Mobile technology and delegated work in specialist community services: the EnComPaSS Integration project.

OBJECTIVES: The current UK healthcare workforce crisis is particularly severe in community services. A key limitation with traditional service-delivery models is the reliance on practitioners with levels of training and experience to enable them to operate independently. This paper describes a real-world evaluation of the implementation of digital health technology designed to provide remote, real-time support and task delegation in community palliative care services. It explores the ability of technology to support sustainable community workforce models and reports on key indicators of quality and efficiency. METHODS: The study was a mixed-methods, theory-driven evaluation, incorporating interviews, observations and analysis of routine data. The focus of this paper is the reporting of findings from pre-post implementation comparison and interrupted time series analysis. Data include community hospice service visits, hospital use by hospice patients and patient reported experiences. RESULTS: The digital health intervention allowed the service to include a more junior workforce (p<0.001, Cramer's V=0.241), requiring fewer joint visits (p<0.001, Cramer's V=0.087). No negative changes in hospitalisation were observed and patient reported experiences improved (p=0.023). Changes in hospital non-emergency bed days were inconclusive. However, emergency department admissions reduced significantly (-76.9 /month at 17 months, p=0.001). The cost per hour for visits reduced from £16.71 to £16.23 and annual savings of £135 153 are estimated for reduced emergency admissions. CONCLUSIONS: The evaluation demonstrates the value of digital innovation to support programmes of service redesign and begin to address the healthcare workforce crisis, while having a positive economic effect and indicating an improvement to patient experiences.

Feasibility and benefits of a structured prehabilitation programme prior to autologous stem cell transplantation (ASCT) in patients with myeloma; a prospective feasibility study.

Evidence supports the benefits of exercise-based rehabilitation in promoting recovery in myeloma patients following autologous stem-cell transplantation (ASCT). However, 'prehabilitation' has never been evaluated prior to ASCT, despite evidence of effectiveness in other cancers. Utilising a mixed method approach the authors investigated the feasibility of a mixed strength and cardiovascular exercise intervention pre-ASCT. Quantitative data were collected to determine feasibility targets; rates of recruitment, adherence and adverse events, including 6minute walking distance (6MWD) test and patient reported outcome measures (PROMs). Qualitative interviews were undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. The authors recruited 23 patients who attended a mean percentage of 75% scheduled exercise sessions. However, retention rates were limited, with only 14/23 (62%) completing the programme. In these patients, the 6MWD increased from a mean of 346 to 451m (i.e. by 105m, 95% CI 62 to 148m) with no serious adverse events. Whist participants found the exercise programme acceptable and reported improvement in their physical fitness and overall mental health and wellbeing prior to ASCT, the study identified challenges in hospital attendance for the prehabilitation schedule whilst receiving induction or re-induction chemotherapy. Evaluation of digitally-enhanced directed but remote prehabilitation models for this patient group is warranted. Trial registration number NCT03135925.

Rehabilitation Before and After Autologous Haematopoietic Stem Cell Transplantation (AHSCT) for Patients With Multiple Sclerosis (MS): Consensus Guidelines and Recommendations for Best Clinical Practice on Behalf of the Autoimmune Diseases Working Party, Nurses Group, and Patient Advocacy Committee of the European Society for Blood and Marrow Transplantation (EBMT).

Autologous haematopoietic stem cell transplantation (AHSCT) is increasingly used to treat people with multiple sclerosis (MS). Supported by an evolving evidence base, AHSCT can suppress active inflammation in the central nervous system and induce long-term changes in immune cell populations, thereby stabilizing, and, in some cases, reversing disability in carefully selected MS patients. However, AHSCT is an intensive chemotherapy-based procedure associated with intrinsic risks, including profound cytopenia, infection, and organ toxicity, accompanied by an on-going degree of immuno-compromise and general deconditioning, which can be associated with a transient increase in functional impairment in the early stages after transplantation. Although international guidelines and recommendations have been published for clinical and technical aspects of AHSCT in MS, there has been no detailed appraisal of the rehabilitation needed following treatment nor any specific guidelines as to how this is best delivered by hospital and community-based therapists and wider multidisciplinary teams in order to maximize functional recovery and quality of life. These expert consensus guidelines aim to address this unmet need by summarizing the evidence-base for AHSCT in MS and providing recommendations for current rehabilitation practice along with identifying areas for future research and development.

