Bereaved Family Members Research Articles

Bereavement Support Services in a National Sample of Hospices: A Content Analysis

Although the Medicare Hospice Benefit mandates that hospices provide bereavement services to families for 1 year following death, it does not stipulate what services should be offered or how. Thus, this study aimed to explore the range of hospice bereavement services. This study stems from Cagle et al.’s (2020) prior study surveying 600 randomly selected agencies, stratified by state and profit status. Most participants (N = 76) worked as clinical supervisors or directors of patient services (41.6%) for medium-sized (53.2%), for-profit hospices (50.6%). Responses to “What types of bereavement support does your hospice provide to families?” were content analyzed. Analyst triangulation and peer debriefing enhanced trustworthiness. Four domains emerged: timing of support, providers of support, targets of support, and formats of support. Each domain reflected substantial variability. All hospices offered postdeath bereavement support. A minority described offering predeath support, often through bereavement risk assessment and supportive services targeting those at risk. Providers frequently included trained bereavement counselors, social workers, and chaplains. Less often, hospices leveraged familiar members of the decedents’ care team to encourage family participation. Although bereavement services predominantly targeted surviving adult family members of deceased hospice patients, services tailored to children and hospice-unaffiliated community members also emerged. The format of bereavement services demonstrated the widest variability. Commonly reported formats included written materials, support groups, and phone calls. Most hospices employed multiple formats. Although findings are consistent with prior research, the variability in each domain complicates rigorous investigation of which aspects offer the greatest benefit to bereaved family members.

Assessing the need for a question prompt list that encourages end-of-life discussions between patients with advanced cancer and their physicians: A focus group interview study.

Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians. Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed. The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers' role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment. Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

Post-traumatic growth of family members of deceased cancer patients and related factors in Japan: A cross-sectional study.

This study examines the post-traumatic growth (PTG) of bereaved families who care for cancer patients and related factors in Japan. Participants included 1298 members of bereaved families of cancer patients (aged 20 or older). An anonymous self-administered questionnaire on PTG, coping, and social support was mailed to 496 bereaved families who provided written informed consent. Responses were obtained from 476 bereaved families; however, since 28 families had missing data, 448 were included for the analyses. The mean age of participants was 61.4 years: 69% women and 45% spouses. The average age of the deceased was 72.8 years old for men (59%). The PTG score of the bereaved families was higher for women than for men (p<0.0001). Moreover, the Post-Traumatic Growth Inventory Score for those above 65 years of age was higher than of those below 65 years of age (p<0.0001). A regression analysis confirmed that emotion-focused coping, problem-focused coping, relationship with the deceased, advanced age of bereaved families, and emotional support impacted PTG. The significance of the deceased for the bereaved, bereaved family members being older in age, emotion-focused coping, problem-focused coping, and emotional support suggest that these aspects are associated with psychological growth in terms of accepting the death of a loved one and moving forward. It is necessary to evaluate the relationship between the bereaved family and the deceased, the age and gender of the bereaved, coping behaviors, and support status and establish a higher quality bereaved family care system.

Conflicted or close: Which relationships to the deceased are associated with loss-related psychopathology?

Prior studies have shown that pre-loss closeness and conflict with a deceased person are associated with the severity of symptoms of prolonged grief and/or depression. Nevertheless, mechanisms underlying these relationships are not well understood. We propose a theoretical model in which past closeness and conflict are related to prolonged grief and depression via concrete and symbolic continuing bonds (CB). The aim of our study was to test this model in a sample of bereaved family members. Individuals (N = 244) who had lost a family member from 0.5 to 8.0 years before the survey completed the Quality of Relationships Inventory-Bereavement Version, the Continuing Bonds Scale, the Prolonged Grief Disorder-13 scale, and the Patient Health Questionnaire-9. The findings partially confirmed our model. Closeness was positively and moderately associated with symptoms of prolonged grief but not with symptoms of depression. Conflict was positively and weakly associated with symptoms of depression and prolonged grief. All of these relationships were only partially mediated by concrete/maladaptive and symbolic/adaptive CB. The differences in the relationship of past closeness and conflict to prolonged grief and depression symptoms suggest that inter- and intrapersonal mechanisms of prolonged grief and depressive symptoms may be distinct. If future, especially longitudinal studies, confirm our model, CB would be a possible target for interventions for bereaved persons who had a close and/or conflicted relationship with a deceased family member and experience loss-related psychopathology. Continuing bonds (CB) are a potential target of interventions for bereaved persons who had a close and/or conflicted relationship with a deceased family member and experience symptoms of prolonged grief and/or depression. Internalization of the capacity to care for yourself and feel autonomous in a safe and stable therapeutic relationship may lead to increased self-confidence, promote working through past experiences in the relationship with the deceased, and gradual reduction of concrete forms of CB. Increasing awareness and acceptance of emotional experiences may contribute to the appreciation of past relationship with a deceased person and the growth of symbolic forms of CB. Future research should focus on verifying the effectiveness of the attachment-informed therapeutic approach to working with CB.

