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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.

People bereaved through road traffic accidents (RTAs) are at risk for severe and disabling grief (i.e., pathological grief). Knowledge about needs and use of bereavement care, including psychotherapy, pharmacotherapy, and support groups, is limited. This study charted (correlates of) the needs and use of bereavement care in RTA bereaved people. Furthermore, although online grief treatment seems effective, it is unknown whether it is perceived as acceptable. Accordingly, we examined the acceptability of online treatment. Dutch RTA bereaved adults (N = 273) completed self‐report measures about needs and use of bereavement care, acceptability of online grief treatment, and pathological grief. Regression analyses were used to identify correlates of care needs and use and acceptability of online treatment. The majority (63%) had received help from psychotherapy, pharmacotherapy, and/or support groups. One in five participants had not used bereavement care services, despite reporting elevated pathological grief levels and/or expressing a need for care, pointing to a treatment gap. Use of psychological support before the loss was the strongest predictor of bereavement care needs and use following the loss. A minority (35%) reported being inclined to use online grief treatment if in need of support. More openness towards online services was related to greater acceptability of online treatment. In conclusion, 20% of RTA bereaved people with pathological grief or care needs had not received care. This treatment gap may be reduced by improving accessibility of online treatments. However, as only 35% was open to using online treatments, increasing the acceptability of (online) treatments appears important.

Objective:The aim of the proposed scoping review is to explore and summarize the range of available evidence for bereavement care, specifically in relation to labor and birthing experiences of a stillborn baby.Introduction:Clinical practice guidelines for bereavement care following pregnancy loss have been developed. However, there remains a lack of evidence to guide recommendations for providing appropriate care to parents at the time of diagnosis, and during the labor and birth of a stillborn baby.Inclusion criteria:The proposed review will consider studies, reports, guidelines, evidence syntheses, and other relevant literature that explore the experiences, needs, and care provided to bereaved parents during labor and birth of a stillborn baby.Methods:The search strategy for the proposed scoping review will aim to locate both published and unpublished documents, using a three-step search strategy. An initial search will be conducted using the databases MEDLINE and CINAHL to identify relevant articles; a second search will be conducted across all included databases, incorporating identified keywords and index terms; and finally the reference lists of included studies will be screened for additional sources. Google Scholar and Web of Science will be searched for relevant gray literature. The search will restrict documents from 2000 to present to maintain clinical relevancy. Only studies published in English will be included. Results of the search will be exported into a template, where data will be categorized using five key domains (communication, recognition of parenthood, effective support, shared decision-making, and organizational response) summarized into positive, negative, or neutral outcomes, and further refined into common issues across these domains.Scoping review registration:Open Science Framework "birthing in grief: a scoping review" https://osf.io/xw9md.

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.

Purpose Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss. Design and methods We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept. Results “Creating evidence” emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit. Conclusions Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement. Practice implications Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.

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.

Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization.

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.

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.

Bereavement support and conducting viewings for grieving family members are commonplace activities for social workers in the acute hospital setting, however the risks that COVID-19 has brought to the social work role in bereavement care has necessitated the exploration of creative alternatives. Social workers are acutely aware of the complicating factors when bereavement support is inadequately provided, let alone absent, and with the aid of technology and both individual advocacy, social workers have been able to continue to focus on the needs of the most vulnerable in the hospital system. By drawing on reflective journaling and verbal reflective discussions amongst the authors, this article discusses bereavement support and the facilitation of viewings as clinical areas in which hospital social work has been observed adapting practice creatively throughout the pandemic.

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.

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

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 …

Colin Murray Parkes with Cruse patron Her Majesty the Queen at St James Palace, celebrating Cruse’s 60th anniversaryI was honoured to be asked to write something at this time, as Colin steps down a...

A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most fr...

This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child's healthy future, (d) what gave me strength, and (e) fulfilling my child's wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.

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.

