In this thesis, I describe the iterative service design process I used in identifying and understanding the needs of diverse stakeholders, the development of technologies to support their mutually beneficial needs, and the evaluation of the end-user experience with these technologies. Over three iterative design cycles, the set of identified end-user customers expanded to include the patient, the supervising therapist, the annotating therapist, and other members of the development team. Multiple versions of interactive movement capture and annotation tools were developed as the needs of these stakeholders were clarified and evolved, and the optimal data forms and structures became evident. Interactions between the stakeholders and the developed technologies operating in various environments were evaluated and assessed to help improve and optimize the entire service ecosystem. Results and findings from these three design cycles are being used to direct and shape my ongoing and future doctoral research / Master of Science / In this thesis, I describe the iterative service design process I used in identifying and understanding the needs of diverse stakeholders, the development of technologies to support their mutually beneficial needs, and the evaluation of the end-user experience with these technologies. Over three iterative design cycles, the set of identified end-user customers expanded to include the patient, the supervising therapist, the annotating therapist, and other members of the development team. Multiple versions of interactive movement capture and annotation tools were developed as the needs of these stakeholders were clarified and evolved, and the optimal data forms and structures became evident Interactions between the stakeholders and the developed technologies operating in various environments were evaluated and assessed to help improve and optimize the entire service ecosystem. Results and findings from these three design cycles are being used to direct and shape my ongoing and future doctoral research.

There is increasing evidence that stroke survivors benefit from the provision of intensive, task-specific therapy in the rehabilitation of motor function. Providing such therapy to a number of stroke survivors in a group setting (know as circuit class therapy) has been proposed as an alternative model of physiotherapy service delivery within the inpatient rehabilitation setting. This study investigated the effectiveness and feasibility of circuit class therapy, as compared to the standard practice of one-to-one therapy sessions, within a representative sample of stroke survivors receiving inpatient rehabilitation.

Canadians are worried about the future of the health care system, and provincial governments are questioning the ability of the existing system to support Canadians health care needs in the 21st Century(Industry Canada, 2011). Health care providers and system administrators are both driving and experiencing a paradigm shift; moving away from paternalism and toward an egalitarian approach. In order to practice patient centredness, health care providers must prioritize patient needs; provide information regarding treatments while taking patient preferences into account (Romanow, 2002). While there is a growing body of literature regarding patient centredness, there is scant information from the patient perspective. If the most effective and acceptable health services are those that realize the expectations of the users, this is an important area of study. Using phenomenological research methods and the theory of planned behaviour as a theoretical framework, the purpose of the study was to explore the influence of beliefs, attitudes and experiences on behaviour from the perspective of patients in primary health care or stroke rehabilitation. A second purpose was to explore the degree to which beliefs, attitudes and behaviour were similar between clinical contexts. The theory of planned behaviour was unsuitable for understanding peoples’ beliefs, attitudes and behaviour about being a patient. Being a patient was not a single, observable behaviour, but rather a set of contextually dependent strategies patients’ directed at a particular goal. The goal for each participant group was different; rehabilitation patients focused on the specific goal of recovery and discharge, while PHC patients focused on a broader goal of accessing and receiving best health care possible. These goals were reflected in their respective approaches to accessing health care services, an experience they described as socially oriented, governed and reinforced. Although patients described themselves as actively engaged, they did not approach each interaction with health care with a set of behavioural beliefs about being a patient. During the course of their participation, patients identified, developed and adopted strategies to assist in achieving the target; and evaluated those strategies more positively.

Canadians are worried about the future of the health care system, and provincial governments are questioning the ability of the existing system to support Canadians health care needs in the 21st Century(Industry Canada, 2011). Health care providers and system administrators are both driving and experiencing a paradigm shift; moving away from paternalism and toward an egalitarian approach. In order to practice patient centredness, health care providers must prioritize patient needs; provide information regarding treatments while taking patient preferences into account (Romanow, 2002). While there is a growing body of literature regarding patient centredness, there is scant information from the patient perspective. If the most effective and acceptable health services are those that realize the expectations of the users, this is an important area of study. Using phenomenological research methods and the theory of planned behaviour as a theoretical framework, the purpose of the study was to explore the influence of beliefs, attitudes and experiences on behaviour from the perspective of patients in primary health care or stroke rehabilitation. A second purpose was to explore the degree to which beliefs, attitudes and behaviour were similar between clinical contexts. The theory of planned behaviour was unsuitable for understanding peoples’ beliefs, attitudes and behaviour about being a patient. Being a patient was not a single, observable behaviour, but rather a set of contextually dependent strategies patients’ directed at a particular goal. The goal for each participant group was different; rehabilitation patients focused on the specific goal of recovery and discharge, while PHC patients focused on a broader goal of accessing and receiving best health care possible. These goals were reflected in their respective approaches to accessing health care services, an experience they described as socially oriented, governed and reinforced. Although patients described themselves as actively engaged, they did not approach each interaction with health care with a set of behavioural beliefs about being a patient. During the course of their participation, patients identified, developed and adopted strategies to assist in achieving the target; and evaluated those strategies more positively.