The Conservation Treatment of the Bark of Wooden Sculpture

The ‘artist’s intention’ plays an important role in the conservation process of contemporary art. Accordingly, the information on artworks owned by the artist, their bereaved family members, and foundations that have decision-making power is important. The artist’s interview is the kind of data that can clear ‘artist’s intentions’ to ensure reliable conservation treatment can be carried out even after the artist’s death. Therefore, this study attempted to use information from the artist’s interview on the type of wood in the manufacture of the filler required for lifted and separated bark conditions in the conservation process of wooden artwork in the National Museum of Modern and Contemporary Art. While the conservation treatment resulted in the stable preservation of the bark of artwork, an analysis of the wood confirmed that the information in the artist’s interview was not true. Consequently, we suggest that attention must be paid toward the information provided by artist, their bereaved families, etc. Based on the result of this study, this is also expected to help preserve upcoming artworks with similar bark conditions.

Coronavirus Disease Brings Death without the Opportunity of Saying Goodbye

Coronavirus disease (COVID-19) victims have spread worldwide, and in Japan, 1.5 million people are infected and 16,000 have died from February 2020 until the end of August 2021. The COVID-19 starts from relatively light symptoms such as cold, and then the conditions worsen rapidly in 7 to 10 days, and results in an unexpected sudden death. The major impacts of COVID-19 in the society of the COVID-19 pandemic is the implementation of social distancing strategies and isolation procedures. We cannot provide care and comfort at the end of the patient’s life, share grief with bereaved family members, and hold normal funeral ceremonies. The COVID-19 pandemic causes the absurdity of death without the opportunity of saying goodbye, and ambiguous loss occurs, and continues to cause the prolonged grief disorder. Medical personnel make efforts to prevent ambiguous loss and the prolonged grief disorder using cognitive behavioral therapy and digital transformation. We examined the COVIT-19 pandemic from the viewpoint of an emergency hospital, and showed the experience and results of COVID-19 patients in our hospital, and reconsidered the essence of grief care and bereavement care of family members who lost their loved ones during the COVID-19 pandemic.

Bereaved Family Members' Perceived Care at the End of Life for Patients with Noncancerous Respiratory Diseases.

Background: Data regarding the quality of end-of-life care for patients with noncancerous illnesses are lacking.Objective: This study aimed to evaluate end-of-life care for patients with noncancerous respiratory disease from the perspective of bereaved family members and explore the factors associated with the quality of patient death and care.Design: This cross-sectional study included patients who had died of noncancerous respiratory disease in general wards of pulmonary department in Japan between 2014 and 2016 and conducted an anonymous self-report questionnaire survey for the patients' bereaved family members.Measurements: We evaluated overall satisfaction with care and the quality of death and end-of-life care using the Good Death Inventory (GDI) and Care Evaluation Scale (CES), respectively. A multiple linear regression analysis was performed to explore the factors associated with these outcomes.Results: In total, 130 questionnaires were distributed, and the effective response rate was 38% and 50 patients were included (median age: 82 [range 58–101] years; 37 men [74%]). Primary diagnoses at death included 29 cases of pneumonia (58%), 15 interstitial lung disease (30%), and 3 chronic obstructive pulmonary disease (6%). Of the bereaved family members, 26 (52%) were spouses, and 19 (38%) were children (median age [range]: 68 [33–102] years, 15 men [30%]). The overall CES and GDI scores (mean ± standard deviation) were 77 ± 15 and 79 ± 15, respectively. The presence of dementia was an independent factor associated with high CES and GDI scores in the multiple linear regression analysis.Conclusions: In patients who died of noncancerous respiratory disease, the presence of dementia could be associated with the higher quality of patient death and care. In dementia, an understanding of the terminal nature of this condition may lead to an appropriate end-of-life care.

