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Context Globally, people most often die within hospitals. As such, healthcare providers in hospitals are frequently confronted with dying persons and their bereaved relatives. Objectives To provide an overview of the current role hospitals take in providing bereavement care. Furthermore, we want to present an operational definition of bereavement care, the way it is currently implemented, relatives’ satisfaction of receiving these services, and finally barriers and facilitators regarding the provision of bereavement care. Methods An integrative review was conducted by searching four electronic databases, from January 2011 to December 2020, resulting in 47 studies. Different study designs were included and results were reported in accordance with the theoretical framework of Whittemore and Knafl (2005). Results Only four articles defined bereavement care: two as services offered solely post loss and the other two as services offered pre and post loss. Although different bereavement services were delivered the time surrounding the death, the follow-up of bereaved relatives was less routinely offered. Relatives appreciated all bereavement services, which were rather informally and ad-hoc provided to them. Healthcare providers perceived bereavement care as important, but the provision was challenged by numerous factors (such as insufficient education and time). Conclusion Current in-hospital bereavement care can be seen as an act of care that is provided ad-hoc, resulting from the good-will of individual staff members. A tiered or stepped approach based on needs is preferred, as it allocates funds towards individuals-at-risk. Effective partnerships between hospitals and the community can be a useful, sustainable and cost-effective strategy.

Background Respectful care of bereaved parents after stillbirth plays a pivotal role in enabling the grieving process and reducing the traumatic impact of this life-changing event. Unfortunately, professionals and midwives, in particular, are often emotionally unprepared and frequently left alone when dealing with these stressful events. Aim The BLOSSoM (Burnout after perinatal LOSS in Midwifery) study aims to address the levels of professional burnout in Italian midwives and evaluate the psychological impact of bereavement care on professionals. Methods Web-based cross-sectional study, including socio-demographic questionnaire, survey on the knowledge of guidelines for stillbirth management and two psychometric tests: Maslach Burnout Inventory (MBI) and Impact of Event Scale - Revised (IES-R). Findings Of 445 female midwives, mean age 35.1 (SD 9.9), working years 11.2 (SD 10.2), 149 (33.4%) reported specific training on stillbirth and 420 (94.6%) highlighted the need for further training and support. Medium to high levels of burnout (Emotional Exhaustion) were present in 65 midwives (15.9%) with a high prevalence of Reduced Personal Accomplishment (292, 64.2%). ‘Communicating the diagnosis of death’ was considered the hardest task, followed by ‘assisting the meeting with the baby’; 109 midwives (24.5%) reported high IES-R scores (>30), suggesting symptoms of PTSD related to stillbirth events; a good level of knowledge of guidelines favoured Personal Accomplishment (OR 0.3 [0.1 – 0.6]). The number of stillbirths assisted by midwives was not associated with burnout levels. Conclusion Midwives are particularly at risk of developing professional burnout, as early as after five years of work, with a significant association with the psychological impact exerted by stressful events (stillbirth).

Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children’s hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves.

Background Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. Methods An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. Results Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. Conclusions Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.

Background: The mortuary plays an important, under-recognized role in end-of-life care. A ‘ Life-affirming strategy’ was introduced in the mortuary of a university hospital to enhance respect for the deceased and next-of-kin (NOK). Design: NOK who collected bodies in the mortuary of a university hospital participated in a survey. The satisfaction scores, needs and expectations were compared with a similar survey from 2015. Results: The overall experience for NOK improved significantly compared with 2015. The greatest improvement was achieved in ‘mortuary environment’, ‘attitude of mortuary staff’ and ‘body viewing arrangement in the mortuary’. The perceived need for additional psychosocial support was significantly reduced. Conclusions: Results demonstrate success of the life-affirming strategy in enhancing end-of-life care for bereaved families. The person-centered approach modernizes and professionalizes mortuary services, with a positive impact on the deceased, NOK, mortuary staff, hospital administration and wider community.

Ireland has had a reliance on voluntary groups to provide peer-to-peer bereavement support. The aim of this study was to explore volunteers’, within these voluntary groups, experiences of supporting parents following a fatal fetal anomaly diagnosis. Purposive sampling was used to recruit volunteers ( n = 17) and face-to-face interviews undertaken. NVivo12 was utilized to assist in the thematic analysis of the data. Five themes; “motivation for altruistic acts,” “being challenged,” “value of education and training,” “supporting volunteers to support others,” and “it is not a sprint, it is a marathon” were identified. Volunteers felt comfortable in their peer-support role but found the lack of knowledge regarding newly implemented termination of pregnancy (TOP) services challenging. The importance of education/training was identified, emphasizing the need for collaboration with health care professionals and other voluntary organizations for support. The findings illustrate the need for collaborative working between health care professionals and volunteers to assist them in supporting bereaved parents.

