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 selfmanagement. 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 selfmanagement support, incorporating accessibility for people with aphasia. In the highly medicalised field of stroke care, rigour is mainly informed by biomedical experimental research paradigms. Interpretations of value are often grounded in assumptions of 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 reflecting on 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.

A survey of cognitive–communication difficulties following TBI: are families receiving the training and support they need?

“…Involving individuals following TBI and their families in the content and design of future CPT programmes will ensure the needs of all parties are met. This co-design model has proven successful in recent research with people with aphasia (Kulnik et al 2019).…”

Using intervention mapping to develop and facilitate implementation of a multifaceted behavioural intervention targeting physical activity and sedentary behaviour in stroke survivors: Physical Activity Routines After Stroke (PARAS): intervention development study

“…There is an expectation within self-management in stroke and at a governmental level that person-held experience is incorporated into healthcare intervention design (Kulnik et al, 2019 ). Early engagement with stroke survivors and HCPs during the intervention development process was a key strength of this study, which can potentially enable future implementation, with those taking part in the process becoming champions for the intervention (Clarke et al, 2017 ).…”

Acceptability and deliverability of an auditory rhythmical cueing (ARC) training programme for use at home and outdoors to improve gait and physical activity post-stroke

“…It is important that intervention design incorporates the voices of patients and the public from conception to dissemination, implementation and impact [ 28 ]. User input has been shown to increase the probability of a successful design and this approach has been used effectively within stroke studies [ 29 ]. In our study, user involvement assisted with the selection of an appropriate metronome and resulted in iterative development of handouts and videos to improve content.…”