Caroline Ellis-Hill

Change in identity and self-concept: a new theoretical approach to recovery following a stroke:

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.

Self-body split: issues of identity in physical recovery following a stroke

Purpose : To explore the perceived life and identity changes described by individuals following a single stroke using a life narrative approach. Method : 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 postdischarge. The Gross Motor subscale of the Rivermead Motor Assessment and Nottingham 10 point Activities of Daily Living Scale were completed. Results : 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. Conclusion : 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.

Systematic review of paramedical therapies for Parkinson's disease

We evaluated the efficacy of physiotherapy, occupational therapy, and speech and language therapy in Parkinsons 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 Parkinsons 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 Parkinsons disease.

Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability

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.

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.

A Delphi survey of best practice occupational therapy for Parkinson's disease in the United Kingdom

This study was designed to determine the character of best occupational therapy practice for Parkinsons disease in the United Kingdom. Two hundred and forty-two occupational therapists treating people with Parkinsons 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 Parkinsons 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 Parkinsons disease. The survey highlighted a need for more postgraduate training, especially in psychological techniques.

Assistive technologies after stroke: self-management or fending for yourself? A focus group study

BackgroundAssistive Technologies, defined as “electrical or mechanical devices designed to help people recover movement” have demonstrated clinical benefits in upper-limb stroke rehabilitation. Stroke services are becoming community-based and more reliant on self-management approaches. Assistive technologies could become important tools within self-management, however, in practice, few people currently use assistive technologies. This study investigated patients’, family caregivers and health professionals’ experiences and perceptions of stroke upper-limb rehabilitation and assistive technology use and identified the barriers and facilitators to their use in supporting stroke self-management.MethodsA three-day exhibition of assistive technologies was attended by 204 patients, family caregivers/friends and health professionals. Four focus groups were conducted with people purposively sampled from exhibition attendees. They included i) people with stroke who had used assistive technologies (n = 5), ii) people with stroke who had not used assistive technologies (n = 6), iii) family caregivers (n = 5) and iv) health professionals (n = 6). The audio-taped focus groups were facilitated by a moderator and observer. All participants were asked to discuss experiences, strengths, weaknesses, barriers and facilitators to using assistive technologies. Following transcription, data were analysed using thematic analysis.ResultsAll respondents thought assistive technologies had the potential to support self-management but that this opportunity was currently unrealised. All respondents considered assistive technologies could provide a home-based solution to the need for high intensity upper-limb rehabilitation. All stakeholders also reported significant barriers to assistive technology use, related to i) device design ii) access to assistive technology information and iii) access to assistive technology provision. The lack of and need for a coordinated system for assistive technology provision was apparent. A circular limitation of lack of evidence in clinical settings, lack of funded provision, lack of health professional knowledge about assistive technologies and confidence in prescribing them leading to lack of assistive technology service provision meant that often patients either received no assistive technologies or they and/or their family caregivers liaised directly with manufacturers without any independent expert advice.ConclusionsConsiderable systemic barriers to realising the potential of assistive technologies in upper-limb stroke rehabilitation were reported. Attention needs to be paid to increasing evidence of assistive technology effectiveness and develop clinical service provision. Device manufacturers, researchers, health professionals, service funders and people with stroke and family caregivers need to work creatively and collaboratively to develop new funding models, improve device design and increase knowledge and training in assistive technology use.

Multisensory stimulation to improve functional performance in moderate to severe dementia - interim results

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.

Translation of evidence-based Assistive Technologies into stroke rehabilitation: users' perceptions of the barriers and opportunities

BackgroundAssistive Technologies (ATs), defined as “electrical or mechanical devices designed to help people recover movement”, demonstrate clinical benefits in upper limb stroke rehabilitation; however translation into clinical practice is poor. Uptake is dependent on a complex relationship between all stakeholders. Our aim was to understand patients’, carers’ (P&Cs) and healthcare professionals’ (HCPs) experience and views of upper limb rehabilitation and ATs, to identify barriers and opportunities critical to the effective translation of ATs into clinical practice. This work was conducted in the UK, which has a state funded healthcare system, but the findings have relevance to all healthcare systems.MethodsTwo structurally comparable questionnaires, one for P&Cs and one for HCPs, were designed, piloted and completed anonymously. Wide distribution of the questionnaires provided data from HCPs with experience of stroke rehabilitation and P&Cs who had experience of stroke. Questionnaires were designed based on themes identified from four focus groups held with HCPs and P&Cs and piloted with a sample of HCPs (N = 24) and P&Cs (N = 8). Eight of whom (four HCPs and four P&Cs) had been involved in the development.Results292 HCPs and 123 P&Cs questionnaires were analysed. 120 (41%) of HCP and 79 (64%) of P&C respondents had never used ATs. Most views were common to both groups, citing lack of information and access to ATs as the main reasons for not using them. Both HCPs (N = 53 [34%]) and P&C (N = 21 [47%]) cited Functional Electrical Stimulation (FES) as the most frequently used AT. Research evidence was rated by HCPs as the most important factor in the design of an ideal technology, yet ATs they used or prescribed were not supported by research evidence. P&Cs rated ease of set-up and comfort more highly.ConclusionKey barriers to translation of ATs into clinical practice are lack of knowledge, education, awareness and access. Perceptions about arm rehabilitation post-stroke are similar between HCPs and P&Cs. Based on our findings, improvements in AT design, pragmatic clinical evaluation, better knowledge and awareness and improvement in provision of services will contribute to better and cost-effective upper limb stroke rehabilitation.

Beyond the RCT - understanding the relationship between interventions, individuals and outcome - the example of neurological rehabilitation.

Background. 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. Methods. A critical review of the literature allowing exploration of problems encountered in rehabilitation RCTs and alterative approaches. Findings. 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. Conclusion. 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.