BackgroundBereavement can have significant impacts on physical and mental health, and a minority of people experience complicated and prolonged grief responses. Primary care is ideally situated to offer bereavement care, yet UK provision remains variable and practitioners feel uncertain how best to support bereaved patients.AimTo identify what works, how, and for whom, in the management of complicated grief (CG) in primary care.Design & settingA review of evidence on the management of CG and bereavement in UK primary care settings.MethodA realist approach was taken that aims to provide causal explanations through the generation and articulation of contexts, mechanisms, and outcomes.ResultsForty-two articles were included. Evidence on the primary care management of complicated or prolonged grief was limited. GPs and nurses view bereavement support as part of their role, yet experience uncertainty over the appropriate extent of their involvement. Patients and clinicians often have differing views on the role of primary care in bereavement. Training in bereavement, local systems for reporting deaths, practitioner time, and resources can assist or hinder bereavement care provision. Practitioners find bereavement care can be emotionally challenging. Understanding patients’ needs can encourage a proactive response and help identify appropriate support.ConclusionBereavement care in primary care remains variable and practitioners feel unprepared to provide appropriate bereavement care. Patients at higher risk of complicated or prolonged grief may fail to receive the support they need from primary care. Further research is required to address the potential unmet needs of bereaved patients.

Purpose To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. Design A phenomenological qualitative approach was employed. Methods Twelve mothers (age 24-41 years) were identified from the neonatal mortality records of two large neonatal intensive care units with high neonate turnover rates in Amman, Jordan. Data were collected using semistructured interviews with the participants. Interpretive phenomenology was used to generate themes regarding the essence of the mother's experience. Results Critical analyses of mothers' accounts revealed three major themes: (a) Minimize the hurt, which described how mothers intuited overprotection by their families while the news was conveyed indirectly to them; (b) The striking reality of death, which captured mothers' distressing experiences while realizing the loss of their neonates; and (c) Farwell my baby, which accentuated mothers' needs and experiences while neonates' bodies were honored and prepared for burial per the cultural norms in Jordan. Practice implications Our findings highlighted the complex dynamics of familial interactions and cultural influences on mothers' bereavement experiences at the time of neonatal death. The grieving mothers expressed unfulfilled needs of receiving professional bereavement support at the time of neonatal death. Strategies are needed to optimize the supportive role of specialized nurses in providing family-centered bereavement care to mothers and their families who experience neonatal death.

Refereed/Peer-reviewed Background: The 2011 and 2016 Stillbirth Lancet series made a call to action to identify mechanisms to reduce stillbirth stigma. This research answers that call, investigating the extent and dimensions of stillbirth stigma experienced by an international sample of mothers bereaved by stillbirth. Objective: To determine the prevalence and type as well as explore explanatory variables associated with higher levels of stillbirth stigma with bereaved mothers in high-income countries (Australia, United Kingdom, The United States of America and New Zealand). Method: An international survey of 889 bereaved mothers was conducted utilising the recently developed Still- birth Stigma Scale to explore the extent and types of stigma experienced, as well as the association between stigma and self-esteem (Rosenberg Self- Esteem Scales), perinatal grief (Perinatal Grief Scale), and perceived social sup- port (Perceived Social Support Scale). Demographic information (e.g. age, education, stillbirth history, sexual orientation and mental health) were collected to determine the association between individual demographic factors and stillbirth stigma. Results: Results of the Stillbirth Stigma Scale indicated that a majority (54%) of bereaved mothers experienced stigma. Self-stigma was the predominant type of stigma experienced (80%), followed by perceived devaluation (64.9%). Bereaved mothers also experienced discrimination (29.1%) and issues with disclosing their stillbirth to their community (36.7%). Stillbirth stigma scores were higher in bereaved mothers who had experienced the loss of their first child. High scores were associated with the mother’s mental health status (diagnoses prior to stillbirth, and/or after stillbirth (p < .05)).The other scales used indicated that higher stillbirth stigma scores were also associated with lower self-esteem (r (877) = -.304, p < .001), lower perceived social support (r (871) = -.448, p < .001) and higher levels of grief (r (829) = .609, p < .001) Conclusion: The current research was the first to identify that 54% of bereaved mothers experienced stigma, with self-stigma being the most prominent. Bereaved mothers endured discriminating experiences and had trouble disclosing their stillbirth to others within their community. The first-time mother with a self- reported history of mental illnesses appears to be the most at-risk of higher levels of stigma. Future longitudinal research needs to be conducted to determine the direction of the explanatory variables i.e. mental health, self-esteem and social support and develop interventions, which support the bereaved mother and reduce stillbirth stigma. Relevance: This study is the first to demonstrate the prevalence, extent, type and explanatory variables of stigma reported by bereaved mothers and the association between this and poorer outcomes including increased grief and decreased self-esteem. This study begins a dialogue about prevalence and explanatory variables of stillbirth stigma and its impact, to inform future prevention and support potential stigma reduction programs for community and bereaved mothers.

