You are not logged in.

People living with ALS/MND tell the diagnosis story : what happened before they knew

King, S., Duke, M. and O`Connor, B. 2006, People living with ALS/MND tell the diagnosis story : what happened before they knew, in ALS/MND 2006 : Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Abstracts from the 17th International Symposium, Taylor and Francis, [Yokohama, Japan], pp. 35-35, doi: 10.1080/14660820601011862.

Attached Files
Name Description MIMEType Size Downloads

Title People living with ALS/MND tell the diagnosis story : what happened before they knew
Author(s) King, S.
Duke, M.ORCID iD for Duke, M. orcid.org/0000-0003-1567-3956
O`Connor, B.
Conference name International Symposium on ALS/MND (17th : 2006 : Yokohama, Japan)
Conference location Yokohama, Japan
Conference dates 30 Nov.-2 Dec. 2006
Title of proceedings ALS/MND 2006 : Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Abstracts from the 17th International Symposium
Publication date 2006
Start page 35
End page 35
Publisher Taylor and Francis
Place of publication [Yokohama, Japan]
Summary Background: Being told that one has a life threatening disease is shattering, but for some people it comes as a relief, following as it does the years of uncertainty and traumatic experiences that lead to diagnosis. The need to debrief the experience is paramount before the story of living with the disease can be told.
Objectives: The purpose of this paper is to describe the extended and often demoralising process of diagnosis for people with ALS/MND.
Methods: Grounded theory methodology was used to explore the life and world of people diagnosed and living with ALS/MND. Data were collected via in-depth interviews with 25 people with the disease, their stories and photographs, poems and books they identified as important, and field notes. The textual data were analysed using constant comparative analysis. All people who volunteered were included in the study. Many participants with communication challenges worked with the researcher to tell their stories.
Results: Participants recounted the processes they experienced prior to the time when they were finally given a reason for the perplexing behaviour of their bodies. The diagnosis story was revealed as a sequence of: ‘recognizing a problem’, ‘seeking medical help’, ‘being on the diagnostic roundabout’, ‘confirming ALS/MND’, ‘reevaluating life and the future’, then ‘living with ALS/MND’. Consequences included a loss of trust in the competence of the health care system, which had implications for seeking help later when living with the disease.
Discussion: Participant distress seemed to have more in common with the stress linked to post-traumatic stress disorder (PTSD). Participants continued to relive the diagnosis experience in their dreams and daily lives many months after diagnosis, which impacted negatively on their well-being. For this group of people, the diagnostic process itself was the traumatic stressor. It seemed that telling their stories gave them the opportunity to debrief and have their words recorded. Debrief support is recommended whenthe ALS/MND diagnosis is finalized, and continued, to prevent long-term reliving of the diagnostic process.
Conclusion: Health professionals continue to address the issues around the process of giving the ‘bad news’ of ALS/MND. This ‘diagnosis story’ may provide additional guidance in addressing the process so as to limit potential harm and promote well-being for people with the disease and their families.
ISSN 1748-2968
Language eng
DOI 10.1080/14660820601011862
Field of Research 111099 Nursing not elsewhere classified
Socio Economic Objective 920210 Nursing
HERDC Research category E3 Extract of paper
Persistent URL http://hdl.handle.net/10536/DRO/DU:30014749

Document type: Conference Paper
Collection: School of Nursing and Midwifery
Connect to link resolver
 
Unless expressly stated otherwise, the copyright for items in DRO is owned by the author, with all rights reserved.

Versions
Version Filter Type
Citation counts: TR Web of Science Citation Count  Cited 0 times in TR Web of Science
Scopus Citation Count Cited 0 times in Scopus
Google Scholar Search Google Scholar
Access Statistics: 885 Abstract Views, 0 File Downloads  -  Detailed Statistics
Created: Tue, 21 Oct 2008, 14:26:38 EST

Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.