Effectiveness of Upper Limb Wearable Technology for Improving Activity and Participation in Adult Stroke Survivors: Systematic Review.

BACKGROUND: With advances in technology, the adoption of wearable devices has become a viable adjunct in poststroke rehabilitation. Upper limb (UL) impairment affects up to 77% of stroke survivors impacting on their ability to carry out everyday activities. However, despite an increase in research exploring these devices for UL rehabilitation, little is known of their effectiveness. OBJECTIVE: This review aimed to assess the effectiveness of UL wearable technology for improving activity and participation in adult stroke survivors. METHODS: Randomized controlled trials (RCTs) and randomized comparable trials of UL wearable technology for poststroke rehabilitation were included. Primary outcome measures were validated measures of activity and participation as defined by the International Classification of Functioning, Disability, and Health. Databases searched were MEDLINE, Web of Science (Core collection), CINAHL, and the Cochrane Library. The Cochrane Risk of Bias Tool was used to assess the methodological quality of the RCTs and the Downs and Black Instrument for the quality of non RCTs. RESULTS: In the review, we included 11 studies with collectively 354 participants at baseline and 323 participants at final follow-up including control groups and participants poststroke. Participants' stroke type and severity varied. Only 1 study found significant between-group differences for systems functioning and activity (P≤.02). The 11 included studies in this review had small sample sizes ranging from 5 to 99 participants at an average (mean) age of 57 years. CONCLUSIONS: This review has highlighted a number of reasons for insignificant findings in this area including low sample sizes and the appropriateness of the methodology for complex interventions. However, technology has the potential to measure outcomes, provide feedback, and engage users outside of clinical sessions. This could provide a platform for motivating stroke survivors to carry out more rehabilitation in the absence of a therapist, which could maximize recovery. TRIAL REGISTRATION: PROSPERO CRD42017057715; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=57715.

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

OBJECTIVES: Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND. DESIGN: An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study. INTERVENTION: TiM telehealth plus usual care versus usual care. SETTING: A specialist MND care centre in the UK. PARTICIPANTS: Patients with MND and their primary informal carers. PRIMARY AND SECONDARY OUTCOME MEASURES: Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression. RESULTS: Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention. CONCLUSION: A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM. TRIAL REGISTRATION NUMBER: ISRCTN26675465.

Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre.

OBJECTIVES: To evaluate the processes involved in using a novel digitally enabled healthcare system (telehealth in motor neuron disease (TiM)) in people living with motor neuron disease (MND) and their informal carers. We examined TiM implementation, potential mechanisms of impact and contextual factors that might influence TiM implementation or impact. DESIGN: An 18-month, single-centre process evaluation within a randomised, pilot and feasibility study. INTERVENTION: TiM plus usual care versus usual care alone. SETTING: A specialist UK MND care centre. PARTICIPANTS: 40 patients with MND and 37 primary informal carers. PRIMARY AND SECONDARY OUTCOME MEASURES: Patient, carer and staff outcomes and experiences using semistructured interviews. Descriptive data on implementation and use of TiM. RESULTS: The TiM was acceptable and accessible to patients, carers and staff. Intervention uptake and adherence were good: 14 (70%) patients completed a TiM session at least fortnightly. Barriers to TiM use (such as technology experience and disability) were overcome with well-designed technology and face-to-face training. Reported potential benefits of TiM included improved communication and care coordination, reassurance, identification of complications and the potential for TiM to be an alternative or addition to clinic. Benefits depended on patients' current level of needs or disability. The main challenges were the large number of alerts that were generated by TiM, how the clinicians responded to these alerts and the mismatch between patient/carer expectations and nurses actions. This could be improved by better communication systems and adjusting the alerts algorithm. CONCLUSION: TiM has the potential to facilitate access to specialist care, but further iterative developments to the intervention and process evaluations of the TiM in different services are required. TRIAL IDENTIFIER NUMBER: ISRCTN26675465.

