The loss of a family member or friend can have profound psychological and physical implications, particularly for individuals without bereavement support services. Online support groups can be an effective means of extending services beyond the traditional modes of delivery. This is especially true for populations that include isolated individuals and those with limited support networks, limited transportation, challenging time commitments, or reside in communities with limited services available. The literature over the last 10 years was reviewed to discern the potential opportunities and challenges of providing online bereavement support group services. Discussed are challenges for recruitment of participants, availability of technology resources, addressing privacy and confidentiality issues, participants’ knowledge of technical equipment, legal considerations, ethical considerations, accessibility, and other best practices. Diverse populations such as adolescents, older adults, and rural communities must be uniquely considered when using online support groups.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Mortality rates in adult critical care settings can range from 10% to 29%. This leaves a contingent of family members enduring the impact of a loved one's death in the intensive care unit (ICU). Family-centered care (FCC) guidelines in critical care advocate for addressing both the patients' and families' needs and values, which includes bereavement care. Therefore, the purpose of this literature review is to provide direction for bereavement care through evaluating common components of bereavement programs and help guide ICU professionals in bereavement program planning and development.
Lucie a quatre ans de moins que Camille, sa soeur chérie. Elles ont perdu leur père et elles s'adorent. Camille a un cancer du pancréas, rare, fulgurant, elle meurt. C'est une conversation d'amour déchirant les souvenirs heureux, le cauchemar, puis la chute. Lucie sera sauvée par la bienveillance d'une association d'aide au deuil pour les jeunes, une résurrection.
Boléro le lapin et Musette l'oursonne sont inséparables. Quand Musette meurt, Boléro reste tout seul et n'a plus goût à rien. Mais peu à peu, au rythme des saisons, et grâce aux autres animaux de la forêt, Boléro redécouvre la saveur des choses simples et la force de l'amitié.
Avec beaucoup de sensibilité, on découvre les différents sentiments de Boléro au fil des jours après la mort de Musette. Le partage avec les autres animaux tient une place importante dans l'histoire qui aidera Boléro jusqu'à la fin de l'histoire.
AIM: This project has two aims: 1) What do relatives to brought in dead describe as helpful and supportive care when they arrive at the emergency department to see and say goodbye to a deceased? 2) What do nurses describe as good nursing practice for brought in dead persons and their relatives and what may hinder or facilitate this practice in an emergency setting?.
DESIGN: A qualitative study within the methodology Interpretive Description.
METHODS: Data will be collected through three data sources: Individual interviews with relatives to brought in dead persons, participant observations of relatives to brought in dead persons during their presence in the emergency department and focus group interviews with emergency nurses.
DISCUSSION: Brought in dead persons and their relatives are received and cared for in emergency departments by emergency nurses. Knowledge of how to render care for the relatives to brought in dead persons in an acute setting including what skills and competences this require of the nurses is warranted. We need to explore, describe and comprehend the experiences of both the relatives and the nurses in order to point out potential areas of improvement.
IMPACT: This paper is a protocol of an Interpretive Description study offering insight into considerations and reflections in designing the study.
BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.
AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death.
DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.
RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.
CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.
Background: Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders’ perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings.
Methods: A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions.
Results: ‘Ability to cope with grief’ and ‘Quality of life and mental wellbeing’ were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state.
Conclusion: This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base.
METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds.
RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base.
CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality.
TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
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.
Earlier this year many of us watched on our TV screens pictures from Northern Ireland of a funeral. The funeral of Lyra McKee. Lyra was a 29-year-old journalist at work in Derry when she was shot dead. Her funeral was a public event which took place in Belfast's Anglican cathedral. Lyra was also a partner, the partner of Sara Canning. Sara was left without the love of her life. At the funeral Sara was surrounded by a loving family, friends, and colleagues from Lyra's work. Sara's grief and bereavement were afforded public acknowledgement by family, clergymen and others. This is how it should be. But are all lesbian, gay, bisexual and trans (LGBT) persons supported in their bereavement? I am reminded of my own experience of bereavement since the death in 2013 of my partner, Mervyn.
The right to the return of personal effects belonging to loved ones after sudden death requires both protection and promotion. It is a fragile ‘right’ that can easily be undermined, and may require support from policy and legislation. The author has championed the return of personal effects after bereavement throughout her career in disaster response and was influenced by early examples of poor treatment and destruction. This article provides an evaluation of the historic picture and a reflection on the ongoing work to ensure that property is protected and restored. It also discusses whether the UK now has an ‘ethic of care’ in this area. This piece considers a number of recent case studies drawing on the author’s own experiences of working on incidents between 2001 and the present day, with specific examination of the work of the Metropolitan Police’s Property Restoration Team in 2005.
This article reviews the nature of post-disaster peer support groups and highlights their role in addressing collective grief and trauma following mass fatality incidents. With reference to best practice guidelines for responding to collective trauma events the article highlights the functions of peer support in promoting social support, connectedness and self/community efficacy. Different types of UK-based peer support group are described – from independent user-based action groups to facilitated talking groups as part of wider community support networks. The establishment and delivery of the Manchester Attack Support Group Programme (following the 2017 Manchester Arena terror attack) is discussed as a contemporary example of a network of facilitated talking groups. It complements the participation of bereaved people and survivors in other independent and self-determined peer-based activities such as the Manchester Survivors Choir and terrorism-related campaigns.
Although positive growth is possible following the loss of a loved one, meaning construction and redefinition of reality may represent a very difficult transition. Professionals must be careful in how they convey optimism and the prospects of growth to families that have recently suffered trauma and loss. At the same time, it is certainly true that they are able to steer people towards recognition of strengths and the possibility of growth and learning. In this article, various approaches that could be used in establishing such outcomes are communicated, in order to assist in providing a way in which people can make life bearable after tragedy has struck.
Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
Childhood bereavement services are a relatively recent form of child welfare provision in the UK. They are predicated on assumptions about the development of children and on an increasing research base that describes the potential impact of childhood bereavement and that support following bereavement is beneficial. UK services largely began as a result of practitioners responding to the needs of bereaved children. Over time, services have become more formalised into an organisational framework, contributing to and influenced by practice based experience, research and training. They have become more sophisticated and wide-ranging in their response to the needs of bereaved children for which there is evidence of a favourable impact on their wellbeing. More importantly, as a structural form of provision now embedded within the UK’s health and social landscape, childhood bereavement services have had a significant impact on social policy and the wider cultural discourse concerning bereaved children.
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 frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
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 speakers. Former Cruse CEO Debbie Kerslake hosted the final panel session which looked to the future.