READ ME File For 'Dataset in support of the University of Southampton thesis 'Parkinson's Disease Life Study - 
Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers'.

Dataset DOI: 10.5258/SOTON/D2484

Qian Yue Tan, University of Southampton 0000-0001-8317-7204

This dataset supports the thesis entitled 
AWARDED BY: Univeristy of Southampton 2023


This dataset contains:
WP1 - Systematic review data extraction 
This folder contains data extraction from the final 39 articles included in the systematic review. Data related to treatment burden of people with Parkinson's and caregivers were extracted into Microsoft Word and framework analysis using Eton's framework of treatment burden was conducted using NVivo software

WP2 - Interview transcripts
This folder contains anonymised interview transcripts from 9 people with Parkinson's (File name P01-P09) and 8 caregivers (File name C01-C08). Data were imported into Nvivo and analysed using thematic analysis. 

WP3 - Survey spreadsheets
This folder contains anonymised survey data for people with Parkinson's (File name PwP Survey dataset) and caregivers (File name Caregiver survey dataset). Data were exported from Smart Survey platform onto a Microsoft Excel data spreadsheet using standard import routines available within Microsoft Excel for data cleaning. Data were then exported onto IBM SPSS software where data were recoded prior to statistical analysis. 

WP4 - Focus group transcripts 
This folder contains anonymised focus group transcripts (File Name FG1-FG3) for three focus groups. Each file was then imported into Nvivo software and analysed using thematic analysis.  


Date of data collection: June 2021-August 2022

Ethical approval: ERGO approval 62623. NHS Research Ethics Committee approval (21/WM/0058) IRAS ID 277464
All data has been anonymised 



Date that the file was created: June 2023

 











Date of data collection: [June 2021 - August 2022]

Information about geographic location of data collection: 


Related projects/Funders:
NIHR Academic Clinical Fellowship 
NIHR Applied Research Collaboration Wessex PhD Scholarship
ERGO number: 62623
IRAS ID: 277464 

Related publication:
Tan, Qian Yue et al. ‘The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies’. 1 Jan. 2021 : 1597 – 1617
DOI: 10.3233/JPD-212612

Date that the file was created: December 2022