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Background The need for dignity and compassion in healthcare is enshrined in policy, but is often difficult to enact in practice and what is precisely meant by these concepts is unclear. In this paper, we have explored theoretical underpinnings which form the basis of a lifeworld-led approach which was used in a research study to support the humanity of service providers and users alike. Aim In this article, we share our analysis of what we have learnt after undertaking an innovative appreciative action research project with patients and staff in a stroke ward with the aim of exploring if a novel phenomenologically driven and philosophically derived humanising framework could be applied in health care. Following the research, we wanted to develop a theoretical understanding of the processes occurring during the research in order to provide a framework and language which could be used to support practical lifeworld developments in the future. We analysed the approach through Participatory and Appreciative Action Reflection. Findings As researchers, we found that the approach was underpinned by four key existential principles. The first principle was recognising a mutually arising reality rather than a reality 'out there'. The second was recognising a reality which was constantly changing rather than 'fixed'. The third was recognising that we needed to work from within, as part of a human living system rather than trying to control reality from the 'outside'. Finally, we recognised that this reality could only be accessed through human knowing, including embodied knowing rather than intellectual knowing alone. These principles challenged many of the usual ways of thinking and working within research and healthcare contexts. Conclusion Understanding the processes and reality in this way gave new perspectives; enhancing our understandings and views of ourselves, what is important and most importantly what is possible in caring systems.

Purpose: Using a theory-led action research process test applicability of humanising care theory to better understand what matters to people and assess how the process can improve human dimensions of health care services. Consideration of the value of this process to guide enhancements in humanly sensitive care and investigate transferable benefits of the participatory strategy for improving human dimensions of health care services. Methods: Action research with service users, practitioners and academics, with participatory processes led through the application of theory via a novel Humanising Care Framework in two diverse clinical settings. Results: Participants engaged in a theory led participatory process, understood and valued the framework seeing how it relates to own experiences. Comparative analysis of settings identified transferable processes with potential to enhance human dimensions of care more generally. We offer transferable strategy with contextualised practical details of humanising processes and outcomes that can contribute to portable pathways to enhance dignity in care through application of humanising care theory in practice. Conclusions: The theoretical framework is a feasible and effective guide to enhance human dimensions of care. Our rigorous participative process facilitates sharing of patient and staff experience, sensitising practitioners’ understandings and helping develop new ways of providing theoretically robust person centred care based on lifeworld approaches.

Background Traumatic brain injury has a significant effect on uninjured family members. Typically, this has been examined with a focus on psychopathological outcomes including stress, depression and anxiety. However, in recent years there has been increasing interest in the subjective experiences of families post-injury leading to a plethora of qualitative studies. Therefore, an in-depth examination and synthesis of this literature is now relevant and timely. Objective To examine the subjective experiences of families following traumatic brain injury in adult populations in the sub/post-acute period through the synthesis of original qualitative research. Design This paper presents a meta-synthesis using Thomas and Harden's framework of ‘thematic synthesis’ rooted in a critical realist philosophy. Data sources In July 2019 five electronic databases, were searched for the terms ‘traumatic brain injury’, ‘family’ and ‘qualitative’. Studies were included if the primary research reported qualitative data about the subjective experiences of family members of adults with traumatic brain injury and had been published in a peer reviewed journal. Studies with mixed brain injury samples, child or adolescent traumatic brain injury or disorders of consciousness were excluded. Hand searching and citation searches were also completed. Review methods Two reviewers screened titles, abstracts and full text and reached consensus through critical discussion. Thirty papers were finally agreed for inclusion in this review. Each study was then assessed for relevance, resonance and rigour using the Critical Appraisal Skills Programme (CASP) tool. Line by line coding of the findings in each paper was conducted as the basis for a thematic analysis and synthesis. Results Descriptive themes were identified followed later by analytical themes. This final stage was informed by a narrative lens and from these, eight narrative functions belonging to four dimensions were identified from the subjective experiences of families post-traumatic brain injury. Specifically, these were: (1) Displacing and Anchoring; (2) Rupturing and Stabilising; (3) Isolating and Connecting; (4) Harming and Healing. Conclusions The interpretation of the narrative functions revealed the substantial existential work involved in negotiating lives, maintaining family system equilibrium and moving forward. As such, family members have their own unique narrative needs. Despite contemporary service models built around the injured person, service providers are well placed to support families in this everyday narrative work through actively attending to narrative structures and understanding the implications of these for family experience. The study protocol was registered with PROSPERO (International prospective register of systematic reviews) in July 2018 (Registration number: CRD42018085824). Tweetable abstract: This synthesis showed the immense and invisible work required for family members to maintain family system equilibrium and negotiate their lives post-TBI.

