Sue Mawson

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.

Rehabilitation after two-part fractures of the neck of the humerus

We undertook a prospective, controlled trial which compared two rehabilitation programmes for 86 patients who sustained two-part fractures of the proximal humerus. Patients were randomised either to receive immediate physiotherapy within one week (group A) or delayed physiotherapy after three weeks of immobilisation in a collar and cuff sling (group B). At 16 weeks after the fracture, patients in group A had less pain (p < 0.01) and had greater shoulder function (p < 0.001) than those in group B. At 52 weeks, the differences between the groups had reduced. Although group A still had greater shoulder function and less pain, there was no statistical difference when compared with group B. By analysis of the area under the curve, an overall measure up to the 52-week period, group A experienced less pain as measured by the SF36 general health questionnaire and had improved shoulder function. Our results show that patients with two-part fractures of the proximal humerus who begin immediate physiotherapy, experience less pain. The gains in shoulder function persist at 52 weeks which suggests that patients do not benefit from immobilisation before beginning physiotherapy.

Telerehabilitation : enabling the remote delivery of healthcare, rehabilitation and self management.

Telerehabilitation refers to the use of Information and Communication Technologies (ICT) to provide rehabilitation services to people remotely in their homes or other environments. By using ICT, client access to care can be improved and the reach of clinicians can extend beyond the physical walls of a traditional healthcare facility, thus expanding continuity of care to persons with disabling conditions. The concept of telecare, when telerehabilitation is used to deliver services to clients in their homes or other living environments, empowers and enables individuals to take control of the management of their medical needs and interventions by enabling personalized care, choice and personal control. A wide variety of assessment and treatment interventions can be delivered to clients using remote monitoring systems, robotic and virtual reality technologies, and synchronized collaboration with online material. This chapter will present a brief history of telerehabilitation and telecare and offer an overview of the technology used to provide remote rehabilitation services. Emphasis will be given to the importance of human factors and user-centered design in the planning, development, and implementation of telerehabilitation systems and programs. The issue of self-care in rehabilitation and self-management will be discussed along with the rationale for how telerehabilitation can be used to promote client self-care and self-management. Two case studies of real-world telerehabilitation systems will be given, with a focus on how they were planned and implemented so as to maximize their potential benefits. The chapter will close with a discussion of obstacles and challenges facing telerehabilitation and suggestions for ways to promote its growth in use and acceptance.

Measurement in Duchenne muscular dystrophy: considerations in the development of a neuromuscular assessment tool

A review of the measures relating to the monitoring of disease progression in Duchenne muscular dystrophy was undertaken as part of the work of the North Star Clinical Network for Paediatric Neuromuscular Disease Management developing a standardized assessment protocol for ambulant children in the UK. This article outlines the process of identifying possible measures. Detailed consideration has been given to key measures of muscle strength and function. As well as the usual assessment of the validity and reliability of the measures, three key characteristics were identified as necessary to the assessment of scales used in health care: (1) the type of scale used; (2) the clinical significance of the attribute being measured; and (3) the mathematical properties of the data provided. Consideration of such aspects in the early stage of a study facilitates the choice of measures, and the analysis and interpretation of data in the longer term.

Smart self management: assistive technology to support people with chronic disease

We have developed a personalised self management system to support self management of chronic conditions with support from health-care professionals. Accelerometers are used to measure gross levels of activity, for example walking around the house, and used to infer higher level activity states, such as standing, sitting and lying. A smart phone containing an accelerometer and a global positioning system (GPS) module can be used to monitor outdoor activity, providing both activity and location based information. Heart rate, blood pressure and weight are recorded and input to the system by the user. A decision support system (DSS) detects abnormal activity and distinguishes life style patterns. The DSS is used to assess the self management process, and automates feedback to the user, consistent with the achievement of their life goals. We have found that telecare and assistive technology is feasible to support self management for chronic conditions within the home and local community environments.

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.

Developing and testing a telerehabilitation system for people following stroke: issues of usability

This paper describes user testing of a technological system which enables stroke survivors to independently undertake rehabilitation exercises at home. The prototype is based on advanced movement sensors which are worn by the user when performing prescribed exercises. Sensor data are transmitted to a computer which displays the users movements and progress. The number and type of sensors, methods of attaching them to the users body in the correct locations, the type of computer screen and the input devices were changed and refined as the project progressed in response to feedback from people with stroke, their carers and physiotherapists. Home-based testing of the system highlighted usability issues concerned with the appropriateness and acceptability of the equipment in domestic settings, the sensors and methods of attachment, and use of, and interpretation of the screen presentation. Users required education as well as support throughout the testing period. Increasing sophistication of the technological aspects of the system over time resolved some usability issues but also created others, as did meeting the aims of improved clinical utility. The interplay between technology development, clinical utility and usability must be taken into account for devices to be successfully developed for practice.

