What do stroke survivors think about evidence based care they receive? Learning from insights at the periphery

Permission to archive the publisher pdf of this article was granted by the publisher in February 2012Rationale and aim of study: While exploring the experience of stroke survivors of secondary stroke prevention as part of a wider patient and public involvement service initiative, study participants willingly shared insights on other aspects of care that mattered to them. This is important as little is known about patients’ preferences for care. Methods: Data was generated from focus groups and semi-structured interviews that were held with 38 stroke survivors or their proxy respondents as part of an action research study. A framework analysis was used to examine data. Results: Our findings largely support current knowledge about the benefits of receiving evidence based stroke care. Although patients broadly appreciated being on a specialist unit, unexpectedly and contrary to best practice some expressed the wish to be treated elsewhere as they found the experience of being on a stroke unit difficult. Other findings included the need for more local peer support and difficulties surrounding transfer from hospital to home. Resultant actions included awareness training for staff about sensitively managing people’s perceptions about being on the stroke unit; development of shared computer based (IT) resources, and the establishment of a volunteer peer support system. Conclusion: The evidence base for the benefits of stroke unit care is unequivocal; however this model of care presents challenges for some. Involving patients in service development can inform small but key changes in practice that can help address inherent tensions in delivering evidence based services that are sensitive to patient preference.This project was funded by a grant from the Peninsula Primary Care Research Networ

Action for Rehabilitation from Neurological Injury (ARNI): A pragmatic study of functional training for stroke survivors

This article has been made available through the Brunel Open Access Publishing Fund. Copyright @ 2013 Cherry Kilbride et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.This study evaluated the effectiveness of a twelve-week community-based functional training on measures of impairment, activity and participation in a group of stroke survivors. Isometric strength of the knee musculature, Centre-Of-Pressure (COP) based measures of balance, Berg Balance Scale (BBS), 10 m walk test, and the Subjective Index of Physical and Social Out come (SIPSO), were recorded at baseline, post-intervention, and after twelve weeks (follow-up). Exercise instructors delivered training once a week in a group format at a community centre. Significant improvement was noted in the BBS (p < 0.002), and 10 m walk speed (p = 0.03) post intervention which remained unchanged at follow-up. Total SIPSO score improved significantly post-intervention (p = 0.044). No other significant differences and no adverse effects were observed. It is possible that functional training provided more opportunity for the improvement of dynamic aspects of balance control that could be captured by the BBS but not with the traditional measures of balance using COP data. Results also suggest positive effects on the level of participation, and lack of association between measures of impairment and activity. Community based functional training could be effective and used to extend access to rehabilitation services beyond the acute and sub-acute stages after stroke.London Borough of Hillingdo

Stroke units: The implementation of a complex intervention

This article reports on selected findings from an action research study that looked at the lessons learnt from setting up a new in-patient stroke service in a London teaching hospital. Key participants in the design and evaluation of this 2-year study included members of the multi-professional stroke team and support staff within the unit, the hospital management team and representatives of patients and carers. Mixed methods (focus groups, indepth interviews, audits, documentary analysis, participant observation field notes) were used to generate data. Findings demonstrated positive change overtime with four main themes emerging from the process: building a team; developing practice-based knowledge and skills in stroke; valuing the central role of the nurse in stroke care; and creating an organisational climate for supporting change. The interplay of these non-linear, but interrelated factors is supported by complexity theory, which includes exploration of how the sum of a whole can be more than its constituent parts. Findings are likely to be of interest to practitioners, managers and policy makers interested in supporting change in a learning organisation

To adopt is to adapt: The process of implementing the ICF with an acute stroke multidisciplinary team in England

Copyright @ 2012 Informa Plc. The article can be accessed from the link below.This article has been made available through the Brunel Open Access Publishing Fund.Purpose: The success of the International Classification of Functioning, Disability and Health (ICF) depends on its uptake in clinical practice. This project aimed to explore ways the ICF could be used with an acute stroke multidisciplinary team and identify key learning from the implementation process. Method: Using an action research approach, iterative cycles of observe, plan, act and evaluate were used within three phases: exploratory; innovatory and reflective. Thematic analysis was undertaken, using a model of immersion and crystallisation, on data collected via interview and focus groups, e-mail communications, minutes from relevant meetings, field notes and a reflective diary. Results: Two overall themes were determined from the data analysis which enabled implementation. There is a need to: (1) adopt the ICF in ways that meet local service needs; and (2) adapt the ICF language and format. Conclusions: The empirical findings demonstrate how to make the ICF classification a clinical reality. First, we need to adopt the ICF as a vehicle to implement local service priorities e.g. to structure a multidisciplinary team report, thus enabling ownership of the implementation process. Second, we need to adapt the ICF terminology and format to make it acceptable for use by clinicians.This study is funded by The Elizabeth Casson Trust. This article is made available through the Brunel Open Access Publishing Fund

Contemporary splinting practice in the UK for adults with neurological dysfunction: A cross-sectional survey

This article is made available through the Brunel Open Access Publishing Fund.Aim: To explore the contemporary splinting practice of UK occupational therapists and physiotherapists for adults with neurological dysfunction. Method: Cross-sectional online survey of members of the Association of Chartered Physiotherapists in Neurology and College of Occupational Therapists Specialist Section Neurological Practice. Results: Four hundred and twenty therapists completed the survey. Contracture management is the most common rationale for therapists splinting adults with neurological dysfunction. Other shared therapeutic goals of splinting include maintaining muscle and joint alignment, spasticity management, function, pain management and control of oedema. Considerable clinical uncertainty was uncovered in practice particularly around wearing regimens of splints. Most therapists have access to locally-derived splinting guidelines, which may contribute to this diversity of practice. Conclusions: This study provides a unique insight into aspects of contemporary splinting practice among UK therapists, who belong to a specialist neurological professional network and work in a number of different health-care settings with adults who have a neurological condition. Study findings show a wide variation in splinting practice, thereby indicating a potential need for national guidance to assist therapists in this area of clinical uncertainty. Further research is required to establish best practice parameters for splinting in neurological rehabilitation

