The meaning of participation to stroke survivors: a qualitative study

Background/Aims: The effect of stroke can be all encompassing, and has an impact on significant roles in life. Assessing someone's level of participation is seen as essential to understanding the social impact of a disability on a person's life, and tailoring support accordingly. This study aimed to examine the meaning of participation to stroke survivors, in order to provide insight into the meaning of participation in the context of a stroke. Methods: A qualitative approach drawing on methods of phenomenology was used, with data collected via semi-structured interviews and a follow-up focus group. Analysis was undertaken using techniques of interpretative phenomenological analysis. Findings: Six stroke survivors and six carers were interviewed, and four stroke survivors attended a focus group. Three main themes in relation to the meaning of participation were identified in the data: ‘being actively involved’; ‘making meaningful choices’; and ‘being me’. Conclusions: The work confirms the findings of previous studies on participation, and adds to current understandings by developing the meaning of ‘involvement’ beyond a social concept. It highlights that ‘involvement’ can include active engagement in life through being alone. It also identifies a specific link between stroke survivors’ sense of self, and participation

Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

A semi‐active human digital twin model for detecting severity of carotid stenoses from head vibration—A coupled computational mechanics and computer vision method

In this work we propose a methodology to detect the severity of carotid stenosis from a video of a human face with the help of a coupled blood flow and head vibration model. This semi‐active digital twin model is an attempt to link non‐invasive video of a patient face to the percentage of carotid occlusion. The pulsatile nature of blood flow through the carotid arteries induces a subtle head vibration. This vibration is a potential indicator of carotid stenosis severity and it is exploited in the present study. A head vibration model has been proposed in the present work that is linked to the forces generated by blood flow with or without occlusion. The model is used to generate a large number of virtual head vibration data for different degrees of occlusion. In order to determine the in vivo head vibration, a computer vision algorithm is adopted to use human face videos. The in vivo vibrations are compared against the virtual vibration data generated from the coupled computational blood flow/vibration model. A comparison of the in vivo vibration is made against the virtual data to find the best fit between in vivo and virtual data. The preliminary results on healthy subjects and a patient clearly indicate that the model is accurate and it possesses the potential for detecting approximate severity of carotid artery stenoses

Knowledge and perception about stroke among an Australian urban population

BACKGROUND: The aim of the study was to measure knowledge about the symptoms, prevalence and natural history of stroke; the level of concern about having a stroke; understanding of the possibilities for preventing stroke, and the relationship between age, sex, country of origin, educational level, income, self-reported risk factors, and the above factors. METHODS: A random sample of households was selected from an electronic telephone directory in Newcastle and Lake Macquarie area of New South Wales, Australia, between 10 September and 13 October 1999. Within each household the person who was between 18 and 80 years of age and who had the next birthday was eligible to participate in the study (1325 households were eligible). The response rate was 62%. RESULTS: The most common symptoms of stroke listed by respondents were "Sudden difficulty of speaking, understanding or reading" identified by 60.1% of the respondents, and "paralysis on one side of body" identified by 42.0% of the respondents. The level of knowledge of the prevalence of a stroke, full recovery after the stroke, and death from stroke was low and generally overestimated. 69.9% of the respondents considered strokes as being either moderately or totally preventable. There were few predictors of knowledge. CONCLUSION: The study suggests that educational strategies may be required to improve knowledge about a wide range of issues concerning stroke in the community, as a prelude to developing preventive programmes

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery

Background  Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.  Objective  To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation.  Design  This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action-research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40-75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.  Discussion and Conclusion  Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post-trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2-arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation

Poststroke Trajectories: The Process of Recovery Over the Longer Term Following Stroke

We adopted a grounded theory approach to explore the process of recovery experienced by stroke survivors over the longer term who were living in the community in the United Kingdom, and the interacting factors that are understood to have shaped their recovery trajectories. We used a combination of qualitative methods. From the accounts of 22 purposively sampled stroke survivors, four different recovery trajectories were evident: (a) meaningful recovery, (b) cycles of recovery and decline, (c) ongoing disruption, (d) gradual, ongoing decline. Building on the concept of the illness trajectory, our findings demonstrate how multiple, interacting factors shape the process and meaning of recovery over time. Such factors included conception of recovery and meanings given to the changing self, the meanings and consequences of health and illness experiences across the life course, loss, sense of agency, and enacting relationships. Awareness of the process of recovery will help professionals better support stroke survivors