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.

Methods:As in life at large, ideas of ‘self’ underlie a great deal of theory and practice in palliative care and in bereavement care, they are frequently implicit, being part of shared cultural assumptions, but may assume a degree of theoretical abstraction when fostered by professionals. This article considers the latter, arguing for an interpretation of ‘self’ influenced by the anthropological notion of dividual or composite personhood and not for that of the autonomous, relatively insular individual typified in much postmodern culture.Results:After depicting both types of personhood, the article explores Western theories of grief typified in the approaches of attachment and loss, continuing bonds with the dead and narrative approaches to identity.Discussion:The dividual approach to personhood then drives a theoretical critique of those grief theories as a means of reflecting upon palliative and bereavement care.ConclusionThis alignment of palliative and bereavement care is seen as an entailment of the dividual approach to personhood, while further consequences are raised for analysing memory, dreams and visitations of the dead, as well as providing a potential perspective upon memory loss and the dissonance experienced by relatives of someone who no longer recognizes them.

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.

The field of bereavement research and care is at a tipping point. The introduction of prolonged grief disorder (PGD) in the International Classification of Diseases (ICD-11) has ignited clinical interest in this new disorder, along with debate over challenges in validating and implementing these new criteria. At the same time, the global COVID-19 pandemic has launched several local and international efforts to provide urgent support and comfort for individuals and communities suffering from grief. Recently, grief experts have called for a collective response to these complicated bereavements and possible increase in PGD due to COVID-19. Here we outline a new European network that aims to unite a community of grief researchers and clinicians to provide accessible, evidence-based support particularly during times of unprecedent crisis. The Bereavement Network Europe (BNE) has been developed with two main aims. Firstly, to develop expert agreed, internationally acceptable guidelines for bereavement care through a three-tiered approach. Secondly, to provide a platform for researchers and clinicians to share knowledge, collaborate, and develop consensus protocols to facilitate the introduction of PGD to diverse stakeholders. This article outlines the current status and aims of the BNE along with the plans for upcoming network initiatives and the three-tiered bereavement care guidelines in response to the COVID-19 pandemic.

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.

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.

As the tandem fields of bereavement care and research have evolved, so too has a keener appreciation of the role of theory in advancing both. This article succinctly summarizes the function of theory in directing investigation and intervention in grief and grief therapy and describes Meaning Reconstruction as one exemplar of this bootstrapping process, leading to evidence-based conceptual refinements and creative contributions to clinical practice.

Neonatal nurses supporting parents should continue to provide the usual bereavement support while acknowledging the conflicting emotions of both joy and grief parents will be experiencing. Neonatal nurses may come across parents wondering if the loss of their baby – especially if it is their only child – means that they are no longer considered parents in the eyes of society. This chapter aims to identify the unique impact of grief in relation to neonatal death. The individual needs of families who experience the death of a baby will be considered, and best practice matters discussed. Perinatal loss needs to be recognised as a unique type of bereavement in which parents often experience an intense response that will cause changes in several domains of their lives, including emotional, physical, financial, spiritual and social aspects. Terms such as grief, mourning and bereavement are often used interchangeably, but an understand.