Guideline Development for Technological Interventions for Children and Young People to Self-Manage Attention Deficit Hyperactivity Disorder: Realist Evaluation.

BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is a complex neurodevelopmental disorder characterized by inattention, hyperactivity, and impulsivity. ADHD can affect the individual, the individual's family, and the community. ADHD is managed using pharmacological and nonpharmacological treatments, which principally involves others helping children and young people (CAYP) manage their ADHD rather than learning self-management strategies themselves. Over recent years, technological developments have meant that technology has been harnessed to create interventions to facilitate the self-management of ADHD in CAYP. Despite a clear potential to improve the effectiveness and personalization of interventions, there are currently no guidelines based on existing evidence or theories to underpin the development of technologies that aim to help CAYP self-manage their ADHD. OBJECTIVE: The aim of this study was to create evidence-based guidelines with key stakeholders who will provide recommendations for the future development of technological interventions, which aim to specifically facilitate the self-management of ADHD. METHODS: A realist evaluation (RE) approach was adopted over 5 phases. Phase 1 involved identifying propositions (or hypotheses) outlining what could work for such an intervention. Phase 2 involved the identification of existing middle-range theories of behavior change to underpin the propositions. Phase 3 involved the identification and development of context mechanism outcome configurations (CMOCs), which essentially state which elements of the intervention could be affected by which contexts and what the outcome of these could be. Phase 4 involved the validation and refinement of the propositions from phase 1 via interviews with key stakeholders (CAYP with ADHD, their parents and specialist clinicians). Phase 5 involved using information gathered during phases 1 to 4 to develop the guidelines. RESULTS: A total of 6 specialist clinicians, 8 parents, and 7 CAYP were recruited to this study. Overall, 7 key themes were identified: (1) positive rewarding feedback, (2) downloadable gaming resources, (3) personalizable and adaptable components, (4) psychoeducation component, (5) integration of self-management strategies, (6) goal setting, and (7) context (environmental and personal). The identified mechanisms interacted with the variable contexts in which a complex technological intervention of this nature could be delivered. CONCLUSIONS: Complex intervention development for complex populations such as CAYP with ADHD should adopt methods such as RE, to account for the context it is delivered in, and co-design, which involves developing the intervention in partnership with key stakeholders to increase the likelihood that the intervention will succeed. The development of the guidelines outlined in this paper could be used for the future development of technologies that aim to facilitate self-management in CAYP with ADHD.

The effectiveness of group exercise for improving activity and participation in adult stroke survivors: a systematic review.

BACKGROUND: Following post stroke rehabilitation, group exercise interventions can be used to continue improving cardiovascular fitness, activity levels, balance, gait, movement efficiency, and strengthening. However, little is known of the effectiveness of group exercise for improving activity and participation in stroke survivors. OBJECTIVES: This review aims to assess the effectiveness of group exercise for improving activity and participation in adult stroke survivors. DATA SOURCES: Databases searched were MEDLINE, Web of Science (Core collection), CINAHL, and the Cochrane Library. STUDY ELIGIBILITY CRITERIA: Randomised controlled trials (RCTs) of group exercise using validated outcome measures of activity and participation for post stroke rehabilitation. Two independent reviewers assessed all abstracts, extracted data, conducted a narrative synthesis and assessed the quality of all included articles. The Cochrane Risk of Bias Tool assessed methodological quality and included outcome measure quality was assessed. RESULTS: 14 RCTs were included (n=624 chronic stroke survivors collectively). Studies ranged between 12 and 243 stroke participants with an average of left:right hemisphere lesions of 32:39 and average age was 66.7 years. Although intervention and control groups improved, no significant difference between group differences were evident. CONCLUSION: and implications of key findings: The review found improvements are short-term and less evident at long-term follow up with little improvements in participation after 6months. However, this review was limited to the standard of intervention reporting. Further research should consider consistency in measuring underpinning mechanisms of group exercise interventions, which may explain the lack of activity changes in long-term follow-up. SYSTEMATIC REVIEW REGISTRATION NUMBER PROSPERO: CRD42017078917.

