Christine Valentine

Academic constructions of bereavement

Abstract This paper takes the form of a literature review to trace and evaluate the different and changing theoretical, methodological, and disciplinary perspectives through which Western, mainly UK social scientists (i.e., psychologists, anthropologists, sociologists), have sought to understand and address the experience of bereavement during the twentieth century. Such an overview is timely in relation to the rapidly changing nature of Western society around the turn of the century. It examines how the science-based discourse of modernity has shaped such perspectives and the extent to which this has obscured, as well as revealed, important aspects of the bereavement experience. It considers the potential of recent “postmodernist” approaches, which prioritize qualitative methods, and the subjective experiences of bereaved individuals to allow a fuller engagement with this complex and challenging dimension of social life. In so doing it aims to demonstrate how the inadequacy of modernist perspectives in addressing the complexity and diversity of current Western deathways has produced a paradigm shift. It identifies the way such a shift is opening up new areas of inquiry.

Continuing bonds after bereavement:A cross-cultural perspective

Abstract The ways in which eastern and western cultures grieve for their dead are often contrasted. Eastern cultures are seen to place greater value on traditional ritual and ceremony that, it is argued, serve to create a lasting, and comforting, bond with the deceased. By contrast, western societies are seen to be much more materialist and individualistic. This article takes a cross-cultural look at responses to death and loss in the UK and Japan, both post-industrial societies but with very different cultural heritages. Based on interviews with bereaved people in both countries, it finds some surprising similarities, as well as differences, between and within each culture, challenging notions of a typically British or Japanese way of grieving.

Bereavement through substance use: findings from an interview study with adults in England and Scotland

Abstract Background: Deaths associated with alcohol and/or drugs belong to a category of ‘special’ deaths due to three characteristics: traumatic circumstances of the death, stigma directed to both the bereaved and the deceased, and resulting disenfranchised grief experienced by the bereaved. These factors can impede those who are bereaved in this way from both grieving and accessing support. In response to a lack of research in this area this paper reports on an interview study that has aimed to better understand the experiences and needs of this neglected group of bereaved people. Method: Interviews with 106 adults (parents, children, spouses, siblings, nieces and friends) bereaved through substance use in Scotland and England. Results: Five themes describe interviewee experiences: possibility of death, official processes, stigma, grief and support. These findings suggest what is dominant or unique in this group of bereaved people; namely, that living with substance use (including anticipatory grief), experiencing the subsequent death (often traumatic and stigmatised) and the responses of professionals and others (more likely negative than positive) can disenfranchise grief and negatively impact bereavement and seeking support. Conclusions: This article describes a large and unique sample, the largest in the world to be recruited from this population. Our study raises awareness of a hitherto largely ignored and marginalised group of bereaved people, highlighting what might be particular to their bereavement experience and how this may differ from other bereavements, thereby providing an evidence base for improving the availability, level and quality of support.

Creative responses to a drug- or alcohol-related death a sociocultural analysis

This article takes a sociocultural approach to examining creative responses to a traumatic death and loss and their contribution to further understanding of grief, identity, and continuing bonds. Based on qualitative interviews with family members bereaved after a drug- or alcohol-related death, the article explores how, in circumstances which threaten identity and continuity of being, grief may find expression through public and private creativity. Indeed, such creativity was apparent despite negative cultural representations of such deaths invalidating the grief of those left behind, who may suffer profound guilt, isolation, and disturbing memories. While interviewees reported such negative effects, psychologically considered symptomatic of complicated grief disorder, they also conveyed creative responses to negative stereotypes, rebuilding identities, and continuing bonds. These responses, through which interviewees communicated both vulnerability and resilience, revealed a complex and nuanced picture of grief following traumatic loss.

From hope to hope: The experience of older Chinese people with advanced cancer

In our study that explored the current end-of-life care provision for Chinese older people with advanced/terminal cancer, hope emerged as a significant aspect of coping with their condition. Drawing on data from in-depth interviews with a group of older people, their family carers and health professionals, this article explores participants’ constructions of hope in terms of what they were hoping for, how their hopes helped them cope with their illness and what sociocultural resources they drew on to build and sustain these hopes. While acknowledging similarities to Western studies of hope in terminal illness, this article identifies significant divergences in terms of the impact of different sociocultural values and their implications for clinical practice in light of an unfavourable health care environment for patients with advanced cancer and a social support system sustained mainly by Chinese families. It argues that hope represents an important resource for coping with terminal illness among these patients.

Negotiating a loved one's dying in contemporary Japanese society

Abstract This paper examines the interview narratives of bereaved individuals in Japan, drawing attention to the diversity of ways they attempted to achieve a good death for their loved ones. Such diversity, which has been perceived to reflect the multicultural and individualistic nature of post-modern Western, Anglophone societies, is also apparent in the Japanese context, a society that is post-modern, yet non-Western, with a strong sense of traditional and cultural hegemony. Such a culture, in which traditional forms continue to shape contemporary deathways, brings into sharp focus the way more generalised cultural norms find expression in the particularities and contingencies of daily living. In a system of medicalised dying, participants reinterpreted traditional deathways to incorporate more individualistic conceptions of personhood and negotiated contemporary approaches to accommodate traditional values. In emphasising the nature of the dying space, the demeanour of the dying person and their own role in the dying process, they negotiated competing demands of institutional dying, family loyalty, religious and spiritual values and personal autonomy. The variety of positions they adopted in relation to available cultural messages demonstrated the role of individuals in perpetuating, adapting, redefining or rejecting these to accommodate personal circumstances and priorities.