Background One of the many things that have changed in the digital age is the way we grieve. While the bereaved have traditionally visited graves or burial sites to talk to deceased loved ones, some are now turning to digital spaces to continue their bonds with the dead. Grieving is once again becoming a community practice with online groups offering support and validation for mourners. As a hospice we recognise the emerging need for online support and as a result we have created our online support group. Aims Our online support group aims to create: A chance for people to share their grief with other bereaved members without feeling unwelcome or uncomfortable; A safe place to post poetry, photographs, journals or articles about their loved one who has died; A chance for people to feel less lonely in their grief; A place to learn coping skills and the importance of self–care. Method A secure online support group was created in August 2017. Details of the group were shared at initial assessments as well as on the hospice website and on social media in a hope to reach out to the harder to reach groups. The group is supported by trained bereavement volunteers at set times throughout the week. Results The online support group has been established for 22 months and currently has 82 members ageing from early twenties to late eighties. A further development is that the group now meet monthly at the hospice for a coffee evening. Satisfaction surveys have been completed with the group with one member reporting, ‘The group just works for me. We are all in the same boat and support one another, especially as weekends which I find extremely difficult at times’.

This paper explores how ‘recovery’ from grief is negotiated in bereavement care practice in England. What constitutes recovery from grief remains contested in bereavement research and practice. In this paper, I outline some of the debates in the literature concerning what constitutes recovery following bereavement before presenting interview data from bereavement counsellors and support workers to discover how practitioners negotiate recovery following bereavement in practice. The findings show mixed responses to the use of the term recovery. I highlight six components that emerged across the accounts and that the participants agreed were important to the success of bereavement counselling. However, rather than provide an empirical basis for recovery, the findings in this paper reveal the conflicts and ambiguities that exist in bereavement care practice.

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.

Steph Wild, founder of the Beyond Bea Charity, explores the issues surrounding compassion in baby loss training and bereavement care

The present study investigated the bereavement care support as experienced by 14 Northern Sotho (n = 14, males = 50%; mean age = 59 years, SD = 13.7 years) community members. The study adopted the descriptive phenomenological approach. Data on participants’ lived experiences, related to the use of traditional herbs for bereavement care, were collected by employing semi-structured interviews. Data were analysed using Hycner’s adapted phenomenological data explicitation method. The participants reported use of traditional herbs in the management of the pain of grief and bereavement alongside other care support expediencies. One particular herb’s psychological function is to ease the pain of grief by causing the affected individual to forget the painful memories associated with the deceased.

ObjectivesIn 2008, new statutory national procedures for responding to unexpected child deaths were introduced throughout England. There has, to date, been no national audit of these procedures.Study designFamilies bereaved by the unexpected death of a child under 4 years of age since 2008 were invited to participate. Factors contributing to the death and investigations after the death were explored. Telephone interviews were conducted, and coroners’ documents were obtained. The nature and quality of investigations was compared with the required procedures; information on each case was reviewed by a multiagency panel; and the death was categorised using the Avon clinicopathological classification.ResultsData were obtained from 91 bereaved families (64 infant deaths and 27 children aged 1–3 years); 85 remained unexplained after postmortem examination. Documentation of multiagency assessments was poorly recorded. Most (88%) families received a home visit from the police, but few (37%) received joint visits by police and healthcare professionals. Postmortem examinations closely followed national guidance; 94% involved paediatric pathologists; 61% of families had a final meeting with a paediatrician to explain the investigation outcome. There was no improvement in frequency of home visits by health professionals or final meetings with paediatricians between 2008–2013 and 2014–2017 and no improvement in parental satisfaction with the process.ConclusionsStatutory procedures need to be followed more closely. The implementation of a national child mortality database from 2019 will allow continuing audit of the quality of investigations after unexpected child deaths. An important area amenable to improvement is increased involvement by paediatricians.

