Impact of family involvement and an advance directive to not hospitalize on hospital transfers of residents in long-term care facilities.

OBJECTIVE: With the rapidly aging population, the number of residents transferred to hospitals from long-term care facilities (LTCFs) is increasing globally. The objective of this study was to investigate the association between family involvement and an advance directive (AD) for not hospitalizing and hospital transfers among LTCF residents with dementia. METHOD: Using the InterRAI assessment database from September 2014 to June 2019, we included 874 residents from 16 LTCFs in Japan. RESULTS: Of the 874 participants, 19.0% had an AD for not hospitalizing, and 20.5% were transferred to hospitals. An AD for not hospitalizing decreased the likelihood of hospital transfers (p = 0.005). Multilevel logistic regression analysis showed that family involvement was not associated with hospital transfers (odds ratio [OR]: 1.18; 95% confidence interval [CI]: 0.77-1.80), while an AD for not hospitalizing was significantly associated with decreased hospital transfers (OR: 0.50; 95% CI: 0.28-0.89) among the LTCF residents. CONCLUSIONS: Although ADs are not legally defined in Japan, we found that an AD for not hospitalizing decreased hospital transfers. Given that many older people tend to hesitate to express their wishes in clinical decision-making situations in Japan, regular discussions are necessary to help them express their care preferences while also documenting the discussions to ensure the residents receive high-quality care.

Ambulance use and emergency department visits among people with dementia: A cross-sectional survey.

This study aimed to explore factors associated with ambulance use and emergency department (ED) visits among people with dementia in the month before death. A web-based survey of bereaved family caregivers of people with dementia was conducted in March 2020. Multivariate logistic regression analyses were conducted with ambulance use and ED visits in the month before death as dependent variables. Age and gender of people with dementia and their family caregivers, home care use, decision-makers, comorbidities, degree of independence in daily living, and caregivers' preparedness for death were independent variables. Data were collected from 817 caregivers of people with dementia who had died at hospitals (52.4%), long-term care facilities (25.0%), or own homes (22.4%). Caregivers' lack of preparedness for death was significantly associated with ambulance use in the month before death. Comorbidites and males with dementia were significantly associated with ED visits in the month before death. Better death preparedness of family caregivers may reduce ambulance use for symptoms that can be more effectively addressed by palliative care than acute care for people with dementia.

Quality of End-of-Life in Cancer Patients With Dementia: Using A Nationwide Inpatient Database.

CONTEXT: The growing number of older people significantly affects end-of-life care. However, few studies have assessed the quality of end-of-life care among cancer patients with dementia. OBJECTIVES: To assess the quality of end-of-life care among non-small cell lung cancer patients with or without dementia using a nationwide inpatient database from Japan. METHODS: This was a retrospective observational study that used a nationwide inpatient database of 366 acute care hospitals from April 2014 to November 2018. Poisson regression models were used where the quality indicator was the dependent variable, dementia status was the independent variable, and the age group and Charlson comorbidity index were covariates. Incidence proportion ratios (IPRs) and confidence intervals (CIs) were obtained from the model. RESULTS: The study population included 16,758 patients, of whom 4507 (26.9%) had dementia. The incidence proportion of opioid use (61.8% vs. 70.8%; IPR: 0.87, 95% CI: 0.83-0.91), palliative care consultation (2.7% vs. 3.8%; IPR: 0.71, 95% CI: 0.58-0.88), mechanical ventilation (4.0% vs. 5.4%; IPR: 0.74, 95% CI: 0.62-0.87), and cardiopulmonary resuscitation (2.2% vs. 2.8%; IPR: 0.79, 95% CI: 0.63-0.99) was significantly lower in patients with dementia than in those without dementia. CONCLUSION: Patients with dementia are less likely to receive end-of-life care. This study demonstrates the importance of providing high-quality end-of-life care regardless the cognitive status of patients with cancer.

Salutogenesis and COVID-19 pandemic impacting nursing education across SEANERN affiliated universities: A multi-national study.

