Factors associated with the preparedness for bereavement in families of patients with cancer: A secondary analysis of a nationwide bereaved family survey.

OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.

Reliability and validity of the Japanese version of the Parenting Concerns Questionnaire.

OBJECTIVE: Cancer patients with children are increasing; however, few studies have quantitatively assessed the parenting concerns of cancer patients with children. The Parenting Concerns Questionnaire was developed in the USA in 2012 and is the only instrument to measure the parenting concerns of cancer patients with children. This study aimed to develop a Japanese version of the Parenting Concerns Questionnaire and evaluate its reliability and validity. METHODS: An Internet survey was conducted among cancer patients registered with 'Cancer Parents', an Internet community site for cancer patients, who have children aged <18 years, and 174 responses were recorded. Two weeks later, a retest was conducted, and responses were obtained from 87 patients. RESULTS: Based on confirmatory factor analysis of the factor structure proposed by the authors of the original version, factors 'I. The impact of my illness on the child's daily life (five items)', 'II. The impact of my illness on the child's feelings (five items)' and 'III. Concerns about my parenting partner (five items)' were consistent with the original version. Cronbach's alpha coefficients for all items and by factors were 0.86, 0.79, 0.86 and 0.86. The Parenting Concerns Questionnaire total scores correlated with Hospital Anxiety and Depression Scale (r = 0.52), the Functional Assessment of Cancer Therapy General (r = -0.56), Family Assessment Device-General Functioning (r = 0.51) and Multidimensional Scale of Perceived Social Support (r = -0.47). The intraclass correlation coefficients for all items and by factors were 0.81, 0.71, 0.77 and 0.85. CONCLUSIONS: The Japanese version of the Parenting Concerns Questionnaire has satisfactory reliability and validity.

Bereaved family members' perspectives on quality of death in deceased acute cardiovascular disease patients compared with cancer patients - a comparison of the J-HOPE3 study and the quality of palliative care in heart disease (Q-PACH) study.

BACKGROUND: Outcome measures during acute cardiovascular disease (CVD) phases, such as quality of death, have not been thoroughly evaluated. This is the first study that compared the family members' perceptions of quality of death in deceased CVD patients and in deceased cancer patients using a bereaved family survey. METHODS: Retrospectively sent questionnaire to consecutive family members of deceased patients with CVD from ten tertiary hospitals from October 2017 to August 2018. We used the short version of the Good Death Inventory (GDI) and assessed overall care satisfaction. Referencing the GDI, the quality of death was compared between CVD patients admitted to a non-palliative care unit (non-PCU) and cancer patients in palliative care units (PCU) and non-PCUs in the Japan Hospice and Palliative Care Evaluation Study (J-HOPE Study). Additionally, in the adjusted analysis, multivariable linear regression was performed for total GDI score adjusted by the patient and participant characteristics to estimate the difference between CVD and other patients. RESULTS: Of the 243 bereaved family responses in agreement (response rate: 58.7%) for CVD patients, deceased patients comprised 133 (54.7%) men who were 80.2 ± 12.2 years old on admission. The GDI score among CVD patients (75.0 ± 15.7) was lower (worse) than that of cancer patients in the PCUs (80.2 ± 14.3), but higher than in non-PCUs (74.4 ± 15.2). After adjustment, the total GDI score for CVD patients was 7.10 points lower [95% CI: 5.22-8.97] than for cancer patients in PCUs and showed no significant differences compared with those in non-PCUs (estimates, 1.62; 95% CI [-0.46 to 5.22]). CONCLUSIONS: The quality of death perceived by bereaved family members among deceased acute CVD patients did not differ significantly from that of deceased cancer patients in general wards, however, was significantly lower than that of deceased cancer patients admitted in PCUs.

Comparison of the quality of death between primary malignant brain tumor patients and other cancer patients: results from a nationwide bereavement survey in Japan.

