‘Am I fixed, am I better now?’: undergoing MR-guided focused ultrasound for essential tremor: an interpretative phenomenological analysis
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Type
Journal Article
Abstract
Introduction: Essential tremor (ET) is characterised by postural and intentional tremor typically affecting the upper limbs, which can negatively impact functionality and quality of life. Magnetic Resonance-guided Focused Ultrasound (MRgFUS) is a novel and promising non-invasive treatment for ET which offers instantaneous results.
Methods: Using interpretative phenomenological analysis we explored the experience of undergoing MRgFUS in six ET patients as well as their experiences pre- and post-procedure.
Results: One-time, retrospective semi-structured interviews were conducted and six themes emerged: Life pre-treatment: “It’s everyday tasks that get you down” and “Most people who understand, they are okay. Some people aren’t”; MRgFUS: Treatment day: “Going into the unknown” and “There’s no way I was going to press that button”; and Life post-treatment: “One is good. Two is better” and “Am I fixed, am I better now?.”
Discussion: The findings point to a significant period of adjustment associated with living with ET and the effects of undergoing ET MRgFUS treatment. As ET progressed, participants struggled to cope with increasing symptoms and had to develop coping strategies to manage life with ET. The procedure itself was perceived as strange and extraordinary and despite some immediate adverse effects participants were determined to go through with it. Post procedure, all participants reported tremor suppression which was life changing. While some participants still felt burdened by ET, others expressed it took them a while to psychologically adjust to what essentially was their new body. This study has highlighted the need for patients to be supported at all stages of their ET journey.
Methods: Using interpretative phenomenological analysis we explored the experience of undergoing MRgFUS in six ET patients as well as their experiences pre- and post-procedure.
Results: One-time, retrospective semi-structured interviews were conducted and six themes emerged: Life pre-treatment: “It’s everyday tasks that get you down” and “Most people who understand, they are okay. Some people aren’t”; MRgFUS: Treatment day: “Going into the unknown” and “There’s no way I was going to press that button”; and Life post-treatment: “One is good. Two is better” and “Am I fixed, am I better now?.”
Discussion: The findings point to a significant period of adjustment associated with living with ET and the effects of undergoing ET MRgFUS treatment. As ET progressed, participants struggled to cope with increasing symptoms and had to develop coping strategies to manage life with ET. The procedure itself was perceived as strange and extraordinary and despite some immediate adverse effects participants were determined to go through with it. Post procedure, all participants reported tremor suppression which was life changing. While some participants still felt burdened by ET, others expressed it took them a while to psychologically adjust to what essentially was their new body. This study has highlighted the need for patients to be supported at all stages of their ET journey.
Date Issued
2024-02-08
Date Acceptance
2024-01-12
Citation
Frontiers in Neurology, 2024, 15
ISSN
1664-2295
Publisher
Frontiers Media S.A.
Journal / Book Title
Frontiers in Neurology
Volume
15
Copyright Statement
© 2024 Stoycheva, Jameel, Bain, Nandi,
Jones, Honeyfield, Gedroyc and Moore. This
is an open-access article distributed under
the terms of the Creative Commons
Attribution License (CC BY). The use,
distribution or reproduction in other forums is
permitted, provided the original author(s) and
the copyright owner(s) are credited and that
the original publication in this journal is cited,
in accordance with accepted academic
practice. No use, distribution or reproduction
is permitted which does not comply with
these terms
Jones, Honeyfield, Gedroyc and Moore. This
is an open-access article distributed under
the terms of the Creative Commons
Attribution License (CC BY). The use,
distribution or reproduction in other forums is
permitted, provided the original author(s) and
the copyright owner(s) are credited and that
the original publication in this journal is cited,
in accordance with accepted academic
practice. No use, distribution or reproduction
is permitted which does not comply with
these terms
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Published