IntroductionPeople often experience distress following stroke due to fundamental challenges to their identity.ObjectivesTo evaluate (1) the acceptability of ‘HeART of Stroke’ (HoS), a community-based arts and health group intervention, to increase psychological well-being; and (2) the feasibility of a definitive randomised controlled trial (RCT).DesignTwo-centre, 24-month, parallel-arm RCT with qualitative and economic components. Randomisation was stratified by centre and stroke severity. Participant blinding was not possible. Outcome assessment blinding was attempted.SettingCommunity.ParticipantsCommunity-dwelling adults ≤2 years poststroke recruited via hospital clinical teams/databases or community stroke/rehabilitation teams.InterventionsArtist-facilitated arts and health group intervention (HoS) (ten 2-hour sessions over 14 weeks) plus usual care (UC) versus UC.OutcomesThe outcomes were self-reported measures of well-being, mood, capability, health-related quality of life, self-esteem and self-concept (baseline and 5 months postrandomisation). Key feasibility parameters were gathered, data collection methods were piloted, and participant interviews (n=24) explored the acceptability of the intervention and study processes.ResultsDespite a low recruitment rate (14%; 95% CI 11% to 18%), 88% of the recruitment target was met, with 29 participants randomised to HoS and 27 to UC (57% male; mean (SD) age=70 (12.1) years; time since stroke=9 (6.1) months). Follow-up data were available for 47 of 56 (84%; 95% CI 72% to 91%). Completion rates for a study-specific resource use questionnaire were 79% and 68% (National Health Service and societal perspectives). Five people declined HoS postrandomisation; of the remaining 24 who attended, 83% attended ≥6 sessions. Preliminary effect sizes for candidate primary outcomes were in the direction of benefit for the HoS arm. Participants found study processes acceptable. The intervention cost an estimated £456 per person and was well-received (no intervention-related serious adverse events were reported).ConclusionsFindings from this first community-based study of an arts and health intervention for people poststroke suggest a definitive RCT is feasible. Recruitment methods will be revised.Trial registration numberISRCTN99728983.

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life-world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care feel humanly focused. An action research group process in 2014-2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third-year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care.

Subjective changes are increasingly recognised as important in recovery and rehabilitation following traumatic brain injury. Accumulation of subjective changes overtime has led many to examine the question of ‘continuity of self’ post-injury. Vacillation between feeling the same and feeling different is common and often at odds with the medical narrative preparing individuals and families for permanent change. This position of ambiguity was examined in a qualitative narrative study. The aim of this paper is to describe the narrative structures used by uninjured members of a family to understand change. These changes relate to a. their perspective of whether and how the injured person had changed and b. whether and how they themselves had changed in the first-year post-injury. Nine uninjured family members from three families took part in three unstructured interviews during the first twelve months post-injury. In-depth narrative analysis showed how family members used biographical attendance; biographical disruption; biographical continuity and biographical reconstruction to understand change post-injury. Drawing on these findings we argue that concentrating on a narrative of change is too limiting and that engaging in biographical narratives may help humanise care provided to injured individuals and their families. Implications for research and practice are discussed.