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

Secondary prevention of stroke: Using the experiences of patients and carers to inform the development of an educational resource

Copyright @ The Author 2008. This article is available open access through the publisher’s website at the link below.Background. Patients who have had one stroke are at increased risk of another. Secondary prevention strategies that address medical risk factors and promote healthy lifestyles can reduce the risk. However, concordance with secondary prevention strategies is poor and there has been little research into patient and carer views. Objectives. To explore the experiences of patients and carers of receiving secondary prevention advice and use these to inform the development of an educational resource. Methods. A total of 38 participants (25 patients and 13 carers) took part in the study which used an action research approach. Focus groups and interviews were undertaken with patients and carers who had been discharged from hospital after stroke (between 3 and 24 months previously). Framework analysis was used to examine the data and elicit action points to develop an educational resource. Results. Participants’ main concern was their desire for early access to information. They commented on their priorities for what information or support they needed, the difficulty of absorbing complex information whilst still an in-patient and how health professionals’ use of language was often a barrier to understanding. They discussed the facilitators and barriers to making lifestyle changes. The educational resource was developed to include specific advice for medical and lifestyle risk factors and an individual action plan. Conclusion. An educational resource for secondary prevention of stroke was developed using a participatory methodology. Our findings suggest that this resource is best delivered in a one-to-one manner, but further work is needed to identify its potential utility.Peninsula Primary Care Research Networ

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

Much emphasis is placed on expert knowledge such as evidence based stroke guidelines, but not enough attention is paid to the processes that are 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 2000 - 2002 of the processes involved in establishment of 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 role in the implementation of 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 also indicate that the participatory and democratic characteristics of Action Research are congruent with the collaborative approach required for the development of 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 as well as practical knowledge. Findings are relevant to those developing stroke services globally but also to those interested in evidence-based practice. (198

Incidence, time course and predictors of impairments relating to caring for the profoundly affected arm after stroke: A systematic review

Background and purpose - A significant number of stroke survivors will not recover the use of their affected arm. A proportion will experience pain, stiffness and difficulty with basic care activities. The purpose of the review was to identify predictors of difficulty caring for the profoundly affected arm and establish the incidence and time-course of the related impairments of pain, spasticity and contracture. Method - Data sources: Databases (PubMED, MEDLINE, AMED, EMBASE, CINAHL and the Cochrane Controlled Trials Register) were searched from inception to December 2013. Additional studies were identified from citation tracking. Review methods: Independent reviewers used pre-defined criteria to identify eligible studies. Quality assessment and risk of bias were assessed using the McMasters Assessment Tool. A narrative evidence synthesis was performed. Results - Thirty-nine articles reporting 34 studies were included. No studies formally measured difficulty caring for the arm, but related impairments were common. Incidence of spasticity in those with weakness ranged from 33% to 78%, shoulder pain affected 22% to 90% and contracture was present in at least 50%. Spasticity and pain appear within 1 week of stroke, and contracture within two weeks. Impairments continued to develop over at least 3–6 months. The most frequent predictors of spasticity and contracture were weakness and reduced motor control, and the risk of pain is most commonly predicted by reduced sensation, shoulder subluxation, weakness and stroke severity. Discussion - There is no published evidence on predicting the likelihood of difficulty caring for the arm following stroke. However, the related impairments of spasticity, pain and contracture are common. Given the time-course of development, clinicians may need not only to intervene early but also be prepared to act over a longer time period. Further research is needed to examine difficulty caring for the arm and the relationship with associated impairments to enable researchers and clinicians to develop targeted interventions

Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study

BACKGROUND: Advances in technology means that domiciliary non-invasive ventilation (NIV) devices can be remotely monitored via modems in patients' homes. Possible benefits and challenges of modem technology have yet to be established. This study explored the perspectives and experiences of patients, their carers and healthcare professionals (HCPs) on the addition of modem technology in managing home NIV. METHODS: A qualitative study using a combination of focus groups for HCPs and interviews for carers/patients was undertaken. 12 HCPs and 22 patients/carers participated. These focus groups and interviews were audio-recorded, transcribed verbatim and analysed thematically. RESULTS: Five main themes were identified. 'Surveillance: a paradox of findings': HCPs were concerned about unduly scrutinising patients' lives, potentially impacting on HCP patient relationships. Conversely, patients welcomed modem monitoring and did not express concerns regarding invasion of privacy. 'Sanctions': HCPs reported the modem increased access to care and allowed appropriate assessment of ongoing treatment. 'Complacency and ethics': HCPs expressed concerns patients may become complacent in seeking help due to expectations of modem monitoring, as well as being concerned regarding the ethics of modems. There was a suggestion patients and carers' expectations of monitoring were different to that of clinical practice, resulting in complacency in some cases. 'Increased time for patient focused care': HCPs in the focus groups described a number of ways in which using modems was more efficient. 'Confidence: can be improved with technology': patients and carers were positive about the impact of the modems on their health and well-being, particularly their confidence. CONCLUSION: HCPs expressed concerns about surveillance were not corroborated by patients, suggesting acceptability of remote monitoring. Data suggests a need for increased clarity to patients/carers regarding clinical practice relating to responsiveness to modem data. The issue of complacency requires further consideration. Modem technology was acceptable and considered a useful addition by HCPs, patients and carers. TRIAL REGISTRATION NUMBER: NCT03905382