Family reports of end-of-life care among veterans in home-based primary care: The role of hospice.

The Department of Veterans Affairs (VA)'s home-based primary care (HBPC) program provides coordinated, interdisciplinary care to seriously ill and disabled veterans, but few evaluations have considered end-of-life (EOL) care in this population. The aim of this study was to describe veterans' use of community-based hospice services while enrolled in HBPC and their associations with bereaved families' perceptions of care. This study was a retrospective analysis of electronic medical record and bereaved family survey (BFS) data for veterans who died while enrolled in VA's HBPC program between October 2013 and September 2019. Seven regional VA networks called Veteran Integrated Service Networks participated in BFS data collection. The final sample included 3967 veterans who were receiving HBPC services at the time of death and whose next-of-kin completed a BFS. The primary outcome was the BFS global rating of care received in the last 30 days of life. Adjusted proportions for all BFS outcomes were examined and compared between those who received community-based hospice services and those who did not. Overall, 52.6% of BFS respondents reported that the care received by HBPC-enrolled veterans in the last 30 days of life was excellent using the BFS global rating. Among families of HBPC-enrolled veterans who received community-based hospice services, the BFS global rating was roughly eight percentage points higher than those who did not (55.7 vs. 47.0%, p < 0.001). On 12 of the 14 secondary BFS outcomes, veterans who received hospice scored higher than those who did not. Receipt of hospice services while enrolled in HBPC was associated with higher ratings of EOL care by bereaved family members. Integration of community hospice partners for qualifying veterans who are enrolled in the HBPC program represents a potential opportunity to improve the overall experience of EOL care for veterans and their families.

Changes in Relationships in Bereaved Families: Perspectives of Mothers Who Lost a Child to Cancer.

The loss of a child greatly affects the dynamics of interpersonal relationships in bereaved families. This study explored the relationships in bereaved Korean families from the perspectives of mothers after the death of a child due to cancer. We conducted in-depth interviews with 15 bereaved mothers of a deceased child with childhood cancer. Thematic analysis identified 12 subthemes related to bereaved mothers' struggles in grief within three significant themes based on family relationships: (a) relationship with husband; (b) relationship with surviving child or children; and (c) relationships with extended family members. Findings highlight bereaved mothers' need to build supportive family relationships while acknowledging bereaved family members' different grieving styles and their own challenges in grieving the loss of a child.

Oscillations, boundaries and ethical care: Social work practitioner-researcher experiences with qualitative end-of-life care research

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher’s own bias and assumptions emerged when analysing families’ distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants’ use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research.

Associations between Family Satisfaction with End-of-Life Care and Chart-Derived, Process-Based Quality Indicators in Intensive Care Units.

Background/Objective: Evidence linking process-based, high-quality end-of-life (EOL) care indicators to family satisfaction with EOL care in intensive care units (ICUs) remains limited. This study aimed to fill this gap. Design/Setting/Subjects/Measures/Statistical Analysis: For this exploratory, prospective, longitudinal observational study, 278 family members were consecutively recruited from medical ICUs at two medical centers in Taiwan. Family satisfaction with ICU care was surveyed in the first month after patient death using the Family Satisfaction in the ICU questionnaire (FS-ICU). Associations between FS-ICU scores and process-based quality indicators collected over the patient's ICU stay were examined using generalized estimating equations. Results: Documentation of process-based indicators of high-quality EOL care was generally associated with higher scores for both the FS-ICU Care and FS-ICU Decision-Making domains. Higher family satisfaction with ICU care was significantly associated with physician-family prognostic communication (β [95% confidence interval (CI)]: 3.558 [2.963 to 4.154]), a do-not-resuscitate (DNR) order in place at death (23.095 [17.410 to 28.779]), and death without cardiopulmonary resuscitation (CPR) (13.325 [11.685 to 14.965]). Family members' satisfaction with decision making was positively associated with documentation of social worker involvement (4.767 [0.663 to 8.872]), a DNR order issued (10.499 [0.223 to 20.776]), and withdrawal of life-sustaining treatments (LSTs) before death (2.252 [1.834 to 2.670]). Conclusions: EOL care processes are associated with family satisfaction with EOL care in ICUs. Bereaved family members' satisfaction with EOL care in ICUs may be improved by promoting physician-family prognostic communication and psychosocial support, facilitating a DNR order and death without CPR, and withdrawing LSTs for patients dying in ICUs.