Epilepsy is a common but hidden disorder, leading to stigma in everyday life. Despite stigma being widely researched, little is known about the impact of stigma for people with epilepsy within a sports and exercise setting. Using constructionist grounded theory, we explored the barriers and adaptations to exercise for people with epilepsy. Three focus groups (2–3 participants per group) and three semi-structured interviews were conducted (11 participants in total). Stigma negatively impacted joining team sports, running groups, and disclosure to others. The effect of stigma was reduced by educating others about epilepsy, thus creating more awareness and understanding.

An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers’ experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative’s daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative’s identity; enhancing a sense of connection with their relative’s role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed.

Aim To describe the challenges faced by those performing complex qualitative analysis during a narrative study and to offer solutions. Background Qualitative research requires rigorous analysis. However, novice researchers often struggle to identify appropriately robust analytical procedures that will move them from their transcripts to their final findings. The lack of clear and detailed accounts in the literature that consider narrative analysis and how to address some of the common challenges researchers face add to this problem. Data sources A longitudinal narrative case study exploring the personal and familial changes reported by uninjured family members during the first year of another family member’s traumatic brain injury. Review methods. This is a methodological paper. Discussion The challenges of analysis included: conceptualising analysis; demonstrating the relationship between the different analytical layers and the final research findings; interpreting the data in a way that reflected the priorities of a narrative approach; and managing large quantities of data. The solutions explored were: the mapping of analytic intentions; aligning analysis and interpretation with the conceptual framework; and the use of matrices to store and manage quotes, codes and reflections. Conclusion Working with qualitative data can be daunting for novice researchers. Ensuring rigorous, transparent, and auditable data analysis procedures can further constrain the interpretive aspect of analysis. Implications for research/practice. The solutions offered in this paper should help novice researchers to manage and work with their data, assisting them to develop the confidence to be more intuitive and creative in their research.

To explore the expectations of patients about to undergo prosthetic rehabilitation following a lower limb amputation.Qualitative study using semi structured interviews.Interviews were conducted at two district general hospitals.Eight patients who had undergone a major lower limb amputation due to vascular insufficiency were interviewed within two weeks of their amputation. All patients had been referred for prosthetic rehabilitation.Five key themes emerged from the interviews: uncertainty, expectations in relation to the rehabilitation service, personal challenges, the prosthesis and returning to normality. These findings illustrate how participants faced uncertainty both pre- and postoperatively and often looked towards established amputees for the provision of accurate information.As no previous research has specifically explored patients' expectations following an amputation, this study adds valuable insight into the patient experience. Patient expectations following lower limb amputation appeared to be vague and uninformed which may lead to uncertainty and passivity. It was found that patients did not know what to expect in relation to the rehabilitation process. They expected to return to a normal life following an amputation and this expectation appeared to be an important coping mechanism. Patient information and discussions should form an important part of the rehabilitation process before as well as during prosthetic rehabilitation, to help shape realistic expectations. This will allow patients to take a more active, informed role in the process. Psychoeducation interventions (talking) appears to be as important as "walking" within prosthetic rehabilitation services.

Chronic obstructive pulmonary disease (COPD) is a chronic respiratory disease that gives rise to symptoms of breathlessness, chronic fatigue, and cough. The impact of COPD on people’s activity has been widely acknowledged, yet it appears that we know little about how individuals experience activity. We employed a grounded theory study with 18 participants with COPD to explore their dimensions of activity. We identified two core concepts that captured participants’ experience of activity; these were stagnation and movement. We found fresh air to be the single most important aspect affecting participants’ experience of stagnation and movement; this was linked to a changed perception of symptoms. We identified the environment as an important context influencing the experience of COPD and activity. Our stagnation–movement theory explains the experience of activity within its environmental context, and how this experience might be affected on physical, social, and psychological levels.

