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Patients’ experiences of deep brain stimulation for Parkinson's disease: a qualitative systematic review and synthesis
  1. J Mathers1,
  2. C Rick1,
  3. C Jenkinson2,
  4. R Garside3,
  5. H Pall4,
  6. R Mitchell5,
  7. S Bayliss1,
  8. L L Jones1
  1. 1Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  2. 2Nuffield Department of Population Health, University of Oxford, Oxford, UK
  3. 3European Centre for Environment and Human Health, University of Exeter, Exeter, UK
  4. 4Institute of Clinical Sciences, University of Birmingham, Birmingham, UK
  5. 5Department of Neurosurgery, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  1. Correspondence to Dr J Mathers; j.m.mathers{at}bham.ac.uk

Abstract

Objective To review and synthesise qualitative research studies that have explored patients’ experience of deep brain stimulation (DBS) in advanced Parkinson's disease (PD).

Design Systematic review and meta-synthesis of 7 original papers, using metaethnography.

Setting Studies conducted in Denmark, France and Sweden.

Participants 116 patients who had undergone DBS and 9 spouses of patients.

Results Prior to surgery, the experience of advancing PD is one of considerable loss and a feeling of loss of control. There are significant hopes for what DBS can bring. Following surgery, a sense of euphoria is described by many, although this does not persist and there is a need for significant transitions following this. We suggest that normality as a concept is core to the experience of DBS and that a sense of control may be a key condition for normality. Experience of DBS for patients and spouses, and of the transitions that they must undertake, is influenced by their hopes of what surgery will enable them to achieve, or regain (ie, a new normality).

Conclusions There is a need for further qualitative research to understand the nature of these transitions to inform how best patients and their spouses can be supported by healthcare professionals before, during and after DBS. In assessing the outcomes of DBS and other treatments in advanced PD, we should consider how to capture holistic concepts such as normality and control. Studies that examine the outcomes of DBS require longer term follow-up.

  • Deep Brain Stimulation
  • QUALITATIVE RESEARCH
  • Patient experience

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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