While recent medical advances have led to cure, remission, or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses, and frequently are associated with significant symptom and quality of life burden for patients and families. Patients with hematological cancer are referred to palliative care (PC) services less often than those with solid tumors, despite higher inpatient mortality and shorter interval between first consultation and death. The complexity of individual prognostication, ongoing therapeutic goals of cure, the technical nature and complications of treatment, the intensity of medical care even when approaching end of life, and the speed of change to a terminal event all pose difficulties and hinder referral. A modified palliative care model is an unmet need in hemato-oncology, where PC is introduced early from the diagnosis of hematological malignancy, provided alongside care of curative or life-prolonging intent, and subsequently leads to death and bereavement care or cure and survivorship care depending on disease course. From current evidence, the historical prioritization of cancer care at the center of palliative medicine did not guarantee that those diagnosed with a hematological malignancy were assured of referral, timely or otherwise. Hopefully, this article can be a catalyst for debate that will foster a new direction in integration of clinical service and research, and subspecialty development at the interface of hemato-oncology and palliative care.

The death of a child is felt by extended family, friends, and community members. Most bereavement care research focuses on programs for parents. Little is known about the efficacy of support progra...

The purpose of this study was to investigate the needs of bereaved parents in Greece (N = 56) regarding the provision of hospital based bereavement services after the death of their child to cancer...

Bereavement support is recommended as part of family-centered care in critical care settings. This literature review describes the impact on a family after the death of a loved one in the intensive care unit (ICU) and how bereavement services could help. Potential components of a bereavement program are explored, including tangible contents (eg, bereavement brochure, sympathy card, memory making), family preferences, and optimal timing. A bereavement risk assessment tool is also described to more optimally meet families' needs. Finally, the goal of this review is to guide ICUs in planning and developing of a successful and sustainable bereavement program.

There is a gap in the use of evidence in bereavement care. Implementation science is a field focused on moving evidence into practice and therefore may help close the gap. Implementation science advances the design, relevance, and dissemination of research and the adoption, implementation, and maintenance of evidence-based practices. We provide an overview of implementation science, describe five implementation frameworks (Knowledge to Action; Behavior Change Wheel; Exploration Preparation Implementation Sustainment; Interactive Systems Framework; and Reach, Adoption, Implementation, Maintenance), and illustrate their application in bereavement care. These advancements will promote high-quality bereavement care that improves the lives of bereaved people.

Background: Low and middle income countries have the highest rates of stillbirths in the world. In Jordan, stillbirth and how it impacts on mothers who experience it is under-researched. The stories of mothers who have had a stillbirth need to be told and the silence associated with stillbirth needs to be broken. The aim of this study is to explore and understand the meanings attributed by mothers’ to their experience of stillbirth in Jordan. Methods: The study will employ phenomenological qualitative research design. Semi-structured interview will be conducted with the mothers’ who will be recruited from three governmental hospitals in the north, middle and south of Jordan. Data will be transcribed, managed and analysed using interpretative, phenomenological analysis. The Jordanian Ministry of Health and Jordan University Ethics Committee approved the study on Nov. 2019, FEB 2020, respectively. Discussion: The findings of this study will make an original contribution to our knowledge about how stillbirth is experienced by mothers in Jordan. This finding will be useful to health care providers to improve the quality of health care provided to those mothers by adopting individualized and holistic care approach to meet the needs of each mother. Moreover, it will inform public health authorities and policy makers regarding the need for more awareness of stillbirth and a better bereavement care strategy for mothers in hospitals.

The care a family receives at the time of perinatal loss can have a significant and lasting impact, hence it is important for healthcare providers to offer quality care that will meet the family's needs. Our hospital embarked on a journey to develop a perinatal bereavement programme that would give compassionate and excellent care to all families who experienced perinatal loss at any time during their pregnancy. Components of our bereavement programme include leadership, administrative and financial support, communication, well-educated and supported staff, and a process for individualised care. A perinatal bereavement programme can help institutions, large or small, to provide quality care for bereaved families and help them through this difficult experience. The purpose of this article is to discuss hospital-wide bereavement care, both on a large scale, detailing the specifics of programme development, and on a smaller scale, individualised care for families.

