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Co-designing Resources for Knowledge-Based Self-reflection for People Living with Parkinson’s Disease to Better Enable Independent Living

Lookup NU author(s): Professor Camille CarrollORCiD


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© 2022, The Author(s), under exclusive license to Springer Nature Switzerland AG.Parkinson’s disease (PD) is a complex progressive neurodegenerative disease. Individuals experience PD in a variety of ways, leading to difficulty in diagnosis, acceptance and on-going management. Service provision is complex and varied depending on provider, often with a lack of ‘joined up’ provision between acute hospital care and community care. This project utilised a participatory design methodology to identify patient and provider needs for PD services in the South West Peninsula (UK). A co-design approach was then used to develop tools, resources and service structures to meet these needs. The application of co-design in healthcare settings is fraught by challenges of power dynamics between healthcare professionals and ‘patients’. This can create difficulties in eliciting the ‘voice’ of the patient, or in facilitating their genuine engagement or agency in the process. Specific features of our co-design process sought to address these issues. The tools and resources resulting from this process aimed to facilitate independent living for people with PD, yet importantly to enable them to do so from an informed position, understanding complex medical knowledge in the context of their own personal life and priorities. As such, the resources intended to facilitate both the mobilisation of complex knowledge and self-reflection. The final resource pack has recently entered a feasibility trial of 150 people living with PD.

Publication metadata

Author(s): Langley J, Partridge R, Ankeny U, Wheeler G, Carroll C

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: 10th UNIDCOM/IADE International Conference Senses and Sensibility 2019

Year of Conference: 2019

Pages: 237-251

Print publication date: 14/01/2022

Online publication date: 13/01/2022

Acceptance date: 02/04/2019

Publisher: Springer Nature


DOI: 10.1007/978-3-030-86596-2_18

Notes: Proceedings titled Developments in Design Research and Practice : Best Papers from 10th Senses and Sensibility 2019: Lost in (G)localization

Library holdings: Search Newcastle University Library for this item

Series Title: Springer Series in Design and Innovation

ISBN: 9783030865955