Co-designing system improvement for Atypical Parkinsonisms
Research type
Research Study
Full title
Co-designing improvements to systems of care and support to tackle inequality of access for people with Atypical Parkinsonian Syndromes: combining a system approach and realist review to inform a discrete choice experiment.
IRAS ID
347277
Contact name
Annalisa Casarin
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
1 years, 4 months, 0 days
Research summary
People with rare conditions may receive the specialist care and support they need and have better outcomes, but many do not. This is true for people with Atypical Parkinsonian Syndromes (APS) that cause symptoms like stiffness, poor balance, and changes in mood, thinking, vision, ability to eat and communicate. They become reliant on family and carers very quickly, needing clinical care and access to services aware of their condition to maintain their function and quality of life for as long as possible and to avoid admission to hospital. This study aims to improve context-specific understanding of: what aspects of current provision of health and social care services influence inequalities of access for people with APS; how and in what way current configuration of services impact people’s ability to live as well as possible with their condition; and how can service provision be improved within the limitations of current systems.
Methods: we will conduct a synthesis of policies, guidelines and services. We will ask 24 people and their carers to share their experience of access and navigation of the current system. We will also ask professionals about barriers and limitations to provide care. We will identify the reasons why people aren’t getting the care they need. This will help us to create a map of networks and services, guided by a system design approach. We will present this map to participants and collaborators in two workshops. We will find possible solutions, based on the best examples, and create a questionnaire for a future study to ask a larger and diverse group which solutions they prefer. After, we will co-design a new model a follow-on evaluation of strategies for use in practice to provide a better service for all.REC name
Wales REC 6
REC reference
25/WA/0299
Date of REC Opinion
28 Nov 2025
REC opinion
Further Information Favourable Opinion