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

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. © 2014 Hughes et al.; licensee BioMed Central Ltd

Developing theory and practice: Creation of a Community of Practice through Action Research produced excellence in stroke care

The study was funded by a grant from the Special Trustees of the Trust. Copyright @ 2010 Informa UK, Ltd.This article has been made available through the Brunel Open Access Publishing Fund.This article has been made available through the Brunel Open Access Publishing Fund.Much emphasis is placed on expert knowledge like evidence-based stroke guidelines, with insufficient attention paid to processes required to translate this into delivery of everyday good care. This paper highlights the worth of creating a Community of Practice (CoP) as a means to achieve this. Drawing on findings from a study conducted in 2000/2002 of processes involved in establishing a nationally lauded high quality Stroke Unit, it demonstrates how successful development of a new service was linked to creation of a CoP. Recent literature suggests CoPs have a key in implementing evidence-based practice; this study supports this claim whilst revealing for the first time the practical knowledge and skills required to develop this style of working. Findings indicate that participatory and democratic characteristics of Action Research are congruent with the collaborative approach required for developing a CoP. The study is an exemplar of how practitioner researchers can capture learning from changing practice, thus contributing to evidence-based healthcare with theoretical and practical knowledge. Findings are relevant to those developing stroke services globally but also to those interested in evidencebased practice.This article is available through the Brunel Open Access Publishing Fund

Supporting people with aphasia to ‘settle into a new way to be’: speech and language therapists’ views on providing psychosocial support

Background: People with aphasia are at risk of becoming depressed and isolated. On-line surveys have found that the majority of Speech and Language Therapists (SLTs) lack confidence in addressing the psychological needs of people with aphasia. Aims: To explore how SLTs conceptualise the scope of their role; barriers and facilitators to SLTs addressing psychosocial needs; and SLTs’ experiences of specialist training and support, and working with mental health professionals (MHPs). Methods and procedures: Focus groups conducted in stroke healthcare settings. Purposive sampling was used in selecting sites so as to capture a range of experiences. Results were analysed using Framework Analysis. Outcomes and Results: Twenty-three SLTs took part in six focus groups. Participants’ psychosocial work included counselling-type interactions, psychoeducation, working with families, facilitating peer support, and training other healthcare professionals. There was a lack of consensus on the scope of the SLT role. Many expressed a sense of conflict, both perceiving it as valuable to spend time addressing psychological well-being, while simultaneously feeling uneasy if they deviated from ‘direct SLT’ work. Barriers to addressing psychosocial wellbeing were: emotionally challenging nature of this work, particularly for those who felt unsupported; caseload and time pressures; attitude of senior managers and commissioners; difficulties measuring and documenting more ‘fluid’ psychosocial work; and the complexity of needs and backgrounds of some patients. Enabling factors were: specialist on-going support; peer support from colleagues; experience; support of management; and personal belief. Specialist training was valued. It changed how participants viewed the therapist-client relationship (more client-led); the assessment and goal setting process; and gave them more confidence to acknowledge client emotions. However, many felt that there was a need for on-going specialist advice, and to be able to see approaches modelled for this client group. In terms of mental health professionals (MHPs), a subset of stroke specialist clinical psychologists worked directly with people with marked aphasia and families, as well as supporting the multidisciplinary team to provide holistic care. However, a main theme was that participants perceived many MHPs did not consider people with aphasia as ‘appropriate candidates’ for psychological input. Conclusions and Implications: All participants cared about the emotional well-being of their clients; however, they identified a number of barriers to people with aphasia receiving appropriate psychological support. A cultural shift, whereby psychological care for people with aphasia is seen as valuable, feasible and necessary, delivered collaboratively by SLTs, MHPs and the wider team, may improve services