OBJECTIVE: To quantify parents' experiences of respectful care around stillbirth globally. DESIGN: Multi-country, online, cross-sectional survey. SETTING AND POPULATION: Self-identified bereaved parents (n = 3769) of stillborn babies from 44 high- and middle-income countries. METHODS: Parents' perspectives of seven aspects of care quality, factors associated with respectful care and seven bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country-income groups using multivariable logistic regression. MAIN OUTCOME MEASURES: Self-reported experience of care around the time of stillbirth. RESULTS: A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation less than 30 weeks and primiparity were associated with disrespect. Reported respectful care was lower in middle-income countries than in high-income countries (adjusted odds ratio 0.35, 95% CI 0.29-0.42, p

The loss of a baby to stillbirth is a traumatic experience and can lead to secondary losses, such as the loss of social relationships. In Nigeria, stillbirths are a common public health problem. However, limited attention has been given to the social ramifications of stillbirths. This study describes the social networks of women who have experienced a stillbirth and the factors influencing their social networks. Interviews and social network diagrams were used to collect data from 20 women about their social networks before and after stillbirth. Findings suggest that the experience of shame, unmet expectation of support, and a lack of trust led to relationship changes after stillbirth. Most participants met bereavement needs with their existing social networks before stillbirth, but many participants also experienced relationship losses (even among family networks). Information from social network analysis can reveal the risks and strengths inherent in social networks, which can be helpful for the provision of tailored/personalized bereavement care.

Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% ( n = 87) and a follow-up response-rate of 79% ( n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.

Objective: To determine the prevalence of prolonged grief disorder (PGD), and self-reported resilience among bereaved caregivers within a palliative care program that serves a large region of the Lower Mainland in British Columbia, Canada. Additionally, to discern effective bereavement supports utilized by caregivers following the loss of a loved one. Methods: A descriptive study using both quantitative and qualitative methods. Sociodemographic information (n = 427) was collected from bereaved caregivers 3 months after their loss. PGD and resilience were prospectively assessed 12 months post-loss using the prolonged grief scale (PG-13, n = 212) and brief resilience scale (BRS, n = 215), respectively. A qualitative thematic analysis was conducted on responses to the open-ended question on what bereavement services or activities caregivers found helpful in coping with the loss of a loved one. Results: Of the 212 individuals that completed the PG-13, 4.7% met diagnostic criteria for PGD, 27.4% were moderate risk, and 67.9% were low risk for PGD. Of the 215 caregivers that completed the BRS, 48.4% had low resilience, 51.6% had normal resilience, and 0% had high resilience. The major themes of formal supports, informal supports, and self-care activities emerged from caregiver comments regarding effective bereavement supports. Conclusion: The incidence of PGD in caregivers is low within the Fraser Health Palliative Care program. Bereaved caregivers mainly utilize existing social networks and activities to cope with their loss. Focusing on a community-based approach to supports may improve bereavement experiences and lower rates of prolonged grief.

Stillbirth or neonatal death is one of the most traumatic and distressing life experiences with negative psychosocial effects. Perinatal grief is natural and understandable, and, if not recognized and well supported, may lead to long-term harmful effects. Harm may also be caused to the other surviving siblings, families, and next generation. This can be helped by effective bereavement care. Bereavement care is an area of enormous needs, relatively untraveled road. Though the loss cannot be undone, but a negative impact can be minimized by compassionate supportive care. This chapter will focus on the need of a trained team for effective bereavement care. Principles of evidence-based best practices from the literature will be reviewed and translated into key practice implications. An emphasis is laid on a structured training involving the whole team. We hope this will help in day-to-day situation handling so as to prevent the harm associated with unaddressed grief. Areas of gap with the further need of research are highlighted.

Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.Thematic analysis of incidental data from a larger grounded theory study.Four Australian PICUs.Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.None.Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, de-medicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.

BACKGROUND A child's death affects not only family members but also the health-care professionals involved in patient care. The education system for bereavement care in Japan, however, is not set up in a systematic way, and the care provided is based on the individual experience of the health-care professional. The aim of this study was to investigate pediatrician awareness of and actual circumstances involved in bereavement care in Japan. METHODS A qualitative descriptive study was conducted at four facilities in Japan. Data collected using semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis. RESULTS Pediatrician recognition of the elements of bereavement care was categorized as follows: (i) developing relationships with families before a child's death is important in bereavement care; (ii) after the child dies, family involvement is left to the doctor's discretion; (iii) coping with a child's death myself through past experience is essential; (iv) doctors involved in a child's death also experience mental burden; and (v) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (i) attention must be given to the emotions of the families who lost a child; and (ii) doctor involvement with bereaved families depends on doctor awareness and expertise. CONCLUSION Japanese pediatricians provided bereavement care to families who lost their children in a non-systematic manner. This is necessitates improvement of the self-care of health-care professionals with regard to grief by improving bereavement care-related education. Additionally, health-care professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care to families who lose a child.

