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Mapping the experiences and needs of deep brain stimulation for people with Parkinson’s disease and their family members

Published online by Cambridge University Press:  04 March 2019

Jacki Liddle Open the ORCID record for Jacki Liddle [Opens in a new window] ,
Gregory Beazley ,
Louise Gustafsson  and
Peter Silburn
Jacki Liddle*
Affiliation:
Asia Pacific Centre for Neuromodulation, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, Australia School of Information Technology and Electrical Engineering, The University of Queensland, Brisbane, QLD, Australia
Gregory Beazley
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, Australia
Louise Gustafsson
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, Australia
Peter Silburn
Affiliation:
Asia Pacific Centre for Neuromodulation, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, Australia
*
*Corresponding author. Email: j.liddle@uq.edu.au
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Abstract

Background

Deep brain stimulation (DBS) is an effective treatment for the motor symptoms of Parkinson’s disease (PD). The lived experience of people with PD suggests a process of adjustment follows. This study aimed to explore the adjustment and associated education and support needs of people with PD undergoing DBS and their family members across the continuum of the DBS experience.

Method

A structured qualitative description study including semi-structured interviews with people with PD (n = 14), family members (n = 10) and clinicians (n = 11) was conducted to explore lived experiences, needs, perspectives and clinical considerations. Inductive analysis indicated common temporal stages related to undergoing DBS, and the related experiences and needs were mapped.

Findings

Four stages, each with unique needs, emerged: Considering DBS involved needs for peer-based education and realistic, meaningful goal setting; Surgery and Support shifted to clinical support related to the surgery and support for the person and their family around immediate changes experienced; Seeking Stability focused on timely clinical and practical support for the person and family around new changes and challenges to symptoms, behaviours and roles; and Next Steps involved direction and support for reengagement in the self-management of the condition, and current and future changes related to PD.

All participants with PD and their family members in this study indicated that overall their experiences with DBS had led to positive changes in their symptoms and lives. Consideration of different needs at different times in the process may be applied within clinical practice to support adjustment.

Keywords

NeuromodulationtransitionParkinson’s diseasequalitativesupport
Type
Articles
Information
Brain Impairment , Volume 20 , Issue 3 , December 2019 , pp. 211 - 225
Copyright
© Australasian Society for the Study of Brain Impairment 2019 

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