BACKGROUND: The COVID-19 pandemic has disrupted the lives of many. Particularly, nursing students experience greater stress as their normal curriculum is interrupted and some of them face the risk of being infected as frontline workers. Nursing faculty members may face similar struggles, in addition to developing teaching materials for online learning. Thus, it is important to examine the faculty members' and students' views on their ability to adapt during the pandemic to obtain a holistic view of how learning and training has been affected. DESIGN: The descriptive cross-sectional quantitative design was used. SETTINGS: Data were collected from Southeast and East Asian Nursing Education and Research Network (SEANERN) affiliated nursing institutions from January 2021 to August 2021. PARTICIPANTS: A total of 1897 nursing students and 395 faculty members from SEANERN-affiliated nursing institutions in Cambodia, Hong Kong, Indonesia, Japan, Laos, Malaysia, Philippines, Singapore, Thailand and Vietnam were recruited for this study. METHODS: Quantitative surveys were used to explore the satisfaction levels in education modalities, confidence levels, psychosocial well-being, sense of coherence and stress levels of nursing students and faculty members during the COVID-19 pandemic. RESULTS: Participants were mostly satisfied with the new education modalities, although most students felt that their education was compromised. Both groups showed positive levels of psychosocial well-being, despite scoring low to medium on the sense of coherence scale and experiencing great stress. The participants' sense of coherence was positively correlated with their psychosocial well-being and negatively correlated with stress levels. CONCLUSIONS: While the COVID-19 pandemic had negatively impacted the lives of nursing students and faculty members, most of them had a healthy level of psychosocial well-being. Having a strong sense of coherence was associated with better psychosocial health and lower stress levels. As such, it may be helpful to develop interventions aimed at improving the sense of coherence of nursing students and staff to help them manage stressors better.

Impact of dementia on quality of death among cancer patients: An observational study of home palliative care users.

AIM: The number of cancer patients with dementia has increased markedly in accordance with aging societies. Cancer patients might receive palliative and end-of-life care to maintain their quality of life; however, the impact of dementia on the quality of death is unexamined in this population. Consequently, we explored the impact of dementia on the quality of death among cancer patients. METHODS: Home palliative care staff members completed questionnaires regarding cancer patients' (n = 508) cognitive status, cancer-related symptoms and quality of death using the good death inventory. Hierarchical regression analyses were carried out for the entire sample and for stratified groups based on the presence of dementia. RESULTS: Of the 508 patients, 156 (30.7%) had dementia. Hierarchical regression analyses revealed that greater quality of death was associated with not having dementia (P < 0.001). Stratified analyses showed that dying at home was related to greater quality of death both in patients with and without dementia. The presence of a primary family caregiver was associated with greater quality of death only in patients with dementia (P < 0.001). CONCLUSIONS: Cancer patients with dementia were less likely to achieve a good death than those without. Our results suggest the importance of enhancing end-of-life care discussions with patients and their families, along with developing specific support strategies to enhance the decision-making of cancer patients with dementia and their family members. Geriatr Gerontol Int 2020; 20: 354-359.

Posttraumatic growth in bereaved family members of patients with cancer: a qualitative analysis.

BACKGROUND: The death of a loved one has great impact on family members even when the death was expected. While negative changes are reported, some individuals also report personal growth, known as posttraumatic growth (PTG). Many studies on PTG have been performed using quantitative methods and suggest that PTG may differ according to the traumatic event and cultural background. PURPOSE: This study aimed to explore how Japanese bereaved family members of patients with cancer express their experience of PTG after the patient's death by analyzing open-ended answers provided in a cross-sectional survey. METHODS: Qualitative data were collected through a survey, and thematic analysis was used to analyze the data. The present study was part of a larger cross-sectional survey of bereaved families of patients with cancer. Data analyzed in the current study were obtained from 162 bereaved family members of patients with cancer. RESULTS: We identified 18 sub-themes within five predefined major domains of PTG. Moreover, we also identified two additional themes: changed view of life and death, and awareness of health management. CONCLUSIONS: The experience of PTG of bereaved family members varied considerably. Future research on PTG experiences among groups from diverse cultural backgrounds would be beneficial for understanding the concept and its clinical implications.

Dementia Care Competence Among Care Professionals and Reduced Challenging Behavior of Home-Dwelling Persons with Dementia: A Pre- and Post-Intervention Data Analysis.