Communication at the End of Life.

End-of-life patients experience physical, mental, social, and existential distress. While medical personnel provide medication and care to alleviate patients' distress, listening to and interacting with patients remains essential for understanding their psychological condition. The most important tool, though difficult to implement in practice, is end-of-life discussion (EOLD). EOLD has been shown to have positive effects on end-of-life treatment choices, achievement of patients' life goals, improvements in the quality of life of patients and their families, and the prevention of depression and complicated grief among bereaved family members. EOLD is not often undertaken in clinical practice, however, due to hesitancy among medical personnel and patients for various reasons. In order to conduct an EOLD, the patient's judgment, psychiatric illnesses such as delirium and depression, and psychological issues such as the side effects of psychotropic drugs, denial, and collusion must be evaluated. Open and honest conversation, treatment goal setting, the doctor's familiarity with the patient's background, and attentiveness when providing information are important elements for any dialogue. Meaning-centered psychotherapy was developed to alleviate the existential distress of cancer patients, and its application may promote EOLD. The future development of meaning-centered psychotherapy in practice and in research is expected to further promote EOLD.

Are family relationships associated with family conflict in advanced cancer patients?

Family conflict during end-of-life care is an important issue for advanced cancer patients and their families, although studies are lacking. We investigated the association between family relationships and family conflict in advanced cancer patients. This study was a secondary analysis of a nationwide multicenter questionnaire survey targeting the bereaved family members of cancer patients who died in palliative care units, general wards, or at home to evaluate the quality of end-of-life care in Japan. A total of 1084 questionnaires (63.0%) were returned and we analyzed a total of 908 responses. In total, 38.0% of family members reported at least one family conflict during end-of-life care, and the most frequent family conflict was "about certain family members not pulling their weight" (23.5%). Multivariate linear analysis revealed family members who asserted their opinions (p<0.001), family assessment device score (p<0.001), worries about family finances during cancer treatment (p<0.001), family members contacted after illness were helpful (p=0.003), female patients (p=0.03), and family with family relationship index ≤7 (p=0.04) were positively associated with the outcome-family conflict (OFC) score. Proxy decision maker was selected by the patient (p=0.003), people listened to families' worries or problems (p=0.003), physician gave sufficient explanation (p=0.003), living will before their illness (p=0.038) and female bereaved family members (p=0.046) were negatively associated with the OFC score. It may be important for health care providers to actively assess the possibility of family conflicts according to family relationships, such as a proxy decision maker having been selected by the patient.

Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Background/ObjectiveDeath in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care.MethodIn this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling.ResultsThe prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]).ConclusionsThe likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

Factors associated with symptoms of prolonged grief among bereaved family members of persons who died from sudden cardiac arrest

