Bereavement Support Research Articles

Measuring the outcomes of support provided to people after a suicide or other sudden bereavement: A scoping review

Systematic collection of outcome measures within suicide bereavement support is vital in building the sector’s evidence base. However, there is currently limited understanding around the appropriate and sensitive use of outcome measures. Following the scoping review methodology, a literature review was undertaken to map how programs and interventions that assist individuals bereaved by suicide or other sudden, traumatic deaths gather outcome measures. The search strategy identified 1145 papers, of which 49 met the inclusion criteria. The review identified many ways that outcomes are captured, with custom tools being commonplace. Among standardized tools, the Grief Experience Questionnaire (GEQ) and Beck Depression Inventory (BDI-II) emerged as frequently used. Most articles provided some form of justification for their chosen outcome measure methodology, often citing psychometric robustness over consideration of the impact on service users. The review underscores the need for careful consideration when selecting outcome measure tools or approaches in sudden death bereavement interventions.

Providing emotional care for early pregnancy loss: development and evaluation of a new training module for healthcare providers

BackgroundMiscarriage is a common life event that frequently causes significant grief and distress. The emotional impact of miscarriage has been shown to be strongly influenced by patients’ and partners’ experiences interacting with healthcare providers during the miscarriage diagnosis and treatment: positive experiences are associated with reduced perinatal grief, whereas negative interactions can aggravate the traumatic impact of the loss. Unfortunately, healthcare providers frequently report feeling ill-equipped and unprepared to provide adequate emotional care for miscarriage. As such, there is an urgent need for effective training material to support healthcare providers in this important care. MethodHere, we report a quasi-experimental study evaluating the effectiveness of a new training module that we recently developed to empower healthcare providers when providing emotional care for miscarriage. ResultsUsing the previously-validated Perinatal Bereavement Care Confidence Scale, we show that this module is highly effective, achieving significant increases in healthcare providers’ knowledge, bereavement support skills, and awareness after completing training. Importantly, the module was effective for each of five different staff roles (anaesthetists, midwives, nurses, obstetricians and receptionists) and for both junior and more experienced staff. Furthermore, at six-week follow-up, HCPs reported using many of the module's recommendations in their ongoing practice. ConclusionAltogether, this new training module is therefore an important step towards empowering healthcare providers (in all roles) in providing essential emotional care for this common and frequently highly-distressing life event.

Losses and support in the grieving process –– pastoral and media context

The loss of a close person is accompanied by various emotional, cognitive, behavioural, physical, spiritual and social reactions. The process of grieving therefore has an impact not only on the course of grief, bereavement itself, and the perception of losses, but also on the human being generally. In accordance with experts, grieving after a loved one who died of the virus that causes COVID-19 is specific. In most cases, it is characterized by a lack of personal contact with a seriously ill person due to infection and quarantine measures during hospitalization, and later a characteristic ban on personal farewells or touching due to the potential threat of infection. In addition, this specifics is accompanied by reflections on how the infection occurred in the first place, or anger at the lost person for not being careful enough, or anger at the health system that provided help to the sick loved one. The paper takes into account the aforementioned as a starting point for the presentation of grief and bereavement, which also takes place in the space of social media during the pandemic. The article seeks to contribute to the overall concept of pastoral bereavement support and contemporary digital support for grief and bereavement. It can be achieved by presenting the possibilities of online support for mourners in the context of the French philosopher Vladimir Jankélévitch's (1977) relational model of death. Rabatel and eventually Floréa referred to this issue and started the research on the announcement of death in the media. The goal of such studies was to show that the conventional media focuses on the death of distant people that "doesn’t concern us" (i.e., "third person death"), whereas new technologies give the opportunity and space to talk about the death of close people (i.e., "second person death") as well as one's own death (i.e., "first person death"). The text presents the online space as a place where pastoral care and accompanying the mourners or grieving men is not only possible but also beneficial.

Perceptions of physicians caring for pediatric patients with cancer in Europe: insights into the use of palliative care, its timing, and barriers to early integration.