PURPOSE: No studies have investigated the association between malignant brain tumor and the quality of dying, which is an important outcome in end-of-life care. This study aimed to clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases. METHODS: This was a secondary analysis of data collected by two nationwide, multicenter, bereavement surveys of palliative care units in Japan. This analysis included 14,171 bereaved family members (160 patients with malignant brain tumors). The quality of dying was examined using the good death inventory (GDI), a validated tool widely used in palliative care settings. RESULTS: Patients with malignant brain tumors were younger (p < 0.0001) and had a longer palliative care unit stay during their end-of-life (p < 0.0001) than others. The total GDI score was significantly lower in patients with malignant brain tumors than others (p < 0.0001). Five GDI items were significantly lower in the malignant brain tumor group than other cancer group: "Being able to stay in one's favorite place" (p = 0.03); "Trusting the physician" (p = 0.003); "Not being a burden to others" (p = 0.01); "Being independent in daily activities" (p = 0.01); and "Feeling that one's life is worth living" (p = 0.001). CONCLUSION: This study showed that the quality of dying of patients with malignant brain tumors was lower compared to other cancers, suggesting the need to review care for patients with malignant brain tumors based on their characteristics.

Changes in depressive symptoms among family caregivers of patients with cancer after bereavement and their association with resilience: A prospective cohort study.

OBJECTIVES: To elucidate changes in depressive symptoms after bereavement and the impact of pre-loss resilience on such changes and on the extent of complicated grief and posttraumatic growth. METHODS: Prospective cohort surveys were provided to family caregivers of patients with cancer in four palliative care units (PCUs) before and after bereavement. Pre-loss Connor-Davidson Resilience Scale scores, pre- and post-loss Patient Health Questionnaire-9 scores, post-loss Brief Grief Questionnaire scores, and the expanded Posttraumatic Growth Inventory scores were determined. RESULTS: Out of 186 bereaved family caregivers, 71 (38.2%) responses were analyzed, among which 47% pre-loss and 15% post-loss responses suggested to be a high risk for major depressive disorder (MDD). Approximately 90% of family caregivers at a high risk for post-loss MDD were already at a high risk for pre-loss MDD. Even after adjustment of the background variables as covariates, the interaction effect between family caregivers' pre-loss depressive symptoms and resilience on post-loss depressive symptoms was observed (F = 7.29; p < 0.01). Moreover, pre-loss resilience was not associated with other bereavement outcome measures. CONCLUSIONS: Among family caregivers of patients with cancer in PCUs, 47% and 15% had high risk for MDD before and after bereavement, respectively. Moreover, pre-loss resilience mitigated post-loss depressive symptoms among family caregivers who had high risk for MDD before bereavement. However, considering the study's small sample size, further research is needed.

Association between experiences of advanced cancer patients at the end of life and depression in their bereaved caregivers.

OBJECTIVE: Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited. METHODS: A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire-9 (PHQ-9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. RESULTS: Of 1324 deceased patient-bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ-9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0-16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2-3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2-10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6-7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. CONCLUSIONS: Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium-related agitation and to provide educational interventions for caregivers may be needed.

Influence of financial burden on withdrawal or change of cancer treatment in Japan: results of a bereavement survey.

PURPOSE: This study aimed to examine the effect of financial burden of cancer treatment from diagnosis to end-of-life on treatment withdrawal or change in Japan. METHODS: This study was part of a nationwide survey of bereaved family members of cancer patients in Japan (J-HOPE2016 study). Questions regarding withdrawal or change of cancer treatment (stratified according to whether the treatment was recommended by physicians or based on the patients' request), financial difficulties in coping with cancer treatment expenses, and the participants' socioeconomic background were asked. Descriptive analyses were performed, and logistic regression was used to examine the factors related to withdrawal or change of cancer treatment. RESULTS: In total, 510 (60%) questionnaires were returned. Approximately 7.5% of participants reported withdrawal or change of cancer treatment for financial reasons. Financial difficulties in coping with cancer treatment expenses such as using up all or a portion of one's savings (OR = 2.14, 95% CI = 1.14-4.04, p = 0.018/ OR = 3.45, 95% CI = 1.52-7.81, p = 0.003) and subjective financial burden (OR = 2.54, 95% CI = 1.25-5.14, p = 0.010/OR = 3.89, 95% CI = 1.68-9.00, p = 0.002) were significantly related to withdrawal or change of cancer treatment (recommended by physicians/based on patient request). CONCLUSION: Fewer participants reported withdrawal or change of cancer treatment than in previous studies, which might reflect the characteristics of the Japanese healthcare system. However, there are patients in Japan who withdraw or change cancer treatment for financial reasons. Medical staff should consider financial toxicity as a serious side effect and assist patients in their decision-making regarding treatment while taking into account their socioeconomic backgrounds.

