Bereaved Family Members Of Patients Research Articles

Enhancing end–of–life care quality and achieving a good death for the elderly in Japan

BackgroundIn the context of an aging populations, there is an escalating need for palliative care tailored to the needs of the elderly. This study aimed to assess differences in symptoms and good death among the elderly, along with the structures and processes involved in end–of life care, and to explore the impact of age on achieving a good death. MethodsWe conducted a questionnaire survey for bereaved family members of patients with cancer, heart disease, stroke, pneumonia, and kidney failure in 2019 and 2020. The study population was categorized into the following age groups: ≤64, 65–74, 75–84, and ≥85. The outcomes included symptom intensity, achievement of a good death, and receipt of quality care. ResultsIn total, 62,576 bereaved family members agreed to participate in the survey (response rate; 54.0 %). The weighted percentages of 'severe' and 'very severe’ symptoms decreased with age. These trends were observed across age groups, even among the elderly. The strongest effect of age on achieving a good death was found for 'feeling that life is complete’ with reference to those aged ≤64 years: 65–74 years (odds ratio [OR]; 2.09, 95 % CI; 1.94 to 2.25), 75–84 years (OR; 4.86, 95 % CI; 4.52 to 5.22) and ≥85 years (OR; 12.8, 95 % CI; 11.9 to 13.8). ConclusionAge-specific differences were observed in quality of death, quality of care, and symptom intensity. It is important to provide individualized consideration for each age group rather than categorizing them broadly as the elderly when caring for them.

Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective.

Objective: The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia. This study aimed to evaluate the degree and factors of caregiver burden in cancer patients with dementia who died in hospice palliative care units. Methods: A nationwide cross-sectional survey was conducted among bereaved family members of patients with cancer who died in palliative care units. An anonymous self-report questionnaire was sent to bereaved family members, and they were asked if they were aware of the diagnosis of dementia. The short version of the Caregiver Consequence Inventory was used to measure caregiver burden. Results: The analysis included 670 bereaved family members. Of these, 83 (12.4%) were bereaved family members of terminal cancer patients with dementia. The caregiver burden was statistically significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family caregivers of terminal cancer patients with dementia. Longer anti-cancer treatment duration (odd ratio, 4.63), poor mental and physical health of family caregivers (odds ratio, 2.05 and 2.20, respectively), pain (odd ratio, 1.72), and dyspnea (odds ratio, 1.67) were contributing factors for caregiver burden. Conclusions: Family caregivers of terminal cancer patients with dementia require care that considers the characteristics of the two serious diseases. Considering the goal of anti-cancer treatment and symptom relief may be a useful strategy for reducing caregiver burden.

The Impact of Stressful Life Events after Bereavement: A Nationwide Cross-sectional Survey.

Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear. To clarify the degree of distress due to postbereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer. This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to postbereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio [OR]=2.5, P < 0.01) and CG (OR=2.5, P < 0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events. Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.

Factors related to suicidal ideation among bereaved family members of patients with cancer: Results from a nationwide bereavement survey in Japan

BackgroundBereaved family members are known to have a higher risk of suicide, although relevant research is lacking. We aimed to clarify the percentage of bereaved family members of patients with cancer who experience suicidal ideation and the associated factors. MethodsWe conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan, analyzing data from a total of 17,237 bereaved family members of patients with cancer. The Patient Health Questionnaire 8 (PHQ-8) and Item 9 of the PHQ-9 were used to assess depression (PHQ-8 score ≥10) and suicidal ideation, respectively. We assessed items such as socio-demographic data, complicated grief (CG), preparedness for bereavement, and perceived social support. Logistic regression analysis was used to reveal factors related to suicidal ideation. ResultsOverall, 11 % of subjects reported some amount of suicidal ideation in the previous two weeks, with a suicidal ideation rate as high as 42 % among those with a higher risk of depression. Significant associations (all p < 0.0001) were found between suicidal ideation and the family member's depressive state (OR: 10.01), poor physical health status during caregiving (OR: 1.24), poor psychological health status during caregiving (OR: 1.38) pre-existing mental illness (OR: 1.38), insufficient preparedness for bereavement (OR: 0.59), and poor perceived social support (OR: 1.42). LimitationsThe respondents were limited to family members of patients with cancer in Japan, and the study involved cross-sectional self-reported data. ConclusionsClinicians should identify bereaved family members at a high risk of suicide by carefully assessing these risk factors identified in the present study.

Bathing in Terminal Care of Cancer Patients and Its Relation to Perceptions of a "Good Death": A Nationwide Bereavement Survey in Japan.