Rehabilitation is highly complex, involving multiple processes, outcomes and stakeholders. The way we deliver our services and work with our clients and their families should be informed by research approaches that produce the wide range of knowledge needed. This article aims to explore the degree to which the dominant approach to 'evidence' (the randomised clinical trial or RCT) meets those needs and discuss alternate/additional ways of gaining evidence.A critical review of the literature allowing exploration of problems encountered in rehabilitation RCTs and alterative approaches.We discuss some problematic issues related to using RCTs in rehabilitation research (for example the large number of people excluded from trials, and the small numbers of people with some neurological conditions making RCTs non-viable). Alternative approaches are discussed including clinical practice improvement studies (sometimes called practice-based evidence or PBE), which provide data on patients treated in routine practice; qualitative research, which can provide an understanding of the users of health care services to ensure they are meeting their needs; and metasynthesis, which can be used to summarise several qualitative studies to enhance our understanding of the principles underlying service delivery. Finally, we explore how clinicians and commissioners often use evidence generated by forms of research other than the RCT.The best answers about how to enhance rehabilitation outcomes are likely to come from a combination and integration of the most appropriate methods. In conclusion, we urge for more joined up thinking, for learning from different fields so that we can develop more effective and appropriate health care and rehabilitation.

Aim: The aim of this study was to explore, using qualitative research methods, how pulmonary rehabilitation (PR) programmes affect the experience of activity and breathlessness of people with COPD. Methods: A qualitative, interview-based approach was employed. Participants were interviewed pre- and post-PR. Data were analysed using systematic strategies informed by grounded theory methods. Results: Nine participants (three female) took part. A change in participants' perception of breathlessness and lessening of fear of activity were the main themes identified. PR appeared to impact on the experience of physical social activities, allowing participants to overcome feelings of social isolation. Conclusions: Prior to PR, participants associated activities with breathlessness and panic; post PR, participants reported reduced fear and felt able to increase their activities. These findings add to our understanding of the impact of PR on individuals' experience of activity and may contribute to improved programmes by addressing patients' needs. © 2010 Primary Care Respiratory Society UK. All rights reserved.

Title. The use of conversational analysis: nurse–patient interaction in communication disability after stroke. Aim. This paper is a report of a study to explore how nursing staff and patients with aphasia or dysarthria communicate with each other in natural interactions on a specialist stroke ward. Background. Nursing staff often talk with patients in a functional manner, using minimal social or affective communication. Little nursing research has been carried out with patients who have communication difficulties. Conversational analysis, used in other healthcare settings, is a way to explore these interactions in depth in order to gain further understanding of the communication process. Method. An observational study was carried out in 2005 and the data were 35·5 hours of videotape recording and field notes with 14 nursing staff and five patients with aphasia or dysarthria. The recordings were analysed using conversation analysis. Findings. Nursing staff controlled the conversations by controlling the topic and flow of conversations, creating asymmetry in all interactions. Patients had very little input because of taking short turns and responding to closed questions. These behaviours are related to the institutional context in which they occur. Conclusion. In rehabilitation, the focus for interaction may be thought to be patient goals, worries or plans for the future, but in this study nursing staff controlled the conversations around nursing tasks. This may be because they do not have the confidence to hold conversations with people with communication problems. Nursing staff need to receive training to reinforce communication rehabilitation programmes and to engage more fully with patients in their care, but also that a wider institutional culture of partnership is developed on stroke wards.

In this article, we aim to develop the understanding of what helps or hinders resumption of valued activities up to 12-months post-stroke.As part of a longitudinal study, semi-structured interviews were conducted with 19 people with stroke and eight informal carers 12-months post-stroke. Interviews covered ongoing effects of stroke, experience of trying to resume activities highlighted as important pre-stroke and factors that influenced progress. Interviews were transcribed, coded and analysed in depth to explore this aspect of the experience of living with stroke.Valued activities discussed related to employment; domestic and social roles including driving; hobbies, sports and socialising. Outcomes for individuals were influenced by: aspects of physical or cognitive disability; environmental factors; the adaptability of the individual; support from others and professional help. Inability to resume activities impacted on people's sense of self and quality of life, but some tolerated change and presented themselves as adaptable.This study indicates a long-term role for rehabilitation services such as: identifying the significance of different types of activities; providing access to support and treatment for debilitating symptoms such as fatigue and dizziness; addressing patients' emotional and behavioural responses to their condition; working with patients' wider social networks and where appropriate, supporting adaptation to a changed way of life.

