Uncovering self-management needs to better design for people living with lymphoedema

Abstract

This paper reports on the application of design-based tools used to uncover the needs of people living with a chronic condition. It was built on increasing rhetoric calling for greater involvement of patients in the creation of appropriate support mechanisms and presents a means to achieve this using design approaches and tools. The paper presents the development and use of scenario-based design probes to facilitate the participation of People Living with Lymphoedema (PLWL) early in the design process. Lymphoedema is a chronic condition requiring a cumbersome everyday management routine. Self-management is necessary to increase quality of life and decrease complications and hospitalisation. However, consistent practice of self-management among PLWL is low and the need to improve support is recognised. This research explored how PLWL’s transitions towards becoming experts of their condition might be supported. Literature describing the lymphoedema experience was systematically investigated from a behavioural perspective to develop scenario-based probes. These probes provided rich insights by facilitating the envisioning of alternative futures to self-management support with interview participants with lymphoedema. To inform the design of better support for chronic conditions, the stages and components of behaviour change for lymphoedema self-management and the associated support needs are presented.

Keywords:

• Self-management
• lymphoedema
• chronic conditions
• user-centred design
• scenario-based design probes

Notes

Acknowledgements

The authors would like to thank the people living with lymphoedema who participated and shared their experience in the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 Ethical approval was given for the study following Cardiff Metropolitan University’s procedures. All participants provided informed written consent prior to interview participation.

2 Pseudonyms were assigned to participants to keep their identity anonymous.

Additional information

Notes on contributors

Teksin Kopanoglu

Teksin Kopanoglu is a PhD Candidate at PDR, Cardiff Metropolitan University. Her work focuses on exploring better ways to support people living with chronic conditions by design. Previously she worked as a product designer in industry for around ten years.

Katie Beverley

Dr Katie Beverley is a Senior Research Officer and Ecodesign lead at PDR, Cardiff Metropolitan University. Her work focuses on the combination of user-centred and sustainable design strategies to aid the development of products, services and business models that meet the needs of users whilst being better for the environment.

Dominic Eggbeer

Prof. Dominic Eggbeer has fifteen years’ experience of Research and Innovation projects that aim to improve design performance within subjects around Patient Specific Medical Device Design, User Centred Design and Advanced Manufacturing Technologies.

Andrew Walters

Prof. Andrew Walters has eighteen years’ experience of Research and Innovation projects that aim to improve design performance on subjects around Product Design, Service Design, User Centred Design, Design Management and Design Policy.