With the recent launch of the National Bereavement Care Pathways in the UK (http://www.nbcpathway.org.uk/pathways/) that are designed to help professionals to support families in their bereavement after any pregnancy loss, there has been an increased interest in aligning the care provided to the needs that are expressed by the bereaved parents. In order to do this we need in-depth knowledge of these experiences. In this paper, we report findings from a study, conducted in England, that explored the ways in which those who have experienced pregnancy loss talk about their experiences at different stages in the diagnosis and experience of pregnancy loss. We focus both on what they say and the language they use to describe their experiences, in order to gain insights that may make it easier for those who support them through the process to do so in an effective manner. We focus in particular on the metaphors they use to describe their experiences. Metaphors are often used by people when describing intensely painful, personal experiences that would otherwise be inexpressible. Exploring the metaphors used by the bereaved allows us to gain deeper insights into what they are going through and understanding these metaphors may allow us to support them more effectively. We also examined the accounts of midwives and other NHS maternity bereavement care practitioners in order to gain insights into their perspectives on the issues identified through our analysis of the metaphors used by the bereaved, and to identify areas of good practice which correspond to the experiences of the bereaved. We were interested in their own practice but also in the environment in which they work and the constraints that this sometimes brings.

The nature of death in the emergency department (ED) may put survivors at higher risk for complicated bereavement. Access to bereavement care could mitigate this, but many EDs do not include bereavement follow-up as part of their routine practice.We describe the implementation at our institution of ED Grief Support, a program developed to extend care to the bereaved through in-person, telephone, and e-mail follow-up for 1 year after the death of a loved one.Bereavement follow-up was preferentially extended to survivors of patients45 years of age who were chosen because of the higher likelihood of unexpected death in this age group. Detailed records of each case were collected prospectively using online data management software and outcomes were recorded. Successful strategies to navigate communication and resource referrals are discussed.We enrolled 192 patients during our 2-year period of observation. The majority died from trauma and parents were the most common next-of-kin to be contacted. Commonly requested services included: clarification of the circumstances of death, the interpretation of autopsy reports, referral to community bereavement resources, and family meetings. Challenges included supporting the emotional well-being of staff and the resource-intensive nature of the follow-up. Staff members who worked with ED Grief Support find it meaningful and note a positive influence on their well-being as providers.Longitudinal bereavement follow-up from the ED is feasible and had a perceived positive impact on the bereaved as well as ED staff.

We aimed to identify practitioners' perspectives on current research priorities in grief and bereavement care. Grief and bereavement care providers were invited to participate in a three-phase Delphi study to create expert consensus on the top priorities for grief and bereavement research. A total of 140 participants completed Phase 1, 84 completed Phase 2, and 70 completed Phase 3. These top 10 research priorities form the basis of a practice-based research agenda for grief and bereavement care to enable researchers to respond to key issues in grief and bereavement care that will ultimately improve the lives of bereaved people.

This chapter focuses on the theme of ‘practices’ and the ways in which both bereavement professionals and bereaved people seek to manage grief. Drawing on empirical interview data from bereavement care practitioners, the chapter explores the concept of ‘grief work’: what grief work involves and how recovery is negotiated in bereavement care practice. The formal forms of ‘grief work’ detailed are contrasted with the types of ‘work’ described by bereaved people that focus on the everyday routines of the household and the role of material spaces and objects. In the chapter Pearce draws on the concept of ‘affective practices’ to argue that grief is more than an internal psychological process but is an embodied, material and relational practice.

