Meriel Norris

Self-management after stroke: time for some more questions?

Purpose: To discuss current research and issues which contribute towards the debate on the direction of self-management programmes for individuals after stroke and make recommendations for future research. Method: This paper includes a critical discussion on self-management specifically applied to stroke. The findings are positioned in the context of the wider stroke literature and debates on the suitability of different programmes. Results: Three main areas of concern and potential opportunities were identified which contribute to the debate on self-management; the “individual stroke survivor”; “professional models and practice” and “organizational context”. Conclusion: The body of literature on self-management programmes for people with stroke is relatively new and although research is building many issues are unknown. We have highlighted a number of potential areas of inquiry and concern. In order to further advance the research on stroke and self-management we believe a convergence of the evidence base for chronic disease self-management programmes and research which has illuminated the specific challenges and barriers of living with stroke is warranted. There is also a need to avoid the potential consequence of focusing on a “one-size” programme but rather develop interventions which can be inclusive of social aspects of self-management, and identify new methods of delivery. Implications for Rehabilitation Stroke is a common cause of long-term disability in the developed world Self-management programmes designed specifically for people with stroke are rare but research is emerging Ongoing research focusing on behaviour change should acknowledge individual needs, professional beliefs and values, as well as the organizational context post-stroke

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

Abstract 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. Implications for Rehabilitation Stroke therapists perceive that self-management is appropriate for encouraging ownership of rehabilitation post stroke. Numerous obstacles were identified as challenging the implementation of self-management post stroke. These included: professional models, practices and expectations; institutional demands and perceived wishes of stroke survivors. For self-management to be effectively implemented by stroke therapists, these obstacles must be considered and overcome. This should be as part of an integrated therapy service, rather than as an add-on.

INTERVENTIoN FIdElITy: dEVElopING AN ExpERIENCE-BASEd ModEl FoR REHABIlITATIoN RESEARCH

BACKGROUND Intervention fidelity is concerned with the extent to which interventions are implemented as intended. Consideration of fidelity is essential if the conclusions of effectiveness studies are to be credible, but little attention has been given to it in the rehabilitation literature. We describe our experiences addressing fidelity in the development of a rehabilitation clinical trial, and consider how an existing model of fidelity may be employed in rehabilitation research. METHODS We used a model and methods drawn from the psychology literature to investigate how fidelity might be maximised during the planning and development of a stroke rehabilitation trial. We considered fidelity in intervention design, provider training, and the behaviour of providers and participants. We also evaluated methods of assessing fidelity during a trial. RESULTS We identified strategies to help address fidelity in our trial protocol, along with their potential strengths and limitations. We incorporated these strategies into a model of fidelity that is appropriate to the concepts and language of rehabilitation. CONCLUSION A range of strategies are appropriate to help maximise and measure fidelity in rehabilitation research. Based on our experiences, we propose a model of fidelity and provide recommendations to inform the growing literature of fidelity in this discipline.

‘It burdens me’: the impact of stroke in central Aceh, Indonesia

The complex primary and secondary consequences of stroke have often been equated with the concept of biographical disruption, although a number of mediating factors have been identified. However, the research to date is almost exclusively based in western contexts, despite the fact that stroke is increasing most rapidly in low-income and middle-income countries. This research explores the experience of stroke in the rural community of central Aceh, Indonesia. The participants included 11 stroke survivors and 18 carers, with data collected through in-depth interviews and photographic facilitated interviews, supported with participant observation over a nine month period. The participants discussed and illustrated the disruptive result of their stroke, but for most, their ability to maintain religious duties and contribute to their family resulted in a form of biographical continuity. Their strategies and challenges are discussed alongside the implications for care in this context.

I feel like half my body is clogged up: Lay models of stroke in Central Aceh, Indonesia.

Stroke in low and middle income countries is an increasing cause of death and disability, with rates and the estimated burden considerably higher than that of high income countries. Lay explanatory models are believed to be one of the major influences on health seeking behaviour and essential to understand for appropriate education strategies. Despite stroke being a considerable health concern in Indonesia and particularly in Aceh, no studies to date have explored lay stroke models in that context. This paper presents the findings of a qualitative study informed by both hermeneutic phenomenology and ethnography. Based in rural communities in Bener Meriah and Aceh Tengah in Central Aceh, Indonesia, data were gathered through interviews, photographs and observations with 11 persons with stroke (aged 32-69 years) and 18 of their carers. Fieldwork was conducted over nine months between 2007 and 2008. The study examined lay concepts of stroke, described as a condition resulting from a local blockage in blood from multiple causes, many of which are not recognised within the biomedical frame. The blockage is understood to be reversible and therefore the condition curable. This understanding is embedded and sustained in the specific political, cultural, religious and social context. The results illustrate similarities and differences with other cross-cultural studies and suggest areas of future research and points of consideration for stroke education strategies.

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

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.