Is it feasible to conduct a randomised controlled trial of pretransplant exercise (prehabilitation) for patients with multiple myeloma awaiting autologous haematopoietic stem cell transplantation? Protocol for the PREeMPT study.

INTRODUCTION: While myeloma is an incurable malignancy, developments in disease management have led to increased life expectancy in recent years. Treatment typically involves stem-cell transplantation. Increased survival rates equate to more patients living with the burden of both the disease and its treatment for increasing number of years, rendering myeloma a long-term condition.Evidence exists to demonstrate the benefits of exercise for patients recovering from stem-cell transplantation, and prehabilitation-exercise before treatment-has been shown to be effective in other disease areas. To date there has been no research into prehabilitation in patients with myeloma awaiting transplantation treatment.Our objective is to determine whether it is feasible to conduct a randomised controlled trial into pretransplant exercise for patients with multiple myeloma who are awaiting autologous stem-cell transplantation. METHODS AND ANALYSIS: This mixed methods study identifies patients with diagnosis of multiple myeloma who have been assigned to the autologous transplantation list and invites them to participate in six weekly sessions of individualised, supervised exercise while awaiting transplantation.Quantitative data to determine feasibility targets include rates of recruitment, adherence and adverse events, and outcome measures including 6 min walking distance test and quality of life.Qualitative interviews are undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. ETHICS AND DISSEMINATION: Ethics committee approval has been obtained. Dissemination will be through open-access publications and presentations and will seek to reach multiprofessional bases as well as patients and carer groups, addressing the widespread interest in this area of research. TRIAL REGISTRATION NUMBER: NCT03135925; Pre-results.

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design.

OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. METHODS: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. RESULTS: We used these findings to develop a telehealth system (TiM) using an Android app into which patients and carers answer a series of questions about their condition on a weekly basis. The questions aim to capture all the physical, emotional, and social difficulties associated with MND. This information is immediately uploaded to the internet for review by the MND team. The data undergoes analysis in order to alert clinicians to any changes in a patient or carer's condition. CONCLUSIONS: We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.

Providing Sources of Self-Efficacy Through Technology Enhanced Post-Stroke Rehabilitation in the Home.

This research explores the impact of receiving feedback through a Personalised Self-Managed Rehabilitation System (PSMrS) for home-based post-stroke rehabilitation on the users' self-efficacy; more specifically, mastery experiences and the interpretation of biomechanical data. Embedded within a realistic evaluation methodological approach, exploring the promotion of self-efficacy from the utilisation of computer-based technology to facilitate post-stroke upper-limb rehabilitation in the home included; semi-structured interviews, quantitative user data (activity and usage), observations and field notes. Data revealed that self-efficacy was linked with obtaining positive knowledge of results feedback. Encouragingly, this also transferred to functional activities such as, confidence to carry out kitchen tasks and bathroom personal activities. Findings suggest the PSMrS was able to provide key sources of self-efficacy by providing feedback which translated key biomechanical data to the users. Users could interpret and understand their performance, gain a sense of mastery and build their confidence which in some instances led to increased confidence to carry out functional activities. However, outcome expectations and socio-structural factors impacted on the self-efficacy associated with the use of the system. Increasing the understanding of how these factors promote or inhibit self-management and self-efficacy is therefore crucial to the successful adoption of technology solutions and promotion of self-efficacy.

The Effectiveness of Lower-Limb Wearable Technology for Improving Activity and Participation in Adult Stroke Survivors: A Systematic Review.

