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.
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 of grief counselling and the body of Cruse volunteers who provide today’s invaluable work.
Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be.
Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin.
Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method.
Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia.
Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible.
Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
Au cours du siècle dernier, les réactions et processus de deuil ont de plus en plus été perçus et conceptualisés comme « a-normaux », c’est-à-dire pathologiques lorsqu’ils sont inhabituels, trop longs ou trop courts, trop intenses ou pas assez présents. Le deuil est souffrance (dolere étymologiquement) et notre société veut le bonheur, le contrôle et l’efficacité. Le deuil doit donc être « traité ». Pourtant, le deuil existe car il est le coût de l’attachement essentiel entre les êtres humains, attachement qui a été phylogénétiquement et ontologiquement sélectionné pour notre survie et notre développement. La perspective humaniste, centrée sur la personne et expérientielle, permet d’envisager les réactions et processus de deuil de manière plus compréhensive, humaine, idiosyncratique. Dans cet article, au-delà d’un bref retour sur les développements théoriques et empiriques dans ce domaine, je présenterai les éléments scientifiques permettant d’appuyer une perspective d’accompagnement centrée sur la personne que tout un chacun peut vivre de manière privée et/ou professionnelle. Basée sur les preuves scientifiques, celle-ci apparaît comme plus respectueuse des diversités intra- et interindividuelles, considérant la personne de manière holistique et intervenant par la relation de qualité à l’autre. L’aidant authentique, respectueux, empathique, flexible et chaleureux est amené à entreprendre un travail humanisant l’autre et le soin qu’il lui apporte tout en répondant aux critères sociétaux d’efficacité attendue.
BACKGROUND: Post-intensive care syndrome-family is a common problem in relatives of patients who die in an intensive care unit. Family-centred end-of-life care with support for the family during and after the death is supposed to prevent suffering and avoid illness.
AIMS AND OBJECTIVES: This study aimed to investigate family-centred end-of-life care and bereavement follow-up services offered to family members of patients who die in Swedish intensive care units.
DESIGN, METHODS: A cross-sectional study using a 16-question survey based on family-centred end-of-life care was sent to all 81 adult intensive care units. Data were analysed by descriptive statistics and chi-square. Respondents were able to add individual comments to the questionnaire.
RESULTS: Although the majority (76.7%) offered some kind of follow up, this service was not always offered. Modes for invitation, timing, and contents in the follow up varied between the units. The staff tried to individualize the follow-up service according to the family's needs. Nurses and social workers were the only professionals who provided follow-up conversations on their own. Most of the intensive care units (97.3%) kept diaries that were handed over to the family when they left the unit after the patient's death or at a follow-up visit. Only 8.8% reported that they always offer the family the opportunity to be present during resuscitation. Most respondents reported that patients (60.6%) died in a private room.
CONCLUSIONS: Family-centred end-of-life care varied among the intensive care units, and some families were not offered any follow up at all. Timing, invitation, and elements in the follow up differ between the units. Diaries were commonly kept and usually given to the family. Few units offered the family to be present during resuscitation.
RELEVANCE TO CLINICAL PRACTICE: There is a need for national guidelines to ensure that all bereaved families receive equal and individual family-centred end-of-life care.
This article deals with the issue of perceived social support among 40 bereaved parents who have lost a child in a terrorist attack in Israel. The aim is to gain a better understanding of the nature and quality of the formal and informal support that the parents received. The parents were interviewed using semistructured in-depth interviews. The content analysis revealed that alongside the positive aspects, the parents also emphasized the negative side of the encounter with the social environment. The positive aspects included feeling of appreciation for the assistance in the coping process. The negative aspects included a sense of abandonment and distress. The dialectic nature of the domain, together with a recognition of its importance, points to the need to reconcile between the desire on the part of the social environment to assist the bereaved parent on one hand and ways to implement it on the other hand.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.
Significant strides have been made in the trauma and grief fields to address the unique needs of those who have lost a loved one to violent death. Several treatment techniques have been found to be effective for symptoms of trauma and grief that are prevalent among violent loss survivors including restorative retelling and cognitive behavioral strategies. Current interventions either are tailored for a specific mental health problem or are more universal in nature for grief related to violent loss. This paper presents an evidence-based and guided modular approach for responding to the myriad potential mental health needs of violent loss survivors. A comprehensive module-based structured intervention for violent loss survivors, which specifically targets several common mental health difficulties following traumatic loss, may offer clinicians a thorough and flexible approach guided by clinical assessment to address the distinctive and common issues violent loss survivors often face.
Understanding survivors’ perspectives on treatment is important in a patient-centered approach to developing interventions for traumatic loss. Focus groups were conducted with 23 motor vehicle crash, suicide, and homicide survivors. Survivors’ attitudes toward a modular treatment for traumatic loss were assessed. This study also sought to explore survivors’ perspectives on the acceptability of existing evidence-based practice elements in the treatment of bereavement-related mental health problems. Qualitative analyses suggest that survivors liked a modular treatment approach and agreed that existing practice elements could be useful in addressing bereavement-related concerns. Implications for developing a modular treatment package for traumatic loss are discussed.
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
This paper explains the healing benefits, the “sweet unexpected” of the title, which results from using poetry to engage trauma, including traumatic grief. The benefits of poetry are presented alongside a discussion of a 22-year-old nonprofit called The Pongo Poetry Project. The sweet unexpected includes the ease with which trauma survivors engage their trauma narrative, the critical insights that emerge in poetry, the beneficial social context of sharing poetry, and the healing benefits of poetry for writers, care providers, and readers alike. The paper concludes by providing resources that can help people use poetry in their own work.