Community-based Rehabilitation Training after stroke: protocol of a pilot randomised controlled trial (ReTrain)

Introduction The Rehabilitation Training (ReTrain) intervention aims to improve functional mobility, adherence to poststroke exercise guidelines and quality of life for people after stroke. A definitive randomised controlled trial (RCT) is required to assess the clinical and cost-effectiveness of ReTrain, which is based on Action for Rehabilitation from Neurological Injury (ARNI). The purpose of this pilot study is to assess the feasibility of such a definitive trial and inform its design. Methods and analysis A 2-group, assessor-blinded, randomised controlled external pilot trial with parallel mixed-methods process evaluation and economic evaluation. 48 participants discharged from clinical rehabilitation despite residual physical disability will be individually randomised 1:1 to ReTrain (25 sessions) or control (exercise advice booklet). Outcome assessment at baseline, 6 and 9 months include Rivermead Mobility Index; Timed Up and Go Test; modified Patient-Specific Functional Scale; 7-day accelerometry; Stroke Self-efficacy Questionnaire, exercise diary, Fatigue Assessment Scale, exercise beliefs and self-efficacy questionnaires, SF-12, EQ-5D-5L, Stroke Quality of Life, Carer Burden Index and Service Receipt Inventory. Feasibility, acceptability and process outcomes include recruitment and retention rates; with measurement burden and trial experiences being explored in qualitative interviews (20 participants, 3 intervention providers). Analyses include descriptive statistics, with 95% CI where appropriate; qualitative themes; intervention fidelity from videos and session checklists; rehearsal of health economic analysis. Ethics and dissemination National Health Service (NHS) National Research Ethics Service approval granted in April 2015; recruitment started in June. Preliminary studies suggested low risk of serious adverse events; however (minor) falls, transitory muscle soreness and high levels of postexercise fatigue are expected. Outputs include pilot data to inform whether to proceed to a definitive RCT and support a funding application; finalised Trainer and Intervention Delivery manuals for multicentre replication of ReTrain; presentations at conferences, public involvement events; internationally recognised peer-reviewed journal publications, open access sources and media releases. Trial registration number NCT02429180; Pre-results.

Exploring the experience of facilitating self-management with minority ethnic stroke survivors: a qualitative study of therapists' perceptions.

Abstract Purpose: The utility of self-management with people from minority ethnic backgrounds has been questioned, resulting in the development of culturally specific tools. Yet, the use of stroke specific self-management programmes is underexplored in these high risk groups. This article presents the experience of stroke therapists in using a stroke specific self-management programme with stroke survivors from minority ethnic backgrounds. Methods: 26 stroke therapists with experience of using the self-management programme with stroke survivors from minority ethnic backgrounds participated in semi-structured interviews. These were audio recorded, transcribed verbatim and analysed thematically. Results: Three themes were identified. One questioned perceived differences in stroke survivors interaction with self-management based on ethnicity. The other themes contrasted with this view demonstrating two areas in which ethnic and cultural attributes were deemed to influence the self-management process both positively and negatively. Aspects of knowledge of health, illness and recovery, religion, family and the professionals themselves are highlighted. Conclusions: This study indicates that ethnicity should not be considered a limitation to the use of an individualized stroke specific self-management programme. However, it highlights potential facilitators and barriers, many of which relate to the capacity of the professional to effectively navigate cultural and ethnic differences. Implications for Rehabilitation Stroke therapists suggest that ethnicity should not be considered a barrier to successful engagement with a stroke specific self-management programme. Health, illness and recovery beliefs along with religion and the specific role of the family do however need to be considered to maximize the effectiveness of the programme. A number of the facilitators and barriers identified are not unique to stroke survivors from ethnic minority communities, nor shared by all. The therapists skills at negotiating identified barriers to self-management are highlighted as an area for further development.

Community-based rehabilitation training after stroke: results of a pilot randomised controlled trial (ReTrain) investigating acceptability and feasibility

Objectives To assess acceptability and feasibility of trial processes and the Rehabilitation Training (ReTrain) intervention including an assessment of intervention fidelity. Design A two-group, assessor-blinded, randomised controlled trial with parallel mixed methods process and economic evaluations. Setting Community settings across two sites in Devon. Participants Eligible participants were: 18 years old or over, with a diagnosis of stroke and with self-reported mobility issues, no contraindications to physical activity, discharged from National Health Service or any other formal rehabilitation programme at least 1 month before, willing to be randomised to either control or ReTrain and attend the training venue, possessing cognitive capacity and communication ability sufficient to participate. Participants were individually randomised (1:1) via a computer-generated randomisation sequence minimised for time since stroke and level of functional disability. Only outcome assessors independent of the research team were blinded to group allocation. Interventions ReTrain comprised (1) an introductory one-to-one session; (2) ten, twice-weekly group classes with up to two trainers and eight clients; (3) a closing one-to-one session, followed by three drop-in sessions over the subsequent 3 months. Participants received a bespoke home-based training programme. All participants received treatment as usual. The control group received an exercise after stroke advice booklet. Outcome measures Candidate primary outcomes included functional mobility and physical activity. Results Forty-five participants were randomised (ReTrain=23; Control=22); data were available from 40 participants at 6 months of follow-up (ReTrain=21; Control=19) and 41 at 9 months of follow-up (ReTrain=21; Control=20). We demonstrated ability to recruit and retain participants. Participants were not burdened by the requirements of the study. We were able to calculate sample estimates for candidate primary outcomes and test procedures for process and health economic evaluations. Conclusions All objectives were fulfilled and indicated that a definitive trial of ReTrain is feasible and acceptable. Trial registration number NCT02429180; Results.

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

ABSTRACT 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.