Research Article
The Lived Experiences of Deep Brain Stimulation in Parkinson’s
Disease: An Interpretative Phenomenological Analysis
Suzette Shahmoon ,
1
Jonathan A. Smith ,
2
and Marjan Jahanshahi
1,3
1
UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Queen Square, London, UK
2
Department of Psychological Sciences, Birkbeck University of London, London, UK
3
e Clinical Hospital of Chengdu Brain Science Institute, MOE Key Lab for Neuroinformation,
University of Electronic Science and Technology of China, Chengdu, China
Correspondence should be addressed to Marjan Jahanshahi; m.jahanshahi@ucl.ac.uk
Received 21 August 2018; Accepted 13 November 2018; Published 3 February 2019
Academic Editor: Jan Aasly
Copyright © 2019 Suzette Shahmoon et al. is is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is
properly cited.
Deep brain stimulation of the subthalamic nucleus (STN-DBS) is an effective treatment for Parkinson’s disease (PD). In this study,
we used an interpretative phenomenological analysis to explore how 10 male people with PD experienced life after STN-DBS
surgery. Two themes emerged. e first, “Healed and relieved: all that glitters is not gold,” highlights the benefits and the personal
“costs” of surgery. e second, “e change within: new interpretations of the present and future unfold,” explores how patients
reinterpreted their lives as individuals and members of society in the present and as they face their future. Relief, gratitude,
disappointment, and the need for social support are expressed as well as a new appraisal of values and the future. STN-DBS alters
the life course of people with PD, and this study provides new insight into psychological and social issues that surgery raises for the
patient and their family system. ese psychosocial issues should be taken into account when preparing the patient and their
family for surgery or supporting them postoperatively.
1. Introduction
Parkinson’s disease (PD) is a progressive, chronic disorder
characterized by tremor, rigidity, muscle stiffness, and gait
problems [1]. When symptoms of PD become harder to treat
with medication and medication-induced side effects
emerge, deep brain stimulation (DBS) of the subthalamic
nucleus (STN) is an effective treatment for the motor
symptoms of moderate/severe PD [2–4].
e aim of surgery is to improve the quality of life (QoL)
of people with PD by improving the motor symptoms [5].
erefore, current STN-DBS literature focuses heavily on
outcome measures for improvement of the motor symptoms
such as the Unified Parkinson’s Disease Rating Scale and
quality of life such as the PDQ39 [6]. ese scales have been
useful in quantifying the positive changes heralded by
surgery but are not sensitive enough to show how these
remarkable improvements affect the lived experience of the
person with PD. ey do not show how the changes pro-
duced by DBS impacts on experiential and inner life of the
patients, which can be evaluated through qualitative re-
search. Qualitative studies can inform professionals on how
to better prepare individuals and their families for surgery
and how to support them better after the operation.
To date, only a few qualitative studies have assessed the
lived experience of people with PD after DBS surgery. Most
of the studies have focused on psychosocial adjustment (for
review, see [7, 8]), the experience of surgery [9], or the relief
surgery brings [10, 11].
In these studies, the patients interviewed have com-
mented on how DBS has changed the way they feel about
themselves, with some feeling dehumanized by the
implanted electrodes and stimulating device [12–14]. Others
found DBS had removed their impetus to live, as they no
longer had a disease to fight [15, 16]. Marital breakdown
occured as a result of surgery due to spouses feeling liberated
Hindawi
Parkinson’s Disease
Volume 2019, Article ID 1937235, 7 pages
https://doi.org/10.1155/2019/1937235