Liminality as a dimension of the experience of living with terminal cancer (original) (raw)
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Liminality: a major category of the experience of cancer illness
Social Science & …, 1998
AbstractÐNarrative analysis is well established as a means of examining the subjective experience of those who suer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identi®cation as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable.
International Journal of Environmental Research and Public Health
Liminality was described more than 20 years ago as a major category explaining how cancer is experienced. Since then, it has been widely used in the field of oncology research, particularly by those using qualitative methods to study patient experience. This body of work has great potential to illuminate the subjective dimensions of life and death with cancer. However, the review also reveals a tendency for sporadic and opportunistic applications of the concept of liminality. Rather than being developed in a systematic way, liminality theory is being recurrently ‘re-discovered’ in relatively isolated studies, mostly within the realm of qualitative studies of ‘patient experience’. This limits the capacity of this approach to influence oncological theory and practice. In providing a theoretically informed critical review of liminality literature in the field of oncology, this paper proposes ways of systematizing liminality research in line with a processual ontology. In so doing, it a...
A meta-synthesis of studies of patients’ experience of living with terminal cancer
Health Psychology, 2018
Objective: The aim of this research was to produce a synthesis of phenomenological studies of the experience of living with the awareness of having terminal cancer in order to gain a more complete understanding of the parameters of this experience. Methods: This research used metasynthesis as a method for integrating the results of 23 phenomenological studies of the experience of living with the awareness of having terminal cancer published between 2011 and 2016. Results: The metasynthesis generated 19 theme clusters which informed the construction of four master themes: trauma, liminality, holding on to life and life as a cancer patient. Each master theme captures a distinct experiential dimension of living with the awareness of having terminal cancer. Each dimension brings with it significant and distinctive psychological challenges. Conclusion: The results from the present metasynthesis suggest that the experience of living with the awareness of having terminal cancer is a multi-dimensional experience which patients actively negotiate as they search for ways in which they can rise to the psychological challenges associated with it. A better understanding of the parameters of this experience can help health care professionals provide appropriate support for this client group.
The liminality of palliative care
Sites: a journal of social anthropology and cultural studies, 2010
This paper discusses the application of the anthropological concept of liminality to narratives of New Zealanders living in the community with life threatening conditions, both malignant and non-malignant. This qualitative research aimed to explore the ways in which people diagnosed with life-threatening conditions managed their life world. Using a narrative approach, 13 participants, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed. Analysis was thematic and interpretive within a phenomenological framework. Receiving a diagnosis with a poor prognosis heralded significant life changes for patients and their families and precipitated a transition from an identity as a productive member of society and community participant to that of patient living with an uncertain future. Conceptualising end-of-life care in terms of liminality offers a powerful framework for understanding the experiences and challenges faced by people with life threatening conditions and their families.
This paper discusses the application of the anthropological concept of liminality to narratives of New Zealanders living in the community with life threatening conditions, both malignant and non-malignant. This qualitative research aimed to explore the ways in which people diagnosed with life-threatening conditions managed their life world. Using a narrative approach, 13 participants, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed. Analysis was thematic and interpretive within a phenomenological framework. Receiving a diagnosis with a poor prognosis heralded significant life changes for patients and their families and precipitated a transition from an identity as a productive member of society and community participant to that of patient living with an uncertain future. Conceptualising end-of-life care in terms of liminality offers a powerful framework for understanding the experiences and challenges faced by people with life threatening conditions and their families.
People with advanced cancer: The Process of Living Well with Awareness of Dying.
Qualitative Health Research, 2020
Free open access: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7307002/ Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n = 22) that refines the theory of “Living Well with Chronic Illness” for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that “I am dying.” Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.
In life and in death: the story of people living with metastatic cancer.
In life and in death: the story of people living with metastatic cancer, 2018
Advances in the treatment of metastatic cancers such as melanoma enable patients to live for many years. However, melanoma patients are under constant threat of a recurrence or a new growth, are under intensive follow-up, and must avoid exposure to the sun. These factors engender anxiety, constant fear of recurrence, and a reduction in routine activity, thus requiring patients to develop mechanisms for coping simultaneously with the illness and the threat of death. This study uses content analysis of the documentation of a support group for metastatic melanoma patients to examine how they cope with both. The findings suggest that they are able to cope with both simultaneously. However, perhaps because they recognise their total lack of control over the illness, they exercise control in how they cope with death. The findings suggest that support groups like the one documented in this article could serve as sheltered and effective therapeutic spaces for coping with the threat of death.
Existential and bioethical aspects of palliative care in cancer
Revista Bioética
Severe illness places individuals in direct confrontation with death, an element of the experience of living. A total of 12 interviews were conducted with adults undergoing palliative care in cancer, and investigated by phenomenological analysis, describing the axes of meaning produced in the narratives. Analysis of the ways individuals (re)organize their life projects based on illness and finitude identified three dimensions: spirituality/religiosity; life in the family; relationship with death. The meaning patients attribute to existential trajectories and the relationship established with their life project are essential for treatment adherence and coping with death. Resignifying life, illness and death can relieve suffering and help patients give meaning to the time left. Such questions help us reflect on the bioethical dimension of palliative care and enable planning in this modality of care.