Curing the blood and balancing life: Understanding, impact and health seeking behaviour following stroke in Central Aceh, Indonesia

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.Previous studies have highlighted the importance of understanding the subjective illness experience. Stroke, as the second highest cause of death and highest cause of adult morbidity internationally, is no exception. However, the research to date has significant gaps. Lay understandings of stroke in low and middle income countries remain poorly understood, and very few studies have explored the links between experience and the context in which they occur. These gaps in knowledge have resulted in insufficient attention being paid to the relevance of local contexts in the implementation of international and regional recommendations for stroke. The study presented in this thesis explores the experience of stroke in Central Aceh, Indonesia. It drew on phenomenology and ethnography and used a range of qualitative methods. People with stroke and their carers were involved in the examination of stroke understandings, its causation and mechanism, the impact of stroke on their lives, and actions taken to remediate the symptoms. This information was complemented with an in-depth study of healers, within the context of the health systems through which they operate. Further information on current social, religious and cultural practices was gathered through participant observation. The study revealed that lay understandings occurred within a range of explanatory models. Also highlighted was the complex relationship between the understanding of the condition, the impact on the family, and the health seeking behaviour. All were influenced by the specific context and an attempt to regain a homeostatic balance in life; within the person, with others, and with the supernatural. The results of this study demand critical interrogation of the international guidelines both for stroke and for policies to promote access to health personnel at the primary care leve

The complexities of 'otherness': reflections on embodiment of a young White British woman engaged in cross-generation research involving older people in Indonesia

This article has been made available through the Brunel Open Access Publishing Fund.If interviews are to be considered embodied experiences, than the potential influence of the embodied researcher must be explored. A focus on specific attributes such as age or ethnicity belies the complex and negotiated space that both researcher and participant inhabit simultaneously. Drawing on empirical research with stroke survivors in an ethnically mixed area of Indonesia, this paper highlights the importance of considering embodiment as a specific methodological concern. Three specific interactions are described and analysed, illustrating the active nature of the embodied researcher in narrative production and development. The intersectionality of embodied features is evident, alongside their fluctuating influence in time and place. These interactions draw attention to the need to consider the researcher within the interview process and the subsequent analysis and presentation of narrative findings. The paper concludes with a reinforcement of the importance of ongoing and meaningful reflexivity in research, a need to consider the researcher as the other participant, and specifically a call to engage with and present the dynamic nature of embodiment

Does ethnicity, gender or age of physiotherapy students affect performance in the final clinical placements? An exploratory study

This is the post-print version of the final paper published in Physiotherapy. The published article is available from the link below. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. Copyright @ 2013 Elsevier B.V.Objectives - To explore demographic differences in awarded marks of the final clinical placement in a physiotherapy undergraduate programme. Design - Retrospective analysis of clinical placement assessment marks. Setting - A London university offering clinical placements throughout South East England. Participants - 333 physiotherapy students entering physiotherapy training between 2005 to 2009. Main outcome measures Marks awarded following assessment using a clinical placement assessment form. Results - The mean mark (SD) for age were standard entry 71 (7.4) vs. mature entry 72 (7.99) (ns); for gender male 72 (8.45) vs. female 71 (7.21) (ns); and ethnicity White British 72 (7.71) vs. ethnic minority 70 (7.01) (p = 0.023). No interaction effects were observed between the independent variables and only ethnicity demonstrated a statistically significant effect (mean difference (MD) 2.4% 95%CI 0.5 to 4.3, F = 5.24, p = 0.023). This difference was maintained in most subcategories. Significant differences were observed for the interpersonal section (MD 2.21% 95%CI 0.14 to 4.28, F = 4.409, p = 0.03), the clinical reasoning section (MD 2.39% 95%CI 0.53 to 4.25, F = 6.37, p = 0.012) and the treatment section (MD 2.93 95%CI 1.10 to 4.83, F = 9.198, p = 0.003). Conclusions - Physiotherapy students from minority ethnic backgrounds were awarded a significantly lower mark than their white majority peers in final clinical placements, although the difference was small. Potential reasons are considered, with the strongest recommendation being for further enquiry into the potential relationship between ethnicity and success in undergraduate physiotherapy education

A racial inclusivity training resource for physiotherapy practice education : evaluation report 2022

Research within physiotherapy education in the UK has highlighted inequity in student attainment, including practice education, in relation to student ethnic background. Further research with students from minority ethnic backgrounds highlighted a number of concerns with belonging within the profession. On practice placement, this was illustrated through perceived differences with their educators, impact on assessment as well as racist encounters and micro-aggressions. For multiple reasons, students often felt unable to articulate these issues/experiences with their practice educators. A need was identified to support practice educators to further understand the student experience in order to enhance their ability to supervise without prejudice. Health Education England commissioned the development of an education package to begin to develop this support for practice educators. The training package was developed in 2022 by a group of four educationalists supported by a diverse co-creators team of experienced practice educators and current students with lived experience of racism within the profession

