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- W168377095 abstract "Background: Experiences reported in internet narratives,as opposed to those appearing in other media, are morelikely to be written as they occur and rarely undergo reflectiveeditorial processes. Hence, they are often written with adegree of poignancy and intensity not found in other media.Objectives: To determine: 1) What PALS/PwMND writeabout their illness experiences; 2) Why PALS/PwMNDwrite about their illness experiences; 3) What the benefitsof writing are.Methods: The process of identifying internet narratives bypeople with ALS/MND has been reported previously (1).This process ultimately generated a sample of 64 electronicnarratives, which were subjected to a content andthematic analysis, aided by Nvivo software.Results: A number of key themes emerged. Mostnarratives contain a strong emphasis on regular conditionupdates, often including tips on how to manage particularsymptoms and disabilities. Several authors, despiteincreasing loss of function, stress the importance of whatcan still be done, rather than what has been lost. Manyrefer to this as ‘‘living with, not dying of ALS/MND’’.There is a sense that authors have remained ‘whole’ intheir thoughts, despite their physical deterioration.Frequent comments are made about the impact on andchanges to relationships with others, usually partners/spouses and referred to as their ‘‘loss of life’’. There arenumerous reports of searches for alternative and complementarytherapies, which help to provide a sense ofpersonal control in a life that is otherwise ‘‘out of control’’ and generates a feeling that they are doing something forthemselves when conventional medicine has little to offer.Most authors display altruistic motivation for writing; theyshare their experiences (including the testing of unproventreatments) and knowledge of the disease to lessen theburden on others. They provide resources for others, interms of advocacy, information and support; several raiseawareness and educate, many inspire, offer hope andprovide an example to other sufferers of how to cope withthe diagnosis of ALS/MND.Authors view the narrative writing process as therapeutic,and for some, helping to remove the final barrier toadmitting their diagnosis by ‘‘going public’’. Readers reportbeing comforted, supported and enlightened. Publishing onthe internet provides an opportunity to communicate withother PALS and reduce isolation. By being visible, authorsact as a beacon for others and a source of invaluableinformation for patients, carers and health professionals.Discussion and conclusions: Illness narratives enableindividuals to document how illness has impacted on theirlives and the lives of those closest to them. The electronicnarratives of illness identified in this study comprise a richsource of data about issues which people with ALS/MNDregard as important." @default.
- W168377095 created "2016-06-24" @default.
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- W168377095 date "2005-01-01" @default.
- W168377095 modified "2023-10-18" @default.
- W168377095 title "Personal Experiences Of Living With ALS/MND: Illness Narratives Posted On The Web" @default.
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