Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer (original) (raw)
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Cancer as biographical disruption: constructions of living with cancer
Supportive Care in Cancer, 2012
Purpose From a cancer survivor perspective, the purpose of this paper is to explore what has changed in their lives that they attribute to the disease. The rationale for the study is that evidence of the extent to which cancer disrupts people's lives in the longer term is contradictory. Methods Written accounts from 40 cancer survivors were analysed using interpretative methods. The researchers drew on the concept of biographical disruption as a framework for analysis. Results Cancer survivors construct cancer as a biographically disruptive event with ongoing physical and psychosocial impacts. Cancer is constructed as a permanent threat to life which is responsible for increasing their awareness of their own mortality and invoking positive changes to self. These formulations of living with cancer were found across a range of participants, including those who defined themselves as currently free of cancer, those who had recurrence, those who had been diagnosed 5 years ago and those who had been free of cancer for a long time. Conclusions This study adds to the body of literature exploring how to enhance supportive care for cancer survivors by reflecting on biographical disruption and continuity, and the complexities within individual constructions of changes in life that they attribute to cancer. Cancer survivors should be given opportunities to articulate the impact of cancer, thus giving legitimate space to talk about cancer's ongoing resonance on life so that problems and difficulties are not dismissed or trivialised.
Developing narrative research in supportive and palliative care: the focus on illness narratives
Palliative Medicine, 2008
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. Palliative Medicine (2008); 22: 653-658
Integrity in patients’ stories: ‘Meaning-making’ through narrative in supportive cancer care
European Journal of Integrative Medicine, 2012
Introduction: 'Personal integrity' refers to a 'state of being whole, entire, undiminished'. To help patients preserve a sense of integrity, care needs to be responsive to their individual illness experience. This study explores 'holistic assessment', a consultation in which patients with cancer tell their illness story to a health professional who responds to the integrity of their story and the whole person, in contrast to the reductionist approach taken by specialists treating the disease. Methodology: An ethnographic study of two UK centres that provide CAM therapies to patients with cancer, using non-participant observation of thirty four holistic assessments with a maximum diversity sample of patients. Sessions were audio-recorded and transcribed. The data were analysed using a narrative approach with the support of Atlas.ti software. Results: During holistic assessment, patients told long stories about their illness experience. A typology of stories emerged: 'factual', 'emotional' and 'moral', with over-arching processes common to all: Loss, uncertainty and conflict, embracing or resisting change. Patients' stories provided a 'window' into their inner experience, in a collaborative activity with the listener. This provided cues and information about supportive care needs and also contributed to a process of personal meaning-making for patients. Discussion: Making meaning is an important part of adjusting to a life-threatening illness. Holistic assessment allows patients to express and integrate their vulnerable self, alongside the strong image many feel the need to project in everyday life. The need for holistic assessment within mainstream care has recently been recognised in the UK.
Illness Narratives as Theory and Method Other Entries SAGE Research Methods Foundations
SAGE Research Methods Foundations, 2019
Illness narratives are stories whereby those afflicted articulate experiences of disease and illness. They are ways of subjectively and intersubjectively making sense of illness by linguistic means. Especially in the case of chronic diseases, illness plays a central role of people’s lives and everyday experience and practices, while the initial diagnosis is often experienced as a moment of major biographical disruption. Such diagnoses call into question past experiences, current life circumstances, and the possibility to extend established routines into the future. They may even call into question the possibility to devise future plans and biographical projects at all. Against this backdrop, illness narratives can be viewed as efforts to construct illness as a meaningful event and to bring different moments into a temporal and meaningful order with some level of coherence
Research in Psychotherapy: Psychopathology, Process and Outcome, 2012
We investigated the illness records and life stories of 17 leukaemia survivors using narrative autobiographical interviews. Audio tapes were transcribed and analysed according to qualitative methodology. Using the sociological concept of "trajectory of suffering" (TOS) as a means of analysis we focused on the survivors' mechanisms of psychosocial adaptation including integration of disease-related experiences as part of their autobiographical narration. Verbal data show how the diagnosis pulls affected people out of their everyday life from healthy, strong and with plans for the future to seriously ill, weak and facing death, and thus suspends their self-confidence and social action competence. Analysing the interview transcripts we found six categories of coping with TOS: (1) personal meaningful nourishments, (2) challenging experience with significant others, (3), courage to persevere, (4) family support, (5) dramatic family events, and (6) dreams. The results of our study demonstrate that the cancer is still a dark shadow over the lives of all survivors. They are discussed in the context of coping theory postulating creativity as an up to now underestimated resource of coping behaviour. As a consequence it seems to be vital that medical staff should recognize and discuss these individual needs and feelings of their patients in daily clinical practice.
Falling seriously ill is often experienced as a life event that causes conflict with people’s personal goals and expectations in life and evokes existential questions. This article presents a new humanities approach to the way people make meaning of such events and how this influences their quality of life. Incorporating theories on contingency, narrative identity, and quality of life, we developed a theoretical model entailing the concepts life event, worldview, ultimate life goals, experience of contingency, narrative meaning making, narrative integration, and quality of life. We formulate testable hypotheses and describe the self-report questionnaire that was developed based on the model.