Background As a hospice we recognise that grief is an inevitable part of everyday life, regardless of gender, and can be one of the great isolating forces in life. In line with the Bereavement Care Service Standards (2014) we regularly review our activity to ensure development is in line with emerging needs. Hospice staff noticed that the number of bereaved women who come forward for care and support from us far outnumber men and we wanted to find a new way to reach out to the ‘missing men’, including bereaved husbands, men caring for their partner and men coming to terms with their own life- shortening illness. In December 2017 we made a successful application to the Masonic Charitable Foundation Hospice Bereavement Care programme. This application shared our hope to develop a ‘Make, Do and Mend ‘workshop. Our aim was to reach out to the ‘missing men’ recognising that one size doesn’t fit all. Aims Our project aims to set up a ‘Make, Do and Mend’ workshop within our retail warehouse, reaching out to bereaved men and women, those caring for their partner or living with their own life-shortening illness. Workshop participants will work alongside each other on a variety of projects and the essence of the group is not building, but the connections, relationships and support between members. The workshop will be led by an experienced retail manager and bereavement staff, and will take place in a fully equipped DIY workshop environment. The workshops will run throughout the year on Wednesday and Saturday mornings and participants will be invited to attend eight sessions. Through use of the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) tool we will seek evidence of an improvement in participants’ reported wellbeing at the end of the eight- week programme.

Many people experience acute isolation, lack of support and social stigma following a drug or alcohol related bereavement. This article highlights trends within drug and alcohol-related bereavement and the common themes which surface when someone dies in this way. It goes on to explore the work of the BEAD – bereaved through drugs and alcohol project between Cruse Bereavement Care and Adfam in supporting this overlooked and under-supported group of bereaved people. It gives a particular emphasis on how BEAD’s team of dedicated, trained, peer support volunteers – all themselves bereaved through alcohol and drugs – are playing a significant role.

This paper discusses research undertaken to explore and develop practice between a hospice and two primary schools. Action research was used to increase understanding about current practice in, and with, schools and to explore, implement and evaluate models of practice. Seven practice innovations were identified that are in various stages of being piloted. These innovations can be understood as health promoting palliative care activities, as defined by Kellehear (2005), due to the process in which they were designed and their focus on developing the capacity of communities to respond to death, dying and bereavement. They demonstrate the diverse role that hospices, can play in developing how communities experience death, dying and bereavement and propose that a broader lens is employed to understand and facilitate end of life and bereavement services.

Zusammenfassung. Hintergrund: In Deutschland kommen 9 % aller Kinder zu früh zur Welt, 32 % der Frühgeborenen versterben. Die Frühtodsituation stellt Eltern und professionelle Akteure in der Neonatologie vor besondere Herausforderungen. 1994 wurde an der Charité aus der Gesundheits- und Kinderkrankenpflege eine Initiative gestartet, um Eltern perinatal verstorbener Kinder zu begleiten. Ziel dieser Studie war es, den Unterstützungsbedarf von Eltern nach dem perinatalen Verlust ihres frühgeborenen Kindes auf der neonatologischen Intensivstation aus der Sicht professioneller Akteure zu erheben. Methode: Es wurden sechs leitfadengestützte Experteninterviews mit in der Neonatologie der Charité – Universitätsmedizin Berlin tätigen Gesundheits- und Kinderkrankenpflegerinnen durchgeführt und inhaltsanalytisch ausgewertet. Ergebnisse: Die Ergebnisse zeigen einen differenzierten Unterstützungsbedarf der Eltern, der sich zu fünf Schwerpunkten bündeln lässt: «Vermeiden und Schutz vor Überforderung», «Emotionen ausdrücken», «Sicherheit und familiäre Unterstützung», «Bindung zum Kind aufbauen» und «Verstehen und Sinn geben». Schlussfolgerungen: Aus dem Verständnis des elterlichen Unterstützungsbedarfs, gerahmt durch die Caring-Theorie von Swanson, ergab sich, dass die meisten Bedarfe mit der Dimension des «Da seins» korrespondieren. Die Bedeutung orientierender und emotional unterstützender pflegerischer Trauerbegleitung wird unterstrichen. Voraussetzung dafür ist, die Eltern in ihren Bedürfnissen «kennenzulernen».