BACKGROUND: We developed a psychosocial dementia care program to help care managers and professional caregivers manage challenging behavior in home-dwelling persons with dementia in Japan. The program consists of a web-based tool for ongoing monitoring and assessment for challenging behavior, and multi-agency discussion meetings. Results of a cluster-randomized controlled trial indicate a reduction in challenging behavior through this program. OBJECTIVES: The present study aimed to identify a key component of the developed program that is associated with a reduction in challenging behavior. METHODS: We used consecutive data of the intervention and examined the association between challenging behavior in home-dwelling persons with dementia, professionals' competence, and the frequency of revision of action plans. Challenging behavior was assessed using the total score of the Neuropsychiatric Inventory. A baseline and follow-up questionnaire was completed by care professionals using a Japanese version of the Sense of Competence in Dementia Care Staff scale. RESULTS: A total of 86 care professionals completed a 6-month intervention with 219 persons with dementia. The 86 care professionals significantly improved in their dementia care competence. Challenging behavior was significantly reduced among the 219 persons with dementia at follow-up regardless of the level of professionals' competence or the frequency of revision of action plans. Less pain was significantly related to the lower levels of challenging behavior. CONCLUSION: The ongoing multi-agency discussion meetings, with a focus on challenging behavior, may have been the key component in the psychosocial dementia care program. Pain management should be emphasized in action plans for challenging behavior.

Psychosocial behaviour management programme for home-dwelling people with dementia: A cluster-randomized controlled trial.

Little is known about the effectiveness of a psychosocial behaviour management programme on home-dwelling people with dementia. We developed a Behaviour Analytics & Support Enhancement (BASE) programme for care managers and professional caregivers of home care services in Japan. We investigated the effects of BASE on challenging behaviour of home-dwelling people with dementia. METHODS: A cluster-randomized controlled trial was conducted with home care providers from 3 different districts in Tokyo. Each provider recruited persons with dementia aged 65 years or older to receive home care in the BASE programme in August 2016. An online monitoring and assessment system was introduced to the intervention group for repeated measures of challenging behaviour with a total score of the Neuropsychiatric Inventory. Care professionals in both the intervention and control groups evaluated challenging behaviour of persons with dementia at baseline (September 2016) and follow-up (February 2017). RESULTS: A majority of persons with dementia had Alzheimer disease (59.3%). One-hundred and forty-one persons with dementia were included in the intervention group and 142 in the control group. Multilevel modelling revealed a significant reduction in challenging behaviour in the intervention group after 6 months (mean score, 18.3 to 11.2) compared with that of the control group (11.6 to 10.8; P < .05). CONCLUSION: The implementation of the BASE programme resulted in a reduction of challenging behaviour of home-dwelling people with dementia. Future research should examine the long-term effects of behaviour management programmes on behaviour, nursing home placement, and hospital admission of home-dwelling people with dementia.

Dementia behaviour management programme at home: impact of a palliative care approach on care managers and professional caregivers of home care services.

OBJECTIVES: Care managers and professional caregivers of home care services are sometimes unaware of the psychosocial approaches to the challenging behaviour of dementia. Therefore, we developed a Behaviour Analytics & Support Enhancement (BASE) programme. We investigated the effects of the programme on the attitudes towards dementia care among professionals. METHOD: Forty-six participants in Japan received training in August 2016. The ongoing monitoring and assessment system was introduced to the participants for repeated measures of challenging behaviour. A 1-day follow-up meeting for debriefing was also performed after two months. A baseline and follow-up questionnaire survey was administered to the participating caregivers using a Japanese version of the Approaches to Dementia Questionnaire (ADQ) and the Zarit Burden Interview (ZBI). RESULTS: A significant improvement was observed in the total ADQ score among the participating caregivers from baseline to follow-up assessment. There was no significant difference between the baseline and follow-up assessment in the ZBI scores. In the follow-up meeting, several participants reported challenges and suggested solutions in facilitating a discussion on an action plan among professionals from various organizations. CONCLUSION: The implementation of the programme resulted in enhanced attitudes towards dementia care among the participants without an increased burden of care. Future studies should examine the programme's effectiveness on the challenging behaviour of persons with dementia.

Examining Posttraumatic Growth Among Bereaved Family Members of Patients With Cancer Who Received Palliative Care at Home.