Nurses have voiced their lack of comfort during perinatal loss and communicating with families during this period. A mid-western organization provided bereavement education to its perinatal nurses, which included a didactic session, followed by two perinatal loss scenarios with standardized patients, and debriefing. Participant's knowledge (p = 0.000) and comfort (p = 0.000) levels significantly improved after the education session. Observations during the standardized patient scenarios, demonstrated that the majority of nurses used appropriate communication techniques with the bereaved mother that was reviewed throughout the education session. An education session that includes standardized patients acting out a perinatal loss may be an effective approach in promoting perinatal nurses comfort level in providing effective bereavement care and communication.

BACKGROUND Health professionals' bereavement practices, including funeral attendance, have attracted relatively little attention from researchers. There may be a number of motivations and perceived benefits for health professionals to attend patient funerals. There are no published data comparing different groups of health professionals' perceptions of and practices in attending the funerals of their patients. OBJECTIVE To understand the attitudes and practices of health professionals toward attendance at patient funerals. DESIGN Cross-sectional nationwide online survey of attitudes and practices toward attendance at patient funerals based upon data from interviews with health professionals. PARTICIPANTS Australian health practitioners from medicine, nursing, psychology, social work, and other allied health professions (n = 1098). RESULTS Attendance at patient funerals was predicted by age, telling colleagues about own funeral attendance practices, having discussions with colleagues about funeral attendance, having long relationships with patients, and having a majority of patients at the end of life. Nonattendance was predicted by believing that if they cannot attend all funerals, they prefer not to attend any, feeling that colleagues disapprove of funeral attendance, believing that attending funerals is crossing the line between the personal and the professional, and being a psychologist. CONCLUSIONS Our findings emphasize the need for more open discussions and reflection among individuals and groups of health practitioners regarding attendance at funerals. Understanding the motivations of physicians, nurses, social workers, and other allied health practitioners to attend or not attend patient funerals is an important first step in working toward policies, protocols, and guidelines to support best practice.

Clinicians face personal barriers that impede the provision of bereavement care and require education in hospice care. This study aims to investigate the effects of an educational bereavement program on emotional and cognitive barriers, self-efficacy, and professional quality of life among clinicians in hospice care. A pretest–posttest design was implemented. A total of 194 clinicians with working experience in hospice care were recruited. The participants underwent a 12-h workshop. The content included lectures, role-play, and group discussion. Emotional and cognitive barriers, self-efficacy, and professional quality of life were measured before and after the program and at 3-month follow-up. After the educational program, negative emotional barriers (F (2, 386) = 17.07, p

ObjectivesEnd-of-life and bereavement care support services differ in critical care and inpatient hospice settings. There are limited population-level data comparing deaths in these two locations. We aimed to compare the characteristics of people who die in critical care units and in hospices, identify factors associated with place of death and report 12-year trends in Scotland.MethodsWe undertook a cohort study of decedents aged ≥16 years in Scotland (2005–2017). Location of death was identified from linkage to the Scottish Intensive Care Society Audit Group database and National Records of Scotland Death Records. We developed a multinomial logistic regression model to identify factors independently associated with location of death.ResultsThere were 710 829 deaths in Scotland, of which 36 316 (5.1%) occurred in critical care units and 42 988 (6.1%) in hospices. As a proportion of acute hospital deaths, critical care deaths increased from 8.0% to 11.2%. Approximately one in eight deaths in those aged under 40 years occurred in critical care. Factors independently associated with hospice death included living in less deprived areas, cancer as the cause of death and presence of comorbidities. In contrast, liver disease and accidents as the cause of death and absence of comorbidities were associated with death in critical care.ConclusionsSimilar proportions of deaths in Scotland occur in critical care units and hospices. Given the younger age profile and unexpected nature of deaths occurring in critical care units, there is a need for a specific focus on end-of-life and bereavement support services in critical care units.

As the world navigates the ongoing challenges of the COVID-19 pandemic, bereavement care has come to the fore with renewed significance. The scale of the impact on bereavement is now emerging: for every COVID-19 death it is estimated that up to nine people are affected by bereavement,1 and those bereaved are likely to display higher levels of prolonged grief symptoms.2 For all people bereaved during this period, whether from COVID-19, other conditions, or deaths prior to the pandemic, there are multiple risk factors for complex grieving: an increase in sudden and unexpected deaths; restrictions on visiting family members at the end of life; disruption to mourning practices and funerals; and reduced access to social support networks.3,4 Healthcare professionals, including GPs and other primary care practitioners, have also faced multiple challenges during this period in supporting bereaved people; adapting to remote technology, managing the increased complexities of bereaved relatives’ grief, and dealing with their own professional and personal experiences of bereavement.4 General practice has a key role in addressing this ‘tsunami of grief’ .4 Comprehensive bereavement care to alleviate the impact on the many people who have been bereaved is vital: bereavement is an important cause of mortality and morbidity, impacting on physical and mental health, and leading to increased use of health services.5 It is timely to address the role of primary care in bereavement care, and to ask how general practice can better support bereaved people, and how practitioners can themselves be better supported in caring for bereaved people during and after the pandemic. Over 20 years ago, Richard …

