Adding spontaneity to organizations - what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study.

BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

Behaviors and influencing factors of Chinese oncology nurses towards hospice care: a cross-sectional study based on social cognitive theory in 2022.

BACKGROUND: Although there is growing demand for hospice care in China due to its aging population and increasing cancer rates, the sector remains slow to expand. Oncology nurses are the primary providers of hospice care, but little is known about their behaviors towards hospice care and related factors. METHODS: This cross-sectional study conveniently sampled 933 oncology nurses from six grade A tertiary hospitals in Hubei Province between January to March 2022. The questionnaire was composed of seven parts: general information (including sociodemographic and work-related information), hospice care behaviors, hospice care knowledge, hospice care attitudes, hospice care self-efficacy, hospice care outcome expectancy, and hospice care environment. Data were analyzed using descriptive analysis, independent sample t-tests, one-way ANOVA, Pearson's correlation, multiple linear regression, random forest regression, and BP neural network model analysis. RESULTS: A total of 852 questionnaires were valid. The mean score of hospice care behaviors was 50.47 ± 10.56, with a mean item score of 3.61 ± 0.75. The three highest scoring behaviors were "pain assessment of patients (4.21 ± 0.91)", "satisfying the physical and mental needs of dying patients (4.04 ± 0.92)", and "creating good relationships between the medical staff and family members (4.02 ± 0.87)". The two lowest-scoring behaviors were "proactively recommending medical institutions for hospice care to terminally ill patients and their families (2.55 ± 1.10)" and "proactively talking to patients and families about death-related topics for patients who are critically ill and cannot be reversed (2.87 ± 1.03)." Multiple linear regression, random forest regression, and BP neural network models all showed that the frequency of sharing hospice care experiences with colleagues, hospice care attitudes, hospice care self-efficacy, and hospice care environments were positively associated with hospice care behaviors. CONCLUSIONS: The frequency of hospice care behaviors among Chinese oncology nurses is generally at a moderate to high level. The results provide a basis for promoting hospice care behaviors among oncology nurses in order to improve the quality of life for terminally ill cancer patients.

"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care.

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE: This study explored US South Asian youths' knowledge of, and attitudes towards hospice care. DESIGN: Qualitative study, using focus group discussions. METHODS: Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion. RESULTS: Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care. CONCLUSIONS: Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.

Nonphysical Suffering: An Under-Resourced and Key Role for Hospice and Palliative Care Social Workers.

This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.

Role of Post-Traumatic Growth in Bereavement Outcomes: An Inquiry of Family Caregivers in Hospice.

Background: Family caregivers (FCGs) encounter several physical, psychosocial, and financial struggles while caring for a dying loved one. After their loved one has passed, FCGs face new difficulties as they transition out of the caregiving role and into bereavement. Recent research has focused on the positive adaptive outcomes of bereavement. Objective: This study examined the relationship between core bereavement experiences and post-traumatic growth (PTG) for bereaved hospice FCGs. Design: This is a quantitative cross-sectional mail-in survey. Settings/Subjects: A total of 395 bereaved FCGs of patients who died while under the care of a comprehensive hospice program were surveyed. Measurements: Demographics were collected. Bereavement experiences were assessed using the core bereavement items, and PTG was assessed using the Posttraumatic Growth Inventory (PTGI). Both surveys are validated measures. Results: Two-tailed bivariate correlations were used to analyze the relationships between bereavement experiences and PTG. Significant positive relationships were found between all bereavement experiences and PTG variables (p = <0.01-0.011, r = 0.134-0.290), except for one variable pairing (grief × new possibilities). Participants who reported more intense bereavement experiences also reported greater PTG, especially in the areas relating to others and appreciation of life. Conclusion: FCGs who undergo more intense bereavement experiences tend to experience greater PTG. This information can be used in the future to develop a more comprehensive understanding of the multifaceted nature of grief and loss.

Development of a model and method for hospice quality assessment from natural language processing (NLP) analysis of online caregiver reviews.

OBJECTIVES: With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson's carative model. METHODS: Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed (n = 3393) using Google NLP. RESULTS: Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), "Treating the patient with respect" (+.54), and "Emotional, spiritual, bereavement support" (+.60). Lowest sentiment scores were "Insurance, administrative or billing" (-.37), "Lack of staffing" (-.32), and "Communication with the family" (-.01). SIGNIFICANCE OF RESULTS: In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Hospice Patients' End-of-Life Dreams and Visions: A Systematic Review of Qualitative Studies.