There is limited published research into what really matters to people living with chronic obstructive pulmonary disease (COPD). Most previous research in this area focuses on the impact of the symptoms of COPD, rather than on the issues defined as important by patients themselves. This paper describes an exploratory study investigating what is most important to people living with COPD. A qualitative approach employing in-depth interviews with COPD patients was chosen. Thematic analysis was used to code and categorize data. Six patients with `moderate' to `very severe' COPD were recruited. They considered engagement in specific activities to be very important (walking, household maintenance and driving), even though these activities were mainly centred around the home environment, or within confined spaces, due to their physical limitations. This restriction led to feelings of social isolation that these patients tried to overcome through social participation (holidays, social interaction). People with COPD often experience physical restrictions, which can lead to reduced community mobility and social isolation. In this study, despite their physical limitations, these patients had a strong desire to participate and be engaged in various activities. The importance of enabling patients to `participate' rather than just `do' should be considered when planning and delivering patient-centred interventions across the whole spectrum of severity of COPD. Chronic Respiratory Disease 2007; 4: 77—85

Introduction Over 152 000 people in the UK have strokes annually and a third experience residual disability. Low mood also affects a third of stroke survivors; yet psychological support is poor. While Arts for Health interventions have been shown to improve well-being in people with mild-to-moderate depression post-stroke, their role in helping people regain sense of self, well-being and confidence has yet to be evaluated. The main aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial to assess the effectiveness and cost-effectiveness of an Arts for Health group intervention (‘HeART of Stroke’ (HoS)) for stroke survivors. HoS is a 10-session artist-facilitated group intervention held in the community over 14 weeks. It offers a non-judgemental, supportive environment for people to explore sense of self, potentially enhancing well-being and confidence. Methods and analysis Sixty-four people, up to 2 years post-stroke, recruited via secondary care research staff or community stroke/rehabilitation teams in two UK centres will be randomised to either HoS plus usual care or usual care only. Self-reported outcomes, measured at baseline and approximately 5 months postrandomisation, will include stroke-related, well-being, mood, self-esteem, quality of life and process measures. Analyses will focus on estimating key feasibility parameters (eg, rates of recruitment, retention, intervention attendance). We will develop outcome and resource use data collection methods to inform an effectiveness and cost-effectiveness analysis in the future trial. Interviews, with a sample of participants, will explore the acceptability of the intervention and study processes, as well as experiences of the HoS group. Ethics and dissemination National Health Service (NHS), Research and Development and University ethical approvals have been obtained. Two peer-reviewed journal publications are planned plus one service user led publication. Findings will be disseminated at key national conferences, local stakeholder events and via institutional websites. This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0212-27054).

Aim To explore the narratives created by non‐injured family members in relation to themselves and their family in the first year after head injury. Background A head injury is a potentially devastating injury. The family responds to this injury by supporting the individual and their recovery. While the perspective of individual family members has been well documented, there is growing interest in how the family as a whole makes sense of their experiences and how these experiences change over time. Design Longitudinal narrative case study using unstructured in‐depth interviews. Methods Data were collected during an 18‐month period (August 2009–December 2010). Nine non‐injured family members from three families were recruited from an acute neurosurgical ward and individual narrative interviews were held at one, three and 12 months postinjury where participants were asked to talk about their experience of head injury. Analysis was completed on three levels: the individual; the family and between family cases with the aim of identifying a range of interwoven narrative threads. Findings Five interwoven narratives were identified: trauma, recovery, autobiographical, suffering and family. The narrative approach emphasized that the year posthead injury was a turbulent time for families, who were active agents in the process of change. Conclusion This study has shown the importance of listening to people's stories and understanding their journeys irrespective of the injured person's outcome. Change postinjury is not limited to the injured person: family members need help to understand that they too are changing as a result of their experiences.

