A gift from experience: co-production and co-design in stroke and self-management

Abstract

There is increasing emphasis on co-production and co-design of healthcare, for example, the co-design of resources to support people with stroke in self-management. Limited accessibility of materials for people with aphasia (difficulty producing and/or understanding language) is a topical issue. In this paper, we describe our experiences of working with people with stroke and rehabilitation professionals to co-design a resource (book) for stroke self-management support, incorporating accessibility for people with aphasia. In the highly medicalized field of stroke care, rigour is mainly informed by biomedical experimental research paradigms. Interpretations of value are often grounded in assumptions of the biological and social norm. In contrast, our work was guided by ‘designerly’ conceptualizations of rigour and value. We considered design ‘things’ (objects/artefacts) versus ‘Things’ (a forum for people to come together); the book as a boundary object; reciprocity throughout the co-design process; and a pragmatic premise of participatory design. Stroke survivors gifted their stories and experiences to fill the pages of the book. In our work, we have made transparent how we ‘do’ co-design. We have demonstrated rigour through local accountability. There is value in the book’s ability to connect people with stroke and support an encouraging and empowering self-management dialogue.

Keywords:

• Aphasia
• co-design
• reciprocity
• self-management
• stroke

Acknowledgements

We are grateful to the stroke survivors and their family members who offered content for the book – their stories and experiences make the book. We also thank the stroke survivors and health professionals who contributed to the co-design in an advisory role. We thank Lucinda Hollinshead and Marilyn George for contributions to the project and helpful comments on this article.

Disclosure statement

Fiona Jones is founding director and CEO of Bridges Self-Management Limited, a social enterprise conducting training, research and development in self-management support in health and social care. Heide Pöstges is Director of Innovation and Training at Bridges Self-Management Limited, and Stefan Tino Kulnik is a former employee. Rosemary Townsend is CEO of Dyscover Limited, a charity offering long-term support to people with aphasia. Paul Micklethwaite declares no conflict of interest.

Additional information

Funding

This research and Stefan Tino Kulnik were supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South London (NIHR CLAHRC South London) at King’s College Hospital NHS Foundation Trust. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

Notes on contributors

Stefan Tino Kulnik

Stefan Tino Kulnik is a physiotherapist and Postdoctoral Researcher at Kingston and St George’s. He conducts applied clinical research, using mixed methods and participatory approaches.

Heide Pöstges

Heide Pöstges is Director of Innovation and Training at Bridges Self-Management Limited. She develops, facilitates and evaluates training and improvement programmes in health and social care.

Rosemary Townsend

Rosemary Townsend is CEO of Dyscover Limited, a charity offering long-term support to people with aphasia.

Paul Micklethwaite

Paul Micklethwaite is a design educator, researcher and practitioner. He leads the MA Sustainable Design programme and is Director of Research in the Design School at Kingston University.

Fiona Jones

Fiona Jones is founding director and CEO of Bridges Self-Management Limited, a social enterprise conducting training, research and development in self-management support in health and social care.