Bereaved Families Research Articles

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times

BackgroundThe death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses.MethodsWe conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia.ResultsSeveral tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare.ConclusionsThis study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

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

BackgroundOutcome 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.MethodsRetrospectively 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.ResultsOf 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]).ConclusionsThe 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.

The long-lasting effect of armed conflicts deaths on the living: Quantifying family bereavement.

Armed conflicts escalate combatant and civilian mortality and produce considerable levels of family bereavement. Yet, we know little about the prevalence of bereavement in conflict-affected populations. The violent loss of kin affects individuals across several dimensions, including trauma, mental health, socioeconomic status, and caregiving, especially during childhood and old age. Here, we propose a method to quantify population-level loss of parents and offspring in conflict-affected populations. Our analyses demonstrate that bereavement levels consistently surpass fatality rates in 16 conflict-affected settings. Using demographic projections, we show that these populations will continue to experience considerable levels of bereavement in the coming decades, independent of the future development of the respective conflicts. This quantification underscores bereavement as a profound yet understudied consequence of conflict with potentially far-reaching implications lingering long after the conflict's end.

Collective Trauma and Political Activism: Learning from the Bereaved Families of Shot Down Ukrainian Airline Flight 752

ABSTRACT On January 8, 2020, Ukraine Airline Flight 752 was shot down minutes after taking off from Tehran, Iran, by an Iranian surface-to-air missile. This happened hours after Iran had launched missiles at US targets in Iraq. Amongst the 176 people killed in this tragedy, many of them children, were 85 Iranian-Canadians who had traveled to visit their relatives in Iran. Over the past two years, families of the victims have struggled to find some healing from this trauma amidst political pressures in their fight to get accountability, transparency and justice for their loved ones. This paper is an account of group therapy sessions conducted over two years with these bereaved families, mostly mothers. I provide a detailed account of how relational psychoanalytic principles were utilized to develop a group psychotherapy model for dealing with this novice complex situation where the trauma is as individual as it is collective. For these families, grief and trauma is complicated by the sociopolitical issues surrounding the incident, including lack of transparency, dishonesty, insensitivity and absence of any attempts at reparations or reconciliation by the Iranian government in the aftermath of this tragedy. I examine how these political moments has come to inform psychological challenges of the group, including their emotions, dreams and fantasies. I further elaborate on how these experiences have transformed these individuals into political activists as observed not only in their individual and collective identities but also in their actual participation in the political arena.

Assessing Pediatric Resident Needs in Grief and Bereavement Education

ContextPediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients’ families. ObjectivesThis work aims to assess pediatric residents’ needs and preferences for content included in a curriculum on grief and bereavement. MethodsPediatric residents, at a single institution, completed an electronic survey in Spring 2023 on how they cope with patient deaths and their preferences on content in a proposed grief and bereavement curriculum. ResultsThe survey was emailed to 165 current or recent trainees; 71 surveys were fully completed (43% response rate). Most respondents (63/71, 89%) indicated that a formalized bereavement curriculum for pediatric residents is important. The resources most frequently utilized by residents following a pediatric death included peer support (59/71, 83%), attending a debrief coordinated by residency leadership or the supportive care division (38/71, 54%), and reading a patient's obituary (23/71, 32%).The most desired content areas were institutional services provided to bereaved families (66/71, 93%), unique aspects of healthcare professional grief (58/71, 82%), and experiences of bereaved families hearing from providers after their child's death (56/71, 79%). ConclusionPediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement.

War dead, trauma, and care: the differential reintegration of Vietnamese former combatants

This paper explores how Vietnamese former combatants navigate and contest the infrastructure of care and recognition (or lack thereof) for veterans, their families, and the war dead in postwar Vietnam. It examines efforts by veterans to establish their socio-political standing through acts of claim-making, including spiritual care for the dead. We argue that through these acts of claim-making, veterans forge an alternative modality of veteranhood based not simply on state-recognised war contributions, but also on moral commitments to social justice and care for the fallen and their bereaved families in the postwar period.