Seventy percent of stroke survivors experience loss of upper limb function after stroke and rehabilitative therapy is the only option to reduce impairments. However, uncertainty remains as to the optimal dose of therapy that should be prescribed. It has been suggested to report multiple parameters of dose, to increase standardization within the field, and to gain a better understanding of the dose-response relationship. This study investigated the automatic quantification of multiple dose parameters in a rat model of ischemic stroke, with rehabilitation paradigms whereby rats repeatedly grasp for food pellets to train their forelimb function. Starting 7 days post-stroke, groups of rats received 4, 8, or 12 rehabilitative training sessions for 10 days, practicing either high-quality (precision practice) or less skilled (mass practice) reaching movements. Pellet consumption was measured after each session and various metrics were analyzed using deep learning-based software (DeepLabCut, DLC) to represent parameters of dose intensity (number of reaches, paw path length) and session density (time on task). Functional outcome was assessed with the Montoya staircase task. Computer algorithms were validated against human analysis, demonstrating reach detection accuracy and reliability >80%. Interestingly, the number of training sessions did not alter the accumulated movement practice across rehabilitation, in either task. However, the number of sessions inversely affected training intensity, resulting in more forelimb use per session in rats with 4 sessions compared to 12 sessions. We found strong positive correlations between the number of reaches, time on task, paw path length, and pellets consumed in the precision practice, but only between reaches and pellets consumed in mass practice. This work demonstrates the quantification of multiple dose parameters using deep learning software and shows subtle differences between the two commonly used forelimb training tasks. Moreover, our data suggest that rehabilitative training at a frequency that is too high may negatively impact performance per session.

Philosophiae Doctor - PhD / Return-to-work (RTW) after an injury or illness is influenced by physical, psychological and social factors. Therefore, a need exists to develop a contextualized multi-perspective and objective measure for the assessment of return-to-work among stroke survivors. This current study comprised three phases, with each phase intended to address various objectives in the process of developing and validating a psychometrically sound measure, to assess return-to-work in stroke survivors. In the first phase, qualitative data collection methods were employed with various stakeholders and key informants, to finalise the conceptualisation, scale construction, and domain identification of the intended instrument. In-depth interviews were conducted with stroke survivors, their caregivers, employers and rehabilitation professionals. The data generated were analysed using the Atlasti.version 7. The results were used to construct the instrument.

Though patient participation is recognized as an important element of rehabilitation, few studies have used a qualitative lens to specifically examine factors influencing patient-participation in stroke rehabilitation. Thus, the purpose of this work was to explore factors perceived by service users to influence their participation in hospital-based stroke rehabilitation activities and to use this information to generate knowledge relevant for the clinical context of stroke rehabilitation. The following research gaps provided rationale for this work: 1) no published studies from the patients’ perspective on influencers of participating in hospital-based stroke rehabilitation programs, and 2) limited studies about influences on participation in hospital-based stroke rehabilitation. The first manuscript (chapter two) was designed to specifically address these gaps while the second manuscript (chapter three) was developed to highlight important findings surrounding rehabilitation intensity from chapter two. This thesis has discussed a number of patient-perceived barriers and facilitators to participating in stroke rehabilitation, which the final chapter conceptualizes into a framework of personalized rehabilitation representing a patient-centred approach to providing rehabilitation that encourages patient participation. Together, this thesis contributes knowledge about: 1) patient perspectives on factors affecting participation in stroke rehabilitation, 2) promoting patient participation, 3) shortcomings in closing the evidence-to-practice gap with respect to therapy intensity during inpatient stroke rehabilitation, and 4) insights into an exploratory framework of personalized rehabilitation developed from service users’ perspectives of stroke rehabilitation. In addition, this work emphasizes a call to action for the delivery of user-centered stroke care, specifically in regard to rehabilitation intensity during inpatient stroke rehabilitation. The implications of this work are directed at stroke rehabilitation providers as well as policy makers and stroke health system planners in order to develop appropriate and effective services and strategies for optimal recovery and successful implementation of best practice recommendations. / Thesis / Master of Science (MSc) / Rehabilitation is a crucial part of recovery after stroke and patient participation is recognized as an important element of rehabilitation. A less explored perspective is patients’ experiences participating in stroke rehabilitation and barriers/facilitators to participation. This study interviewed individuals who participated in stroke rehabilitation to ask about factors influencing their participation. Eleven individuals were interviewed, and four key themes were identified as barriers and/or facilitators to patient-participation in stroke rehabilitation: 1) environmental factors, 2) components of therapy, 3) physical and emotional well-being, and 4) personal motivators. A sub-theme, amount of therapy, was explored further and this work draws attention to the rehabilitation intensity evidence-to-practice gap apparent as a prevalent issue in Canada and elsewhere. This exploration of patients’ experiences and factors perceived as influencing participation can help to shape the development of strategies to facilitate participation in rehabilitation and improve implementation of existing recommendations to maximize recovery after stroke.