Perspectives on ageing, later life and ethniciy: Ageing research in ethnic minority contexts

This special issue focuses broadly upon questions and themes relating to the current conceptualisations, representations and use of ‘ethnicity’ (and ethnic minority experiences) within the field of social gerontology. An important aim of this special issue is to explore and address the issue of ‘otherness’ within the predominant existing frameworks for researching those who are ageing or considered aged, compounded by the particular constructions of their ethnicity and ethnic ‘difference’. The range of theoretical, methodological and empirical papers included in this collection provide some critical insights into particular facets of the current research agendas, cultural understandings and empirical focus of ethnic minority ageing research. The main emphasis is on highlighting the ways in which ethnic cultural homogeneity and ‘otherness’ is often assumed in research involving older people from ethnic minority backgrounds, and how wider societal inequalities are concomitantly (re)produced, within (and through) research itself – for example, based on narrowly defined research agendas and questions; the assumed age and/or ethnic differences of researchers vis-à-vis their older research participants; the workings of the formalised ethical procedures and frameworks; and the conceptual and theoretical frameworks employed in the formulation of research questions and interpretation of data. We examine and challenge here the simplistic categorisations and distinctions often made in gerontological research based around research participants’ ethnicity, age and ageing and assumed cultural differences. The papers presented in this collection reveal instead the actual complexity and fluidity of these concepts as well as the cultural dynamism and diversity of experiences within ethnic groups. Through an exploration of these issues, we address some of the gaps in existing knowledge and understandings as well as contribute to the newly emerging discussions surrounding the use of particular notions of ethnicity and ethnic minority ageing as these are being employed within the field of ageing studies.This special issue is one of the outcomes from the Economic and Social Research Council (ESRC) seminar series on ‘Ageing, Race and Ethnicity’ (project reference ES/J021547/1),held in the UK during 2012-2014. Open access for this editorial has been provided through the University of Nottingham open access funds

From dictatorship to a reluctant democracy: Stroke therapists talking about self-management

This article is made available through the Brunel Open Access Publishing Fund.Purpose: Self-management is being increasingly promoted within chronic conditions including stroke. Concerns have been raised regarding professional ownership of some programmes, yet little is known of the professional’s experience. This paper aims to present the views of trained therapists about the utility of a specific self-management approach in stroke rehabilitation. Method: Eleven stroke therapists trained in the self-management approach participated in semi-structured interviews. These were audio recorded, transcribed verbatim and analysed thematically. Results: Two overriding themes emerged. The first was the sense that in normal practice therapists act as ‘‘benign dictators’’, committed to help their patients, but most comfortable when they, the professional, are in control. Following the adoption of the self-management approach therapists challenged themselves to empower stroke survivors to take control of their own recovery. However, therapists had to confront many internal and external challenges in this transition of power resulting in the promotion of a somewhat ‘‘reluctant democracy’’. Conclusions: This study illustrates that stroke therapists desire a more participatory approach to rehabilitation. However, obstacles challenged the successful delivery of this goal. If self-management is an appropriate model to develop in post stroke pathways, then serious consideration must be given to how and if these obstacles can be overcome

Flipping the ICF: Exploring the Interplay of Theory and the Lived Experience to Reconsider Physical Activity in Community-Dwelling People With Multiple Sclerosis

People with multiple sclerosis (MS) report lower physical activity levels and are at a risk of becoming sedentary. As such, they are at an increased risk of developing secondary health conditions associated with inactivity. This is of major public health concern. Attempts to improve the physical activity levels in people with MS remain a challenge for health professionals. One key reason might be the lack of understanding about the meanings people with MS ascribe to exercise and physical activity. This paper draws on the key findings of a three-phased interconnected mixed methods sequential explanatory study to examine the meanings of exercise and physical activity from the perspectives of people with MS and health professionals. Phase 1 used a four-round Delphi questionnaire to scope and determine the consensus of priorities for exercise and physical activity and the reasons why people with MS (N = 101) engaged in these activities. Phase 2 used face-to-face semistructured interviews of people with MS (N = 16) to explore the meanings ascribed to exercise and physical activity. Phase 3 explored the perceptions of physiotherapists (N = 14) about exercise and physical activity using three focus groups. Using the International Classification of Functioning, Disability, and Health as a theoretical framework to underpin this study, the authors discuss the key factors, for example, emphasis on the contextual factors, that drive decision making around exercise and physical activity participation in people with MS and explore the clinical implications to health professionals

Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke (RHOMBUS II): protocol of a feasibility randomised controlled trial

