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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.

Roger Neilson House (RNH) opened in 2006 to deliver paediatric palliative care services for the Ottawa region. Since the inception of RNH, community interest in palliative care has grown and there has been a significant increase in the programs offered to children and families, particularly in the area of grief services. A few examples of the growth include perinatal hospice program, grandparent group, and sibling services. The social work team has grown from one to four social workers and, recently, psychology has been added to support group services and spiritual care professionals can be consulted when indicated. The increased needs of families, program growth and workload pressures are the key factors driving the requirement to review current grief services. This scoping review will identify assessment measures and evidence-informed approaches to working with bereaved children, youth, and adults.

In the Czech Republic, community responsibility for care of the bereaved after pregnancy loss, and specifically perinatal loss, is a recent phenomenon. Using a sociological, qualitative, explorative framework, the paper analyses practices and contexts for establishing community care as emerging bottom-up initiatives. The research, funded by the Czech Science Foundation 2016– 2019, traces the significant change in the status quo of Czech practices of perinatal loss and associated bereavement care. Grassroots initiatives address these challenges rather than the public health system of the post-socialist past. The paper reflects risky or random as well as synergic effects of the changing environment in perinatal bereavement care provision.

Purpose: The purpose of this study is to evaluate the validity and reliability of the Korean Bereavement Care Confidence Scale (K-BCCS).Methods: The Perinatal Bereavement Care Confidence Scale (PBCCS) was translated into Korean according to an algorithm of cultural adaptation process and excluded six items which were specific to perinatal bereavement. A total of 229 clinical nurses participated in the study. Construct validity, convergent validity, discriminant validity, and group comparison validity were evaluated, and Cronbach’s α was calculated to estimate the reliability of the K-BCCS. Results: The K-BCCS consisted of 31 items in 7 factors, including knowledge and skills for bereavement care (12 items), organizational support (6 items), awareness of the needs (3 items), interpersonal skills (3 items), workload influence (2 items), continuous education (2 items), and understanding the grief process (3 items). The factor loading of 31 items within the 7 factors ranged from .60 to .86. For the convergent validity, the construct reliability (CR) ranged from .74 to .94, and the average variance extracted (AVE) ranged from .49 to .73, which is considered acceptable. The discriminant validity showed that the AVEs of the subscales were greater than the square of the correlation coefficient r. The nurses who had experience providing bereavement care (t=4.94, pp

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 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.

Purpose: This study aims to investigate the implementation conditions of bereavement care for bereaved families and the relationship between demographics of home-visit nurses and rates of provision of bereavement care. Methods: A self-rating anonymous questionnaire survey was conducted with 2200 facilities randomly selected from among the members of the Home-visit Nursing Stations of the National Nursing Business Association. Calculating the rates of provision of each pre- and post-bereavement care item of the survey, we performed a multiple logistic regression analysis to investigate the relationship between the demographics of home-visit nurses and rates of provision of care. Statistical processing employed SPSS ver. 21.0 with the significance level set at 5%. Results: A total of 688 responses were collected (collection rate, 31.3%), and 649 were included in the analysis. “Approval of the care that the family has provided” and “Involvement in the care together with the family and listening to their thoughts” were frequently provided in both pre- and post-bereavement care; however, the rate of provision of “Provided continued support/life planning until the family fully recovers social life” was low. More care services were provided by home-visit nurses working in facilities with 24-hour services in pre-bereavement, and by those with longer home-visit nursing experience in post-bereavement. Conclusions: Home-visit nurses provide many post-bereavement care services. However, continued care that helps bereaved families fully recover their social life, including life planning, is less frequently provided. Bereavement care provision rates vary depending on the facility type, whether the facility offers 24-hour services, and the length of home-visit nursing experience.

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...

Offering sensitive and compassionate clinical and bereavement care following perinatal death is the innate focus of the caring healthcare professional and facilitating informed choice around the subject of lactation following loss is an integral part of this. However, evidence suggests that there may be a deficiency in the provision of lactation advice and support following loss. Contributory factors may include a lack of awareness of lactation options following bereavement amongst midwives, as well as an absence of clarity around where the responsibility for offering lactation support and advice lies. This paper presents the literature surrounding the support of women's decision-making for lactation following perinatal death, explicating the physiology of lactation in the antenatal and postnatal periods, and exploring the challenges and opportunities for the midwife when supporting grieving mothers to decide the best option for them and their family.