SMART project: Application of emerging information and communication technology to home-based rehabilitation for stroke patients

The SMART project, entitled ‘SMART rehabilitation: technological applications for use in the home with stroke patients’, is funded under the EQUAL (extend quality of life) initiative of the UK Engineering and Physical Sciences Research Council (EPSRC). The project aims to examine the scope, effectiveness and appropriateness of systems to support home-based rehabilitation for older people and their carers. In this paper, we describe the design and development of a low-cost home-based rehabilitation system. Through the project we have involved end users in the design process and this model can be applied to the design of other healthcare related systems.

Self-managed loaded exercise versus usual physiotherapy treatment for rotator cuff tendinopathy: a pilot randomised controlled trial

OBJECTIVES Rotator cuff tendinopathy is a common source of shoulder pain characterised by persistent and/or recurrent problems for a proportion of sufferers. The aim of this study was to pilot the methods proposed to conduct a substantive study to evaluate the effectiveness of a self-managed loaded exercise programme versus usual physiotherapy treatment for rotator cuff tendinopathy. DESIGN A single-centre pragmatic unblinded parallel group pilot randomised controlled trial. SETTING One private physiotherapy clinic, northern England. PARTICIPANTS Twenty-four participants with rotator cuff tendinopathy. INTERVENTIONS The intervention was a programme of self-managed loaded exercise. The control group received usual physiotherapy treatment. MAIN OUTCOMES Baseline assessment comprised the Shoulder Pain and Disability Index (SPADI) and the Short-Form 36, repeated three months post randomisation. RESULTS The recruitment target was met and the majority of participants (98%) were willing to be randomised. 100% retention was attained with all participants completing the SPADI at three months. Exercise adherence rates were excellent (90%). The mean change in SPADI score was -23.7 (95% CI -14.4 to -33.3) points for the self-managed exercise group and -19.0 (95% CI -6.0 to -31.9) points for the usual physiotherapy treatment group. The difference in three month SPADI scores was 0.1 (95% CI -16.6 to 16.9) points in favour of the usual physiotherapy treatment group. CONCLUSIONS In keeping with previous research which indicates the need for further evaluation of self-managed loaded exercise for rotator cuff tendinopathy, these methods and the preliminary evaluation of outcome offer a foundation and stimulus to conduct a substantive study.

Developing a personalised self-management system for post stroke rehabilitation; utilising a user-centred design methodology

Abstract Purpose: To develop and evaluate an information and communication technology (ICT) solution for a post-stroke Personalised Self-Managed Rehabilitation System (PSMrS). The PSMrS translates current models of stroke rehabilitation and theories underpinning self-management and self-efficacy into an ICT-based system for home-based post-stroke rehabilitation. Methods: The interdisciplinary research team applied a hybrid of health and social sciences research methods and user-centred design methods. This included a series of home visits, focus groups, in-depth interviews, cultural probes and technology biographies. Results: The iterative development of both the content of the PSMrS and the interactive interfaces between the system and the user incorporates current models of post-stroke rehabilitation and addresses the factors that promote self-managed behaviour and self-efficacy such as mastery, verbal persuasion and physiological feedback. Conclusion: The methodological approach has ensured that the interactive technology has been driven by the needs of the stroke survivors and their carers in the context of their journey to both recovery and adaptation. Underpinned by theories of motor relearning, neuroplasticity, self-management and behaviour change, the PSMrS developed in this study has resulted in a personalised system for self-managed rehabilitation, which has the potential to change motor behaviour and promote the achievement of life goals for stroke survivors. Implications for Rehabilitation Radical innovation and the adoption of a self-management paradigm need to be considered as a way of delivering home-based post-stroke rehabilitation. A hybrid of health and social sciences research and user-centred design methods are required to ensure that technology for post-stroke rehabilitation has been driven by the needs of the stroke survivors and their carers. Personalised technology systems for self-managed post-stroke rehabilitation have the potential to change motor behaviour and promote the achievement of life goals for stroke survivors.