BACKGROUND: With advances in technology, the adoption of wearable devices has become a viable adjunct in poststroke rehabilitation. Regaining ambulation is a top priority for an increasing number of stroke survivors. However, despite an increase in research exploring these devices for lower limb rehabilitation, little is known of the effectiveness. OBJECTIVE: This review aims to assess the effectiveness of lower limb wearable technology for improving activity and participation in adult stroke survivors. METHODS: Randomized controlled trials (RCTs) of lower limb wearable technology for poststroke rehabilitation were included. Primary outcome measures were validated measures of activity and participation as defined by the International Classification of Functioning, Disability and Health. Databases searched were MEDLINE, Web of Science (Core collection), CINAHL, and the Cochrane Library. The Cochrane Risk of Bias Tool was used to assess the methodological quality of the RCTs. RESULTS: In the review, we included 11 RCTs with collectively 550 participants at baseline and 474 participants at final follow-up including control groups and participants post stroke. Participants' stroke type and severity varied. Only one study found significant between-group differences for systems functioning and activity. Across the included RCTs, the lowest number of participants was 12 and the highest was 151 with a mean of 49 participants. The lowest number of participants to drop out of an RCT was zero in two of the studies and 19 in one study. Significant between-group differences were found across three of the 11 included trials. Out of the activity and participation measures alone, P values ranged from P=.87 to P ≤.001. CONCLUSIONS: This review has highlighted a number of reasons for insignificant findings in this area including low sample sizes, appropriateness of the RCT methodology for complex interventions, a lack of appropriate analysis of outcome data, and participant stroke severity.

Assessing Walking Strategies Using Insole Pressure Sensors for Stroke Survivors.

Insole pressure sensors capture the different forces exercised over the different parts of the sole when performing tasks standing up such as walking. Using data analysis and machine learning techniques, common patterns and strategies from different users to achieve different tasks can be automatically extracted. In this paper, we present the results obtained for the automatic detection of different strategies used by stroke survivors when walking as integrated into an Information Communication Technology (ICT) enhanced Personalised Self-Management Rehabilitation System (PSMrS) for stroke rehabilitation. Fourteen stroke survivors and 10 healthy controls have participated in the experiment by walking six times a distance from chair to chair of approximately 10 m long. The Rivermead Mobility Index was used to assess the functional ability of each individual in the stroke survivor group. Several walking strategies are studied based on data gathered from insole pressure sensors and patterns found in stroke survivor patients are compared with average patterns found in healthy control users. A mechanism to automatically estimate a mobility index based on the similarity of the pressure patterns to a stereotyped stride is also used. Both data gathered from stroke survivors and healthy controls are used to evaluate the proposed mechanisms. The output of trained algorithms is applied to the PSMrS system to provide feedback on gait quality enabling stroke survivors to self-manage their rehabilitation.

A Personalized Self-Management Rehabilitation System with an Intelligent Shoe for Stroke Survivors: A Realist Evaluation.

BACKGROUND: In the United Kingdom, stroke is the most significant cause of adult disability. Stroke survivors are frequently left with physical and psychological changes that can profoundly affect their functional ability, independence, and social participation. Research suggests that long-term, intense, task- and context-specific rehabilitation that is goal-oriented and environmentally enriched improves function, independence, and quality of life after a stroke. It is recommended that rehabilitation should continue until maximum recovery has been achieved. However, the increasing demand on services and financial constraints means that needs cannot be met through traditional face-to-face delivery of rehabilitation. Using a participatory design methodology, we developed an information communication technology-enhanced Personalized Self-Managed rehabilitation System (PSMrS) for stroke survivors with integrated insole sensor technology within an "intelligent shoe.". The intervention model was based around a rehabilitation paradigm underpinned by theories of motor relearning and neuroplastic adaptation, motivational feedback, self-efficacy, and knowledge transfer. OBJECTIVE: To understand the conditions under which this technology-based rehabilitation solution would most likely have an impact on the motor behavior of the user, what would work for whom, in what context, and how. We were interested in what aspects of the system would work best to facilitate the motor behavior change associated with self-managed rehabilitation and which user characteristics and circumstances of use could promote improved functional outcomes. METHODS: We used a Realist Evaluation (RE) framework to evaluate the final prototype PSMrS with the assumption that the intervention consists of a series of configurations that include the Context of use, the underlying Mechanisms of change and the potential Outcomes or impacts (CMOs). We developed the CMOs from literature reviews and engagement with clinicians, users, and caregivers during a series of focus groups and home visits. These CMOs were then tested in five in-depth case studies with stroke survivors and their caregivers. RESULTS: While two new propositions emerged, the second importantly related to the self-management aspects of the system. The study revealed that the system should also encourage independent use and the setting of personalized goals or activities. CONCLUSIONS: Information communication technology that purports to support the self-management of stroke rehabilitation should give significant consideration to the need for motivational feedback that provides quantitative, reliable, accurate, context-specific, and culturally sensitive information about the achievement of personalized goal-based activities.