Nursing Home Star Ratings and End-Of-Life Care Quality: Lessons Learned From the Veterans Health Administration

ObjectivesMore than 25% of deaths among older adults occur in nursing homes. Thus, assessments of nursing home quality, including the widely used 5-star rating systems, should reflect quality of end-of-life (EOL) care. Our objective was to examine the associations between Veterans Affairs (VA) nursing home star ratings and quality of EOL care as measured by the VA's Bereaved Family Survey (BFS). DesignNational, retrospective observational study. Setting and ParticipantsVA nursing homes, known as Community Living Centers (CLCs). All veterans who died in a CLC from October 2018 to September 2019 whose next of kin completed a BFS. MethodsUsing linked VA data sources, we examined the BFS-Performance Measure (BFS-PM) (ie, the % of BFS respondents who provided an “excellent” overall rating) by the Overall Star Rating and domain star ratings (unannounced survey, staffing, and quality) for the 133 CLCs in our sample. Logistic and linear regression was used to examine the associations between CLC Overall Star Rating and individual-level BFS outcomes. Outcomes included the BFS-PM (primary), the 3 BFS factor scores of Respectful Care and Communication, Emotional and Spiritual Support, and Death Benefits, and 2 symptom management items. ResultsDifferences in the BFS-PM by CLC star rating were small to none and not statistically significant across all star rating domains. The relationship between a higher CLC Overall Star Rating and odds of an “excellent” BFS global rating was not statistically significant. Similarly, no significant associations were observed between a higher CLC Overall Star Rating and scores on the BFS factor scores and symptom management items. Conclusions and ImplicationsOur findings suggest that the current CLC star rating system is not sufficient to assess the quality of EOL care. BFS scores, or a comparative EOL quality of care measure, should be integrated into CLC quality rating systems.

Beyond troubled and untroubled positions – an intersectional analysis of siblings who are bereaved by drug-related deaths’ meaning-making stories about their deceased brothers and sisters

ABSTRACT Purpose This study investigates how social categories work and intersect in siblings bereaved by drug-related deaths’ (DRDs) stories about their relationships to their deceased brother or sister. The sociocultural embedded process of making meaning of the relationship with the deceased individual is essential in adapting to the loss. However, insight into such experiences of siblings bereaved by a DRD is scarce. Previous research has suggested that DRDs may be stigmatized life experiences for bereaved family members, and this paper furthers understanding of the experiences and issues involved in losing a sibling in a stigmatized death. Methods An intersectional analysis is applied to interviews with 14 bereaved siblings. By investigating and displaying how different categories intertwine, various positionings are identified. Findings Categorization of the deceased siblings as “addicts” constructs a troubled position. However, when “addict” intersects with the categories “unique,” “sibling,” and “uncle,” the troubled subject’s position as an “addict” can be concealed. Conclusions Normative conceptions of addiction and DRDs produce troubled subject positions. By intermingling the category of “addict” with other categories, less problematic positions are created. Still, intersections of categories can also construct further complexities of remorse and self-blame for the bereaved siblings.

Supporting Bereaved Family Members: A Qualitative Interview Study on the Experience of Bereavement Counselling by the Bereavement Network Lower Saxony (BNLS) in Germany for Parents Who Have Lost Children or Teenagers.

The "Trauer Netzwerk Niedersachsen" ("Bereavement Network Lower Saxony" (BNLS)) aims at supporting families after the loss of a child or teenager due to various causes. This study aims to describe the experiences of bereaved family members with the BNLS counsellors. 12 semi-structured interviews were conducted with parents who had received or were currently receiving BNLS counselling. The interviews revealed the vital role counselling played aiding individuals cope with their grief. Participants valued the bereavement support, which was often lacking in their personal support networks. Counselling assisted parents in returning to daily life and caring for loved ones. Discussing "death" and "dying" helped participants find peace with their loss. Our findings suggest that bereavement counselling should be considered an essential component of healthcare for family members dealing with the loss of a child. Additionally, there is need for awareness and publicity for both the BNLS and its bereavement counselling services.