When conscious, about 50% to 60% of hospice patients report a "visitation" by someone who is not there while they dream or are awake: a phenomenon known as End-of-Life Dreams and Visions (ELDVs). Since the dying process is frequently complicated by delirium, ELDVs risk being misidentified as such by professionals and caregivers. To observe these phenomena from patients' perspectives, we conducted a systematic review to aggregate and synthesize the findings from the qualitative studies about ELDVs of patients assisted in hospices to indicate future directions for research and care. MEDLINE/PubMed, Embase, CINAHL, PsycINFO, Scopus, and Web of Science databases were searched, yielding 293 documents after duplicates were removed. Six qualitative articles reporting on five unique studies conducted in hospice settings were included in the meta-synthesis. We generated three main categories: i) typologies of ELDVs reported, ii) emotional consequences, and iii) intersubjective meaning-making. The ELDVs reported were experiences that remained intimate and unsocialized and thus preventing participants from defining a shared sense in their relationships. Training healthcare professionals to recognize ELDVs and take advantage of them in the care relationship is desirable. We also encourage the patient's family members to listen and understand ELDVs when they occur actively. For caregivers to know how to interpret these phenomena may provide them with additional strategies for supporting, reassuring, and strengthening their relationships with their loved ones. The review allowed us to inform healthcare professionals and caregivers about how to help patients share their emotional and identity-related experiences and meaning-making in end-of-life.

Japanese Nursing Staff's Knowledge and Attitude toward Bereavement Care for Couples with Miscarriage/Stillbirth and Its Associated Factors.

Bereavement care is conducted to meet the emotional needs of grieving couples who are devastated by the experience of a miscarriage or stillbirth. From January to April 2022, we distributed a questionnaire that assessed the knowledge and attitudes of Japanese nursing staff (nurses and midwives) in Japan's Chugoku-Shikoku region toward bereavement care for couples with miscarriage/stillbirth. The 370 survey respondents' answers revealed that the nursing staff's knowledge regarding recurrent pregnancy loss and subsequent bereavement care was insufficient. About 41.1% and 64.1% of the respondents had received school and on-the-job education in bereavement care, respectively, and 79.2% expressed willingness to provide such care. Our analyses revealed that the following factors were associated with the nursing staff's knowledge level: parent status, age, reproductive history, midwifery license, work experience and environment, and on-the-job education. The following were correlated with the staff's willingness to provide bereavement care: work environment, midwifery license, bereavement care knowledge, and on-the-job education. Together our findings indicate that education plays a significant role in equipping caregivers to provide effective bereavement care for couples who have experienced a miscarriage or stillbirth.

Effects of online-offline integrated death education on patients with advanced cancer: A before-and-after study.

PURPOSE: To evaluate the effectiveness of the constructed OOIDE intervention in patients with advanced cancer. METHOD: In this study, patients were invited to participate in a 4-week OOIDE intervention. The assessment of patients' ability to cope with death was conducted using a scale in conjunction with interviews. Additionally, patients' 'readiness to die' was assessed. RESULTS: Thirty-two patients with advanced cancer participated in this study. Our intervention significantly enhanced their perspective on life and spirituality, while also reducing their fear of death (P < 0.01). Furthermore, it facilitated their acceptance of death, encouraged a more rational approach to their illness, and fostered an understanding of hospice care, thereby reinforcing their sense of self-worth. Additionally, the intervention improved the relationship between the patient and their families, fostering greater mutual understanding and respect for the patient's perspectives. Comparing the results to the pre-intervention period, there was a significant increase in the number of patients who discussed death with their families and contemplated the place of their passing (P < 0.05). CONCLUSION: OOIDE improves participants' ability to confront death, while also assisting patients' families in the physical and psychological preparations for the loss of their relative.

Mutual support between patients and family caregivers in palliative care: A qualitative study.

BACKGROUND: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. AIM: To identify processes of mutual support between patients and family caregivers in palliative care. DESIGN: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures. SETTING/PARTICIPANTS: Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice. RESULTS: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role. CONCLUSIONS: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.

Good practices in perinatal bereavement care in public maternity hospitals in Southern Spain.