Machine learning models to detect social distress, spiritual pain, and severe physical psychological symptoms in terminally ill patients with cancer from unstructured text data in electronic medical records.

BACKGROUND: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records. AIM: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records. DESIGN: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC). SETTING/PARTICIPANTS: A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409). RESULTS: Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8). CONCLUSION: The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records.

Effects of financial status on major depressive disorder and complicated grief among bereaved family members of patients with cancer.

OBJECTIVE: To examine current financial status, changes before and after bereavement, and their effects on possible major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer. METHODS: We conducted a nationwide cross-sectional questionnaire survey on 787 bereaved family members of patients with cancer in 71 palliative care institutions in Japan from May to July 2016. The survey assessed perceived level of concern regarding current financial status and whether it changed after bereavement. We also collected information on demographic factors and assessed the possible MDD and CG using the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. We then conducted bivariate analysis to examine the relationship between these factors and financial status. RESULTS: A total of 491 (62%) questionnaires were returned. The majority of the participants (n = 382, 78%) reported having no or mild concerns about their livelihood, whereas 19% (n = 95) had moderate to severe concerns. Regarding the change in financial status after bereavement, 7% (n = 35) reported improvement, 28% (n = 131) reported worsening, and 65% (n = 308) reported no change. The prevalences of possible MDD and CG were 22% (n = 108) and 9% (n = 41), respectively, and were significantly lower among participants with less concern regarding their livelihood and whose financial status had not changed after bereavement (both p < 0.05). CONCLUSIONS: About one-fifth of the bereaved family members reported financial difficulties to some extent; these were significantly associated with MDD and CG. These findings provide evidence of the need for psychosocial support including financial consultation for bereaved family members.

Predicting models of depression or complicated grief among bereaved family members of patients with cancer.

OBJECTIVE: To derive and validate a risk scoring system for predicting major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer that is feasible for clinical use. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan. From a total of 17,312 bereaved family members of patients with cancer, 8618 and 8619 were randomly assigned to a derivation and a validation group. The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess MDD (PHQ-9 score ≥ 10) and CG (BGQ score ≥ 8), respectively. We compared five models with potential predictive variables that could be easily obtained in daily practice and were included in the bereavement survey (i.e., sociodemographic data). RESULTS: The model which included variables such as the families' physical/mental health status and preparedness toward bereavement, in addition to their sociodemographic data, was considered modest for predicting the risk of both MDD and CG. The areas around the curve for MDD and CG were 0.74 (95% CI: 0.73-0.76) and 0.74 (95% CI: 0.72-0.75) and 0.78 (95% CI: 0.76-0.79) and 0.77 (95% CI: 0.76-0.79) in the derivation and validation groups, respectively. CONCLUSIONS: We developed a clinical risk score for predicting MDD and CG among bereaved family members of patients with cancer. However, further research is needed for external validation and assessment regarding its implementation in actual practice.

Comparison of two measures for Complicated Grief: Brief Grief Questionnaire (BGQ) and Inventory of Complicated Grief (ICG).

OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures. METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide. RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief. CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.

High Feasibility and Safety, but Negligible Efficacy of Acupressure for Treating Nausea in Cancer Patients Admitted to the Palliative Care Unit: A Pilot Study.

Management of nausea is an important dimension of palliative care. The first choice for treating nausea is antiemetics, but their efficacy is inadequate. Acupressure intervention for nausea in cancer patients has been studied as a non-pharmacological therapy, and appears to have had some effect. However, such a therapy has not been well reviewed in patients with terminal cancer. The purpose of this study was to clarify the feasibility of acupressure intervention and examine its safety and preliminary efficacy. We recruited cancer patients that fulfilled the eligibility criteria and were admitted to the palliative care unit, from August 2018 to February 2019, in Tohoku University Hospital, Japan. We conducted a longitudinal assessment of acupressure intervention in a single arm. We identified the patient's research accomplishments and evaluated possible fainting due to the vagal reflex and symptom severity. Descriptive statistics were used to calculate the completion rate for the feasibility and Wilcoxon signed-rank tests to compare the average of continuous variables for the safety and efficacy. Twelve patients participated in this study and completed the procedure. Their average age was 70 years (SD = 9.3), and the most common primary cancer sites were the rectum and pancreas. The blood pressure and pulse rate did not drop sharply. Four patients exhibited decreased nausea but there was no statistically significant difference (P = 0.5). We suggested that acupressure has high feasibility and safety, as an intervention for patients with terminal cancer. However, no significant differences were observed regarding its effect on nausea.

