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In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.

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.

Introduction:Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development.Method:In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms.Findings:Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks.Discussion:It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.

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.

This research reports a qualitative study to explore the behavioral responses and reflections from Young Offenders undertaking an Equine-Facilitated Learning (efl) Intervention in prison in the United Kingdom. Learning was facilitated by an instructor, and the participants were taught introductory natural horsemanship skills. Establishments holding young adult prisoners are typically characterized by increased disruption to the regime, and by greater incidents of violence, bullying, and conflict than in other types of prison. A resulting challenge for those working with young prisoners is the need to respond to increased levels of social isolation, and difficulties in managing impulsivity, problem solving, temper, and conduct. It is hoped that this research will provide some initial evidence to contribute to ideas around the nature of learning practical, positive skills and knowledge through inter-species interactions.

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.

Background The end-of-life framework to improve care efficiency has fuelled the desire to achieve high-quality care, where innovation and evaluation are central components of change. However, implementation of innovations remains challenging, with a lack of understanding regarding the role and attributes of policy champions in the innovation process. Aim The aim of this study was to explore a local palliative cancer care physiotherapy service provision in the light of best practice recommendations. Method A single qualitative case study design provided a framework to facilitate the inclusion of multiple perspectives in a complex context within an area of healthcare where little research has been undertaken. Multiple methods of data collection gained a variety of perspectives, which included four data sets: interviews (healthcare professionals [10]); interviews (service users [10]); observations (physiotherapists [2] treating service users [5]); and policy document collection (NICE guidelines; white papers [12]). This was combined with a practice development project, which used a concept analysis approach and improvement framework to enable best practice to be implemented. A thematic approach to data analysis was used within and across the four datasets. Findings The research and practice development project combined to evidence the metamorphosis of both the physiotherapist profession and service provision where competencies around mentorship, entrepreneurship, leadership, policy championship, integrated teamwork, humanisation and self-reflection embodied within the psycho-social-cultural-spiritual model of healthcare enabled them to meet key policy recommendations of service quality and innovation. Conclusion Physiotherapists responded to the changing palliative cancer care environment, through the metamorphosis of their service provision and by addressing two out of the three key policy recommendations i) service quality and ii) innovation but not iii) measurement of service quality and innovation. A debate is necessary around the need for profession specific or service specific outcomes in this area and how physiotherapists can ‘prove their worth.’

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.

Exercise has been shown to be a physiological and psychological benefit for people with epilepsy (PWE). However, barriers prevent many PWE from exercising safely and confidently. This research explored current perceived barriers to exercise and adaptation techniques used by PWE in order to maintain physical activity levels. Three focus groups (2-3 participants per group) and three semi-structured interviews were conducted (11 participants total). Constructive grounded theory was used to frame the study and analyse the findings, presenting new insight into the motivation, perceived barriers, and adaptation techniques used to exercise. The main motivator to maintain physical activity levels was the benefit of exercise on physical and mental health. This was shown in an increase in mood, higher social interaction, and perceived improvement in overall physical health as a result of exercise. Current barriers to exercise included a fear of injury, lack of social support, and exercise-induced seizures (e.g., through overheating and/or high exercise intensity level). Adaptation techniques used were self-monitoring through the use of technology, reducing exercise frequency and intensity level, and exercising at certain times of the day. The importance of social support was shown to provide increased confidence and positive encouragement to exercise, contrasting with family and friends worrying for his/her safety and medical professionals requesting termination of some physical activities. These findings provide new insight into current adaptation techniques that are used and developed by PWE to overcome common barriers to exercise. These new additions to the literature can lead to further development of such techniques as well as examine current medical professionals' knowledge of the benefits of exercise for PWE.

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.

Care farming in the UK can help the agricultural community to remain viable and facilitate public interaction with the natural environment. It can also be therapeutic because it can address a range of public health and service provision issues by engaging people in farming activities and improving their health, social and educational circumstances. This paper presents the findings from a UK qualitative study exploring what care farming staff feel are the aims and potential outcomes of the experience they provide with their clients. Fifteen care farming staff were interviewed, using a semi-structured interview schedule. In summary the study findings show staff perceived that the care farm offered a homely, supportive environment where people can experience nature and sustainable food production. They perceived the care farm to be a place that provides an inclusive environment conducive to clients’ personal growth; it enables them to connect with themselves, others and nature and to develop autonomy. People can be themselves at the care farm where they have the opportunity to learn about themselves and nature. We consider how the issues care farm staff identified are linked with well-being theory.

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.