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.

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.

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.

This article reports on a small qualitative review of the impact on families when a baby dies on a neonatal unit. The study aim was to see how the service that is provided in a tertiary neonatal un...

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

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.

Background At the beginning of 2020, mothers and fathers who experienced perinatal events (from conception to pregnancy and postpartum period) found themselves facing problems related to the emergency caused by the COVID-19 pandemic and the associated difficulties for health care centers in providing care. In the unexpected and negative event of perinatal loss (ie, miscarriage, stillbirth, and neonatal death) more complications occurred. Perinatal loss is a painful and traumatic life experience that causes grief and can cause affective disorders in the parental couple—the baby dies and the couple’s plans for a family are abruptly interrupted. During the COVID-19 pandemic, limited access to perinatal bereavement care, due to the lockdown measures imposed on medical health care centers and the social distancing rules to prevent contagion, was an additional risk factor for parental mental health, such as facing a prolonged and complicated grief. Objective The main aims of this study are as follows: to investigate the impact of COVID-19 on mothers and fathers who experienced perinatal loss during the pandemic, comparing their perceptions; to evaluate their change over time between the first survey administration after bereavement and the second survey after 6 months; to examine the correlations between bereavement and anxiety, depression, couple satisfaction, spirituality, and sociodemographic variables; to investigate which psychosocial factors may negatively affect the mourning process; and to identify the potential predictors of the development of complicated grief. Methods This longitudinal observational multicenter study is structured according to a mixed methods design, with a quantitative and qualitative section. It will include a sample of parents (mothers and fathers) who experienced perinatal loss during the COVID-19 pandemic from March 2020. There are two phases—a baseline and a follow-up after 6 months. Results This protocol was approved by the Ethics Committee of Psychological Research, University of Padova, and by the Institutional Ethics Board of the Spedali Civili of Brescia, Italy. We expect to collect data from 34 or more couples, as determined by our sample size calculation. Conclusions This study will contribute to the understanding of the psychological processes related to perinatal loss and bereavement care during the COVID-19 pandemic. It will provide information useful to prevent the risk of complicated grief and psychopathologies among bereaved parents and to promote perinatal mental health. International Registered Report Identifier (IRRID) DERR1-10.2196/38866

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.

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...

In this article Cruse Life President Colin Murray Parkes describes the early days of Cruse and how pioneers brought about the science of the care of the dying and bereaved, tracing the development ...

As this issue celebrates 60 years since the founding of Cruse, it is timely to review Bereavement Care, an important element in the development of the organisation, in the context of other ...

Cruse Bereavement Care is marking its 60th year with events throughout 2019. In July the anniversary conference Bereavement Care – Past Present and Future hosted an international line-up of...

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.

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.

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

Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.

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 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 …

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.

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.

Appropriate perinatal bereavement care can benefit bereaved parents and reduce further distress. Poor training can impact healthcare professionals (HCPs) at a personal and professional-level. HCPs have reported poor preparation to care for bereaved parents. High-quality perinatal bereavement care training is essential. This study describes the TEARDROP workshop for perinatal bereavement care training, an evaluation of its pilot and first workshop, and the teaching methods applied. The TEARDROP workshop was created in line with the Irish National Bereavement Standards, and based on the SCORPIO model of teaching, offering a participant-centred teaching. Both pilot session and workshop were held in a tertiary maternity hospital. Paper-based anonymous questionnaires were used to evaluate these sessions. Overall, participants were highly satisfied with the workshop. The level of information and quality of teaching in the pilot and workshop scored very high. Most participants stated not being adequately prepared to communicate or care for bereaved parents. The pre-workshop evaluation showed that only 8% of participants received prior training on discussing post-mortems with bereaved parents. Participants (100%) would recommend the workshop be available nationally and would recommend it to a colleague. To our knowledge this is one of few participant-centred perinatal bereavement care training for maternity staff in Ireland. The workshop has been well received and results highlighted the relevance and importance of the TEARDROP programme for HCPs. Adequate training for all maternity staff is essential and TEARDROP has the potential to impact on the quality of bereavement care provided in Irish maternity units.

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.