Integrating pediatric palliative care (PPC) into pediatric oncology standard care is essential. Therefore, it is important to assess physicians' knowledge and perceptions of PPC to optimize its practice. To evaluate the knowledge, comfort levels, and perspectives of physicians regarding the timing and perceived barriers to integrating PPC into pediatric cancer care across Europe. The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, originally developed for other global regions, was culturally and contextually adapted for Europe. The survey was distributed via the European Society of Paediatric Oncology (SIOPE) membership listserv. Any physicians caring for children with cancer across Eastern, Southern, Central, and Northern Europe were invited to complete the survey. A total of 198 physicians from 29 European countries completed the ADAPT survey. Physicians demonstrated relative agreement with the World Health Organization's guidance; median alignment was 83.4% (range 59.9%-94.1%). Although most respondents felt comfortable addressing physical (84.4%) and emotional (63.4%) needs, they felt less comfortable addressing spiritual needs (41.9%) and providing grief and bereavement support (48.5%). There were significant regional differences, such as physicians in Eastern and Southern Europe reporting a lack of PPC specialists, opioids, and home-based care, while those in Northern and Central Europe did not. Physicians caring for children with cancer throughout Europe have a good understanding of PPC. However, misconceptions about PPC persist, requiring educational and capacity-building efforts. Additionally, the regional differences in perceived barriers must be addressed to ensure equitable access to PPC for all European children with cancer.

Understanding impact and factors that improve postvention service delivery: findings from a study of a community-based suicide bereavement support service in England

ABSTRACT This article reports on a two-year study of a community-based suicide postvention support service in the UK. Attention centres on the implementation of four integrated elements within the service model: multi-agency working with real-time suicide surveillance, persistent pro-active contact; volunteer-led support; continuous open-ended support. Our approach involved analysing utilisation data and qualitative techniques, including in-depth interviews with a diverse group of stakeholders. The study is the first of its kind to provide an in-depth examination of an innovative approach focusing on the integrated model and its constituent components. Our findings offer evidence-based examples of collaborative service efforts in implementing real-time interventions, with agencies working together to provide timely, co-ordinated, proactive responses and support with the potential to alleviate suffering and prevent loss of life. The value of volunteer-led support and open-ended access and associated challenges are emphasised. Findings hold promise for international impact with policy implications for services worldwide.

OS02.4.A CAREGIVER PROGRAM IN NEURO-ONCOLOGY: UCSF EXPERIENCE CARING FOR MORE THAN 4,000 CAREGIVERS OVER THE LAST 10 YEARS

Abstract BACKGROUND Caregivers of patients with primary brain tumors are at high risk for distress and as they navigate caring for their loved one with both a cancer diagnosis and neurologic disorder. The last decade has seen growth of caregiver research in the brain tumor community, with evidence that caregiver mastery may correlate with survival in patients with glioblastoma (GBM). The UCSF Gordon Murray Neuro-Oncology Program, the first of its kind, launched in 2014 with a mission to address their unique needs. Caregiver care is now fully integrated into the clinical care of patients with brain tumors at UCSF, providing personalized care across the disease trajectory and programming to address common challenges and foster resilience. The Program includes a nurse, administrator, and social worker. Referrals occur 1) at first clinic appointment; 2) from clinical staff; and 3) caregivers of patients with GBM receive proactive outreach over the first 6 months after diagnosis. Caregivers are also contacted for bereavement support. Dedicated programming provides educational materials focusing on common concerns and building community through monthly support groups, educational webinars, annual retreats and family camp. We report our practical experience of the Program serving over 4,000 caregivers since its inception. MATERIAL AND METHODS Total number of individual caregivers were included from 01/2014 - 12/2023. Detailed demographic information was extrapolated during clinical interviews from a subset. Information regarding caregiver concerns and interventions was extracted from the medical records between 01/2017 - 12/2023. RESULTS The UCSF Gordon Murray Caregiver serves an annual average of 400 caregivers and over 800 encounters. Demographic information obtained from a subset revealed 66% females; 77% between 41-64 years of age; 60% a spouse; 89% working full time; and 30% had children in the home. The most common concerns for caregivers were informational (42%), followed by emotional (25%), and practical (23%). Examples of informational concerns included desire for informational resources, understanding the treatment plan/side effects, and understanding patient behavioral changes. Emotionally, they feel overwhelmed, uncertain, and sad. Practical concerns included physically caring for patients and issues around medical insurance, disability, and finances. Caregivers also expressed frequent concerns around talking with children/family members and feelings of isolation. CONCLUSION Caregivers of patients with primary brain tumors are at high risk of distress and have unique needs based on the tumor location and symptoms from treatment. Our practical 10 year experience of a dedicated, fully integrated, caregiver program highlights real world concerns of caregivers and identifies opportunities to develop tailored interventions to address these needs.

A rapid review of the evidence for online interventions for bereavement support.

