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 FindingsThe 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.ConclusionsTreatments 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.

IntroductionSelf-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.AimTo 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.MethodsSystematic 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.ResultsOver 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.ConclusionsPatients’, 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.

The study indicates that, in the light of limited health resources, EoP schemes have potential benefit for people post-discharge from physiotherapy. However, safety needs and the concerns of stroke survivors must be considered in EoP scheme development and management if they are to successfully help more people post-stroke maintain healthy levels of activity and fitness.

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.

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.

9Healthcare policy in developed countries has, in recent years, promoted self-10 management among people with long-term conditions. Such policies are underpinned 11 by neoliberal philosophy, as seen in the promotion of greater individual responsibility 12 for health through increased support for self-management. Yet still little is known about 13 how self-management is understood by commissioners of healthcare services, 14 healthcare professionals, people with long-term conditions and family care-givers. The 15 evidence presented here is drawn from a two-year study, which investigated how self-16 management is conceptualised by these stakeholder groups. Conducted in the UK 17 between 2013-2015, this study focused on three exemplar long-term conditions, stroke, 18 diabetes and colorectal cancer, to explore the issue. Semi-structured interviews and 19 focus groups were carried out with 174 participants (97 patients, 35 family care-givers, 20 20 healthcare professionals and 22 commissioners). The data is used to demonstrate 21 how self-management is framed in terms of what it means to be a 'good' self-manager. 22The 'good' self-manager is an individual who is remoralised; thus taking responsibility 23 for their health; is knowledgeable and uses this to manage risks; and, is 'active' in using 24 information to make informed decisions regarding health and social wellbeing. This 25 paper examines the conceptualisation of the 'good' self-manager. It demonstrates how 26 the remoralised, knowledgeable and active elements are inextricably linked, that is, how 27 action is knowledge applied and how morality underlies all action of the 'good' self-28 manager. Through unpicking the 'good' self-manager the problems of neoliberalism are 29 also revealed and addressed here. 30

Abstract-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. Index Terms-Functional electrical stimulation (FES), iterative learning control (ILC), Multiple Sclerosis (MS), rehabilitation, robot-therapy, upper limb, virtual reality (VR).

Background Focus of attention is known to play an important role in motor skill learning, yet little is known about how attention is directed within the context of stroke rehabilitation. Objective The aims of this study were: (1) to identify physical therapists' use of internal and external focus of attention during gait rehabilitation for individuals with hemiplegia following stroke and (2) to use the findings to design an experimental study examining the impact of focus of attention on learning poststroke. Design The study design involved direct nonparticipation observation of physical therapy treatment sessions. Methods Eight physical therapy treatment sessions, in which gait rehabilitation was taking place, were video recorded. Patients were aged between 36 and 85 years, and ranged from 7 to 216 days poststroke; physical therapists had between 3 and 12 years of experience in stroke rehabilitation. Data analysis took 2 forms: (1) clear definitions of internal and external focus of attention were agreed on via a consensus group and used to develop an analysis matrix through which incidences of instruction and feedback were identified, categorized, and counted; and (2) verbal dialogue was transcribed verbatim and transcripts were thematically analyzed to provide a detailed description of how instructions and feedback were used, illustrated by examples. Results The use of instructions and feedback (internal and external focus) was high; an average of one verbal instruction or feedback statement was delivered every 14 seconds. Sixty-seven percent of the statements were internally focused, 22% were externally focused, and 11% were of mixed focus. Unfocused statements (eg, “good”) also were used regularly. Patients were frequently encouraged to “think about” their performance. Limitations Observational data collection methods may result in changes in the behavior of those observed, which is a potential source of bias. The small sample size also was a limitation of the study. Conclusion Physical therapists frequently encouraged patients to be aware of their movements and their performance (internal focus). This approach may reduce automaticity and hinder learning and retention.