The number of patients developing kidney failure is increasing globally including in India. Dialysis is not the most optimal treatment for a number of these patients such as the elderly, the frail and those with multiple comorbidities and limited life expectancy. Moreover, some patients may prefer not to undergo dialysis. Supportive care focused on symptom management and improving the quality of life is a legitimate treatment option in these situations. It can be delivered alongside dialysis or to patients who choose to receive only conservative care and is being increasingly recognised as an integral component of holistic kidney care. Kidney care provider ecosystem needs to become aware of the principles of the principles of shared decision making, advanced care planning, understanding how to provide emotional, spiritual and information support to the patient and their families and when needed bereavement care. Supportive care facilities are underdeveloped in most low resource settings including in India. There is a need to develop capacity in this area so that our patients can derive the benefit of the full range of treatment options for kidney disease.

Background: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood. Aim: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions. Design: A systematic review without restriction on study design was conducted. Data sources: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines. Results: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6–18 who lost a sibling to cancer 6–12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families. Conclusion: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.

Background Stillbirth is a major global concern. However, most research has been conducted in high-income countries. Understanding of the experience and management of stillbirth in low-middle income countries is needed. Objective This qualitative study explored health professionals’ experiences of providing stillbirth care in the Lao People’s Democratic Republic, a lower-middle-income country in South-East Asia. Methods In-depth interviews were conducted with 33 health professionals (doctors, midwives and nurses) and thematic analysis was undertaken. Results All participants acknowledged stillbirth as a concern, but its incidence and causes were largely undocumented and unknown. A lack of training in managing stillbirth left health professionals often ill-equipped to support mothers and provide responsive care. Social stigma surrounds stillbirth, meaning mothers found limited support or opportunities to openly express their grief. Conclusions Better awareness of stillbirth causes could promote more positive experiences for healthcare providers and parents and more responsive healthcare. This requires improved training for healthcare professionals and awareness raising in the wider community.

Bereavement care is considered an integral component of quality end-of-life care endorsed by the palliative care movement. However, few hospitals and health care institutions offer universal bereavement care to all families of patients who die. The current coronavirus disease 2019 pandemic has highlighted this gap and created a sense of urgency, from a public health perspective, for institutions to provide support to bereaved family members. In this article, drawing on the palliative care and bereavement literature, we offer suggestions about how to incorporate palliative care tools and psychological strategies into bereavement care for families during this pandemic.

Background Rapid changes to how maternity health care is delivered has occurred in many countries across the globe in response to the COVID-19 pandemic. Maternity care provisions have been challenged attempting to balance the needs and safety of pregnant women and their care providers. Women experiencing a pregnancy after loss (PAL) during these times face particularly difficult circumstances. Aim In this paper we highlight the situation in three high income countries (Australia, Ireland and USA) and point to the need to remember the unique and challenging circumstances of these PAL families. We suggest new practices may be deviating from established evidence-based guidelines and outline the potential ramifications of these changes. Findings Recommendations for health care providers are suggested to bridge the gap between the necessary safety requirements due to the pandemic, the role of the health care provider, and the needs of families experiencing a pregnancy after loss. Discussion Changes to practices i.e. limiting the number of antenatal appointments and access to a support person may have detrimental effects on both mother, baby, and their family. However, new guidelines in maternity care practices developed to account for the pandemic have not necessarily considered women experiencing pregnancy after loss. Conclusion Bereaved mothers and their families experiencing a pregnancy after loss should continue to be supported during the COVID-19 pandemic to limit unintended consequences.

Objective This study aimed to explore bereaved parents’ and healthcare providers experiences of care after stillbirth. Study design Qualitative in-depth interviews with 55 women, men, female elders, healthcare providers and key informants in Kabul province, Afghanistan between October and November 2017. Results Inadequate and insensitive communication and practices by healthcare providers, including avoiding or delaying disclosing the stillbirth were recurring concerns. There was a disconnect between parents’ desires and healthcare provider’s perceptions. The absence of shared decision-making on seeing and holding the baby and memory-making, manifested as profound regret. Health providers’ reported hospitals were not equipped to separate women who had a stillbirth and acknowledged that psychological support would be beneficial. However, the absence of trained personnel and resource constraints prevented provision of such support. Conclusion Findings can inform future provision of perinatal bereavement care. Given resource constraints, communication training can be considered with longer term goals to develop context-appropriate bereavement care guidelines.

