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 scenariobased design probes to facilitate participation of People Living with Lymphoedema (PLWL) early in the design process. Lymphoedema is a chronic condition requiring a cumbersome everyday management routine. Selfmanagement support is necessary to increase quality of life, and decrease complications and hospitalisation. However, consistent practice of selfmanagement 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.

Rowing towards the shore: coping strategies in males living with lymphoedema

“…They emphasised the crucial role of dedicated professionals in inspiring them to sustain physical activity. Addressing non-adherence to treatment can be accomplished by raising awareness that both time and effort are essential for the treatment to produce positive outcomes [7]. The feedback provided by professionals is also vital, as it can boost hope among lymphoedema patients [3].…”

“…This underscores the need to explore the coping strategies of persons with lymphoedema, especially when professional knowledge and support may be lacking. Generating such insights are crucial for a healthcare system that aims to deliver high-quality, person-centered care, amid the financial challenges of a rising number of lymphoedema cases [7].…”