With patient expertise being afforded greater legitimacy in healthcare provision, there is a strengthening case for involving patients more creatively in the education of healthcare professionals. This paper reports on the results of a small-scale educational research project designed to explore how third-year physiotherapy students experienced a teaching session on the subject of strokes, led by two expert patients, and what they learnt from it. Applying a qualitative methodology, six students were interviewed in depth about the experience. Four key pedagogic themes emerged from the analysis of the interview transcripts. The first related to the differences between the expert patients in terms of their backgrounds and their reactions to experiencing a stroke and of their respective contributions to the session. A second concerned the anxieties students felt in participating in a session of this kind, since there were various departures from the norm, and what they should take from it in terms of their learning. A third theme was uncertainty regarding the relationship between the presenters and students. The fourth theme was the impact on student learning given that it had not been a conventional session. Notwithstanding any misgivings the session helped to validate the contribution that those who have direct experience of a clinical condition can make to the education of healthcare professionals, particularly in the affective domain. In planning sessions of this kind it is recommended that presenters are chosen with a view to challenging stereotypes and that they are encouraged to tell their stories in an open and flexible manner, albeit within a framework of intended learning outcomes. Students need to approach the session with an open mind and, above all, tutors need to be prepared to take risks.

Aim(s) of the study. This study explores the relationship between informal carers of older people, and health care workers within the context of a hospital ward. Through an analysis of their language-based encounters the purpose of the study was to identify the discursive processes involved in face-to-face informal carer-health care worker interactions, during the course of carers' visits to one elderly care rehabilitation hospital ward. Design. An ethnomethodological research design, which encompassed the concerns of conversation analysis and the study of institutional interaction, was used. The study involved videotape recording informal carers naturally occurring spontaneous interactions with a range of health care workers on the ward. Data collection was carried out for between 1 and 3 hours, two to three times a week over a period of 3 months. The data comprised: 30 dyadic and group interactions involving 19 different carers and 25 different health care workers, including nurses (qualified and unqualified), physiotherapists, occupational therapists, dieticians, ambulance personnel, housekeepers and nursing auxiliaries. Detailed transcriptions of the data were produced and analysis was undertaken using a modified conversation analysis approach. Findings. Analysis revealed that a central aspect of the way the relationship between informal carers and health care workers is framed is by the way information and access to information is obtained. This paper examines some of the aspects of informal carer-health care worker discourse, which denote both parties as gatekeepers. In doing so it considers the roles that legitimatization of competence and knowledgeability have in facilitating informal carers interactions with health care workers. Conclusions. We conclude that the accomplishment of legitimacy is largely a collaborative undertaking on behalf of health care workers and informal carers. The implications of these findings for carers, health care workers, policy and future research are discussed.

This study explored adjustment in people with spinal cord injury; data from four focus groups are presented. Thematic analysis revealed four themes, managing goals and expectations, comparison with others, feeling useful and acceptance, showing participants positively engaged in life, positively interpreted social comparison information and set realistic goals and expectations. These positive strategies show support for adjustment theories, such as the Cognitive Adaptation Theory, the Control Process Theory and Response Shift Theory. These results also provide insight into the adjustment process of a person with spinal cord injury and may be useful in tailoring support during rehabilitation.

Functional electrical stimulation (FES) is a specialist technique that can be applied in several areas of spinal rehabilitation. The aim of the study was to explore views of people with spinal cord injuries (SCI), health care professionals specializing in SCI, and researchers in FES about the current and future use of FES. A qualitative design using eight focus groups lasting 90 to 120 min was carried out throughout the UK. Purposive sampling was used to ensure diversity in age, level of SCI, severity of injury, and experience using FES. Thematic analysis identified five key themes. Decisions to use FES related to concerns over the screening and suitability of FES, ensuring parity between patients, and offering FES at the right stage of rehabilitation. Positive aspects of using FES related to themes regarding "physical improvements" and "doing something active." Barriers to using FES concerned a lack of resources, such as equipment and staff training, and the view that some FES devices were unreliable. This research highlights the importance of understanding the user's needs in the design of FES devices; improving provision, prescription and allocation of FES resources, and the need to consider psychosocial issues related to the initiation and use of FES.