OBJECTIVE: To explore the healthcare experiences of parents whose baby died either before, during or shortly after birth between 20+0 and 23+6 weeks of gestation in order to identify practical ways to improve healthcare provision. DESIGN: Qualitative interview study. SETTING: England through two parent support organisations and four NHS Trusts. SAMPLE: A purposive sample of parents. METHODS: Thematic analysis of semi-structured in-depth narrative interviews. MAIN OUTCOME MEASURES: Parents' healthcare experiences. RESULTS: The key overarching theme to emerge from interviews with 38 parents was the importance of the terminology used to refer to the death of their baby. Parents who were told they were 'losing a baby' rather than 'having a miscarriage' were more prepared for the realities of labour, the birth experience and for making decisions around seeing and holding their baby. Appropriate terminology validated their loss, and impacted on parents' health and wellbeing immediately following bereavement and in the longer term. CONCLUSION: For parents experiencing the death of their baby at the margins between miscarriage, stillbirth and neonatal death, ensuring the use of appropriate terminology that reflects parents' preferences is vital. This helps to validate their loss and prepare them for the experiences of labour and birth. Reflecting parents' language preferences combined with compassionate bereavement care is likely to have a positive impact on parents' experiences and improve longer-term outcomes. TWEETABLE ABSTRACT: Describing baby loss shortly before 24 weeks of gestation as a 'miscarriage' does not prepare parents for labour and birth, seeing their baby and making memories.

The COVID-19 pandemic is causing deaths with forced separations that deny final goodbyes and traditional mourning rituals. These conditions threaten survivors' mental health, leaving them vulnerable to enduring psychological distress. This article describes resources for clinicians to use when circumstances make it difficult to provide ideal bereavement care.

Background: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day. Method: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group. Results: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day. Conclusion: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.

Bereavement care is best conceptualized as a preventive model of care. It is an integral component of palliative care where support for the family begins at the time of diagnosis and continues beyond the death of the patient. Even though grief is a normal response to loss, the death of a loved one is believed to be the most powerful stressor in everyday life with the potential to cause great distress in all those closely associated with the deceased. In neuro-oncology, where patients often face limited prognoses, knowledge about approaches to bereavement support is particularly important. Despite this, research into the experience of bereaved caregivers is limited. As such, an opportunity exists to identify ways to help family caregivers not only cope with the death of their loved one but also to help families prepare for the death ahead of time. In this article, we offer guidelines about how best to support family caregivers before and after the death of the patient, drawing on the palliative care and bereavement literature.

OBJECTIVE: To develop global consensus on a set of evidence-based core principles for bereavement care after stillbirth.METHODS: A modified policy-Delphi methodology was used to consult international stakeholders and healthcare workers with experience in stillbirth between September 2017 and October 2018 Five sequential rounds involved two expert stakeholder meetings and three internet-based surveys, including a global internet-based survey targeted at healthcare workers in a wide range of settings.RESULTS: Initially, 23 expert stakeholders considered 43 evidence-based themes derived from systematic reviews, identifying 10 core principles. The global survey received 236 responses from participants in 26 countries, after which nine principles met a priori criteria for inclusion. The final stakeholder meeting and internet-based survey of all participants confirmed consensus on eight core principles. Highest quality bereavement care should be enabled through training of healthcare staff to reduce stigma and establish respectful care, including acknowledgement and support for grief responses, and provision for physical and psychologic needs. Women and families should be supported to make informed choices, including those concerning their future reproductive health.CONCLUSION: Consensus was established for eight principles for stillbirth bereavement care. Further work should explore implementation and involve the voices of women and families globally.

A child’s life begins at conception and from the moment of realisation that they are pregnant, the parental journey begins. Most routine antenatal care programmes include an offer of screening for foetal abnormalities, which may be screening from biological sampling or from ultrasound imaging or a combination. For some parents, the identification of a potentially life-limiting or life-threatening condition can present extremely challenging decision-making about continuing with the pregnancy or considering termination.

Stillbirth is a tragedy that can leave parents feeling powerless and vulnerable. Respectful and supportive bereavement care is essential to reducing adverse psychosocial impact. Initiatives of the Australian Centre of Research Excellence in Stillbirth are designed to improve care after stillbirth. At their heart are the voices of perinatally bereaved parents and support organisations and shared decision making between parents and health care providers. Priorities in future perinatal bereavement care research include ensuring appropriate care for population groups who experience higher rates of stillbirth and addressing implementation challenges to best practice in respectful and supportive bereavement care within our health systems.