OBJECTIVE: The present study examines the factor structure of the Japanese version of the Posttraumatic Growth Inventory (PTGI-J) among bereaved family members who lost loved ones to cancer after home-based palliative care in Japan. It evaluates the relationships between total score, each PTGI-J domain, and participants' having a religious belief, gender, age, relationship to the patient, and time since patient death. PROCEDURE: Bereaved family members (n = 849) completed the PTGI-J and a demographic questionnaire. The factor structure was tested using confirmatory factor analysis (CFA), and univariate analysis was used to test hypotheses. RESULTS: Confirmatory factor analysis showed that the current sample moderately fitted to both 4-factor and 5-factor models. Univariate analysis revealed that having a religious belief and gender were associated with all domains and total PTGI-J score. Age, time since patient death, and relationship to the patient showed significant differences with the domains of PTGI-J. CONCLUSION: Clinicians may be able to adjust the support they provide based on patients' personal characteristics. Future research should look at the mechanisms of PTG by examining the role of rumination, social support, and emotional distress among bereaved family members of patients with cancer.

End-of-life experiences of family caregivers of deceased patients with cancer: A nation-wide survey.

OBJECTIVES: The purpose of this study was (a) to describe the end-of-life experience of family caregivers of cancer patients, (b) to describe talking about death and dying of the patient to minor children, and (c) to examine the association of family caregivers' experiences by their characteristics and talking about death and dying of the patient. METHODS: A cross-sectional nationwide survey of bereaved family caregivers was conducted. In total, 968 questionnaires were sent to bereaved family caregivers, and 711 were completed and returned. Fifty-three responses indicating patients had minor children were analyzed. Univariate analysis and principal component analysis were performed. RESULTS: Family caregivers' experiences were divided into 3 domains by principal component analysis: protect children from the patient's imminent death, little regard for the children, and worry and concern about the children's emotional reaction. Family caregivers' common experiences were as follows: "I wanted to know how the children felt," "I wanted to avoid making the children confused," and "I did not have much time to talk with and/or play with the children." About 30% of family caregivers reported that they "did not talk" about death and dying of patients to minor children. Spouses of patients and family caregivers who did not talk about death tended to experience distress and worry. CONCLUSIONS: Most family caregivers experienced worry and fear regarding minor children's emotional reaction; therefore, clinicians need to explain children's emotional and psychological reactions to family caregivers when a patient is at the end-of-life.

Quality of death, rumination, and posttraumatic growth among bereaved family members of cancer patients in home palliative care.

OBJECTIVE: The current study was designed to test the hypothesis that quality of death (QOD) and intrusive and deliberate rumination are associated with posttraumatic growth (PTG) among bereaved family members of cancer patients in home palliative care. METHODS: Data were collected from 805 bereaved family members of cancer patients who died at home in Japan. We used a cross-sectional design and participants completed Good Death Inventory, Event-Related Rumination Inventory, and PTG Inventory. Structural equation modeling was used to test the hypothesized relationships. RESULTS: A direct pathway from QOD to PTG was significant. We also found significant indirect pathways between QOD and PTG via deliberate rumination soon after the death and recent deliberate rumination. CONCLUSIONS: Clinicians should provide high-quality end-of-life care with the goals of achieving a good death for terminally ill cancer patients and supporting the experience of PTG in bereaved family members after their loss.

Posttraumatic Growth Among Japanese Parentally Bereaved Adolescents: A Web-Based Survey.

OBJECTIVE: The aim of this study was to explore the factors associated with posttraumatic growth (PTG) among adolescents bereaved owing to parental cancer in Japan. METHODS: An anonymous cross-sectional Web-based survey was conducted, enrolling adolescents bereaved because of parental cancer in the previous 5 years. Posttraumatic growth, number of social support members, support from medical staff, and behaviors after bereavement were measured. Multiple linear regression was performed to explore the association between total PTG score and possible related factors. RESULTS: We assessed 57 participants in this study. Mean age was 19.3 (standard deviation [SD] = 2.0) years, and most participants were female (75.4%). Mean total score of the Japanese version of the PTG inventory was 43.0 (SD = 25.6). Participants' mean number of social support members was 2.1 (SD = 1.3), and these support members were the surviving parent (66.7%), friends (38.6%), and siblings (36.8%). The multiple linear regression model explained 45% of the variance in PTG. In this model, the following 3 behaviors after bereavement were associated with PTG: "putting palms together in front of a parent's picture or an altar" (ß = .36, P = .006), "visiting a parent's grave" (ß = .29, P = .03), and "having fun with friends" (ß = .25, P = .04). CONCLUSION: Parentally bereaved adolescents in Japan experience PTG. Specific behaviors after bereavements might be recommended for PTG among Japanese adolescents bereaved because of parental cancer.