Dementia is a growing problem worldwide and interventions to effectively manage and promote function are urgently required. Multisensory environments (MSEs) have been used extensively with people with dementia; however, no studies have been conducted to explore the efficacy of sensory stimulation on functional performance. This study explores to what extent multisensory stimulation influences functional performance in people with moderate-to-severe dementia using an MSE compared with a control activity. Thirty participants with moderate-to-severe dementia were recruited from the South of England. Following baseline assessment and design of a bespoke intervention, each participant attended their allocated intervention (3 x week, for 4 weeks). Assessments were carried out pre and postsession using the Assessment of Motor and Process Skills. Results indicate significant improvement in functional performance in both the MSE and the control activity. Findings support the use of MSEs as a strategy for enhancing functional performance in dementia.

'Exercise on prescription' (EoP) schemes run by fitness instructors in leisure centres in the UK have potential to promote continued rehabilitation and activity engagement post-discharge from stroke physiotherapy. This study explores the views of physiotherapists, stroke patients and fitness instructors about the appropriateness and acceptability of EoP schemes for stroke patients post-discharge from physiotherapy.This qualitative study collected data from stroke patients referred to EoP, fitness instructors and referring physiotherapists (n = 30). Data were transcribed and analysed thematically. Exploration of key themes within and between groups was made.Referral to EoP appears to alleviate some of the distress that patients and physiotherapists experience at physiotherapy discharge and provide an opportunity for physiotherapists to wean patients from physiotherapy. However, concerns about risks to patients because of fitness instructors' low levels of knowledge about stroke and the limited monitoring of exercisers were identified. Physiotherapists are likely to refer only the most able patients post-stroke to EoP.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.

Objective To determine whether occupational therapy focused specifically on personal activities of daily living improves recovery for patients after stroke.

The purpose of this paper is to introduce the Life Thread Model, which incorporates established psychological and social theory related to identity change following an acquired disability. It is supported by a growing body of empirical evidence and can be used to broaden our understanding of service provision in rehabilitation. We suggest that a limited appreciation of social and psychological processes underpinning rehabilitation has led to different agendas for patients and professionals, lack of recognition of power relationships, negative views of disability, and insufficient professional knowledge about the management of emotional responses. The Life Thread Model, based on narrative theory and focusing on interpersonal relationships, has been developed following ten years of empirical research. Using the model, the balance of power between professionals and patients can be recognized. We suggest that positive emotional responses can be supported through (a) endorsing a positive view of self, (b) 'being' with somebody as well as 'doing' things for them; and (c) seeing acquired disability as a time of transition rather than simply of loss. This model highlights the usually hidden social processes which underpin clinical practice in acquired disability. Recognition of the importance of discursive as well as physical strategies widens the possibilities for intervention and treatment.

We evaluated the efficacy of physiotherapy, occupational therapy, and speech and language therapy in Parkinson's disease by synthesizing six Cochrane systematic reviews. All randomised, controlled trials examining the efficacy of a paramedical therapy versus control intervention and all those comparing the efficacy of two forms of active therapy in Parkinson's disease were included. Trials were identified by searching biomedical databases, reference lists, hand searching, and contacting investigators. The main outcome measures were quality of life, speech intelligibility, activities of daily living, and individual measures of motor and speech impairment. We identified 16 physiotherapy randomised controlled trials (399 patients), two occupational therapy trials (84 patients), and five speech and language therapy for dysarthria trials (154 patients). None of these studies examined nonpharmacological swallowing therapy for dysphagia. We were unable to perform meta-analysis of the results because the trials used heterogeneous therapy methods and outcome measures. The trials also had marked methodological flaws that could have introduced bias. In summary, we failed to find conclusive evidence of benefit for any form of paramedical therapy sufficient to recommend them in routine clinical practice. However, this lack of evidence is not proof of a lack of effect. Further large pragmatic randomised controlled trials are required to determine the effectiveness of paramedical therapies in Parkinson's disease.