espanolObjetivo: Favorecer que cada persona elabore su duelo de forma natural, prevenir factores de riesgo e identificar a los deudos que necesiten una atencion especifica. Metodo: Estudio descriptivo. Doscientas ocho familias fueron atendidas entre el 11 de marzo y el 20 de mayo de 2020 por duelo por la COVID-19, de acuerdo con un protocolo establecido. Resultados: La edad media de los fallecidos fue de 76 anos. El 58 % eran hombres. Los familiares atendidos fueron hijo/a (54 %), conyuge o pareja (20 %), hermano/a (2 %). En relacion con el lugar de fallecimiento, el 41 % en plantas de hospitalizacion, el 27 % en Urgencias, el 22 % en la planta de cuidados paliativos y el 10 % en UCI. El tipo de atencion fue en el 53 % de los casos telefonica, en el 16 % presencial, en el 12 % telefonica y presencial y en el 3 % a traves de videollamada. En un 63 % de las veces se realizo apoyo, asesoramiento puntual o atencion especifica mientras que en el 37 % se ofrecio apoyo y disponibilidad. En lo referente “despedida final”, el 49 % de los familiares pudieron despedirse, el 31 % no pudo. El tipo de duelo de los familiares atendidos fue inicialmente normal en el 71 %, mientras que un 16 % fue clasificado como de riesgo. Conclusiones: La informacion y comunicacion efectiva con los familiares afectados, la formacion en la muerte y el duelo de los profesionales implicados y la disponibilidad de atencion psicologica se consideran de gran importancia en una situacion COVID-19. La experiencia muestra que la “Atencion al duelo” debe estar a disposicion de la poblacion general afectada. Una buena organizacion y planificacion ha de incorporar protocolos de actuacion y seguimiento que incluyan una adecuada valoracion y atencion en los diferentes niveles desde el apoyo, la prevencion y la deteccion precoz de posibles complicaciones en el duelo, y si es necesario la intervencion especializada. EnglishObjective: To allow each individual to undergo bereavement in a natural way, to prevent risk factors, and to identify bereaved people who need specific attention. Method: A descriptive study. Two hundred and eight families were attended to between March 11 and May 20, 2020 for Covid-19 according to an established protocol. Results: Average age of the deceased relatives was 76 years. Fifty-eight percent were men. The family members who were cared for included: son or daughter (54 %), spouse or partner (20 %), brother or sister (2 %). Regarding the place of death, 41 % were in hospitalization wards, 27 % in the emergency room, 22 % in the palliative care ward, and 10 % in the ICU. The method of care was in 53 % of cases over the telephone, in 16 % in person, and in 12 % both over the telephone and in person; in 3 % of cases it was by video call. In 63 % of cases, support, specific advice or care was provided, whereas in 37 % support and availability were offered. In terms of “final goodbye”, 49 % of all family members were able to say goodbye, while 31 % were unable to do so. The type of grief observed in the family members attended to was initially considered to be normal for 71 % of cases, whereas 16 % were classified as at risk. Discussion: Effective information to and communication with affected relatives; that involved professionals be trained in dealing with death and grief so as not to cause harm, as well as in palliative care; and availability of psychological care are deemed of great importance in a COVID-19 scenario. Experience shows that “bereavement care” should be available to the general affected population. Proper organization and planning must incorporate action and follow-up protocols that include adequate assessment and care at different levels, from support, prevention and early detection of possible complications of bereavement to specialist intervention when necessary.

Objectives:A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG).Methods:De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed.Results:Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral.Discussion:The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Background: An in-hospital death is a profound experience for those left behind and has been associated with family members’ psychological morbidity. Supporting bereaved family members is an essential part of end-of-life care and includes attentive presence, information-giving, and emotional and practical support. The actual adoption of hospital-based bereavement care, however, remains little understood. Aim: To investigate hospital-based bereavement care provision and associated barriers. Design: Cross-sectional survey using an online questionnaire. Setting/participants: Health professionals ( n = 196) from two University-affiliated acute and psychiatric hospitals in Switzerland. Results: The most frequent bereavement services (⩾40%) were viewing the deceased, giving information on available support, and making referrals; the most often named barriers were lack of time and organizational support. Acute care health professionals faced statistically significant more structural barriers (55.1% vs 21.4% lack of time, 47.8% vs 25.9% lack of organizational support) and felt insufficiently trained (38.4% vs 20.7%) compared to mental health professionals ( p ⩽ 0.05). Nurses provided more immediate services compared to physicians, such as viewing the deceased (71.3% vs 49.0%) and sending sympathy cards (37.4% vs 16.3%) ( p ⩽ 0.01). In contrast, physicians screened more often for complex bereavement disorders (10.2% vs 2.6%) and appraised bereavement care as beyond their role (26.5% vs 7.8%) ( p ⩽ 0.05). Conclusion: The study indicates that many barriers to bereavement care exist in hospitals. More research is required to better understand enabling and limiting factors to bereavement care provision. A guideline-driven approach to hospital-based bereavement care that defines best practice and required organizational support seems necessary to ensure needs-based bereavement care.

