An exploration of the emotional impact of working in an adult hospice service for Irish healthcare professionals.

PURPOSE: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland. DESIGN/METHODOLOGY/APPROACH: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews. FINDINGS: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing. CONCLUSION: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.

Nephrologists' perspectives and experiences with hospice among older adults with end-stage kidney disease.

BACKGROUND: Hospice care leads to improved patient and family outcomes. Hospice use among older adults with end-stage kidney disease (ESKD) is markedly lower than among older adults with other serious illnesses, and the majority of those with ESKD who use hospice enroll in the last days of life. Here, our aim was to explore barriers to timely receipt of high-quality hospice care for older adults with ESKD. METHODS: Utilizing a qualitative study design, we conducted a secondary analysis focused on hospice, a theme that we identified in our larger overarching study that involved semi-structured interviews with 20 nephrologists in the United States focused on treatment decision-making in older adults with advanced chronic kidney disease. We analyzed the interview transcripts using emergent thematic analysis to develop an understanding of barriers to high-quality hospice. RESULTS: With a couple notable exceptions, nephrologists voiced general support for the concept of hospice, but few recalled patients of theirs who had received hospice. Nephrologists' interviews revealed two interrelated contributors to the lack of timely access to high-quality hospice care for seriously ill older adults with ESKD: (1) nephrologists view dialysis and hospice as mutually exclusive models of care; (2) nephrologists feel unsure who should manage hospice care for patients with ESKD. The first contributor was rooted in nephrologists' narrow vision of when to consider hospice (informed, in part, by policy barriers) and, in a couple of cases, strong discomfort with hospice. The second stemmed from nephrologists' belief that neither they nor hospice are adequately prepared to provide hospice care for ESKD. CONCLUSIONS: Our findings suggest that, in addition to Medicare policy change, nephrologists need to receive more training in primary palliative care skills including in indications for hospice, initiating conversations about hospice with patients, and collaborating with hospice clinicians to care for these vulnerable patients.

Hospice Knowledge, Attitudes, and Preference among Older Chinese Immigrants in the United States.

Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.

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.

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.

End-of-life conversations about death and dying from volunteer perspectives: A qualitative study.

OBJECTIVES: Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life? METHODS: We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada. RESULTS: We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die. SIGNIFICANCE OF RESULTS: The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers.

"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.

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.

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.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Exploring the Beliefs, Values, and Understanding of Quality End-of-Life Care in the Latino Community: A Spanish-Language Qualitative Study.

Context: Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. Methods: This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Main Findings: Six major themes emerged: (1) concept of "a good death"-spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of "a good death" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this "good death." Principal Conclusions: Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style.

Overall US Hospice Quality According to Decedent Caregivers-Natural Language Processing and Sentiment Analysis of 3389 Online Caregiver Reviews.

Objectives: With an untapped quality resource in online hospice reviews, study aims were exploring hospice caregiver experiences and assessing their expectations of the hospice Medicare benefit. Methods: Topical and sentiment analysis was conducted using natural language processing (NLP) of Google and Yelp caregiver reviews (n = 3393) between 2013-2023 using Google NLP. Stratified sampling weighted by hospice size to approximate the daily census of US hospice enrollees. Results: Overall caregiver sentiment of hospice care was neutral (S = .14). Therapeutic, achievable expectations and misperceptions, unachievable expectations were, respectively, the most and least prevalent domains. Four topics with the highest prevalence, all had moderately positive sentiments: caring staff, staff professionalism and knowledge; emotional, spiritual, bereavement support; and responsive, timely or helpful. Lowest sentiments scores were lack of staffing; promises made, but not kept, pain, symptoms and medications; sped-up death, hasted, or sedated; and money, staff motivations. Significance of Results: Caregivers overall rating of hospice was neutral, largely due to moderate sentiment on achievable expectations in two-thirds of reviews mixed with unachievable expectations in one-sixth of reviews. Hospice caregivers were most likely to recommend hospices with caring staff, providing quality care, responsive to requests, and offering family support. Lack of staff, inadequate pain-symptom management were the two biggest barriers to hospice quality. All eight CAHPS measures were found in the discovered review topics. Close-ended CAHPS scores and open-ended online reviews have complementary insights. Future research should explore associations between CAHPS and review insights.

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.