Differences in posttraumatic growth and grief reactions among adolescents by relationship with the deceased.

AIM: The aim of this study was to examine three hypotheses: (1) adolescents who had experienced the death of a parent would report higher grief reactions than those who had lost a grandparent; (2) adolescents who experienced the death of a parent would report higher posttraumatic growth than those who had lost a grandparent; and (3) posttraumatic growth and grief reactions are positively associated. BACKGROUND: To date, no study has investigated adolescents' posttraumatic growth by their relationship with the deceased. DESIGN: Cross-sectional web-based survey. METHODS: Participants were adolescents who had experienced the death of a parent or grandparent in the last 5 years. Participants completed the Japanese version of the Posttraumatic Growth Inventory and grief reaction items. We conducted a web-based survey during January 2014. We used Pearson product-moment correlations to examine the association between each Posttraumatic Growth Inventory domain and each grief reaction item. Differences in the relationship with the deceased for each Posttraumatic Growth Inventory and grief reaction item were compared with an independent-sample t-test. RESULTS: Participants (n = 124) reported grief reactions including 'I began to get frustrated at the little things' (43·5%), 'It was difficult to go to school' (41·1%) and 'I was not able to sleep at night' (33·9%). The independent t-test indicated that parentally bereaved adolescents reported higher grief reactions than those who had lost a grandparent. There were no differences in post-traumatic growth by relationship with the deceased. [corrected]. Pearson's bivariate analysis showed an association between grief reactions and posttraumatic growth. CONCLUSION: Parentally bereaved adolescents reported higher grief reactions. [corrected]. Nurses should ensure bereaved adolescents receive appropriate support.

Quality of care for people with dementia and professional caregivers' perspectives regarding palliative care in Japanese community care settings.

OBJECTIVE: Palliative care for dementia includes psychosocial interventions as first-line treatment for challenging behaviour. However, the national dementia plan in Japan contradicts recommendations for palliative care for dementia. This study aimed to examine the association between care quality for patients with dementia and professional caregivers' perspectives regarding palliative care for dementia in Japanese community care settings. METHODS: In total, 2116 professional caregivers from 329 agencies (217 in-home long-term care support providers; 29 small-scale, multiple home-care providers; and 83 group homes) in Tokyo prefecture, Japan, completed cross-sectional, paper-based questionnaires about 3603 people diagnosed with dementia, in May 2016. Quality of care measures included physical restraint and antipsychotic medication use and quality of life. Patients' quality of life was assessed via the Japanese version of the Alzheimer's Disease Health-related Quality of Life scale. The Japanese version of the Questionnaire on Palliative Care for Advanced Dementia was used to assess professional caregivers' knowledge and attitudes regarding palliative care for dementia. RESULTS: Professional caregivers' knowledge and attitudes regarding palliative care for dementia were positively associated with quality of life in patients with dementia. Physical restraint and antipsychotic medication were used regardless of professional caregivers' knowledge and attitudes. CONCLUSIONS: Professional caregivers' perspectives regarding palliative care for dementia could have exerted a positive effect on quality of life in patients with dementia. A national strategy for advocacy and the protection of adults is required to integrate several laws and guidelines and prevent the use of antipsychotics as a form of chemical restraint. Copyright © 2016 John Wiley & Sons, Ltd.

Regional medical professionals' confidence in providing palliative care, associated difficulties and availability of specialized palliative care services in Japan.

BACKGROUND: Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. OBJECTIVE: This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. RESULTS: Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. CONCLUSIONS: Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.

[Support of the family with schizophrenia in case of home hospice care].

There are various types of families of terminally-ill cancer patients, and care for the family should therefore be individualized. In cases where the primary caregivers have schizophrenia, caring for the patients at home might cause a serious burden to a family. From this aspect, two patients who were cared for by family with schizophrenia were reviewed. Four important factors were obtained. First, assessment of psychiatric conditions of the family collaborating with the psychiatrist or public health nurse; second, confirmation of the patients'/family's wills concerning living through death at home; third, death education given to a family; and fourth, efficient collaboration with social services by an other organization. It was considered that these factors would constitute a model for providing home hospice care to a family with schizophrenia.