Unstable terminality
Negotiating the Meaning of Chronicity and Terminality in Motor Neurone Disease
Dados Bibliográficos
| ID | 2248902 |
|---|---|
| Autores | Sverre Vigeland Lerum (Institute of Health and Society University of Oslo Norway), Kari N Solbrække (0000-0003-2684-5397, University of Oslo), Trygve Holmøy (0000-0002-2529-5664, Institute of Clinical Medicine University of Oslo Norway), Jan C Frich (0000-0001-9079-7508, Institute of Health and Society University of Oslo Norway) |
| Ano | 2015 |
| Volume | 37 |
| Fascículo | 1 |
| Páginas | 81-96 |
| Data de publicação | 2015-01-01 |
| Peer Reviewed | Sim |
| Open Access | Sim |
| Tipo | ARTICLE |
| Periódico | Sociology of Health & Illness (JOURNAL) |
| Identificadores do periódico | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Editora | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.12182 |
| PMID | 25601066 |
| OpenAlex | W1974842069 |
| Idioma | EN |
| Citações recebidas | 6 |
| Referências citadas | 22 |
This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome
Ambiguity · Amyotrophic lateral sclerosis · Disease · Meaning (existential · Motor neurone disease · Negotiation · Pathology · Political science · Psychiatry · Psychological intervention · Psychotherapist · Qualitative research · Scope (computer science · Sociology · Amyotrophic Lateral Sclerosis Research · Law · Medicine · Psychology
Asylum seekers’ experiences of participatory barriers in the educative pre-integrational programmes
“If I accept it is all a symptom, I won't be able to do my job”
The nebula of chronicity
Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare
A stage of limbo
Living with motor neurone disease
The Logic of Care
Disrupted Lives
Sorting Things Out
Unending Work and Care
Sudden illness and biographical flow in narratives of stroke recovery
Being differently the same
All in the same boat'? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND)
Normal disruption
The Body Multiple
Biographical disruption, abruption and repair in the context of Motor Neurone Disease
Chronic illness as biographical disruption
The genesis of chronic illness
Loss of self
Illness in the Context of Older Age
| Obras citantes distintas | 6 |
|---|---|
| Citações por ano | 0,67 |
| Intervalo de citações | 2017 - 2026 (10) |
| Velocidade de citação | current |
| Altamente citado | Não |
| Tipos de citação | Neutras: 6 |