Background:Bathing in a tub is integral to Japanese culture. It improves palliative care patients' symptoms and may improve quality of life.Objectives:This study aimed to determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death.Design:This was a cross-sectional, anonymous, self-report questionnaire survey.Setting/Subjects:The questionnaire for this study was sent to bereaved family members who had lost loved ones in 14 general hospitals and 187 palliative care wards in Japan.Measurements:The bereaved family members of the patients who had actually bathed were asked about their impression of bathing. The short version of the Good Death Inventory (GDI) and the Care Evaluation Scale were used to evaluate “achievement of a good death.” In total, 1819 surveys were sent between July and September 2018 to bereaved family members of patients who had died between February 2014 and January 2018 in 14 general hospitals and 187 palliative care wards in Japan. Overall 885 questionnaires (valid response rate 48%) returned by bereaved family members were analyzed.Results:Overall, 85% of bereaved family members of patients who bathed evaluated the experience positively, 86% reported that the patient's face seemed to become calm after the bath, and 28% of bereaved family members whose loved one had not bathed reported regretting it. The total GDI score for the bereaved family's desired death was 82.7 ± 13.0 for the bathing group and 75.4 ± 15.7 for the no bathing group, a significant difference (effect size = 0.52, p < 0.01).Conclusions:Bathing before death was evaluated positively and was associated with the achievement of a good death.

Nurses' Grief Counseling for Bereaved Family Members of COVID-19 Patients in Wuhan, China: A Cross-Sectional Survey

This is the first study to assess nurses' attitudes and skills regarding grief counseling for bereaved family members of patients who died from coronavirus disease 2019 (COVID-19) in Wuhan, China. Using a cross-sectional design, 412 nurses selected through convenience sampling completed a demographic characteristics survey, Attitudes of Grief Counseling Scale, (AGCS) and Skills of Grief Counseling Scale (SGCS). Average AGCS score was 32.89 (SD = 9.46), with an overall percentage rate score of 65.6%. Factors influencing attitudes toward grief counseling included other grief counseling skills, educational level, communication skills, and training related to grief counseling (p < 0.05). Average SGCS score was 18.81 (SD = 4.25), with an overall percentage rate score of 58.7%. Factors influencing skills of grief counseling included responsibilities and roles, frequency of contact with the bereaved, and positive view of grief counseling (p < 0.05). Nurses' attitudes and skills regarding grief counseling were low, indicating an urgent need to improve grief counseling. [Journal of Psychosocial Nursing and Mental Health Services, 59(11), 18-24.].

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

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. 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. 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). 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.

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. 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). 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. 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.

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

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. 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. 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. 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. 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.

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

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. 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. 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. 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.

Death Pronouncements: Recommendations Based on a Survey of Bereaved Family Members.

To clarify the family-perceived necessity of improvement in death pronouncement and explore the potential association between behaviors of physicians and the family-perceived necessity of improvement. A questionnaire survey was conducted involving 226 bereaved family members of patients who had died at home while receiving hospice service. A total of 91 responses were analyzed (response rate, 47%). All pronouncements were performed by physicians. A total of 89% (n = 81, 95% confidence interval, 81%-94%) of family members reported that they felt no necessity of improvement at all or that almost no improvement was needed. Behaviors of physicians significantly positively correlated with the family-perceived necessity of improvement were that physicians acted calmly, and were not rushed. Those negatively associated were that physicians did not verify the time of death clearly, left the patient's clothes disheveled, and touched the family members' backs or shoulders as an expression of empathy. More than 90% of family members recommended that physicians act calmly, have a suitable appearance for the situation, introduce themselves to family members, explain the cause of death explicitly, and conduct a check using a light and stethoscope for death pronouncement. Most of the family members who had experienced a patient's death at home were satisfied with the death pronouncement. Several factors were associated with family satisfaction, and further large studies are needed to confirm the results.

Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea.

We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was "too late" or "appropriate" and the Good Death Inventory (GDI). A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients' unawareness of terminal status, shorter stay in the HPCU, younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected.

What Bereavement Follow-Up Does Family Members Request in Japanese Palliative Care Units?

There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan. To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care. Qualitative design based on semistructured interviews and content analysis. Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions. Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service's relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services.

Quality of life and mental health in the bereaved family members of patients with terminal cancer

This study specifically aimed to compare quality of life (QOL) and mental health in bereaved family members of patients with cancer with that of the general population and to examine factors associated with QOL and mental health in this population. A nationwide multicenter, cross-sectional survey was administered to the bereaved family members of patients with terminal cancer. Thirty-three palliative care centers designated by the Ministry of Health and Welfare participated in this study. The participants in this study were 501 bereaved family members of patients with terminal cancer and matched control individuals from the Korean National Health and Nutrition Examination Survey. EQ-5D and several questions used in Korean National Health And Nutrition Examination Survey were used in to measure health-related QOL and mental health. Health-related QOL, as determined by EQ-5D, was significantly lower in bereaved family members than in controls (0.88 ± 0.20 vs 0.93 ± 0.13, p = 0.002). Bereaved family members experienced more frequent episodes of depression (33.1% vs 12.5%, p < 0.001) and suicidal thoughts (31.4% vs 16.4%, p < 0.001) during the previous year than did controls. Female sex, lower income, spousal relationship, and longer duration of survival after palliative care referral were negatively correlated with health-related QOL. Younger age and higher mental burden of caregiving were associated with a higher risk of impaired mental health. Our results confirm that bereaved family members of patients with cancer have lower health-related QOL and mental health than the general population. Healthcare providers should focus more attention on this vulnerable group, and various support programs should be developed to improve their health-related QOL.