Yes / Changes in world-wide population trends have provided new demands for new technologies in areas such as care and rehabilitation. Recent developments in the the field of robotics for neurorehabilitation have shown a range of evidence regarding usefulness of these technologies as a tool to augment traditional physiotherapy. Part of the appeal for these technologies is the possibility to place a rehabilitative tool in one’s home, providing a chance for more frequent and accessible technologies for empowering individuals to be in charge of their therapy. this manuscript introduces the Supervised Care and Rehabilitation Involving Personal Tele-robotics (SCRIPT) project. The main goal is to demonstrate design and development steps involved in a complex intervention, while examining feasibility of using an instrumented orthotic device for home-based rehabilitation after stroke. Methods: the project uses a user-centred design methodology to develop a hand/wrist rehabilitation device for home-based therapy after stroke. The patient benefits from a dedicated user interface that allows them to receive feedback on exercise as well as communicating with the health-care professional. The health-care professional is able to use a dedicated interface to send/receive communications and remote-manage patient’s exercise routine using provided performance benchmarks. Patients were involved in a feasibility study (n=23) and were instructed to use the device and its interactive games for 180 min per week, around 30 min per day, for a period of 6 weeks, with a 2-months follow up. At the time of this study, only 12 of these patients have finished their 6 weeks trial plus 2 months follow up evaluation. Results: with the “use feasibility” as objective, our results indicate 2 patients dropping out due to technical difficulty or lack of personal interests to continue. Our frequency of use results indicate that on average, patients used the SCRIPT1 device around 14 min of self-administered therapy a day. The group average for the system usability scale was around 69% supporting system usability. Conclusions: based on the preliminary results, it is evident that stroke patients were able to use the system in their homes. An average of 14 min a day engagement mediated via three interactive games is promising, given the chronic stage of stroke. During the 2nd year of the project, 6 additional games with more functional relevance in their interaction have been designed to allow for a more variant context for interaction with the system, thus hoping to positively influence the exercise duration. The system usability was tested and provided supporting evidence for this parameter. Additional improvements to the system are planned based on formative feedback throughout the project and during the evaluations. These include a new orthosis that allows a more active control of the amount of assistance and resistance provided, thus aiming to provide a more challenging interaction. / This work has been partially funded under Grant FP7-ICT-288698(SCRIPT) of the European Community Seventh Framework Programme.

Bakgrund: Stroke är en folksjukdom som drabbar cirka 20 000-25 000 personer i Sverige varje år och leder till syrebrist i hjärnan. De symtom som uppkommer vid en stroke varierar beroende på vilken del av hjärnan som skadas Tiden från första symtom tills att behandling sätts in har en stor inverkan på hur allvarliga skador det blir. De vanligaste symtomen är domning eller förlamning och en lång rehabilitering väntar oftast. Syfte: Syftet med denna litteraturstudie var att beskriva personers upplevelser efter att ha drabbats av en stroke samt att beskriva undersökningsgrupperna i de valda artiklarna. Metod: En beskrivande litteraturstudie som baseras på tolv kvalitativa vetenskapliga artiklar. Databaserna Cinahl och Medline via PubMed användes för att söka artiklarna, via högskolan i Gävle. Huvudresultat: I resultatet presenteras personers upplevelser efter en stroke utifrån deras fysiska och psykiska hälsa, samt det sociala livet. Funktionsnedsättningar var den vanligaste fysiska förändringen i livet som fick dessa personer att uppleva en psykisk påfrestning, bland annat depression, rädsla och förändrad självbild. Det sociala nätverket påverkas genom isolering på grund av den fysiska funktionsnedsättningen och den psykiska påfrestningen. Totala antalet deltagare i studien var 184 personer vars erfarenheter och upplevelser studerades, 53,3% var män och 46,7% var kvinnor. Slutsats: Alla personer som drabbats av en stroke upplevde någon form av förändring i det dagliga livet. Därför krävs det att vårdpersonalen har kunskap om hur olika individer hanterar denna livsförändring. Det kunde vara allt från fysiska, psykiska och sociala förändringar. Stödhjälp ansågs varit en viktig del under rehabiliteringsprocessen för dessa personer. / Background: Stroke is a widespread disease in Sweden and it affects approximately 20 000-25 000 persons every year and it leads to oxygen deprivation in the brain. The symptoms that are caused by a stroke very depending on which part of the brain that is damaged. The time between the first symptoms of a Stroke and the first treatment of the disease is another major reason of how serious the damage becomes. The most common symptoms are numbness or paralysis and a long time of rehabilitation waits for the person that suffers from a stroke. Aim: To describe people´s experience after having suffered a stroke and to describe the included articles study-group.. Method: A descriptive literature study based on twelve qualitative scientific articles. The databases Cihnal and PubMed was used to search the articles, through the University of Gävle. Results: People's experiences after a stroke based on their physical and mental health, their social life are being presented in the results. Movement disabilities was the most common physical change in people’s life and also the reason why people experienced psychological distress such as depression, fear and a different view of themselves. Their social network is affected because of their physical movement disabilities and psychological distress. The total amount of people participating in the study was 184 persons whose experiences were studied, 53, 3% were men and 46, 7 % were women. Conclusion: Every person who suffered from a stroke experienced some kind of change in their daily life. Therefore, it requires that health professionals have the knowledge of how individuals manage this life-changing. It could be anything from physical, psychological to social changes in their lives. Supportive help for the affected people has been an important part of the rehabilitation process.