Grieving is a natural process, and many people adjust with support from family and friends. Around 40% of people would benefit from additional input. Online bereavement support interventions may increase access to support. Evidence regarding their acceptability and effectiveness is emerging but needs to be synthesised. To synthesise evidence on the feasibility, acceptability, effectiveness, impacts and implementation of online interventions to improve wellbeing, coping and quality of life after bereavement. A rapid review of evidence regarding online bereavement support. We appraised study quality using AMSTAR 2 and the Mixed Methods Appraisal Tool. English language articles published 1 January 2010 to 4 January 2024, using Ovid MEDLINE, Ovid Embase and APA PsycINFO. Eligible articles examined formal and informal online interventions to improve bereavement outcomes. We screened 2050 articles by title and abstract. Four systematic reviews and 35 individual studies were included. Online bereavement support was feasible, acceptable and effective in reducing grief intensity, stress-related outcomes and depression. Where reported, participant retention was typically >70%. Positive impacts included: access to a supportive community at any time, reduced isolation; opportunities to process feelings; normalisation of loss responses; access to coping advice and opportunities for meaning-making and remembrance. Negative impacts included upset due to insensitive comments from others via unmoderated online forums. Online interventions can widen access to acceptable, effective bereavement support and improve outcomes for bereaved people. National policies and clinical guidelines relating to bereavement support need to be updated to take account of online formats.

Supporting bereaved students: Qualitative insights from Danish college student counselors

This article investigates bereavement support among Danish college students, focusing on the role of student counselors across seven colleges. Twenty-one counselors participated in semi-structured interviews, revealing challenges in identifying and supporting bereaved students while juggling academic priorities. They acknowledge their focus on academics, while often feeling they lack adequate training for broader emotional support. Key themes include counselor roles, identifying bereaved students, and balancing academic and emotional needs. Recommendations highlight the necessity of tailored counselor roles, specialized training in bereavement and communication, and establishing clear support structures. These findings underline a critical gap in college bereavement support and advocate for practical improvements. Enhancing counselor education and support structures could better address the needs of bereaved students, reflecting broader challenges faced by counselors and the importance of continuous education in effectively supporting them.

The Reciprocal Relationship Between Social Support in Bereavement and Posttraumatic Growth-A Random Intercept Cross-Lagged Analysis.

Social support can promote posttraumatic growth (PTG) in the general trauma population. However, evidence on the reciprocal predictive relationship between social support and PTG is lacking, particularly among the bereaved. In this longitudinal study, we surveyed 181 adults who had lost first-degree relatives within 1 year at three intervals, each 6 months apart. The study utilized The Scale of Social Support in Bereavement (SSB), which distinguishes four domains of social support for the bereaved: living support, economic support, grief processing and emotion restoration. Additionally, The Posttraumatic Growth Inventory (PTGI) was used to measure PTG. Random intercepts cross-lagged panel model analyses revealed that social support and PTG were positively correlated at each time point at the within-person level. Moreover, at the within-person level, the total social support, as well as social support in the restoration-oriented domains at Time 2, positively predicted PTG at Time 3, but this relationship was not observed for grief processing support. Additionally, PTG at Time 1 positively predicted the receipt of emotion restoration support at Time 2 at the within-person level. The mutual influence between PTG and social support, as well as the differential relationship between types of support and PTG, enriches our understanding of ways to promote positive changes among the bereaved. The findings underscore the importance of restoration-oriented social support for bereaved individuals in facilitating PTG.

Evaluating Bereavement Response Plans in Daycare: A Comparative Analysis of Support Systems in Denmark and Norway

This study examines the implementation and use of bereavement response plans (bereavement plans) in Danish and Norwegian daycare institutions. Two large-scale surveys were conducted to explore the implementation rates, satisfaction levels, and source of the plans. The data collected was analyzed using frequency analyses and Chi-square tests of independence. The findings suggest that 87% of Danish institutions have bereavement plans compared to 98% in Norway. Furthermore, the study highlights the differences in the development of bereavement plans between the two countries, as Danish institutions trust their individually tailored plans more than their Norwegian counterparts, while the Norwegian plans seem to be of higher quality. Despite these differences, bereavement plans provide a sense of safety for staff when supporting bereaved children in both countries. This study contributes to the ongoing efforts to improve bereavement support in daycare institutions and emphasizes the importance of continued research and development in this area.

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

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

Evaluating the Effect of Participation in Bereavement Support Groups on Perceived Mental Well-Being and Grief Reactions.

The study aimed to evaluate the effect of participating in bereavement support groups on mental well-being and levels of grief and to gather information about participants´ experiences of participation. The programme consisted of six sessions over six weeks. Data were collected with the Warwick Edinburgh Mental Well-Being Scale (WEMWBS) and the Adult Attitude to Grief scale (AAG) as well as demographic and open-ended questions. 64 bereaved spouses returned at least parts of the study´s questionnaires before participating in the programme while 39 returned the complete WEMWBS and 36 the complete AAG both before and after participation. Most participants were women >60 years old. Participation in the programme resulted in a significant increase in perceived mental well-being and significantly lower levels of vulnerability in grief. Responses to open-ended questions revealed both positive and negative experiences. A lowered WEMWBS score and a relatively high AAG underscore the importance of providing services to the recently bereaved. Routine screening for complicated grief before participating in the bereavement support group sessions is recommended.