Are cancer patients living alone more or less likely to achieve a good death? Two cross-sectional surveys of bereaved families.

This study examined differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings. Secondary analysis of data collected across two cross-sectional self-reported questionnaire surveys was undertaken. The participants were bereaved family members of cancer patients who had died in palliative care units (PCUs), acute hospitals or homes. We stratified the data by the place of death and examined the differences in sociodemographic characteristics to determine the relationship between cancer patients achieving a "good death" and whether they were living alone. The data were collected through 15,949 surveys. On the Good Death Inventory, significantly higher total scores emerged for cancer patients who were living alone than for those who not living alone in PCUs (effect size [ES] = 0.11, Student's t-test: p < .0001), but not in acute hospitals (ES = -0.03, p = 0.74) or home care services (ES = 0.02, p = 0.86). Cancer patients who were living alone were more likely to have been female, been older and have earned a lower annual income than those who were not living alone. Thus, among those who had received specialized palliative care, there was no difference in the quality of palliative care between cancer patients who were or were not living alone.

Impressions of Interfaith Chaplain's Activities among Patients in a Palliative Care Unit: A Semi-Structured Interview-Based Qualitative Study.

Providing spiritual care in light of a patient's religious and/or spiritual background can help improve the quality of end-of-life care. Rinsho-shukyo-shi is a Japanese interfaith chaplain who provides religious and spiritual care to patients. In this study, we qualitatively explore the impressions of patients in a palliative care unit of the activities of an interfaith chaplain in a hospital in Japan. The authors used semi-structured interviews carried out by a male nurse experienced in qualitative and quantitative research in palliative care. The male nurse asked only a few predetermined questions in the interviews, which were conducted from January 19 to December 26, 2018. The interviewees were 15 patients diagnosed with advanced cancer (five men and 10 women; aged 53-81 years), and they were admitted to the palliative care unit of Tohoku University Hospital (the hospital has no religious affiliation). Patients who had spoken to the interfaith chaplain at the hospital at least twice were included in the study. The interviews were digitally audio-recorded, transcribed verbatim, and analyzed. Three main themes were identified through thematic analysis. Resistance varied across patients; no patient felt resistance to the intervention by, or to the presence of, the interfaith chaplain once he/she had spoken with him. Opinions about the interfaith chaplain also varied, with 10 patients claiming that his role was necessary for end-of-life care and beneficial for the chaplain himself. Finally, the patients' religious beliefs varied widely. In conclusion, the interfaith chaplain is deemed helpful by the interviewed patients in relieving their anxieties.

Achievement of a good death among young adult patients with cancer: analyses of combined data from three nationwide surveys among bereaved family members.

PURPOSE: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years). METHODS: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores. RESULTS: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported "agree/absolutely agree" regarding 9 items, which included "feeling that one's life was completed" in 44 (18%; 95% confidence interval (CI) = 14-23%), "being independent in daily life" in 48 (20%; 95% CI = 15-25%), and "being free from physical distress" in 103 (42%; 95% CI = 36-48%) young patients. Young patients were significantly less likely to feel "one's life was completed" (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and "not being a burden to others" (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged. CONCLUSIONS: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.

Families' Sense of Abandonment When Patients Are Referred to Hospice.