OBJECTIVE: To assess the attitudes and care practices of midwives and nurses in the province of Granada in relation to death care and perinatal bereavement, to determine their degree of adaptation to international standards and to identify possible differences in personal factors among those who best adapt to international recommendations. DESIGN: A local survey of 117 nurses and midwives from the five maternity hospitals in the province was conducted using the Lucina questionnaire developed to explore professionals' emotions, opinions, and knowledge during perinatal bereavement care. Adaptation of practices to international recommendations was assessed using the CiaoLapo Stillbirth Support (CLASS) checklist. Socio-demographic data were collected to establish their association with increased compliance with recommendations. FINDINGS: The response rate was 75.4%, the majority were women (88.9%), with a mean age of 40.9 (SD=1.4) and 17.4 (SD= 10.58) years of work experience. Midwives were the most represented (67.5%) and reported having attended more cases of perinatal death (p = 0.010) and having more specific training (p<0.001.) Of these, 57.3% would recommend immediate delivery, 26.5% would recommend the use of pharmacological sedation during delivery and 47% would take the baby immediately if the parents expressed their wish not to watch them. On the other hand, only 58% would be in favour of taking photos for the creation of memories, 47% would bathe and dress the baby in all cases, and 33.3% would allow the company of other family members. The percentage that matched each recommendation on memory-making was 58%, 41.9% matched the recommendations on respect for the baby and parents, and 23% and 10.3% matched the appropriate delivery and follow-up options, respectively. The factors associated with 100% of the recommendations, according to the care sector, were being a woman, a midwife, having specific training and having personally experienced the situation. KEY CONCLUSIONS: Although the levels of adaptation observed are more favourable than in other nearby contexts, serious deficiencies are identified in the province of Granada with respect to internationally agreed recommendations on perinatal bereavement care. More training and awareness-raising of midwives and nurses is needed, which also considers factors related to better compliance. IMPLICATION FOR PRACTICE: This is the first study to quantify the degree of adaptation to international recommendations in Spain reported by midwives and nurses, as well as the individual factors associated with a higher level of compliance. Areas for improvement and explanatory variables of adaptation are identified, which allow support for possible training and awareness-raising programmes aimed at improving the quality of care provided to bereaved families.

Exploring knowledge, perspectives, and misperceptions of palliative care: A mixed methods analysis.

OBJECTIVES: To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers. SUBJECTS AND METHODS: Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone. RESULTS: Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up." CONCLUSIONS: High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care.

La eficacia de la terapia cognitivo-conductual para el duelo prolongado / Efficacy of cognitive-behavioral therapy for prolonged grief

Antecedentes: El Duelo Prolongado (DP) es una forma patológica del duelo dados los síntomas patentes y el tiempo que perduran, generando malestar y limitando la funcionalidad psicosocial. Durante años se ha empleado la Terapia Cognitivo-Conductual (TCC) para el tratamiento del DP, pero se sugiere que la activación conductual no específica es suficiente, se hallan fallos metodológicos en las muestras de TCC, o se cuestiona si es necesaria la exposición. Objetivo: Analizar si la TCC es realmente eficaz para mejorar el DP en adultos. Método: Se realizó una revisión sistemática mediante la búsqueda en las bases de datos Medline, PsycINFO, PubMed, Scopus y Web of Science desde junio de 2022 hasta febrero de 2023, así como mediante una comunicación personal. Se identificaron 9 estudios que cumplían los criterios de inclusión y exclusión establecidos. Resultados: Se comparan las evaluaciones basales, del postratamiento y seguimiento. Todos los estudios reflejan mejorías superiores en la condición de TCC frente a otras modalidades terapéuticas o frente a la propia TCC sin exposición, a excepción de uno que establece igualdad de eficacia con Eye Movement Desensitization and Reprocessing (EMDR). Se analiza el riesgo de sesgo siguiendo los criterios Cochrane, presentando una adecuada calidad metodológica; el nivel de evidencia científica, 1+; y el grado de recomendación, A. Conclusiones: Los resultados respaldan la eficacia de la TCC para el tratamiento del DP en la población adulta, aunque es fundamental realizar nuevos estudios que fortalezcan esta evidencia. Hasta entonces, se recomienda su aplicación a quienes padezcan DP (AU)

