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Abstract

Understanding the Importance of Illness Narratives in People with Multiple Sclerosis who Participated in an Exercise Rehabilitation Trial; A Qualitative Study

Objectives: To understand how illness narrative master plots may be expressed and associated together and to determine how stories are used to demonstrate the psychological benefits of exercise rehabilitation.

Design: A subtle realist paradigmatic position was assumed which utilised a hermeneutic phenomenological methodology.

Setting: Two community centres within the UK.

Participants: A purposive sample of 10 individuals with MS (7 female, 3 male) were included. Individuals were eligible if: (a) they had undertaken at least 8 weeks of an exercise rehabilitation trial, (b) if they were older than 19 years, and (c) could understand English.

Intervention: Participants had undertaken at least 8 weeks from a 12-week cycle ergometer randomised control rehabilitation trial. The trial varied the exercise intensity experienced by participants.

Main Outcome Measure: A single semi-structured interview with six sub-sections that included elements related to emotional regulation. A categorical content narrative analysis was undertaken. The analysis was supplemented by integrating findings from past research studies.

Results: Two themes were identified: (1) Identification of a model of narrative expression. This model establishes how narrative master plots may be associated with each other and broadly represent coping or succumbing responses to the experiences of MS. The transition in expression of master plots is detailed and associated with psychological adaptation to illness (2) The role of physical activity in contributing to psychological benefits of exercise rehabilitation identified through narrative expression. This research highlighted a dominant process of narrative master plot expression from detective, to didactic and then heroic master plot.

Conclusion: The research has developed a new model for understanding the cycles related to dominant master narrative plots. Further work is needed to establish these results and future studies are needed to establish if there is feasible way to use illness narrative within clinical environments.

Trial registration: Trial registration number: ISRCTN89009719.

Author(s):

Andy Soundy, Helen Dawes, Johnny Collett, Shelly Coe, Sheeba Rosewilliam

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