Carol Thomas

Developing narrative research in supportive and palliative care: the focus on illness narratives.

The phenomenon of the ‘illness narrative’ is well-documented, in the last 25 years, of increasing interest to researchers in health and social sciences. Personal stories about the experience of facing the end of life also have an established history of particular relevance for palliative care clinicians. In this article, we review and describe a range of narrative analysis approaches that may be of use in palliative care. In particular, we distinguish between qualitative analysis applied to narratives and narrative analysis as a method. We discuss the potential benefits and challenges in the use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals’ experience, and to support improvements in end of life care policy and practice.

Psychosocial needs in cancer patients related to religious belief

In a study of psychosocial needs amongst cancer patients, the possession of a religious faith has been identified as a significant factor in determining a range of psychosocial needs. Of the 354 respondents to a questionnaire, which included a comprehensive psychosocial needs inventory, 83% said they had a religious faith, and in general these patients were less reliant on health professionals, had less need for information, attached less importance to the maintenance of independence and had less need for help with feelings of guilt, with their sexuality or with some practical matters than those who said they had no religious faith. In addition, they had fewer unmet needs overall (32% compared with 52%). The knowledge of a patients spirituality should help service providers to predict aspects of psychosocial need and to respond sensitively and appropriately to a patients experience of cancer.

Negotiating the contested terrain of narrative methods in illness contexts

This paper offers an interpretive account of an ongoing transatlantic debate about illness narratives instigated by the publication in 1997 of Paul Atkinsons paper Narrative Turn Or Blind Alley? The claims and counter-claims to be found in this debate about narrative data and narrative analysis are set out sequentially, in an attempt to grasp the debates essentials. Matters of theoretical perspective, methodology, ethics, and personal politics are found to be at stake in the writings of the four featured academics: Paul Atkinson, Arthur Bochner, Arthur Frank and Elliot Mishler. The paper moves on to consider the types of sociologies at work in their arguments, and explores the debates implications for the authors own illness narratives research project. The papers overall aim is to assist researchers who seek to clarify their own thinking on the use of narrative research methods in illness contexts.

Rescuing a social relational understanding of disability

This paper considers some of the themes to be found in current UK debates about the social model of disability. It commences with a review of the origins and key features of the social model, then moves on to an examination of current critiques of its efficacy. The argument advanced is that the radical ideas that laid the foundation for the social model of disability contain a social relational kernel that now needs to be rescued and developed. A rescue is required because this social relational understanding of disability has become over‐shadowed by the social model itself as the latter has risen in stature, and has been obscured in the heat of recent debates about the models strengths and weaknesses.

Disability and Gender: Reflections on Theory and Research

This paper reviews theory and research on disability and gender from a UK perspective. It reflects upon the theoretical perspectives and debates that are to be found in UK disability studies today, and considers their relevance for research on the gendered nature of disability. Themes in empirical research are noted, as is the representation and treatment of disability in mainstream feminism(s). The paper warns about the danger of exclusion through nominal inclusion.

Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases:

This article reviews a sample of narratives written since 1950 by people knowingly facing death as a result of cancer and other diseases, in order to compare experiences and show how these relate to wider changes in practice in end of life care. Methods: A bibliographic search of libraries, archives, journals and internet sources located English spoken literature, including books, poems, newspapers, journal articles, diaries, and internet postings of writings by people facing terminal disease. Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing, and reported the impact on readers. Results: The initial search located a wide range of published and unpublished narratives, to which inclusion/exclusion criteria were applied, yielding 148 narratives by different authors since 1950. A purposive sub-sample of 63 of these narratives was reviewed. Discussion: Over the last half century there have been changes in both the volume of available literature and patterns of writing about end of life experience. Therapeutic benefits of writing are reported as a way of making sense of dying combined with a strong sense of purpose in sharing the story. There is a clear awareness of social needs when dying, along with issues of communication with medical staff, symptom control, realities of suffering, and spiritual aspects of dying. Differences are found in the nature and style of writing about cancer in comparison to other illnesses.

The ‘Disabled’ Body

The wheelchair, the white cane and the crutch signal bodies that do not work in ‘normal’ ways, bodies that we commonly refer to as being ‘disabled’. If we have missing limbs, debilitating chronic diseases, or cannot see or hear, then we can expect to be grouped with others whose bodies and bodily behaviours are seen to vary from the usual in problematic ways — then we belong to the ranks of ‘the disabled’. Cultural reactions to bodies that have something permanently ‘wrong’ with them range from disgust and abhorrence to heartfelt pity — ‘what a tragedy’. Medical responses are to try to ‘fix’ the bodily deviation, to create or restore normality, and to prevent the births of ‘deformed’ or otherwise ‘defective’ fetuses (J. Morris, 1991; Shakespeare, 1999). This medical agenda has been hugely boosted by recent developments in genetic science which, at least in popular media representation, promises to rid human beings of much the burden of disease and disfigurement (Shakespeare, 1999). Thus, disability seems to be all about real bodies that are physically, sensory or intellectually different in undesirable ways. What could remind us more forcibly of the ‘real’ nature of bodies if not a missing leg or the inability to make the sounds that we call speech? In dialogue with these apparent certainties, this chapter sets out to show that this is terrain where the fixities about bodies, and the meanings invested in bodily differences, can be as thoroughly questioned and found wanting as they can in discussions about gender or ‘race’, as outlined in previous chapters.

The importance of place of death in young adults with terminal cancer.

This paper addresses issues relating to place of death in young adults with terminal cancer, through the perspectives of their parents. Evidence suggests that the majority of terminally ill cancer patients would prefer the option of a home death, but little is known about preferences among young adult cancer patients and their families. Through retrospective reflection by bereaved parents of young adults with cancer, this paper aims to understand the importance of place of death to this age group. The empirical data drawn on in this paper consist of accounts written by the parents of 13 young adults who died of cancer. A death at home is reported as a strongly held preference of the majority of young adults, and was supported by their parents. Eight of the 13 young adults were able to die at home, another wished to do so but died in a hospice. However, narratives describing death in places other than home signal that home may not always be the preferred or ‘best’ place to die. Life-stage factors do appear to play a role in determining both preference for, and the actual achievement of, a death at home, but if life stage issues are understood and respected a ‘good’ death can take place in other environments.

Managing end of life medications at home--accounts of bereaved family carers: a qualitative interview study.

Objective To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England. Design Qualitative study. Setting Domestic homes in two contrasting areas in England. Participants 59 bereaved family carers who have delivered care to a patient who spent a minimum of 2 weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if the place of death was: a hospice, nursing home or National Health Service (NHS) hospital. Results Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular, they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance increasing analgesia requirements, and the use of a syringe driver was associated with deterioration and approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use ‘as needed’ medication; disagreements with professional staff, and anxiety about medication errors, especially if perceived to have implications for survival. Conclusions Family carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person.

Medical Sociology and Disability Theory

Disablism: refers to the social imposition of avoidable restrictions on the life activities, aspirations and psycho-emotional well-being of people categorized as ‘impaired’ by those deemed ‘normal’. Disablism is social-relational in character and constitutes a form of social oppression in contemporary society — alongside sexism, racism, ageism and homophobia. In addition to being enacted in person-to-person interactions, disablism may manifest itself in institutionalized and other socio-structural forms.1