Abstract Funding Acknowledgements Type of funding sources: Public Institution(s). Main funding source(s): Linnaeus University, Sweden Background High incidence and mortality make cardiac arrest one of the leading causes of death in western countries. Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with increased risk for prolonged grief disorder. This serious disorder needs to be identified and treated. Purpose To explore factors associated with symptoms of prolonged grief among bereaved family members of persons who died from sudden cardiac arrest. Methods This cross-sectional observational study was based on a questionnaire to bereaved family members six month after the death. Background questions about the family member and the loss, the Prolonged Grief disorder instrument (PG-13) and the Multidimensional Scale of Perceived Social Support (MSPSS) were included and analyzed using univariate and multiple linear regression. Results This study included 108 family members who were adult children (n = 55, 51%), spouse (n = 36, 33%), or significant others (n = 17, 16%) to a person that died of sudden cardiac arrest. The mean age of the family members was 61 years (range 25-87), most were women (n = 74, 69%), and did not have a university degree (n = 74, 69%). A majority of the cardiac arrests took place out of hospital (n = 59, 81%). One third of the family members were present during the resuscitation (n = 35, 32%). A minority was offered professional support from the healthcare service (n = 93, 86%) and few sought healthcare for problems in relation to the loss (n = 19, 18%) and/or received professional support from a psychologist or equivalent (n = 16, 15%). In total, 18% (n = 19) reported symptoms of prolonged grief and the prevalence was even higher among spouses (n = 10, 29%). In the univariate regression models, being a spouse of the deceased (B = 6.34, p = 0.004, R2 = 0.08), sought healthcare related to the loss (B = 10.51, p &amp;lt; 0.001, R2 = 0.15), offered support from the healthcare related to the loss (B = 6.28, p = 0.030, R2 = 0.05), received professional support for the loss (B = 7.30, p = 0.011, R2 = 0.06), and lower levels of perceived social support (B=-0.28, p &amp;lt; 0.001, R2 = 0.16) were significantly associated with higher levels of symptoms of prolonged grief. All these variables, except offered support from the healthcare, were still significant in the multiple regression model and explained 35% of the total variance in PG-13 (F(4, 96)=12.96, p &amp;lt; 0.001). Age, sex, education, and presence during resuscitation were not significantly associated with symptoms of prolonged grief in any of the regression models. Conclusion Prolonged grief is a significant problem in bereaved family members of persons who died from sudden cardiac arrest, particularly in spouses, those in need of professional support from the healthcare, and those with low social support. Bereavement support should be offered to reduce the risk to developing prolonged grief after unsuccessful resuscitation and sudden death from cardiac arrest.

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.].

Support received by family members before, at and after an ill person\u2019s death

BackgroundIt is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness.MethodsA retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20–90 years old, 70% women) of people who died in hospital between August 2016-April 2017.ResultsOf the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death.ConclusionsFamily members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

BackgroundAssessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES).MethodsFrom January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life.ResultsA total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age.Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

Lived Experiences of Family Members of Patients With Severe COVID-19 Who Died in Intensive Care Units in France

During the initial surge of the COVID-19 pandemic, family members were often separated from their loved ones admitted to intensive care units (ICUs), with a potential for negative experiences and psychological burden. To better understand the experiences of bereaved family members of patients who died in an ICU during the COVID-19 pandemic, from the time of hospital admission until after the patient's death. This qualitative study used semistructured, in-depth interviews to collect experiences from bereaved family members of patients who died from severe COVID-19 in 12 ICUs during the first wave of the pandemic in France. Purposeful sampling was used to ensure the diversity of study participants with respect to sex, age, relationship with the patient, and geographic location. All data were collected between June and September 2020, and data analysis was performed from August to November 2020. Interviews were conducted 3 to 4 months after the patient's death and were audio-recorded and analyzed using thematic analysis. Among 19 family members interviewed (median [range] age, 46 [23-75] years; 14 [74%] women), 3 major themes emerged from qualitative analysis. The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information. Distance communication was not sufficient, and participants felt it increased the feeling of solitude. The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality. The third was regarding disruptions in end-of-life rituals: family members described "stolen moments" after the patient's death, generating strong feelings of disbelief that may lead to complicated grief. This qualitative study found that during the initial wave of the COVID-19 pandemic in France, bereaved family members described a disturbed experience, both during the ICU stay and after the patient's death. Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences.

‘Special death’: Living with bereavement by drug-related death in Ireland

This paper explores the impact of complicated grief on the family system following the drug-related death of a family member. Drug-related deaths are rife with moral stigmas, and those left behind often carry an emotional burden laden with shame and guilt. 17 bereaved family members were interviewed using semi-structured interviews and transcripts were analyzed using reflexive thematic analysis. Three core themes were generated: Renegotiation of Relationships; Experiencing Complex Emotions; and Adjusting to a New Reality. The findings demonstrate that this population experience great difficulty in processing their grief as they struggle with family breakdown, navigating supports and stigma.