The ISES training principles provide an excellent starting point for professionals and horse owners. Currently, there does not seem to be an accepted protocol for evaluating horse training programs against the ISES principles. We suggest an approach to this, using Parelli Natural Horsemanship as our subject for evaluation. This initial pilot study (single-subject / n=1), trials two analytical methods, as applied to the current, video-based teaching materials from Parelli (latest DVD set, published and commercially available from 2015, supplied by Parelli for use in this study). The two methods used were: (i) ethology-based video observation / logging and (ii) discourse analysis of the language used to teach. The ethology-based approach uses an ethogram, which lists the behavioural characteristics of a human trainer adhering to the ISES principles. Computer-based ‘continuous sampling’ of Parelli video clips was used to log the frequencies of ISES principles. Inter Observer Reliability of the analysis to date was assessed using a two-way, mixed, absolute agreement, average-measures ICC (Intra Class Correlation). This evaluated observer agreement in the frequency count ratings for the ISES principles. Discourse analysis is a qualitative research methodology, applied across many domains including politics and health. Discourse analysis allows us to study transcripts of horse training materials, codifying the words, phrases and linguistic structures. Understanding the context within which training language is used, and its meaning to both the speaker and audience, makes it possible to evaluate compatibility with the ISES principles. Results for the ethology-based observations found all ISES principles present (1-10). High frequency counts for principles 2 & 10. Low counts for principles 5 & 7. Inter Observer Reliability (2 observers) was in the ‘excellent’ range (ICC=0.79). The high ICC value suggests that a minimal amount of measurement error was introduced by the independent observers, and therefore statistical power is not substantially reduced. At this stage (without an ICC value closer to 1.0 or further calibrating observers), increasing the evidence against random effects would require more extensive trials (p=0.16). The interim results from the discourse analysis shows consistent congruence between the Parelli materials and the ISES principles, particularly in the areas of: training according to the horse’s ethology and cognition, using learning theory appropriately, forming consistent habits, avoiding flight responses and ensuring that the horse should always be as calm as possible (1, 2, 7, 9 and 10).

This ethogram is based on Equitation Science’s ‘First Principles of Horse Training’. This is related to: North, S. 2016. Software Program: IPTEK (ISES Principles Training Evaluation Kit). DOI: 10.5281/zenodo.54821. Available from: http://dx.doi.org/10.5281/zenodo.54821 North, S., Hemingway, A., McLean, A. N., Laurie, H. & Ellis-Hill, C. 2016. How does Parelli measure up? (poster). In Proceedings of the 12th International Society for Equitation Science Conference (ISES2016) (ifce - institut français du cheval et de l’équitation, Saumur, France. June 23-25 2016). International Society for Equitation Science. http://dx.doi.org/10.13140/RG.2.1.3055.0644 North, S., Hemingway, A., McLean, A. N., Laurie, H. & Ellis-Hill, C. 2016. Evaluating a natural horsemanship program in relation to the ISES first principles of horse training. In Proceedings of the 12th International Society for Equitation Science Conference (ISES2016) (ifce - institut français du cheval et de l’équitation, Saumur, France. June 23-25 2016). International Society for Equitation Science. http://dx.doi.org/10.5281/zenodo.54733 North, S., Hemingway, A., McLean, A. N., Laurie, H. & Ellis-Hill, C. 2016. Evaluating a natural horsemanship program in relation to the ISES first principles of horse training. Journal of Veterinary Behavior: Clinical Applications and Research, 15, September–October, p.87. http://dx.doi.org/10.1016/j.jveb.2016.08.040. ISSN: 1558-7878 The ethogram for Equitation Science First Principles of Horse Training is intended to evaluate a method of horse training, ideally, from video recordings. It should be noted that each behavior in the ethogram is followed by its inverse: “INCORRECTLY describing or demonstrating…”. This allows logged observations to include examples that contradict the ISES ‘First Principles’ (should any be present). This is important because, whereas the absence of a specific principle might simply be a matter of differing emphasis, contradiction might indicate a more serious discongruity. The proposed ethogram is of human behaviour during horse training. It does not consider the horse-human dyad, during training interactions. Of course the horse’s response to human training is very informative. This ethogram mapsdirectly to equitation science’s ‘first principles’, which only describe the human aspects of an idealised horse / horsemanship training program. Therefore, horse behaviours do not feature in the ethogram.