Suicidality Among Bereaved Families After the Sewol Ferry Disaster: A Longitudinal Study

This study aimed to investigate the relationship between suicidality and various mental health problems using longitudinal follow-up data in bereaved families after the Sewol ferry disaster. Data from 226 participants gathered over 7 years (2015–2021) were used. Suicidal risk was measured and mental health variables including depression, insomnia, post-traumatic embitterment disorders(PTED), complicated grief were gathered. A series of Generalized Estimating Equation models were developed to identify the factors associated with potential suicide risk among the bereaved family members of the Sewol ferry disaster. Participants with depression, clinically significant PTED, and complicated grief were associated with suicidal ideation, suicide plan, and having suicide preventive factors. Participants with prolonged PTED were also associated with suicide plan and having suicide preventive factors. The probability of having suicide ideation (from the fourth to the seventh year) and suicide preventive factors (in the fifth year) was significantly decreased compared to the first year since the disaster occurred. This study provided evidence by illuminating the long-term prognosis of suicide risk in disaster-affected families and its correlation with mental health factors. It offered a valuable insight that interventions addressing depression, PTED, and complicated grief are necessary in the long term to reduce their suicide risk.

Communication, Training, and Debriefing After Stillbirth in U.S. Hospitals: A National Survey.

Background: Stillbirth is a devastating event for families as well as hospital staff. Hospital practices around internal and external staff communication, debriefing, and training are unknown. Methods: We systematically sampled U.S. hospitals that provide obstetrical care. Staff knowledgeable of bereavement care on labor and delivery were invited to participate in an anonymous survey linked to hospital descriptors. We evaluated stillbirth communication, debriefing, and training for staff. Results: We received 289 usable surveys from 429 eligible staff (67% response). Most (94%) noted hospitals' marked rooms housing bereaved families, but only a third (37%) reported a marker on the paper or electronic medical record. Half of the hospitals had no standard debriefings post-loss, and 38% reported no perinatal loss training for labor and delivery nurses. Conclusions: Hospitals have significant variations and gaps in staff communication, support, and training, which are key aspects of respectful stillbirth care.

Place of care and death preferences among recently bereaved family members: a cross-sectional survey

ObjectivesThe aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate...

가족 사별과 중노년기의 삶의 만족도 및 우울감

This study aims to examine the association of family bereavement with life satisfaction and depressive symptoms among middle-agedand older adults, in terms of (1) experience of family bereavement, (2) experience of different types of family bereavement, and (3) the cumulative number of family losses. We analyzed data from the 1st (2006; N = 9,687; all family losses experienced until 2006) and 8th (2020; N = 5,236; recent family losses experienced in the past four years) waves of the Korean Longitudinal Study of Ageing. First, recent family bereavement was negatively associated with life satisfaction, while family bereavement across the life span was not significant for life satisfaction and depressive symptoms. Second, among losses across the life span, father and spouse deaths were significant for life satisfaction and depressive symptoms; among recent losses, only spousal bereavement was associated with life satisfaction and depressive symptoms. Finally, the cumulative number of family losses across the life span (including father, mother, and spouse) was significant for life satisfaction and depressive symptoms, whereas the cumulative number of recent family losses (including father, mother, siblings, children,and spouse) was not significant. These findings underscore the importance of examining both exposure and cumulative effects of family bereavement.

Concealment and Care in Deathcare During COVID

ABSTRACT: During the worst months of the COVID-19 pandemic, photojournalistic depictions of the havoc wreaked by the virus became ubiquitous. Images of physically distanced funerals and large-scale body disposal populated newsfeeds, but the labor and experiences of those working within these images—people handling bodies and guiding bereaved families—remained largely hidden from public view. Even before the pandemic, visibility and public recognition were complicated matters for the “deathcare” sector, as professionals cautiously constructed and defended the line separating the family-facing frontstage and industry-insider backstage. Our engagement with this sector through photography was motivated by a desire to illuminate the experiences of those working in deathcare during COVID outbreaks and lockdowns in Melbourne, Australia. Reflecting on photography as method in the study of death, we think through the complexities of seeing and unseeing, exposure and concealment in contemporary death rituals. The pandemic exposed certain realities of death and dying to the public but obfuscated others. Further, our ethnographic practice of portraiture revealed concealment to be a key element of the caring labors that deathcare workers perform.

