"Living in Liminality" The lived experience of fatigue in French patients with Multiple Sclerosis
Ims, Julian Knoff (2023)
Ims, Julian Knoff
2023
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Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:amk-2023051811736
https://urn.fi/URN:NBN:fi:amk-2023051811736
Tiivistelmä
The purpose of this study was to explore the lived experience of fatigue in French patients with Multiple Sclerosis (MS)
Methods: An exploratory qualitative approach was used. Patients with Multiple Sclerosis were invited to participate in an in-depth interview to describe their lived experience of fatigue and five people were purposefully sampled. The interview transcripts were analysed using Reflexive Thematic Analysis by one researcher that produced the themes.
Results: Qualitative data showcased how fatigue affected many aspects of their daily lives, their sense of identity and the social impact of living with an invisible symptom. Participants described that the constant adaptation to fatigue and the lack of understanding from others was a source of secondary fatigue. One overarching theme (OT) and four themes describe different aspects of the experience of fatigue in MS: (OT) Living in Liminality, (1) Fatigue as an entity, (2) The daily Grind, (3) Visible vs Invisible,(4) Identity.
Conclusion: Fatigue in MS has a profound impact on many aspects linked to daily life but also social and other identity aspects. People with invisible symptoms might find themselves socially marginalized, and it can increase suffering. Healthcare professionals could be mindful and acknowledge these aspects as well as the fatigue and help to reduce the negative impact of living in liminality and enhance person-centred care. Further research into these aspects and how to support and help patients navigate uncertainty and fatigue is needed.
Methods: An exploratory qualitative approach was used. Patients with Multiple Sclerosis were invited to participate in an in-depth interview to describe their lived experience of fatigue and five people were purposefully sampled. The interview transcripts were analysed using Reflexive Thematic Analysis by one researcher that produced the themes.
Results: Qualitative data showcased how fatigue affected many aspects of their daily lives, their sense of identity and the social impact of living with an invisible symptom. Participants described that the constant adaptation to fatigue and the lack of understanding from others was a source of secondary fatigue. One overarching theme (OT) and four themes describe different aspects of the experience of fatigue in MS: (OT) Living in Liminality, (1) Fatigue as an entity, (2) The daily Grind, (3) Visible vs Invisible,(4) Identity.
Conclusion: Fatigue in MS has a profound impact on many aspects linked to daily life but also social and other identity aspects. People with invisible symptoms might find themselves socially marginalized, and it can increase suffering. Healthcare professionals could be mindful and acknowledge these aspects as well as the fatigue and help to reduce the negative impact of living in liminality and enhance person-centred care. Further research into these aspects and how to support and help patients navigate uncertainty and fatigue is needed.