Identifying how people with MNDIALS talk about living through their illness: A narrative study to enhance self-management

Brown, J.B. and Addington-Hall, J. (2007) Identifying how people with MNDIALS talk about living through their illness: A narrative study to enhance self-management. 18th International Symposium on Amyotrophic Lateral Sclerosis and Motor Neuron Diseases (ALS/MND-2007), Toronto, Canada. 01 - 03 Dec 2007.

Abstract

Background: There is little known about how people live or manage coping with motor neurone disease or amyotrophic lateral sclerosis, (MND/ALS) which is essential knowledge for developing approaches to enhance quality of life and patient self-management. This study used narrative research methods to explore how patients with MND/ALS talk about living and coping with this disease. Narrative research, whereby people who are ill are encouraged to tell their stories, can elucidate issues previously overlooked in biomedical approaches to disease management. One approach to classifying illness narratives involves identification of storylines or ‘plots’. This paper presents four ‘plots’ which were identified and developed into a framework of narrative styles which may be helpful for patients, family care-givers and professionals to enhance quality of care and patient self-management.
Objectives: 1) To explore patient experiences of living and coping through MND/ALS; 2) to ascertain how people talk about living and coping with MND/ALS
Methods: The study involved a series of longitudinal narrative case studies. Thirteen patients were recruited through purposeful sampling. Six rounds of in-depth narrative interviews were conducted every three months over an eighteen month period. A narrative thematic framework approach (1,2) was developed which takes into account an entire story and focuses on its form to identify narrative themes. This approach is responsive to emergent issues allowing construction and revision of the themes and the developing framework as new and emergent themes are noted and added. Results are summarised in a final thematic frame and also presented with illustrative quotations relating to the themes.
Results: A framework of four narrative styles was identified and the styles named fracturing, sustaining, preserving and enduring. Some participants presented a kaleidoscopic interchange of the four narrative styles whereas others presented a consistent style throughout their experience.
Discussion: Identification of patient narrative styles offers unique insight into patients’ approaches and responses to coping with MND/ALS. It is suggested that knowledge of the narrative styles may be helpful for patients, family caregivers and professionals as a framework for understanding patient approaches to living with a life-limiting illness which may enhance patient self-management and quality of life.

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