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

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Part of the Springer Series in Design and Innovation book series (SSDI,volume 17)

Abstract

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.

Keywords

  • Parkinson’s disease
  • Home-based care
  • Co-design
  • Knowledge mobilization
  • Power

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Notes

  1. 1.

    The fifth concept, a media campaign which aimed to ‘mythbust’ common misconceptions around PD, will not be developed further in this project.

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Acknowledgements

With thanks to our design research colleagues (Chris Redford and Helen Fisher) and all our co-design partners from Devon and Cornwall. We wish to acknowledge University Hospitals Plymouth NHS Trust and University of Plymouth, who provided administrative and clinician support for the work. Finally, we also wish to acknowledge funding from Bial Pharmaceutical for the first five workshops and from The Health Foundation and Parkinson’s UK for the subsequent four workshops.

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Correspondence to Joe Langley .

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Langley, J., Partridge, R., Ankeny, U., Wheeler, G., Carroll, C. (2022). Co-designing Resources for Knowledge-Based Self-reflection for People Living with Parkinson’s Disease to Better Enable Independent Living. In: Duarte, E., Rosa, C. (eds) Developments in Design Research and Practice. Senses 2019. Springer Series in Design and Innovation , vol 17. Springer, Cham. https://doi.org/10.1007/978-3-030-86596-2_18

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  • DOI: https://doi.org/10.1007/978-3-030-86596-2_18

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