coproviders and corecipients of care underscores the need to more fully assess and respond to depression and anxiety among caregivers.

Background: In the United States, hospice agencies are required to convene interdisciplinary group (IDG) meetings no less frequently than every 15 days to review patients’ care plans. Challenges associated with information sharing during these meetings can impede efficiency and frustrate attendees. Objectives: We sought to examine information sharing in the context of hospice IDG meetings as a first step toward developing an informatics tool to support interdisciplinary collaboration in this setting. Specifically, we wanted to better understand the purpose of information sharing in IDG meetings and determine the type(s) of information required to fulfill that purpose. Methods, Setting, and Participants: In this qualitative descriptive study, we analyzed video recordings of care plan discussions (n = 57) in hospice IDG meetings and individual interviews of hospice providers (n = 24). Results: Data indicated that sharing physical, psychosocial, and spiritual information is intended to optimize hospice teams’ ability to deliver whole-person care that is aligned with patient and family goals and that satisfies regulatory requirements. Conclusion: Information sharing is a key function of hospice teams in IDG meetings. Informatics tools may optimize IDG meeting efficiency by succinctly presenting well-organized and required information that is relevant to all team members. Such tools should highlight patient and family goals and ensure that teams are able to satisfy regulatory requirements.