A Personalized Self-Management Rehabilitation System for Stroke Survivors: A Quantitative Gait Analysis Using a Smart Insole.

BACKGROUND: In the United Kingdom, stroke is the single largest cause of adult disability and results in a cost to the economy of £8.9 billion per annum. Service needs are currently not being met; therefore, initiatives that focus on patient-centered care that promote long-term self-management for chronic conditions should be at the forefront of service redesign. The use of innovative technologies and the ability to apply these effectively to promote behavior change are paramount in meeting the current challenges. OBJECTIVE: Our objective was to gain a deeper insight into the impact of innovative technologies in support of home-based, self-managed rehabilitation for stroke survivors. An intervention of daily walks can assist with improving lower limb motor function, and this can be measured by using technology. This paper focuses on assessing the usage of self-management technologies on poststroke survivors while undergoing rehabilitation at home. METHODS: A realist evaluation of a personalized self-management rehabilitation system was undertaken in the homes of stroke survivors (N=5) over a period of approximately two months. Context, mechanisms, and outcomes were developed and explored using theories relating to motor recovery. Participants were encouraged to self-manage their daily walking activity; this was achieved through goal setting and motivational feedback. Gait data were collected and analyzed to produce metrics such as speed, heel strikes, and symmetry. This was achieved using a "smart insole" to facilitate measurement of walking activities in a free-living, nonrestrictive environment. RESULTS: Initial findings indicated that 4 out of 5 participants performed better during the second half of the evaluation. Performance increase was evident through improved heel strikes on participants' affected limb. Additionally, increase in performance in relation to speed was also evident for all 5 participants. A common strategy emerged across all but one participant as symmetry performance was sacrificed in favor of improved heel strikes. This paper evaluates compliance and intensity of use. CONCLUSION: Our findings suggested that 4 out of the 5 participants improved their ability to heel strike on their affected limb. All participants showed improvements in their speed of gait measured in steps per minute with an average increase of 9.8% during the rehabilitation program. Performance in relation to symmetry showed an 8.5% average decline across participants, although 1 participant improved by 4%. Context, mechanism, and outcomes indicated that dual motor learning and compensatory strategies were deployed by the participants.

Exploring the Experiences of Living With Stroke Through Narrative: Stroke Survivors' Perspectives.

Chronic illness models are normally used to explain and predict the experience of living with a long-term condition. The aim of this study was to present the findings of narrative interviews with stroke survivors and their family carers to understand their experiences of stroke. We interviewed five people with stroke and three family carers from the United Kingdom. We used thematic analysis to generate themes from their narrative accounts and then linked them to broader theoretical perspectives while influenced by the concept of reinterpretation of life. The narrative accounts of participants are mainly structured based on how their changed bodies poststroke changed their identities and roles and consequently their relationships with others. In this study, we underline the need for using methods like narrative to explain strategies that people use to make sense of their experiences of living with a long-term condition such as stroke.

Gait adaptations to awareness and experience of a slip when walking on a cross-slope.