The gift of peer understanding and suicide bereavement support groups: A qualitative study

There is a growing recognition and need for more studies on groups practices and processes to develop greater insight into the helpful elements that may be distinctive to bereavement peer support groups for traumatic loss such as, suicide. Using a qualitative descriptive design, focus groups and individual interviews were conducted online and face-to-face with a purposive sample of 27 participants in Ireland and in Denmark, who were bereaved by suicided and were attending peer bereavement support groups. Data were analyzed through Thematic Analysis. The findings suggest that the group provided a safe place where people felt and nurtured a deep emotional connection, a place where people trusted themselves and others to speak the unspoken and to tell and re-tell their story without fear of consequence as well as a place where they learnt to process their loss. Findings are discussed and recommendations based on the findings are proposed.

Grief and bereavement support amidst palliative care in the paediatric intensive care unit

ABSTRACT In paediatric intensive care units (PICUs), advanced medical care meets deeply emotional human experiences. This review examines grief and bereavement support in PICUs, emphasising its significance in extending palliative care beyond end-of-life scenarios. A comprehensive literature search of PubMed and Google Scholar from 2014 to 2023 yielded 50 relevant studies. The findings illustrate the unique challenges in PICUs, such as children’s limited communication abilities, parental distress and emotional burden on healthcare providers. Our review revealed the multifaceted nature of grief in PICUs, including anticipatory and complicated grief, and its profound impact on families and siblings of PICU patients. We identified diverse emotional, psychological, cultural and spiritual support needs that underscored the importance of continuous bereavement care and access to resources. Current support practices, including counselling, support groups, memorial services and interdisciplinary teamwork, are explored. Challenges such as resource limitations, healthcare providers’ emotional toll and communication barriers are discussed. The study also highlights emerging trends such as digital tools, innovative therapies and policy changes to enhance holistic, family-centred care in PICUs.

Virtual Bereavement Support Program in a Children’s Hospice Care Center During COVID-19 Pandemic and Beyond

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of families who participated in the program following the death of a child or grandchild. Participants expressed high levels of satisfaction, indicating its potential as an effective approach for pediatric bereavement care beyond the pandemic.

The Psychosocial Developmental Phases of Death (Mortality) Awareness: What Educational Therapists should know when working with Terminally Ill Clients

This conceptual paper explores death and dying (mortality) from scientific, philosophical, and psychosocial perspectives, emphasizing its multidimensionality. Scientifically, death signifies the cessation of biological functions, while philosophically, it marks the end of conscious experience. Psychosocially, death encompasses emotional, cultural, and social dimensions, shaped by beliefs and cultural backgrounds. Educational therapists play a crucial role in navigating the psychosocial aspects of death, providing support and guidance to individuals and families coping with loss and grief. Across cultures, diverse rites and rituals as well as mourning practices aid in navigating its challenges. Focusing on death awareness from a psychosocial standpoint, this paper highlights its profound psychological implications, especially within the Eriksonian developmental theory, which is the main focus of this paper. The author has also suggested that future research could integrate interdisciplinary approaches to gain a holistic understanding of death, examining biological, philosophical, and psychosocial intersections. Practical applications could include enhancing palliative care, bereavement support, and mental health interventions, with educational therapists playing a pivotal role in these palliative endeavors. Studying cultural variations in approaching death or mortality could deepen our appreciation of human experiences. Longitudinal studies could track the evolution of individuals’ attitudes towards death and its impact on well-being. Overall, further research on death and dying, with the involvement of educational therapists, can help to enrich our current comprehension of death’s implications for humanity.

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

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

Support for people in mourning. The role of a social worker

Death is accessible, which directly concerns every person, but is also available to their loved ones who experience mouring. Mourning is a long process that covers experience many different feelings and different issues. The aim of the article is to discuss the form of support that a bereaved person can receive, standard support from social welfare institutions as well as from non-governmental organizations. There are many different forms of bereavement support in the social welfare system that may be available, such as financial support, specialist support (legal, psychological, family), crisis intervention, participation in support groups and help from a family assistant. However, there is a lack of in-depth scientific research among bereaved people and among social workers who provide support in practice and available analyzes show some gaps in the bereavement support system. Non-governmental organizations play an important role in helping adults and children in mourning.

Bereaved pupil support in schools: teacher training

ObjectivesApproximately, 1600 pupils are bereaved by a parent or sibling each year in Northern Ireland, equating to at least one child in every school class. Despite this, many children who...

Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries.

Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann-Whitney, Kruskal-Wallis, chi-squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses. Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries' neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians. Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.