Biographical disruption, abruption and repair in the context of Motor Neurone Disease

Louise Locock; Sue Ziebland; Carol Dumelow

doi:10.1111/j.1467-9566.2009.01176.x

Biographical disruption, abruption and repair in the context of Motor Neurone Disease

Louise Locock
, Sue Ziebland
, Carol Dumelow

University of Oxford

Research output: Contribution to journal › Article › peer-review

120 Citations (Scopus)

Abstract

Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a 'death sentence' and life is already over, which we term 'biographical abruption'. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity.

Original language	English
Pages (from-to)	1043-1058
Number of pages	16
Journal	Sociol Health Illn
Volume	31
Issue number	7
Early online date	29 Jul 2009
DOIs	https://doi.org/10.1111/j.1467-9566.2009.01176.x
Publication status	Published - Nov 2009
Externally published	Yes
Event	British Medical Sociology Conference 2007 - Liverpool, United Kingdom Duration: 6 Sept 2007 → 8 Sept 2007

Bibliographical note

Acknowledgements
Thanks to the MND Association and NHS SDO programme for funding this study, to the members of our expert advisory panel, to all who helped recruit participants, to the editor and anonymous peer reviewers, and most especially to the people with MND and family members who took part. A version of this paper was first presented at the 2007 British Medical Sociology Conference; our thanks to those who took part in the discussion and contributed further ideas. Further analysis and extracts can be found at: http://www.healthtalkonline.org/Nerves_and_brain/motorneuronedisease

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http://www.ncbi.nlm.nih.gov/pubmed/19659736

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title = "Biographical disruption, abruption and repair in the context of Motor Neurone Disease",

abstract = "Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a 'death sentence' and life is already over, which we term 'biographical abruption'. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity.",

author = "Louise Locock and Sue Ziebland and Carol Dumelow",

note = "Acknowledgements Thanks to the MND Association and NHS SDO programme for funding this study, to the members of our expert advisory panel, to all who helped recruit participants, to the editor and anonymous peer reviewers, and most especially to the people with MND and family members who took part. A version of this paper was first presented at the 2007 British Medical Sociology Conference; our thanks to those who took part in the discussion and contributed further ideas. Further analysis and extracts can be found at: http://www.healthtalkonline.org/Nerves\_and\_brain/motorneuronedisease; British Medical Sociology Conference 2007 ; Conference date: 06-09-2007 Through 08-09-2007",

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AB - Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a 'death sentence' and life is already over, which we term 'biographical abruption'. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity.

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Biographical disruption, abruption and repair in the context of Motor Neurone Disease

Abstract

Bibliographical note

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