Background: Stillbirth has a profound impact on women, families, and healthcare workers. The burden is highest in low- and middle-income countries (LMICs). There is need for respectful and supportive care for women, partners, and families after bereavement. Objective: To perform a qualitative meta-summary of parents’ and healthcare professionals’ experiences of care after stillbirth in LMICs. Search strategy: Search terms were formulated by identifying all synonyms, thesaurus terms, and variations for stillbirth. Databases searched were AMED, EMBASE, MEDLINE, PsychINFO, BNI, CINAHL. Selection criteria: Qualitative, quantitative, and mixed method studies that addressed parents’ or healthcare professionals’ experience of care after stillbirth in LMICs. Data collection and analysis: Studies were screened, and data extracted in duplicate. Data were analysed using the Sandelowski meta-summary technique that calculates frequency and intensity effect sizes (FES/IES). Main results: In all, 118 full texts were screened, and 34 studies from 17 countries were included. FES range was 15–68%. Most studies had IES 1.5–4.5. Women experience a broad range of manifestations of grief following stillbirth, which may not be recognised by healthcare workers or in their communities. Lack of recognition exacerbates negative experiences of stigmatisation, blame, devaluation, and loss of social status. Adequately developed health systems, with trained and supported staff, are best equipped to provide the support and information that women want after stillbirth. Conclusions: Basic interventions could have an immediate impact on the experiences of women and their families after stillbirth. Examples include public education to reduce stigma, promoting the respectful maternity care agenda, and investigating stillbirth appropriately. Tweetable abstract: Reducing stigma, promoting respectful care and investigating stillbirth have a positive impact after stillbirth for women and families in LMICs.

Background Around 5 00 000 people die in England and Wales each year, leaving approximately 2 million people experiencing close bereavement. Around 15% will develop a complex grief reaction requiring specialist support. GPs are often the first point of contact in the health services for bereavement support: GP consultations increase after a loss. GPs therefore have a central role in providing bereavement support and in identifying those at higher risk. Experiences and perceptions of primary care bereavement support are not well defined. Methods Sixty three recently bereaved people were recruited via Registry Officers at the death registration appointment. A sub-sample of 14 participated in in-depth interviews within five months of bereavement, exploring their perceptions and experiences of primary care bereavement support. Audio recordings were transcribed verbatim, and analysed using a framework approach. Results The nature of grief varied across the sample, shaped by prior losses, relationship with the deceased, and presence of sequential losses. GP support was one aspect of a broader picture of support provision. Barriers and facilitators of the use of primary care for bereavement support included: difficulty with securing appointments, prior relationships with the GP, the appropriateness of accessing general practice for a non-physical complaint, and expectations of how the GP might help. These served to either encourage or discourage potential help-seeking in bereavement. When the bereaved were registered at a different GP practice from one that had provided consistent GP palliative care for the deceased, bereavement care was particularly difficult. Discussion Understanding bereaved peoples’ perceptions of the role of the GP and the wider primary care team as a source of bereavement support, and the factors encouraging or discouraging such help-seeking in bereavement can enable primary care to optimise the provision of person-centred bereavement support.

After a hospice patient dies, hospice providers can experience a variety of emotional responses. While work has been done on social workers’ and nurses’ reactions to patient death, home health aides (HHAs) have been overlooked. To address this gap, we conducted focus groups and individual qualitative interviews with 14 hospice HHAs. Questions covered HHAs’ grief responses and how they coped with grief. We found a high burden of grief reactions; many HHAs often developed very close patient relationships. HHAs also noted that they often started working with new patients almost immediately after a death, leaving little time to process the loss. However, HHAs found support from other HHAs, their supervisors, as well as family, friends, and spiritual practices to be helpful in coping with their grief. Future work should enhance support to HHAs around patient loss; for example, grief support may be embedded into hospice team activities.

End-of-life (EOL) care is an essential component of cancer care for patients, their caregivers, and families. This chapter approaches EOL care from a psychosocial perspective, providing an overview of EOL care needs, followed by a description of assessment and intervention strategies, with particular focus on legacy-building and meaning-making. It also describes assessment and intervention approaches for individuals bereaved by cancer. While the focus of the chapter is primarily on care of adults, the unique support needs of parents and their children at EOL and during bereavement are also discussed. The chapter concludes with reflections on the state of EOL and bereavement care and recommendations for improving services.