The role of the ancestral tradition in bereavement in contemporary Japanese society

Abstract By focusing on the reported experiences of bereaved Japanese people, this paper explores the continuing role of the ancestral tradition in contemporary responses to death and loss. In a culture that emphasises social conformity, it demonstrates the diverse and innovative ways individuals negotiated a shared tradition in a contemporary postmodern context in which a variety of cultural messages compete for attention. Traditional Buddhist mourning rituals that promote family and social solidarity now take their place alongside a medicalised system of dying, commercialised mourning, bereavement counselling and increasing emphasis on individualism and personal choice. Five categories of responses are identified to reflect the different ways the individuals concerned sought to reconcile social and familial obligations associated with traditional approaches with their need to find individual and personal meaning in their loss. Some participants felt obliged to conform to traditional forms from which they took little comfort, while others found them to be supportive and meaningful. Some took an improvisory approach, putting their own personal stamp on received wisdom. Others turned to alternative forms of support, either to supplement or replace traditional approaches. Their responses reflected the complex, dynamic, fluid and ambiguous relationship between the individual and their social and cultural resources, demonstrating the contribution of individuals to shaping culture.

Marginalised Deaths and Policy

Though referred to as the ‘great leveller’, death may marginalise, affecting not only the treatment of the dead, but also those who are left behind. With reference to new research this chapter focuses on one such form of marginalised death, that which is linked to drug and/or alcohol use and the implications for the bereaved family members left behind. This group, though sizeable, has been neglected in academic, policy and practice terms, in the UK and elsewhere. This has profoundly negative consequences for the treatment they receive from professionals and practitioners involved in dealing with a death and its aftermath, as well as from the wider society. With policy and practice initiatives focused on preventing such deaths, those left behind remain a hidden, neglected and ‘at-risk’ population in terms of the effects this type of bereavement may have on individual, family and social circumstances, particularly the social stigma that such deaths attract (Valentine et al., 2015, forthcoming). In times of austerity, despite some practitioners’ growing awareness of the need to improve their response to those bereaved by substance use, organisations are under-resourced as well as under-informed about the needs of this group. Drawing on interviews with bereaved adults and focus groups with professionals, this chapter identifies the relationship between social stigma and service failures and considers how these might be addressed to provide a better response to this group of bereaved people. The chapter is organised into the following sections: Bereavement following a drug or alcohol-related death; Bereavement policy; Improving the experiences of those bereaved by substance use; Compassion; Language; Being treated as an individual; Working together; Implications for policy and practice.

Service failures and challenges in responding to people bereaved through drugs and alcohol: An interprofessional analysis

ABSTRACT This article reports findings from the first two stages of a three-stage qualitative study which considered the role of services, including public, private and charitable organisations, in responding to the needs of adults bereaved following the drug and/or alcohol-related death of someone close. The study, the first of its kind to explore the landscape and role of services in substance use deaths, was conducted over two sites: south west England and Scotland. In stage 1 of the research, adopting both convenience and purposive sampling, data were collected via semi-structured interviews on experiences and support needs of bereaved individuals (n = 106). In stage 2, six focus groups were conducted with a purposive sample of practitioners (n = 40), including those working for the police, coroner’s service, procurator fiscal depute (Scotland), health service, funeral service, press, clergy, Public Health England, Drugs Policy Unit, bereavement counselling/support and alcohol and drug treatment services, to investigate how services may better respond to this bereavement. Thematic analysis from both data-sets identified two overarching themes. The first, focusing on practitioner responses, captures how these bereaved people may meet with inadequate, unkind, and discriminatory responses from services. Having to navigate unfamiliar, fragmented, and time-consuming procedures compounds the bereaved’s distress at an already difficult time, illustrated by a ‘mapping’ of relevant services. The second relates to challenges and opportunities for those responding. Service failures reflect practitioners’ poor understanding of both substance use bereavement and the range of other practitioners and services involved. Those bereaved are a poorly understood, neglected and stigmatised group of service users. There is a need for services to respond without judgement or insensitive language, and provide information about, communicate and work closely with, other services despite differences in working practices and cultures. These recommendations could positively affect bereaved peoples’ experiences, alleviating stress and overwhelm at a particularly vulnerable time.

A human rights approach to advocacy for people with dementia: A review of current provision in England and Wales:

In this article, we review current advocacy services for people with dementia in England and Wales (provided, respectively, under the Mental Capacity Act 2005, the Mental Health Act 1983/2007 and the Care Act 2014) through the lens of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). We examine what a human rights’ approach to advocacy support would entail, and whether current frameworks in England and Wales are adequate for this approach and provide a sufficient safeguard. First, we consider how the human rights of persons with dementia have become increasingly important and the extent to which the CRPD provides an opportunity to bolster safeguards and protection. Second, we discuss cause and case advocacy, and how these advocacy models could be shaped by the CRPD to promote the rights of persons with dementia at each stage of the disease. Third, we highlight current dilemmas and challenges in the provision of advocacy support in England and Wales by focusing on case law, commissioning of services and current practice. In particular, we analyse how the different legislative schemes have given rise to some confusion about the various advocacy provisions, as well as potential for overlap and discrepancies between different regimes. We also highlight the need for further research to address important gaps in knowledge, including the scale of need, patterns of referral and attitudes to advocacy services. The article concludes by highlighting how advocacy support could be recalibrated as a universal right to promote the aims and aspirations of the CRPD, and how education is needed to address the stigma of dementia and promote the benefits of advocacy in protecting the rights of those with dementia.