Parkinson's
CAPS research into Parkinson's.
Chief Investigator: Professor Anette Schrag and Professor Kate Walters
Start date: 5-year study programme
Main aim or mission of the project:PD-Care is a five-year study programme, and is funded by the National Institute for Health Research (NIHR). The study aims to develop and evaluate a new and practical way of personalising and improving care for people with Parkinson’s Disease (PD) living at home.
BackgroundThis study aims to improve the care of people with Parkinson's who are living at home. It will do this by developing an effective new resource (My PD-Care Toolkit), which will have online and paper versions. The aim is that the toolkit will help people with Parkinson's to become more involved in the management of their care, so that care is more tailored to their individual needs. The toolkit will include information about how to keep healthy and independent, guidance on what to do when problems arise and where to access resources, and how to manage Parkinson’s with the help of health care professionals.
The study will also develop training for health care professionals in the use of the new toolkit so that they can better support people with Parkinson’s, and their partners/carers.
To achieve this, the research team will work closely with a group of people affected by Parkinson’s to:
• Review the existing research and management guidelines for Parkinson’s, and the self-management tools used in Parkinson’s and similar conditions
• Talk to people with Parkinson’s, their partners/carers and health care professionals about their experiences and goals for Parkinson’s care and self-care
• Bring together the expertise of health care professionals, people with Parkinson’s and their partner/carers to jointly design a self-management toolkit and a training programme for professionals
• Test whether this toolkit is practical and acceptable, and make any necessary adjustments
• Conduct a large study (randomised controlled trial) to test whether it makes a positive difference to the health and lives of people with Parkinson’s. Also to test how cost-effective the approach would be if adopted by the NHS and its partners
• Promote the uptake and implementation of the toolkit.
It is hoped that the My PD-Care Toolkit will reduce disability and hospital admissions and will improve quality of life, and help health care professionals in the delivery of the best care.
Collaborators:Homerton University Hospital NHS Foundation Trust- Catherine Atkinson
- Mrs Rachel Leuw
- Mrs Beverley Maydon
Funded by:
This study/project is funded by/supported by the National Institute for Health Research (NIHR) [Programme Grants for Applied Research (Grant Reference Number: RP-PG-1016-20001)]
Contact details:
Joy Read – Study Co-ordinator
Email: pd-care@ucl.ac.uk
Phone no: 0208016 8182
Led by PhD candidate: Hannah Kisley
Primary supervisor: Prof Kate Walters
Dates: February 2025-January 2028
Funder: NIHR Three Schools’ Dementia
Overview
The aim of this PhD is to explore the decision-making experiences of family carers supporting someone with Parkinson’s disease dementia (PDD), and to co-design a tailored decision aid that supports informed, value-based decisions. The project focuses on understanding the types of decisions made, the factors that influence them, the support needed, and how this support can be most effectively delivered.
This PhD is structured across three work streams:
Work Stream 1: Systematic Review
WS1 involves a systematic review of qualitative research exploring decision-making in the context of advanced Parkinson’s disease, and Parkinson’s disease dementia. The review focuses on the perspectives of informal carers, healthcare professionals, and individuals living with these conditions. It aims to identify the key decisions faced in advanced illness, influencing factors, and gaps in support.
Work Stream 2: Qualitative Interviews
WS2 will comprise in-depth semi-structured interviews with informal carers, individuals living with Parkinson’s disease dementia, and health and social care professionals. This work will build upon the review findings to deepen understanding of decisions made, how these decisions are approached in practise, and the factors shaping these decisions.
Work Stream 3: Co-design of a Decision Aid
Findings from the review and interviews will inform a series of co-design workshops involving informal carers, people living with PDD, and professionals. These workshops will be used to collaboratively develop a prototype decision aid to support value-based, informed decision-making in the context of Parkinson’s disease dementia.