Background: Goal setting is accepted ‘best practice’ in stroke rehabilitation however, there is no consensus about what the key components of goal setting interventions are, how they should be optimally delivered in practice and how best to involve stroke survivors in the process. This PhD by publication describes the development and initial evaluation of a theory-based goal setting and action planning framework (G-AP) to guide goal setting practice in community based stroke rehabilitation settings. Included studies: The Medical Research Council (MRC) framework for developing and evaluating complex interventions guided the development and conduct of a programme of research which included the following studies: (i) a review of the literature to identify theories of behaviour change with most potential to inform goal setting practice (Paper 1) (ii) a causal modelling exercise to map identified theoretical constructs onto a goal setting process and convening of a multi-disciplinary task group to develop the theoretical process into a Goal setting and Action Planning (G-AP) practice framework (Paper 2) (iii) a process evaluation of the G-AP framework in one community rehabilitation team (Paper 3) (iv) a United Kingdom (UK) wide survey to investigate the nature of services providing community based stroke rehabilitation across the UK and what goal setting practice is in these settings in order to understand the context into which an evaluation of the G-AP framework could be introduced (Paper 4) Main Findings: The review of the literature identified three theories of behaviour change that offered most potential to inform goal setting practice: Social Cognitive Theory, Health Action Process Approach and Goal Setting Theory. These theories contained constructs directly relevant to the goal setting practice: self-efficacy, outcome expectancies, goal attributes, action planning, coping planning and appraisal and feedback. The causal modelling and Task group exercise: (i) Informed development of the G-AP framework into a four stage, cyclical process that included (i) goal negotiation and setting (ii) planning and measuring confidence (iii) action and (iv) appraisal, feedback and decision making. (ii) Proposed mechanisms of action: successful completion of action plans resulting in incremental improvements in goal sub-skills and self-efficacy. (iii) Predicted outcomes G-AP was likely to impact on: goal attainment and improved rehabilitation outcomes. The process evaluation suggested that each stage of the G-AP framework had a distinct purpose and made a useful contribution to the overall process. Overall, G-AP was acceptable and feasible to use but implementation of novel aspects of the framework (coping planning and measuring confidence) was inconsistent and health professionals had concerns about the potential impact of unmet goals on patients’ wellbeing. Patient reports suggested that (i) the experience of goal non-attainment could facilitate adjustment to limitations resulting from stroke and (ii) feeling involved in the goal setting process can incorporate both patient-led and professional-led approaches. The survey findings highlighted the variability that exists in community based stroke rehabilitation services in the UK (e.g. the patients they see; the input they provide). Goal setting is reportedly used with all or most stroke survivors in these services; however, practice is variable and may be sub-optimal. Conclusions: G-AP is the first practice framework which has been explicitly developed to guide health professionals through a systematic, theoretically based and patient centred goal setting process in community based stroke rehabilitation. G-AP is a cyclical process that that has four key stages, proposed mechanisms of action and has shown promise as an acceptable, feasible and effective framework to guide goal setting practice. The complexity that exists within community based stroke rehabilitation services, and the variability in usual goal setting practice used within them, should be considered when designing a study to evaluate the effectiveness of G-AP in routine practice.