Julie Ellis

Thinking beyond rupture: continuity and relationality in everyday illness and dying experience

Abstract This article challenges the dominance of a rupture model for understanding how we live day-to-day with life-threatening illness and the prospect of death. It argues that this model acts as a key interpretive framework for understanding dying and its related experiences. As a result, a rupture model upholds a normative and inherently crisis-based view of severe ill-health that reifies dying as an experience which exists outside of, and somehow transformatively beyond, everyday matters of ordinary life. These matters include the minutiae of daily experience which inform and shape our lived identities – as individuals and as relational selves. Drawing primarily on interview data from two family case studies that have contributed to an ethnographic project exploring family experiences of living with life-threatening illness, it will show how mundane, daily life is integral to understanding the ways in which families are produced and able to maintain a sense of continuity during circumstances of impending death. The analysis presented here moves analytical understanding of dying experience towards a theory of how individuals and families ‘know’ and engage with so-called ‘big’ life events and experiences. In this way, my study helps generate a novel and more inclusive way of understanding living with life-threatening/limiting illness.

Development of Trust in an Online Breast Cancer Forum: A Qualitative Study

Background Online health forums provide peer support for a range of medical conditions including life-threatening and terminal illnesses. Trust is an important component of peer-to-peer support, although relatively little is known about how trust forms within online health forums. Objective The aim of this paper is to examine how trust develops and influences sharing among users of an online breast cancer forum. Methods An interpretive qualitative approach was adopted. Data were collected from forum posts from 135 threads on 9 boards on the UK charity, Breast Cancer Care (BCC). Semistructured interviews were conducted with 14 BCC forum users. Both datasets were analyzed thematically using Braun and Clarke’s approach and combined to triangulate analysis. Results Trust operates in 3 dimensions, structural, relational, and temporal, and these intersect with each other and do not operate in isolation. The structural dimension relates to how the affordances and formal rules of the site affected trust. The relational dimension refers to how trust was necessarily experienced in interactions with other forum users: it emerged within relationships and was a social phenomenon. The temporal dimension relates to how trust changed over time and was influenced by the length of time users spent on the forum. Conclusions Trust is a process that changes over time and which is influenced by structural features of the forum, as well as informal but collectively understood relational interactions among forum users. The study provides a better understanding of how the intersecting structural, relational, and temporal aspects that support the development of trust facilitate sharing in online environments. These findings will help organizations developing online health forums.

Family food practices: relationships, materiality and the everyday at the end of life

Abstract This article draws on data from a research project that combined participant observation with in‐depth interviews to explore family relationships and experiences of everyday life during life‐threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the studys broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The article also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience.

Introduction: researching death, dying and bereavement

As early career researchers studying the end of life, we recognise that scholarly activity in the field of death studies – an umbrella term for research spanning all aspects of death, dying and ber...

Social Policy and Care of Older People at the End of Life

Providing care for older people at the end of life is an urgent public health issue (Seymour, 2012). As populations in many countries (including England and Wales) continue to age, death rates are also increasing with larger numbers of people dying in late old age (Gomes et al., 2011). As individuals live longer they often experience protracted periods of ill-health and develop multiple health conditions (co-morbidities). This is particularly the case for the growing numbers of older people who are the primary focus of this chapter. We concentrate on the experiences of the oldest old because, although it is important that end-of-life care (EOLC) fulfils the needs of dying people from all age groups, for individuals in their ‘Fourth Age’ of life (that is 85 years and over) the dying process is often complicated by the co-morbidities many experience. Dying can be highly unpredictable involving a series of peaks and troughs, with an older person becoming increasing frail during an often slow, dwindling decline (Nicholson and Hockley, 2011).

Sharing and empathy in digital spaces: qualitative study of online health forums for breast cancer and motor neuron disease. (Amyotrophic Lateral Sclerosis)

Background The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. Objective The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. Methods This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke’s six-phase approach and combined to triangulate the analysis. Results We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished. Conclusions Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support.

Movement, Materiality, and the Mortuary Adopting Go-Along Ethnography in Research on Fetal and Neonatal Postmortem

This article explores the use of the go-along method in research that takes place “behind closed doors” drawing on qualitative research on postmortem imaging. Often favored in community and urban studies, go-along consists of mobile interviews and observations with respondents in their own environments. We conducted go-alongs with various professionals—from pathologists to hospital chaplains—in a range of settings. We also tracked different forms of materiality in and out of the mortuary space. As the article seeks to show, go-along allowed us to appreciate the complex and mobile nature of postmortem, situating it within the wider landscape of bereavement and memorialization. It also enabled us to illuminate the ways in which the mortuary as a place cannot be fixed “indoors,” but rather, is continually remade through different types of practice. Our analysis emphasizes the value of using go-alongs in indoor settings, and further reinforces a fluid conceptualization of place.