Ce chapitre montre que la question de la mort impliquant une personne en situation de handicap pose fondamentalement la question des représentations du handicap et interroge la manière dont on parvient, plus ou moins facilement, à penser le sujet en situation de handicap spécifiquement, et les enfants plus généralement, comme des êtres pensants et appréhendant, à leur manière, la réalité et/ou la perspective de la mort d'un proche et/ou celle de leur propre mort.
[Extrait de l'intro.]
Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
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.
Based on interviews with Senegalese people living in four contemporary urban neighbourhoods, who had experienced the death of an adult family member, we explore how the research challenged and surprised the White, British members of the research team. Such challenges help to shed light on some dominant, taken-for-granted understandings of ‘bereavement’ based in ‘Western’ perspectives. The surprises include how the death was discussed and explained; patterns of family living and the implications for how individuals responded to the death; the emotional significance of particular religious expectations; and the emotional implications of material hardships. After exploring how interviewees responded to the deaths in Senegal, we consider how these responses compare with expectations and taken-for-granted assumptions about ‘bereavement’ in the contemporary UK. We conclude by discussing the implications for bereavement support and professional practice, in relation to diverse responses to death.
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 journals with similar aims. The background to the publication of Bereavement Care will be presented together with journals that contain a similar subject coverage. The way the journals are organised will be briefly explored as well as some of their most cited and the most-read papers. Commentary on the latest issue of these journals will be provided along with reflection on other sources of bereavement literature. Some suggestions for future topics are also included.
Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (24 years old and under) (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease.
Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants’ place of work either over the telephone or by the lead researcher. Ethical approval was granted by a university ethics committee and Health Research Authority (HRA).
Findings: Two key overarching themes were identified from the data: perceived benefit and value for bereaved young people using a digital legacy and challenges and barriers for bereaved young people using a digital legacy.
Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.
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.
La nuit où son père est mort, Régina a cru que son monde s'effondrait et qu'elle ne pourrait vivre sans lui. Mais elle va se laisser entraîner dans un étrange périple qui changera tout. Sous forme de parcours initiatique, Le grand voyage de Régina Fever est un conte plein de douceur et de tendresse sur le deuil et l'acceptation de la mort.
Sur les bords du Loch Ness, Willy, un jeune Ecossais, tente de composer une complainte pour rendre hommage à son père. Pourtant, il n'est pas très doué et les sons qui s'échappent de sa cornemuse n'ont rien de mélodieux. Sa pauvreté et ses piètres qualités de musicien font aussi de lui le souffre-douleur des enfants du village. Mais un matin, alors qu'il se désespère, un cygne s'approche...
Le père d'Olivia, 10 ans, est malade. Atteint d'une maladie neurodégénérative, il ne peut plus monter les escaliers et est installé en bas, jusqu'au moment où il devra être hospitalisé et où il décidera de ne plus lutter. A travers le regard d'Olivia, heureuse d'être entourée de tous les siens et de son chat, entre les larmes et les rires, nous suivons le quotidien de la famille confrontée à la maladie et à la fin de vie.
Dans ce double album, deux des conteurs les plus reconnus d'Amérique latine, Alberto Laiseca et Alberto Chimal, se saisissent avec délicatesse du thème du sacrifice qu'une mère est prête à faire pour s'opposer à un événement tragique et irréversible : la mort d'un enfant. En illustrant et réunissant les deux histoires par un effet de miroir exceptionnel au coeur de l'ouvrage, l'artiste argentin Nicolás Arispe offre une lecture qui va au-delà des mots.
Ses illustrations en noir et blanc, symboliques et terribles, sont à la croisée d'Edward Gorey et de José Guadalupe Posada, du baroque et du paganisme, de la Première Guerre mondiale et des danses macabres médiévales. Dans La Mère et la Mort, l'Argentin Alberto Laiseca s'inspire d'un conte de Hans Andersen et nous raconte l'abnégation d'une mère prête à traverser les paysages les plus hostiles et à sacrifier sa chair pour retrouver son petit.
Dans Le Départ, le Mexicain Alberto Chimal dépeint le long et douloureux deuil d'une mère qui perd son enfant lors d'un tremblement de terre. Les deux récits, à mi-chemin entre la tragédie classique et la tradition orale, nous confrontent à nos peurs les plus profondes et à la question du deuil le plus douloureux qui soit, qui s'exorcise ici par la littérature et l'art.
This article reviews the concept of postmortem identity, noting its relationships to others concepts such as relational trauma. Identity is a very fluid concept that can change even after an individual's death as new information becomes available or even as social values change. Such modifications of postmortem identity can affect the course of bereavement-complication reactions to loss.