Background/Aims: This paper illustrates the application of a technique, cognitive interviewing, which was used in the development of three questionnaires to determine the views of use of functional electrical stimulation by people with spinal cord injury, health care professionals and researchers working in spinal cord injury. Methods: Three questionnaires for the three populations were developed in order to explore views about the current and future use of functional electrical stimulation. The questionnaires were reviewed and discussed by the team. Cognitive interviews were carried out at participants' homes, university or workplace and each interview lasted a mean time of 65 minutes. The interviewer used ‘think aloud’ techniques. They were transcribed and analysed using content analysis. Results: Twelve participants (four people with spinal cord injury, four health care professionals and four researchers) from across the United Kingdom took part. The process identified several areas for modification, including clarification of words, format and legibility of questions, changes to sections, and the layout of the questionnaires. Conclusions: Cognitive interviewing ensured that the questionnaires were readable, clear and relevant, unambiguous and related to current clinical practice and research. The technique resulted in good quality questionnaires with enhanced patient-centred language.

This paper reports the findings of a participatory mixed methods study into the perceptions of Fair Access students on the factors which led them to consider accessing Higher Education. The study consisted of focus groups with thirteen first year Fair Access Students (female n=9, male n=4) studying at the university. The data from which was analysed thematically, identifying five themes (what others say, going to university to escape, influence of habitus, location and what the university offered). These five themes formed the basis of a Likert type questionnaire which was completed by 239 students (n=168 Fair Access, n=71 non-Fair Access). It was evident that students from Fair Access backgrounds have the same high aspirations as their non-Fair Access counterparts, as do their families. However they can be discouraged and disadvantaged in the application system due to a variety of reasons; within compulsory education (perceptions of teachers as well as a lack of careers advice and support), intuitional habitus of Higher Education Institutions (provision of pre-access information and support) as well as not identifying themselves as coming from a widening participation background, thus reducing the likelihood of a contextual offer. All of these could impact on the ability of an individual from a WP background being successful in obtaining a place to study in Higher Education.

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.

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.

Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity. Thirty in-depth interviews (i.e. initial and follow-up) were carried out with 15 co-resident carers of people with dementia who were recruited through local community mental health teams. Data were analysed using a grounded theory method. Overall, findings from initial interviews were taken back to the participants at the follow-up interviews. Five activity patterns were identified, which ranged from their usual activity patterns along a continuum through recognizable, illogical, irresponsible and finally reaching a dispossessed pattern. Carers used particular strategies and experienced particular emotional responses along this continuum. This work highlights the complex, temporal and dynamic nature of family carers' involvement in activity engagement. Clinician's interventions could be enhanced by: (1) recognizing the long-term experience of carers in decision making; (2) understanding the strategies used; (3) allowing carers to talk through and share their experiences in a non-judgmental way; (4) ensuring that carers are happy with any suggested interventions.

Recently able‐bodied people have taken up wheelchair sports. This paper aims to explore why people are taking up a sport which may be considered to ‘belong’ to disabled people and explore the impact of reverse integration. A questionnaire covering demographic details, experiences of wheelchair sport and perceptions of both able‐bodied and disabled wheelchair athletes was distributed by e‐mail via elite wheelchair athletic associations in the UK, Canada, The Netherlands and the USA. Twenty participants were recruited (11 disabled athletes, four female, and nine able‐bodied athletes, three female). Able‐bodied people initially became involved in wheelchair sports in order to share an activity with their disabled friends or family. Continuing participation was reinforced by friendship, challenge, achievement, the opportunity for good competition, development of the sport and to change society’s perceptions of disability. Perceptions varied according to the policies relating to inclusion adopted by the sports...

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.

This study was designed to determine the character of best occupational therapy practice for Parkinson's disease in the United Kingdom. Two hundred and forty-two occupational therapists treating people with Parkinson's disease were sent a Delphi survey containing statements about best practice and asked to indicate their level of agreement with each statement. The second survey contained the same list of statements, with group levels of agreement from the first round for each statement. The respondents re-rated their answers and gave their opinion on the efficacy of various interventions. One hundred and fifty occupational therapists (62%) completed both rounds. Ninety-nine per cent of the respondents agreed that Parkinson's disease required lifelong provision of occupational therapy, within multidisciplinary teams, and that the social and psychological aspects of the disease were as important as the physical ones. The occupational therapists had confidence in many techniques for achieving physical, social and psychological goals. However, 40% of the respondents could not rate the efficacy of social and psychological techniques owing to a lack of knowledge. There was a high level of consensus nationally on the character of best practice occupational therapy for Parkinson's disease. The survey highlighted a need for more postgraduate training, especially in psychological techniques.

