A qualitative exploration of factors influencing healthcare utilization among rural Missourians: "We have to be bleeding, broken".

Researchers performed a hybrid inductive-deductive thematic analysis of 25 individual interviews to explore factors influencing healthcare utilization in rural Missouri. Data indicated that a desire for self-sufficiency, preference for natural interventions, and poor perception of rural healthcare quality may deter healthcare utilization. Influential subjective norms included respect for toughness and resilience, conservative approach to healthcare, view of the body as an instrument, and influence of faith and religion. Financial barriers and lack of accessible healthcare options were noted as key structural obstacles. Findings emphasize the importance of individual, cultural, and structural factors in shaping healthcare utilization in underserved communities.

Family caregiver narratives of hospice death vigils.

BACKGROUND: Often, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore the stories and experiences of family caregivers of hospice patients who participated in death vigils. METHODS: Qualitative analysis of interviews with 50 hospice family caregivers explored the experiences and memories affiliated with death vigils. Grounded in the Hospice Use Model, a Framework Analysis method was used to analyse transcripts and identify themes to answer the research questions. RESULTS: Hospice family caregivers identified community resources, community health resources, hospice agency factors and individual patient and caregiver factors as impacting their participation in the death vigil and their memory of the experience. CONCLUSIONS: Family members perceived and remembered both positive and negative experiences during their death vigil. Their narratives included recommendations for change in the death vigil, including advice for others going through the vigil, changes in operational and clinical care during the vigil and policy changes needed to improve the experience.

The Secrets of the Backstage: Directing Death Vigils.

Background: The majority of hospice patients are over the age of 65, and the majority of hospice deaths occur in private homes. As a hospice patient's disease progresses, death becomes imminent and family and friends gather around to say good-bye. These private vigils are the culmination of the hospice experience and reflect both the strengths and the challenges surrounding hospice care. The purpose of this study was to explore the stories and experiences of hospice staff with death vigils, unveiling the secrets of home deaths and identifying barriers to a good death. Methods: Qualitative analysis of interviews with 25 hospice staff representing 11 different hospice agencies explored the emotions and challenges of directing and managing the vigil experience. Based on Erving Goffman's dramaturgical model, the experience is explored in depth to unveil a private experience in hopes of enlightening the public on what death in the home looks and feels like. Co-coding of stories and validation of findings by hospice nurses and physicians assure the trustworthiness of the data. Results: Hospice staff share narratives related to family and caregiver burden, challenges with symptom management, frustrations with staffing shortages, and administrative burdens surrounding the experience of death vigils. Conclusions: The family and hospice clinician's experiences with the final act of dying at home are sometimes challenged by the intermittent nature of home care during the final days.

Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Background: Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers. Objective: We sought to inform the adaptation of a pain education intervention for hospice family caregivers to the context of dementia by eliciting feedback on the educational content covered in adapted intervention materials. Design: We conducted a multimethod, formative research study to inform the adaptation of an existing, evidence-based intervention. Setting/Subjects: The study included a purposively recruited sample (n = 33) of hospice professionals (n = 18) and family caregivers (n = 15) from across the United States. Measurements: Participants quantitatively rated the importance of each of the eight pain concerns presented in the adapted intervention materials (1 = not important to 3 = very important) and provided qualitative feedback via Zoom interview on the acceptability, clinical accuracy, and potential benefits of the adapted content. We analyzed quantitative data via descriptive statistics and qualitative data via content analysis. Results: Participants rated the adapted educational content as highly important (rangemean = 2.56-3.00), particularly regarding concerns about caregivers' pain assessment, communicating with the hospice team about pain, and addressing misinformation regarding pain medication outcomes. Participants also provided suggestions to strengthen specific educational messages to improve comprehension and uptake. Conclusions: Findings support the continued development and testing of the adapted intervention.

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients.