Assessing the risks for stillbirth in São Paulo, Brazil: protocol for a multidisciplinary case–control study – FetRisks

Stillbirth is a fundamental component of childhood mortality, but its causes are still insufficiently understood. This study aims to explore stillbirth risk factors by using a multidisciplinary approach to stimulate...

Navigating social work practice research challenges: collaboration, participant rights and ethics

In this article, we discuss the challenges in engaging with research participants from marginalised communities, including from some minority communities where there are interconnecting issues of poverty, racism, school exclusion, family breakdown and sometimes youth crime. This is aligned with experiences of developing research partnerships with local services in evaluation work. Two research case studies, from evaluation research with child and family social work and the youth justice system, discuss experiences of researching within inner-city areas, navigating researcher–practitioner relationships and maintaining ethical research standards. In both cases, entering the research field presented challenges related to sensitivities and distress experienced by participants. Our case-study discussions demonstrate how the researchers responded to risk and unwitting involvement with young people in conflict, in prison and experiencing family bereavement. Highlighted is the vital importance of local agencies providing accurate information about the families and young people that the researchers are asked to contact in order to ensure that respect and research ethics are upheld and no trauma is caused. Planning and building trust are key to ensuring that time is given for respectful engagement and that agencies are ready for ongoing support and follow-up as needed. The article will explore how these methodological considerations can be taken forward.

DUKUNGAN PASTORAL KONSELING MELALUI MUBAWAKI: MEMBANGUN EMPATI DAN SOLIDARITAS

Local wisdom places more emphasis on the place and locality of the wisdom so that it does not have to be wisdom that has been passed down from generation to generation. Meanwhile, Siau has a variety of local wisdom, both long-standing local wisdom that has been passed down from generation to generation, as well as new or recent local wisdom that has emerged as a result of interactions with other communities and cultures, one of which is mubawaki. Mubawaki is one of the local wisdoms where the people have a very high level of empathy and solidarity from the Siau people in the context of bereaved people, they work together to help the bereaved families, starting from the fathers who make tents and the mothers who help in kitchen and food delivery. The aim of this research is to see how pastoral counseling supports in mubawaki

Performances of Hope and Despair: A Case Study of Organ Donation Between a Palestinian and Israeli Jew Amidst War.

We explore the phenomenon of organ donation between rivals in time of war when a significant gift such as organ donation is given not just to a "stranger" but to a stranger who may be considered an enemy. This is a case study of a unique organ donation event that occurred in Israel during Operation Guardian of the Walls in May 2021. It involved a Palestinian boy killed by a Jewish policeman and a Jewish man killed by Palestinian youths. Both victims, lacking organ donor cards, had their organs donated by their families with the awareness that recipients could come from the "opposing" group. We ask: (1) How do families from rival groups construct meaning in their decision to donate organs? (2) How do they construct meaning in their experience of loss? The findings reveal that bereaved families imbue their actions with political and religious significance, framing the organ donations as a "universal gift" guided by religious commandments to save lives. While these acts initially transcend cultural and national boundaries, a lack of recognition and gratitude afterward can lead to disillusionment, reinforcing "us" versus "them" boundaries. This study underscores the intricate dynamics in organ donations during political conflict and the pivotal role of religious authorities in shaping perceptions and meaning. Moreover, it highlights the potential for organ donations to foster reconciliation and coexistence amidst conflict, provided mutual recognition in cases where compassion and understanding of loss are prioritized.

ICU Family Bereavement: Demonstrating Predictors and a Call to Improve Outcomes.

ICU Family Bereavement: Demonstrating Predictors and a Call to Improve Outcomes.