BACKGROUND: Terminally ill patients with cancer and their families may have a sense of abandonment when they are referred to hospice. This study aimed to clarify the prevalence of families' sense of abandonment, explore the association between the sense of abandonment and the oncologists' behaviors, and investigate the association between the sense of abandonment and the families' depression and complicated grief. PATIENTS AND METHODS: This was part of a nationwide self-reported questionnaire survey of bereaved families of patients with cancer who died in inpatient hospices. We sent questionnaires to 947 bereaved families of patients with cancer who died in 133 certified hospices between May 2012 and January 2014. RESULTS: Among 707 responses obtained, a total of 189 (26.7%) families felt abandoned. The factors significantly associated with a greater sense of abandonment were that the oncologists said there was nothing more to do for the patient, the patient's age of less than 60 years, and being the patient's spouse. The factors significantly associated with a lower sense of abandonment were that the oncologists reassured the patients that they had received the best anticancer treatment, that the oncologists recommended hospices as one potential choice rather than mandatory, and that a palliative care team provided care. Families with a sense of abandonment had higher scores on the Patient Health Questionnaire-9 (p = .096) and Brief Grief Questionnaire (p < .001). CONCLUSION: Approximately a quarter of bereaved families had a sense of abandonment, which was associated with a higher rate of complicated grief. Oncologists may reduce the sense of abandonment by reassuring that the patients received the best anticancer treatment, recommending hospices as a potential choice rather than as mandatory, and by not saying there is nothing that can be done for the patients. IMPLICATIONS FOR PRACTICE: This self-reported questionnaire study investigated the prevalence of families' feelings of abandonment when they were referred to hospice care, focusing on the association of sense of abandonment and the behavior of their physicians. Nearly a quarter of families felt abandoned by the referral to hospice, and the behavior of some oncologists was associated with the sense of abandonment.

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.

Factors associated with possible complicated grief and major depressive disorders.

OBJECTIVE: Complicated grief (CG) is considered a distinctive symptom from other bereavement-related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co-morbidly; however, the factors associated with each situation are unclear. METHODS: We conducted a nationwide cross-sectional questionnaire survey involving bereaved family members of cancer patients in 175 institutions. The following items were included in the questionnaires to assess the prevalence of CG and MDD, and the following associated factors: demographic characteristics; bereaved family depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire); structure and process of care (Care Evaluation Scale); overall care satisfaction; and achievement of a good death (Good Death Inventory). RESULTS: A total of 9123 questionnaires were returned. The prevalence of CG and MDD was 14% and 17%, respectively. Additionally, 58% of the possible CG participants showed co-morbid symptoms. Common factors that showed significant association with either independent or co-morbid symptoms of CG and MDD were pre-existing mental impairment; belief in the survival of the soul after physical death; unpreparedness for the death; poor physical or psychological health status; and the belief that the deceased felt themselves as a burden to others (all P < 0.05). The duration of bereavement did not remain significant after multivariate analysis. CONCLUSIONS: While there were many common factors associated with both CG and MDD independently, few participants exhibited associations to both CG and MDD. Therefore, CG and MDD can be considered as distinctive symptoms, which frequently appear co-morbidly.

The distress and benefit to bereaved family members of participating in a post-bereavement survey.

BACKGROUND: Few studies have simultaneously collected quantitative data regarding the positive and negative effects of participating in post-bereavement surveys. METHODS: We conducted a cross-sectional postal questionnaire survey in October 2013. Potential participants were caregivers for family members who had died in four inpatient palliative care units, two home hospices, and a general hospital. We collected opinions regarding the distress and benefit of completing a post-bereavement survey. After collecting data, we provided feedback to participating institutions in the form of study results and de-identified open-ended comments. RESULTS: Of 692 potential participants, 596 were sent questionnaires; 393 returned questionnaires were valid and analyzed. Of the respondents, 62% reported being distressed by completing the questionnaire. Female participants and those who were mentally ill during the caregiving period reported more distress. However, 86% of respondents reported they found the questionnaire beneficial. Better quality of end-of-life care and respondent depression were associated with more benefit. Major benefits were: contributing to the development of end-of-life care as a family (63%); expressing gratitude to the hospital and medical staff (60%); and looking back and reflecting on the end-of-life period (40%). Feeling benefit was not correlated with feeling distressed (P = -0.02). CONCLUSION: In this large-scale study on the effects of post-bereavement surveys in Japan, many bereaved family members reported that completing the survey was beneficial. In addition to possibly having feelings of distress, post-bereavement surveys might also be beneficial to end-of-life care facilities.

The Japan hospice and palliative evaluation study 4: a cross-sectional questionnaire survey.

BACKGROUND: Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members' self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies. METHODS: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire. DISCUSSION: This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings.