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Featured researches published by Sara Demain.


IEEE Transactions on Biomedical Engineering | 2013

Markerless Motion Capture and Measurement of Hand Kinematics: Validation and Application to Home-Based Upper Limb Rehabilitation

Cheryl Metcalf; Rebecca Robinson; Adam J. Malpass; Tristan P. Bogle; Thomas A. Dell; Christopher G. Harris; Sara Demain

Dynamic movements of the hand, fingers, and thumb are difficult to measure due to the versatility and complexity of movement inherent in function. An innovative approach to measuring hand kinematics is proposed and validated. The proposed system utilizes the Microsoft Kinect and goes beyond gesture recognition to develop a validated measurement technique of finger kinematics. The proposed system adopted landmark definition (validated through ground truth estimation against assessors) and grip classification algorithms, including kinematic definitions (validated against a laboratory-based motion capture system). The results of the validation show 78% accuracy when identifying specific markerless landmarks. In addition, comparative data with a previously validated kinematic measurement technique show accuracy of MCP ± 10° (average absolute error (AAE) = 2.4°), PIP ± 12° (AAE = 4.8°), and DIP ± 11° (AAE = 4.8°). These results are notably better than clinically based alternative manual measurement techniques. The ability to measure hand movements, and therefore functional dexterity, without interfering with underlying composite movements, is the paramount objective to any bespoke measurement system. The proposed system is the first validated markerless measurement system using the Microsoft Kinect that is capable of measuring finger joint kinematics. It is suitable for home-based motion capture for the hand and, therefore, achieves this objective.


PLOS ONE | 2015

Self-management and self-management support outcomes: A systematic review and mixed research synthesis of stakeholder views

Emma J. Boger; Jaimie Ellis; Sue Latter; Claire Foster; Anne Kennedy; Fiona Jones; Vicky Fenerty; Ian Kellar; Sara Demain

Introduction Self-management has received growing attention as an effective approach for long-term condition management. Little is known about which outcomes of supported self-management are valued by patients, their families, health professionals and those who commission self-management services. This study systematically reviewed published empirical evidence in accordance with PRISMA guidelines to determine the outcomes of self-management valued by these key stakeholder groups, using three prominent exemplar conditions: colorectal cancer, diabetes and stroke. Aim To systematically review the literature to identify which generic outcomes of self-management have been targeted and are considered important using three exemplar conditions (colorectal cancer, diabetes and stroke), which collectively have a range of features that are likely to be representative of generic self-management issues. Methods Systematic searching of nine electronic databases was conducted in addition to hand searches of review articles. Abstracts were identified against inclusion criteria and appraised independently by two reviewers, using a critical appraisal tool. Synthesis of findings was conducted using mixed research synthesis. Results Over 20,536 abstracts were screened. 41 studies which met the review criteria were fully retrieved and appraised. The majority of evidence related to diabetes. Few studies directly focussed on stakeholders’ views concerning desired self-management outcomes; the majority of evidence was derived from studies focusing upon the experience of self-management. The views of health care commissioners were absent from the literature. We identified that self-management outcomes embrace a range of indicators, from knowledge, skills, and bio-psychosocial markers of health through to positive social networks. Conclusions Patients’, families’, health professionals’ and commissioners’ views regarding which outcomes of self-management are important have not been clearly elicited. The extent to which bio-psychosocial indicators relate to successful self-management from the perspectives of all groups of stakeholders is unknown. Further investigation regarding which self-management outcomes are considered important by all stakeholders is necessary to guide the commissioning and design of future self-management services.


BMC Health Services Research | 2013

Assistive technologies after stroke: self-management or fending for yourself? A focus group study

Sara Demain; Jane Burridge; Caroline Ellis-Hill; Ann-Marie Hughes; Lucy Yardley; Lisa Tedesco-Triccas; Ian Swain

BackgroundAssistive Technologies, defined as “electrical or mechanical devices designed to help people recover movement” have demonstrated clinical benefits in upper-limb stroke rehabilitation. Stroke services are becoming community-based and more reliant on self-management approaches. Assistive technologies could become important tools within self-management, however, in practice, few people currently use assistive technologies. This study investigated patients’, family caregivers and health professionals’ experiences and perceptions of stroke upper-limb rehabilitation and assistive technology use and identified the barriers and facilitators to their use in supporting stroke self-management.MethodsA three-day exhibition of assistive technologies was attended by 204 patients, family caregivers/friends and health professionals. Four focus groups were conducted with people purposively sampled from exhibition attendees. They included i) people with stroke who had used assistive technologies (n = 5), ii) people with stroke who had not used assistive technologies (n = 6), iii) family caregivers (n = 5) and iv) health professionals (n = 6). The audio-taped focus groups were facilitated by a moderator and observer. All participants were asked to discuss experiences, strengths, weaknesses, barriers and facilitators to using assistive technologies. Following transcription, data were analysed using thematic analysis.ResultsAll respondents thought assistive technologies had the potential to support self-management but that this opportunity was currently unrealised. All respondents considered assistive technologies could provide a home-based solution to the need for high intensity upper-limb rehabilitation. All stakeholders also reported significant barriers to assistive technology use, related to i) device design ii) access to assistive technology information and iii) access to assistive technology provision. The lack of and need for a coordinated system for assistive technology provision was apparent. A circular limitation of lack of evidence in clinical settings, lack of funded provision, lack of health professional knowledge about assistive technologies and confidence in prescribing them leading to lack of assistive technology service provision meant that often patients either received no assistive technologies or they and/or their family caregivers liaised directly with manufacturers without any independent expert advice.ConclusionsConsiderable systemic barriers to realising the potential of assistive technologies in upper-limb stroke rehabilitation were reported. Attention needs to be paid to increasing evidence of assistive technology effectiveness and develop clinical service provision. Device manufacturers, researchers, health professionals, service funders and people with stroke and family caregivers need to work creatively and collaboratively to develop new funding models, improve device design and increase knowledge and training in assistive technology use.


BMC Health Services Research | 2014

Translation of evidence-based Assistive Technologies into stroke rehabilitation: users' perceptions of the barriers and opportunities

Ann-Marie Hughes; Jane Burridge; Sara Demain; Caroline Ellis-Hill; Claire Meagher; Lisa Tedesco-Triccas; Ruth Turk; Ian Swain

BackgroundAssistive Technologies (ATs), defined as “electrical or mechanical devices designed to help people recover movement”, demonstrate clinical benefits in upper limb stroke rehabilitation; however translation into clinical practice is poor. Uptake is dependent on a complex relationship between all stakeholders. Our aim was to understand patients’, carers’ (P&Cs) and healthcare professionals’ (HCPs) experience and views of upper limb rehabilitation and ATs, to identify barriers and opportunities critical to the effective translation of ATs into clinical practice. This work was conducted in the UK, which has a state funded healthcare system, but the findings have relevance to all healthcare systems.MethodsTwo structurally comparable questionnaires, one for P&Cs and one for HCPs, were designed, piloted and completed anonymously. Wide distribution of the questionnaires provided data from HCPs with experience of stroke rehabilitation and P&Cs who had experience of stroke. Questionnaires were designed based on themes identified from four focus groups held with HCPs and P&Cs and piloted with a sample of HCPs (N = 24) and P&Cs (N = 8). Eight of whom (four HCPs and four P&Cs) had been involved in the development.Results292 HCPs and 123 P&Cs questionnaires were analysed. 120 (41%) of HCP and 79 (64%) of P&C respondents had never used ATs. Most views were common to both groups, citing lack of information and access to ATs as the main reasons for not using them. Both HCPs (N = 53 [34%]) and P&C (N = 21 [47%]) cited Functional Electrical Stimulation (FES) as the most frequently used AT. Research evidence was rated by HCPs as the most important factor in the design of an ideal technology, yet ATs they used or prescribed were not supported by research evidence. P&Cs rated ease of set-up and comfort more highly.ConclusionKey barriers to translation of ATs into clinical practice are lack of knowledge, education, awareness and access. Perceptions about arm rehabilitation post-stroke are similar between HCPs and P&Cs. Based on our findings, improvements in AT design, pragmatic clinical evaluation, better knowledge and awareness and improvement in provision of services will contribute to better and cost-effective upper limb stroke rehabilitation.


PLOS ONE | 2015

Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research.

Sara Demain; Ana-Carolina Gonçalves; Carlos Areia; Rúben Oliveira; Ana Marcos; Alda Marques; Ranj Parmar; Katherine Hunt

Background ‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions? Methods and Findings The search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships. Conclusions Treatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions.


Journal of Electromyography and Kinesiology | 2014

Methodologies to assess muscle co-contraction during gait in people with neurological impairment – A systematic literature review

Marlene Cristina Neves Rosa; Alda Marques; Sara Demain; Cheryl Metcalf; João M. O. S. Rodrigues

PURPOSE To review the methodologies used to assess muscle co-contraction (MCo) with surface electromyography (sEMG) during gait in people with neurological impairment. METHODS The Scopus (1995-2013), Web of Science (1970-2013), PubMed (1948-2013) and B-on (1999-2013) databases were searched. Articles were included when sEMG was used to assess MCo during gait in people with impairment due to central nervous system disorders (CNS). RESULTS Nineteen articles met the inclusion criteria and most studied people with cerebral palsy and stroke. No consensus was identified for gait assessment protocols (surfaces, speed, distance), sEMG acquisition (electrodes position), analysis of sEMG data (filters, normalisation techniques) and quantification of MCo (agonist-antagonist linear envelopes overlapping or agonist-antagonist overlapping periods of muscles activity, onset delimited). CONCLUSION Given the wide range of methodologies employed, it is not possible to recommend the most appropriate for assessing MCo. Researchers should adopt recognized standards in future work. This is needed before consensus about the role that MCo plays in gait impairment in neurological diseases and its potential as a target for gait rehabilitation can be determined.


Aging & Mental Health | 2011

Coping with the caregiving role: Differences between primary and secondary caregivers of dependent elderly people

Ana Barbosa; Daniela Figueiredo; Liliana Sousa; Sara Demain

Objectives: The topic of how primary informal caregivers cope with their caregiving demands has generated significant research. However, little is known about secondary informal caregivers, who often share caregiving responsibilities. This cross-sectional study aims to analyse and compare the use and effectiveness of coping strategies of primary and secondary informal caregivers of dependent elderly people, living at home. Method: A sample of 180 informal caregivers of dependent elderly people – 90 primary and 90 secondary caregivers – was obtained. The study was conducted in the district of Aveiro (Portugal). The Portuguese version of Caregivers’ Assessment Management Index – CAMI (Nolan, Keady, & Grant, 1995) was administrated to both sub-samples. Results: Findings suggest that emotion-cognitive strategies are less efficient for secondary caregivers (e.g. drawing on personal or religious beliefs). Common problem-solving strategies adopted by both types of caregivers involve relying on own their experience and expertise and addressing and finding a solution to the problem. Neither group were highly efficient at managing care-related stress, but both identified benefits from taking time off or maintaining interests outside of caregiving. Conclusion: These findings can guide professionals in targeting and monitoring interventions aiming to develop caregivers’ effective coping strategies. Besides, engaging secondary caregivers in current available interventions and services, usually targeted to the primary caregiver, is of paramount need, as they can reduce the burden of primary caregivers and delay institutionalisation.


IEEE Transactions on Neural Systems and Rehabilitation Engineering | 2016

Using Functional Electrical Stimulation Mediated by Iterative Learning Control and Robotics to Improve Arm Movement for People With Multiple Sclerosis

Patrica Sampson; Christopher Freeman; Susan Coote; Sara Demain; Peter Feys; Katie Meadmore; Ann-Marie Hughes

Few interventions address multiple sclerosis (MS) arm dysfunction but robotics and functional electrical stimulation (FES) appear promising. This paper investigates the feasibility of combining FES with passive robotic support during virtual reality (VR) training tasks to improve upper limb function in people with multiple sclerosis (pwMS). The system assists patients in following a specified trajectory path, employing an advanced model-based paradigm termed iterative learning control (ILC) to adjust the FES to improve accuracy and maximise voluntary effort. Reaching tasks were repeated six times with ILC learning the optimum control action from previous attempts. A convenience sample of five pwMS was recruited from local MS societies, and the intervention comprised 18 one-hour training sessions over 10 weeks. The accuracy of tracking performance without FES and the amount of FES delivered during training were analyzed using regression analysis. Clinical functioning of the arm was documented before and after treatment with standard tests. Statistically significant results following training included: improved accuracy of tracking performance both when assisted and unassisted by FES; reduction in maximum amount of FES needed to assist tracking; and less impairment in the proximal arm that was trained. The system was well tolerated by all participants with no increase in muscle fatigue reported. This study confirms the feasibility of FES combined with passive robot assistance as a potentially effective intervention to improve arm movement and control in pwMS and provides the basis for a follow-up study.


Disability and Rehabilitation: Assistive Technology | 2013

A narrative review on haptic devices: relating the physiology and psychophysical properties of the hand to devices for rehabilitation in central nervous system disorders

Sara Demain; Cheryl Metcalf; Deyi Zheng; Sarah Cunningham

Purpose: This article provides rehabilitation professionals and engineers with a theoretical and pragmatic rationale for the inclusion of haptic feedback in the rehabilitation of central nervous system disorders affecting the hand. Method: A narrative review of haptic devices used in sensorimotor hand rehabilitation was undertaken. Presented papers were selected to outline and clarify the underlying somatosensory mechanisms underpinning these technologies and provide exemplars of the evidence to date. Results: Haptic devices provide kinaesthetic and/or tactile stimulation. Kinaesthetic haptics are beginning to be incorporated in central nervous system rehabilitation; however, there has been limited development of tactile haptics. Clinical research in haptic rehabilitation of the hand is embryonic but initial findings indicate potential clinical benefit. Conclusions: Haptic rehabilitation offers the potential to advance sensorimotor hand rehabilitation but both scientific and pragmatic developments are needed to ensure that its potential is realized. Implications for Rehabilitation The current lack of emphasis on somatosensory rehabilitation may contribute to poor hand recovery in patients with central nervous system pathology. Haptic technologies have the potential to improve sensation and sensory motor integration in neurological conditions. An underlying theoretical rationale is provided for the design and clinical use of haptic technologies in neuro-rehabilitation of the hand.


Disability and Rehabilitation | 2013

Self-management: a systematic review of outcome measures adopted in self-management interventions for stroke

Emma J. Boger; Sara Demain; Sue Latter

Purpose: To systematically review the psychometric properties of outcome measures used in stroke self-management interventions (SMIs) to (1) inform researchers, clinicians and commissioners about the properties of the measures in use and (2) make recommendations for the future development of self-management measurement in stroke. Methods: Electronic databases, government websites, generic internet search engines and hand searches of reference lists. Abstracts were selected against inclusion criteria and retrieved for appraisal and systematically scored, using the COSMIN checklist. Results: Thirteen studies of stroke self-management originating from six countries were identified. Forty-three different measures (mean 5.08/study, SD 2.19) were adopted to evaluate self-SMIs. No studies measured self-management as a discreet concept. Six (46%) studies included untested measures. Eleven (85%) studies included at least one measure without reported reliability and validity in stroke populations. Conclusions: The use of outcome measures which are related, indirect or proxy indicators of self-management and that have questionable reliability and validity, contributes to an inability to sensitively evaluate the effectiveness of stroke self-SMIs. Further enquiry into how the concept of self-management in stroke operates, would help to clarify the nature and range of specific self-management activities to be targeted and aid the selection of existing appropriate measures or the development of new measures. Implications for Rehabilitation The evaluation of complex interventions such as self-management interventions is aided by clear outcome expectations and valid and reliable measurement. This review demonstrates a lack of outcome measures that specifically measure self-management of stroke. A minority of outcome measures that were used as proxy indicators for SM fulfill some of the criteria for quality outlined in the COSMIN checklist. Clinicians should select measures which appropriately reflect expected outcomes, giving due consideration to the theoretical underpinnings of the intervention. Further work is required to establish which measures currently in use, if any, accurately reflect stoke self-management. In the meantime, researchers should seek to develop psychometrically sound measures of stroke self-management to assist effective evaluation of such interventions in stroke.

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Cheryl Metcalf

University of Southampton

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Jane Burridge

University of Southampton

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Emma J. Boger

University of Southampton

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Sue Latter

University of Southampton

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Ian Swain

Bournemouth University

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