The aim of this study was to explore the current practices of primary care physicians (PCPs) in providing bereavement care to elderly patients, with implications for medical education. A total of 63 PCPs answered a brief online survey about their typical practices, barriers, comfort level with bereavement, and confidence in their ability to diagnose prolonged grief disorder (PGD). They were recruited through an online newsletter and contacts of one of the authors. The results found that two-thirds of the PCPs do not routinely screen their elderly patients for recent losses, nor do they refer to mental health clinicians when loss is identified. Barriers included not learning of the deaths in patients' lives and lack of time during clinic visits. Those PCPs who had experienced their own losses were significantly more comfortable in speaking to patients about recent losses and more confident in their ability to diagnose PGD. We recommend bereavement education be incorporated into the medical school curriculum from the outset, utilizing the psychological principle of graded exposure to bereaved individuals.

ObjectivesDespite the recommendation that patients with cardiovascular disease (CVD) receive bereavement care, few studies have examined the psychological disturbances in bereaved caregivers. We examined the prevalence and determinants of depression and complicated grief among bereaved caregivers of patients with CVD.MethodsWe conducted a cross-sectional survey using a self-administered questionnaire for bereaved caregivers of patients with CVD who had died in the cardiology departments of nine Japanese tertiary care centres. We assessed caregiver depression and grief using the Patient Health Questionnaire-9 (PHQ-9) and Brief Grief Questionnaire (BGQ), respectively. The questionnaire also covered caregivers’ perspectives toward end-of-life care and the quality of the deceased patient’s death.ResultsA total of 269 bereaved caregivers (mean age: 66 (57–73) years; 37.5% male) of patients with CVD were enrolled. Overall, 13.4% of the bereaved caregivers had depression (PHQ-9 ≥10) and 14.1% had complicated grief (BGQ ≥8). Depression and complicated grief’s determinants were similar (ie, spousal relationship, unpreparedness for the death, financial and decision-making burden and poor communication among medical staff). Patients and caregivers’ positive attitudes toward life-prolonging treatment were associated with complicated grief. Notably, in caregivers with complicated grief, there was less discussion with physicians about end-of-life care. Caregivers who felt that the patients did not receive sufficient treatment suffered more frequently from depression and complicated grief.ConclusionsApproximately 15% of bereaved caregivers of patients with CVD suffered from depression and complicated grief. Cardiologists should pay particular attention to caregivers with high-risk factors to identify those likely to develop depression or complicated grief.

Most childhood deaths in the United States occur in hospitals and the majority of these in intensive care settings. Pediatric intensive care unit (PICU) clinicians must anticipate, identify and effectively treat the dying child’s pain and suffering, as well as support the psychosocial and spiritual needs of the child and their family. Such timely therapy and support may facilitate comfort and a peaceful death, and also help family members adjust to their loss. Effective communication that is candid and compassionate is paramount to successful end of life (EOL) care, as is creating an environment that encourages parent participation in their child’s care and fosters meaningful family interactions. Despite these supportive efforts, parents whose children die often experience reduced mental and physical health during bereavement. Finally, many ethical issues surround EOL care in the PICU, and as such, several professional societies have published recommendations and policies addressing these issues. PICU clinicians should stay current on these recommendations and policies and maintain a working understanding of their implications.

Bereavement support is a core tenet of palliative care that may prove difficult for clinicians as it is time-consuming, emotionally charged, and not emphasized in pediatrics training. This project is intended to describe the opinions, knowledge, and practice of bereavement care among pediatric oncologists to identify gaps in clinical care.An internet-based survey instrument was pilot tested, refined, and distributed to pediatric oncologists in the United States. Statistical analysis was performed using SAS 9.2.Electronic surveys were distributed to 2,061 pediatric oncologists and 522 surveys (25%) were fully completed. Participants were asked how likely they are to engage in particular bereavement activities (phone calls, condolence cards, memorial services, family meetings, or referrals for counseling) following the death of a pediatric cancer patient. Eighty-two percent of participants, at least, sometimes engage in at least one of these activities. Being female, an attending physician, and increased time in clinical practice were predictive of active participation in bereavement care. Nearly all participants (96%) believe that bereavement care is part of good clinical care, while 8% indicate that bereavement support is not their responsibility. Lack of time and resources were the biggest barriers to providing bereavement support.The majority of pediatric oncologists engage in clinical practices to support bereaved families. Lack of time and physical resources pose significant barriers to clinician's efforts. Additional supports should be explored to increase pediatric oncology physician uptake of bereavement care practices.