Background: Prolonged Grief (PG) is a pathological form of bereavement given the overt symptoms and the period of time they endure, generating distress and limiting psychosocial functioning. For years, Cognitive Behavioral-Therapy (CBT) has been used for the treatment of PG. Nonetheless, it is suggested that non-specific behavioral activation could be sufficient, methodological problems are found in CBT samples, or it is questioned whether the exposure component is necessary or not. Objective: To analyze whether CBT is really effective to improve PG among the adult population. Methods: A systematic review was conducted through Medline, PsycINFO, PubMed, Scopus and Web of Science databases from June 2022 to February 2023, as well as by means of personal communication. 9 studies that met the established inclusion and exclusion criteria were identified. Results: Baseline post-treatment and follow-up assessments are compared. All studies reflect superior improvements in the CBT condition compared to other therapeutic modalities or compared to CBT without exposure, excluding one study that establishes equal efficacy with Eye Movement Desensitization and Reprocessing (EMDR). The risk of bias was analyzed according to Cochrane criteria, presenting an adequate methodological quality; the level of scientific evidence, 1+; and the grade of recommendation, A. Conclusions: The results support the efficacy of CBT for the treatment of PG in the adult population. Nevertheless, it is essential to conduct new studies that strengthen this evidence. Until then, it is recommended its application among those suffering from PG (AU)

Technology-Assisted mHealth Caregiver Support to Manage Cancer Patient Symptoms: A Randomized Controlled Trial.

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.

Moderating Effect of Work on Burden and Hospice Family Caregiver Well-Being.

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (ß = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (ß = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (ß = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (ß = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (ß = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (ß = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.

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.

'I am still valuable' - A qualitative study of incurable cancer patients coping in hospice care.

BACKGROUND: Knowledge of the experiences of coping in patients with incurable cancer is essential for high-quality palliative and end-of-life care. AIM AND OBJECTIVE: To describe the coping experiences of patients with incurable cancer in hospice care to better develop patient-centred care. METHODS: The data for this qualitative study were collected through semi structured interviews, with patients with incurable cancer in hospice care (N = 20) and analysed with inductive content analysis. Ethical and organisational approvals were obtained, and the participants received both verbal and written information before consenting to participate. RESULTS: The patients' coping was enhanced with their involvement in treatment-related decisions. Valuing day-to-day living and coping with emotional stressors helped them accept their own life situations. Accepting their increasing fragility was enhanced by their self-reappraisal. The patients found security in the possibility of receiving support when they needed it. Although the ordinariness of dying in hospice care settings was sometimes too much to bear, they understood dying to be a part of the natural cycle of life. They questioned the responsiveness of healthcare services because they felt that they were not always heard. STUDY LIMITATIONS: Because this study was limited to a specific population of cancer patients in hospice care, the results might not be generalised to other patient groups with chronic diseases or other palliative care settings. CONCLUSIONS: The experiences of patients in hospice care of coping with incurable cancer were reminiscent of the common coping process descriptions. Surprisingly, even though participants voiced that they had accepted their situation, dying itself was something they did not find crucial to discuss. The crucial aspects - without being in denial - dealt more with focusing on positive thinking and facing life.

Association of Hospice Profit Status With Family Caregivers' Reported Care Experiences.

Importance: Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences. Objective: To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status. Design, Setting, and Participants: Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022. Main Outcomes and Measures: Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics. Results: There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average. Conclusions and Relevance: In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Metaphors in End-of-Life Dreams in Patients Receiving Palliative Care: A Secondary Qualitative Study.

Background: Metaphors are used by patients and professionals in the discourse of disease and can facilitate conversations about difficult topics. There is little information about metaphors present in patients' end-of-life dreams. Objective: Identify and interpret metaphors in end-of-life dreams, directly reported by patients in palliative care. Design: A qualitative study with a secondary analysis of transcribed face-to-face interviews with patients. Setting/Participants: The study includes 25 patients with end-stage disease receiving advanced end-of-life palliative care. In total, 41 interviews were performed. Results: Metaphors applicable to 3 themes were found: the journey toward death, the inevitability of death and death itself. The underlying meaning of the metaphors is often related to topics and emotions commonly relevant in dialogue with patients near death. Patients, however, often seemed unaware of the meaning of their dream metaphors. Conclusion: Metaphors pertaining to death are present in end-of-life dreams in patients with end-stage disease. We hypothesize that encouraging patients to talk about their dreams can expose metaphors that could facilitate end-of-life discussions.