Introduction Upper limb (UL) rehabilitation is most effective early after stroke, with higher doses leading to improved outcomes. For the stroke survivor, the repetition may be monotonous. For clinicians, providing a clinically meaningful level of input can be challenging. As such, time spent engaged in UL activity among subacute stroke survivors remains inadequate. Opportunities for the stroke survivor to engage with UL rehabilitation in a safe, accessible and engaging way are essential to improving UL outcomes following stroke. The NeuroBall is a non-immersive virtual reality (VR) digital system designed for stroke rehabilitation, specifically for the arm and hand. The aim of the Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke study is to determine the safety, feasibility and acceptability of the NeuroBall as a rehabilitation intervention for the UL in subacute stroke. Methods and analysis A feasibility randomised controlled trial (RCT) will compare the NeuroBall plus usual care with usual care only, in supporting UL rehabilitation over 7 weeks. Twenty-four participants in the subacute poststroke phase will be recruited while on the inpatient or early supported discharge (ESD) stroke pathway. Sixteen participants will be randomised to the intervention group and eight to the control group. Outcomes assessed at baseline and 7 weeks include gross level of disability, arm function, spasticity, pain, fatigue and quality of life (QoL). Safety will be assessed by recording adverse events and using pain, spasticity and fatigue scores. A parallel process evaluation will assess feasibility and acceptability of the intervention. Feasibility will also be determined by assessing fidelity to the intervention. Postintervention, semistructured interviews will be used to explore acceptability with 12 participants from the intervention group, four from the usual care group and with up to nine staff involved in delivering the intervention. Ethics and dissemination This trial has ethical approval from Brunel University London’s Research Ethics Committee 25257-NHS-Oct/2020-28121-2 and the Wales Research Ethics Committee 5 Bangor (Health and Care Research Wales) REC ref: 20/WA/0347. The study is sponsored by Brunel University London. Contact: Dr Derek Healy, Chair, University Research Ethics committee ([email protected]). Trial results will be submitted for publication in peer-reviewed journals, presented at national and international conferences and distributed to people with stroke. Trial registration number ISRCTN11440079; Pre-results

Individual student characteristics and attainment in pre-registration physiotherapy : a retrospective multi-site cohort study

Introduction: Worldwide there is a desire to diversify the physiotherapy workforce. However, limited research indicates that some student characteristics linked to under-representation in pre-registration physiotherapy education have lower attainment and greater attrition. This study explored the relationship between individual characteristics and success of students in pre-registration physiotherapy education within South East England. Design: A retrospective multi-site cohort study including pre-registration physiotherapy programmes in the South East of England. Anonymised data included background information (age, gender, ethnicity, socio-economic status) and outcomes (assessment marks, type of award and classification of degree). Analysis involved Bayesian regression models and ordinal logistic regression to examine the association of student characteristics on outcomes. Results: Data from 1851 student records were collected from four institutions. There were significantly lower assessment scores for Asian (-11.1% 95% CI: -13.1 to -9.2), Black (-7.1%, 95% CI: -9.7 to -4.5) and Other/Mixed ethnicity groups (-4.7%, 95% CI: -7.1 to -2.4), most notable in clinical and observed assessments, compared to their White British colleagues. All BME groups also demonstrated worse odds for a one step lower overall award or no award (Black OR: 3.35, Asian OR: 3.97, Other OR: 2.03). Associations of learning disability, age and non-traditional entry routes with assessment scores and/or degree classification were also noted. Conclusion: These findings suggest significant attainment gaps in pre-registration physiotherapy education in this specific geographical region, particularly for non-White ethnic and disability groups. The association with assessment type challenges educators to look beyond a purely student deficit model to explore all factors that may lead to inequality. © 2017 The Authors.Health Education North West London (HENWL) grant (P063)

Hope and despair: a qualitative exploration of the expereinces and impact of trial processes in a rehabilitation trial

Background Unanticipated responses by research participants can influence randomised controlled trials (RCTs) in multiple ways, many of which are poorly understood. This study used qualitative interviews as part of an embedded process evaluation to explore the impact participants may have on the study, but also unintended impacts the study may have on them. Aim The aim of the study was to explore participants’ experiences and the impact of trial involvement in a pilot RCT in order to inform the designing and delivery of a definitive RCT. Methods In-depth interviews with 20 participants (10 in the intervention and 10 in the control group) enrolled in a stroke rehabilitation pilot trial. A modified framework approach was used to analyse transcripts. Results Participation in the study was motivated partly by a desperation to receive further rehabilitation after discharge. Responses to allocation to the control group included an increased commitment to self-treatment, and negative psychological consequences were also described. Accounts of participants in both control and intervention groups challenge the presumption that they were neutral, or in equipoise, regarding group allocation prior to consenting to randomisation. Conclusions Considering and exploring participant and participation effects, particularly in the control group, highlights numerous issues in the interpretation of trial studies, as well as the in ethics of RCTs more generally. While suggestions for a definitive trial design are given, further research is required to investigate the significant implications these findings may have for trial design, monitoring and funding. Trial registration ClinicalTrials.gov, NCT02429180. Registered on 29 April/2015.The Stroke Associatio