RT Journal Article
SR Electronic
T1 Patients’ experiences of deep brain stimulation for Parkinson's disease: a qualitative systematic review and synthesis
JF BMJ Open
JO BMJ Open
FD British Medical Journal Publishing Group
SP e011525
DO 10.1136/bmjopen-2016-011525
VO 6
IS 6
A1 J Mathers
A1 C Rick
A1 C Jenkinson
A1 R Garside
A1 H Pall
A1 R Mitchell
A1 S Bayliss
A1 L L Jones
YR 2016
UL http://bmjopen.bmj.com/content/6/6/e011525.abstract
AB 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.