Falls that occur as a result of a slip are one of the leading causes of injuries, particularly in the elderly population. Previous studies have focused on slips that occur on a flat surface. Slips on a laterally sloping surface are important and may be related to different mechanisms of balance recovery. This type of slip might result in different gait adaptations to those previously described on a flat surface, but these adaptations have not been investigated. The aim of this study was to assess whether, when walking on a cross-slope, young adults adapted their gait when made aware of a potential slip, and having experienced a slip. Gait parameters were compared for three conditions--(1) Normal walking; (2) Walking after being made aware of a potential slip (participants were told that a slip may occur); (3) Walking after experiencing a slip (Participants had already experienced at least one slip induced using a soapy contaminant). Gait parameters were only analysed for trials in which there was no slippery contaminant present on the walkway. Stride length and walking velocity were significantly reduced, and stance duration was significantly greater in the awareness and experience conditions compared to normal walking, with no significant differences in any gait parameters between the awareness and experience conditions. In addition, 46.7% of the slip trials resulted in a fall. This is higher than reported for slips induced on a flat surface, suggesting slips on a cross-slope are more hazardous. This would help explain the more cautious gait patterns observed in both the awareness and experience conditions.

Moving towards an enhanced community palliative support service (EnComPaSS): protocol for a mixed method study.

BACKGROUND: The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services. METHODS: A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents. DISCUSSION: The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services.

The SMART personalised self-management system for congestive heart failure: results of a realist evaluation.

BACKGROUND: Technology has the potential to provide support for self-management to people with congestive heart failure (CHF). This paper describes the results of a realist evaluation of the SMART Personalised Self-Management System (PSMS) for CHF. METHODS: The PSMS was used, at home, by seven people with CHF. Data describing system usage and usability as well as questionnaire and interview data were evaluated in terms of the context, mechanism and outcome hypotheses (CMOs) integral to realist evaluation. RESULTS: The CHF PSMS improved heart failure related knowledge in those with low levels of knowledge at baseline, through providing information and quizzes. Furthermore, participants perceived the self-regulatory aspects of the CHF PSMS as being useful in encouraging daily walking. The CMOs were revised to describe the context of use, and how this influences both the mechanisms and the outcomes. CONCLUSIONS: Participants with CHF engaged with the PSMS despite some technological problems. Some positive effects on knowledge were observed as well as the potential to assist with changing physical activity behaviour. Knowledge of CHF and physical activity behaviour change are important self-management targets for CHF, and this study provides evidence to direct the further development of a technology to support these targets.

Stroke patients' utilisation of extrinsic feedback from computer-based technology in the home: a multiple case study realistic evaluation.

BACKGROUND: Evidence indicates that post-stroke rehabilitation improves function, independence and quality of life. A key aspect of rehabilitation is the provision of appropriate information and feedback to the learner.Advances in information and communications technology (ICT) have allowed for the development of various systems to complement stroke rehabilitation that could be used in the home setting. These systems may increase the provision of rehabilitation a stroke survivor receives and carries out, as well as providing a learning platform that facilitates long-term self-managed rehabilitation and behaviour change. This paper describes the application of an innovative evaluative methodology to explore the utilisation of feedback for post-stroke upper-limb rehabilitation in the home. METHODS: Using the principles of realistic evaluation, this study aimed to test and refine intervention theories by exploring the complex interactions of contexts, mechanisms and outcomes that arise from technology deployment in the home. Methods included focus groups followed by multi-method case studies (n = 5) before, during and after the use of computer-based equipment. Data were analysed in relation to the context-mechanism-outcome hypotheses case by case. This was followed by a synthesis of the findings to answer the question, 'what works for whom and in what circumstances and respects?' RESULTS: Data analysis reveals that to achieve desired outcomes through the use of ICT, key elements of computer feedback, such as accuracy, measurability, rewarding feedback, adaptability, and knowledge of results feedback, are required to trigger the theory-driven mechanisms underpinning the intervention. In addition, the pre-existing context and the personal and environmental contexts, such as previous experience of service delivery, personal goals, trust in the technology, and social circumstances may also enable or constrain the underpinning theory-driven mechanisms. CONCLUSIONS: Findings suggest that the theory-driven mechanisms underpinning the utilisation of feedback from computer-based technology for home-based upper-limb post-stroke rehabilitation are dependent on key elements of computer feedback and the personal and environmental context. The identification of these elements may therefore inform the development of technology; therapy education and the subsequent adoption of technology and a self-management paradigm; long-term self-managed rehabilitation; and importantly, improvements in the physical and psychosocial aspects of recovery.