BACKGROUND: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients. METHODS: Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling. RESULTS: A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = -.163, se = .057) when accounting for relevant covariates. CONCLUSION: Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

Identifying the Unmet Needs of People Living With Amyotrophic Lateral Sclerosis: A National Survey to Inform Interdisciplinary Palliative Care.

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy.

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.

Live Discharge of Hospice Patients with Alzheimer's Disease and Related Dementias: A Systematic Review.

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.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Elevating Home Health Aide Input in Co-Creation of COVID-19 Vaccine Messaging.

Home health aides (HHAs) care for patients highly vulnerable to COVID-19 and are disproportionately women from minority communities that have been adversely impacted by COVID-19. Yet, direct care workers are less likely to be vaccinated against COVID-19 compared to others. As the pandemic evolves, interest in vaccination may decrease suggesting the need for relevant vaccine messaging to HHAs. Objectives: (1) to describe HHAs and administrators' perspectives related to COVID-19 vaccination messaging, and (2) to co-design a Communication Toolkit to create COVID-19 vaccine messages. Methods: HHAs and administrators from 4 geographically diverse Palliative Care Research Cooperative (PCRC) hospice agencies were recruited for a multi-method process involving qualitative interviews (17 HHAs and 5 administrators), community engagement (CE) studios, and development of a Communication Toolkit. Interviews were guided by the PEN-3 conceptual framework to explore barriers and facilitators to vaccination. Data were analyzed using qualitative content analysis. Results: Despite power differences, HHAs and administrators share a commitment to protecting patients affected by serious illness. HHAs desire vaccine messaging that includes personal narratives, good news about the vaccine, and facts about benefits and risks of the vaccine. Preferred message formats include the agency intranet, daily briefings, or "little seeds" (ie, short, high-impact information). Through the studios, HHAs provided input on a Toolkit prototype with messages tailored to the context of home care. Conclusions: Grounded in the commitment of HHAs and administrators to protecting vulnerable patients, we co-created an adaptable Communication Toolkit to address COVID-19 vaccination misinformation and mistrust among direct care workers.

Sense making in the wake of familial death: "I continue to work through those feelings".

Sense making is especially common in bereavement when a death challenges an individual's existing worldview. Thus, it is often discussed in the context of statistically atypical deaths, such as the death of a child or death by suicide, that are apt to create a crisis of meaning. Less understood is the process of sense making following more statistically normative deaths, such as those that occur in old age following prolonged illness. In this descriptive phenomenological study, researchers analyzed qualitative interviews and digital narratives created by six individuals who had experienced the death of an older family member with dementia, seeking to identify the essential nature of sense making during bereavement following so-called "normal" losses. Three themes (memorializing the whole person, reflecting on the caregiving experience, and emotional sense making) were identified, shedding light on this specific meaning making process among individuals representing a large and growing segment of the population.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

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.

Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.

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.

"Second set of eyes:" Family caregivers and post-acute home health care during the COVID-19 pandemic.

OBJECTIVES: This study aimed to explore how the COVID-19 pandemic shaped the experiences of family caregivers of older adults who were hospitalized with COVID-19 and discharged to post-acute, skilled home health care (HHC) services. METHODS: Thirty semi-structured interviews with family caregivers of older adults who received services from a large, not-for-profit HHC agency following hospitalization with COVID-19 infection were conducted between March-July 2021 and analyzed using thematic analysis. RESULTS: During the pandemic, family caregivers encountered societal and institutional barriers to assisting older adults across post-acute care transitions. These barriers included hospital visitation restrictions as well as difficulties accessing community-based resources and medical equipment. Despite limitations and delays in HHC services, many family caregivers identified post-acute HHC, delivered in-person or via telehealth, as important to addressing care gaps for older adults, as well as their own needs for training and support during the pandemic. CONCLUSIONS: Policies intended to reduce the spread of COVID-19 introduced new challenges for caregivers during HHC. However, HHC agencies and their staff adapted within this context to provide a needed bridge of support.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

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.

Problem-Solving Dimensions among Caregivers of People with Cancer Receiving Outpatient Palliative Care.

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.