Background: Assistive 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.Methods: two 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.Results: 292 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.Conclusion: key 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.

To explore the perceived life and identity changes described by individuals following a single stroke using a life narrative approach.Individuals admitted to hospital with a stroke, no previous disability, returning home; took part in life narrative interviews in hospital, and six months and one year post-discharge. The Gross Motor subscale of the Rivermead Motor Assessment and Nottingham 10 point Activities of Daily Living Scale were completed.Eight stroke respondents (five male, three female; mean age 67 years (range 56-82). The one year mean motor score was 9 (range 7-11) and self-care score was 9 (range 7-10). All respondents described a fundamental change in their lives and identity. The main issue was a split between themselves and their body. In hospital their body appeared to become separate, precarious and perplexing. By one year the majority still found their body unreliable, and their physical ability influenced by the social setting.The new experience of a split between self and body appears to be the focus of life for at least a year. This study suggests that rehabilitation professionals should consider longer-term (although not necessarily intensive) physical activity programmes that address these psychological as well as neuromuscular changes.

Objective: To determine whether respondents reported a change in identity following stroke.Design: A cross-sectional comparison study of perceived changes in the self-concept of stroke respondents and matched hospital volunteers. A questionnaire was administered to stroke respondents in their own homes and to hospital volunteers in their work setting.Participants: Twenty-six first-time stroke survivors who had no severe communication, cognitive or perceptual difficulties or previous physical disability, and who had returned home from hospital up to two years previously. The comparison group were 26 hospital volunteers matched for age, gender and the time from which past self-concept was considered.Main outcome measures: Included the Hospital Anxiety and Depression Scale, Frenchay Activity Index and the Head Injury Semantic Differential Scale to assess past and present self-concept.Results: Overall, individuals described themselves in more negative terms than prior to their stroke. They saw themselves as less interested, capable and independent, (p < 0.001) and less in control, satisfied and active (p < 0.05). They still saw themselves as friendly, calm, caring, hopeful and talkative. The overall self-concept of the comparison group remained positive and stable over a comparable time period.Conclusions: The stroke respondents reported a negative sense of self, reduced social activity and psychological morbidity despite inpatient and outpatient rehabilitation. Individuals following stroke may settle for a restricted future because of their expectations of life with a disability. Clinicians need to be aware of the meaning of the stroke within the life of each individual.

Summary Objectives To explore the experiences of chronic obstructive pulmonary disease (COPD) patients invited to join a pulmonary rehabilitation (PR) programme. PR has been shown to be an effective non-pharmacological intervention; however uptake and completion of programmes is frequently low. Design Qualitative study using semi-structured interviews Participants Twenty COPD patients aged 45–85 years, referred for PR over a 2-year period. Results In this group of patients the influence of the referring doctor was the key factor in leading patients to take up an invitation to attend a PR programme. Patients responded positively to doctors who imparted enthusiasm for, and belief in, the benefits of the intervention. Once started, ongoing adherence to the programme was positively influenced by a sense of group support, and increased self-confidence. Lack of social support at home and overcoming the effort of living with COPD in order to attend were cited as negative influences on continued adherence. Conclusions This study has shown that the referring doctor plays a key role in the uptake of PR programmes. It suggests that a positive approach by doctors could increase the level of adherence to PR. Recognition and support in the area of social support for those living alone may also increase adherence. These simple, cost effective approaches may encourage more patients with COPD to participate in a therapeutic intervention which now has a strong evidence base.