Lesley Axelrod

Motivating mobility: designing for lived motivation in stroke rehabilitation

How to motivate and support behaviour change through design is becoming of increasing interest to the CHI community. In this paper, we present our experiences of building systems that motivate people to engage in upper limb rehabilitation exercise after stroke. We report on participatory design work with four stroke survivors to develop a holistic understanding of their motivation and rehabilitation needs, and to construct and deploy engaging interactive systems that satisfy these. We reflect on the limits of motivational theories in trying to design for the lived experience of motivation and highlight lessons learnt around: helping people articulate what motivates them; balancing work, duty, fun; supporting motivation over time; and understanding the wider social context. From these we identify design guidelines that can inform a toolkit approach to support both scalability and personalisability.

A design framework for a home-based stroke rehabilitation system: Identifying the key components

We present a design framework for a sensor-based stroke rehabilitation system for use at home developed through the analysis of data collected from a series of workshops. Participants had a variety of backgrounds and included people living with stroke and health professionals who work with them. Our focus in these workshops was to learn more about the social context around stroke care, to share early project ideas and develop a design framework for developing systems. In this paper we present a detailed analysis of participant responses and use this analysis to draw specific conclusions about the components and configuration that we believe should be in future systems.

Workloads of Parkinson's specialist nurses: implications for implementing national service guidelines in England

Aims: Recent guidelines for the care of people with Parkinson’s disease within the British National Health Service envisage a wider role in the community for Parkinson’s specialist nurses. A national survey was conducted to explore current nurse caseloads and capacity for expansion.

Rehabilitation centred design

Stroke is a significant cause of disability, and is predicted to become a greater burden as population demographics shift. Research suggests that the completion of rehabilitation exercises can considerably improve function in damaged limbs, yet these exercises can be both boring and frustrating for patients to complete at home. New technologies create possibilities to support rehabilitation in motivating and entertaining ways, and, in this paper, we present a case study that illustrates the work of designing such technologies for a single user. Participation in this case study has highlighted some interesting tensions between designing for rehabilitation and designing for the user.

Disease-specific training in Parkinson’s disease for care assistants: a comparison of interactive and self-study methods

Objective: To compare two approaches to providing training to care assistants in Parkinson’s disease. Design: Pragmatic parallel arm controlled trial. Setting: Training either by an interactive training day at a local medical education establishment or self study. Subjects: Care assistants recruited from local health and social care providers. Interventions: The content of both interventions was similar, covering causes, symptoms, diagnosis of Parkinson’s disease, multidisciplinary management, mobility, communication, swallowing, and involving 5 hours of study time. Main measures: Knowledge about Parkinson’s (assessed by true/false quizzes and identifying ‘four facts’ about Parkinson’s) immediately post training and six weeks later; views on training methods of care assistants and employers/managers. Results: Thirty-seven employers nominated 100 care staff who were allocated to interactive training (49) and self study (51). Training completion rates (retained to six-week follow-up) were lower for self study (42.1% vs. 83.7% training day). There were no significant differences between groups on quiz or ‘four facts’ scores at baseline or six-week follow-up. Immediately post training, the self-study group (with access to written materials) had significantly higher quiz scores than the training day group (no access to materials at test). Within-group comparisons showed improvements post training. Although interactive training may be preferred, obtaining release from duties can be problematic. Conclusions: Both approaches have similar effects on knowledge of care assistants without prior specific training. Providing a variety of approaches will cater for all preferences. The findings may be generalizable to training the care workforce for other specific roles.