Little is known about the current character of occupational therapy practice for Parkinson's disease in the United Kingdom. The study aimed to document this in order to inform plans for a future multicentre randomised controlled trial. Two hundred and forty-two occupational therapists that treated people with Parkinson's disease were sent a questionnaire regarding demographics, service organisation and therapy content. One hundred and sixty-nine occupational therapists (70%) responded. They had worked with people with Parkinson's disease for a median of 6 years and personally treated a median of 15 people with Parkinson's disease annually. Most (86%) were at senior grade or above; 87% worked in the National Health Service and 12% in social services. Forty per cent worked in specialist Parkinson's disease clinics. Most (79%) felt that they needed more specialist postgraduate training. Occupational therapists are employed in both health and social care settings. The character of the occupational therapy is often determined by the location in which it is provided. Current occupational therapy appears to focus on functional activities rather than on the wider social and psychological aspects of occupation. Many occupational therapists felt that they needed more specialist postgraduate training to treat people with Parkinson's disease effectively.

Background Evidence suggests that there is an increasing need for physiotherapists in palliative cancer care services. However, there is a lack of understanding of their role, educational needs and place within the rehabilitation team. The purpose of this study was to explore a local palliative cancer care physiotherapy service provision in light of best practice recommendations. Method A qualitative approach using a single case study design was chosen as it provided a framework to facilitate the inclusion of multiple perspectives in a complex context within an area of healthcare where little research has been undertaken. Multiple methods of data collection were used from numerous perspectives, which included four data sets: interviews (healthcare professionals [10]); interviews (service users [10]); observations (physiotherapists [2] treating service users [5]); and policy document collection (NICE guidelines; white papers [12]). Data collection occurred from 2008 to 2014 and detailed data analysis was carried out from 2012 to 2014 using a thematic approach within a framework, comparing and contrasting patterns within and across the four data sets. Findings Emergent themes highlighted a number of important aspects relating to physiotherapists including: new ways of working, shift in mindset and treatment planning, emotional adjustment and integration of professional boundaries. This evidenced a metamorphosis of both the physiotherapist’s profession and service provision through key competencies, such as entrepreneurial, leadership, policy champion and humanisation skills, which enabled them to meet essential policy recommendations of service quality and innovation. Conclusion This study provides a framework and unique perspective within which the physiotherapy profession can focus its attention on how physiotherapy needs to change in the future. However, a debate is necessary around the need for profession specific or service specific outcomes in this area, and how physiotherapists ‘prove their worth’ now that they are an integral part of palliative cancer care provision.

Background A scoping exercise and literature review of national and local initiatives highlighted innovation and evaluation as critical elements of change within the healthcare system, where NHS policies require healthcare professionals to research effective ways to deliver healthcare, including evaluation and service improvement. Gaps were identified through reflection in and on practice, within a dyspnoea clinic in a palliative care setting. The purpose of this practice improvement project was to promote patient-centred care, within which care decisions reflected the needs, values and beliefs of the palliative care service users and those providing the care. Method Firstly, a concept analysis approach was used to: a) identify service user needs b) demonstrate that improvement in practice was necessary and c) facilitate change. Secondly, a collaborative nurse/physiotherapist approach was chosen as a model of best practice for the delivery of the non-pharmacological approach to dyspnoea. Finally, an improvement framework which consisted of six elements 1) person-centredness, 2) evidence, 3) improvement processes, 4) enabling and sustaining change, 5) leadership and facilitation, 6) learning and development was used to enable best practice to be implemented into the clinic. Findings The literature review confirmed that the non-pharmacological approach to dyspnoea within a clinic setting continued to be gold standard best practice. It also highlighted that this approach could support people with cancer who were breathless but did not have lung metastases, as well as other chronic lung conditions and those with heart failure. Therefore, the referral criteria, documentation and outcomes for the clinic were revised and widened to include these conditions. Conclusion This evidence based improvement project reflected the needs, values and beliefs of people with dyspnoea and those providing the care meeting policy recommendations and hospice requirements. In doing so it provides information that would help in the future commissioning of dyspnoea clinics.

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.

Summary Physiotherapy assistants form approximately 20% of the work force within physiotherapy departments and yet little is known about them. The purpose of this study was to assess the current role of physiotherapy assistants in one NHS Region via postal questionnaire, identifying tasks performed and levels of responsibility and supervision; assessing the level of satisfaction of physiotherapy assistants; and comparing these findings with a previous study in 1991. A response rate of 85% (424 assistants) was achieved. The results showed that there is indication of increasing responsibility, independence and specialist skills of physiotherapy assistants since 1991. Training is locally determined and varied. Update of national training initiatives is limited. Overall physiotherapy assistants are satisfied with their jobs (91%). Specific areas of dissatisfaction are pay and career development. Satisfaction is associated with levels of supervision, in-service training and age (p

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.