Enhanced clarity and holism: The outcome of implementing the ICF with an acute stroke multidisciplinary team in England

This article is made available through the Brunel Open Access Publishing Fund.Purpose: Although it is recommended that the ICF (International Classification of Functioning, Disability and Health) should be implemented to aid communication within multidisciplinary stroke services, there is no empirical evidence to demonstrate the outcomes of such implementation. Working with one stroke service, this project aimed to address this gap and sought to evaluate the outcomes of implementing an ICF-based clinical tool into practice. Method: Using an action research framework with mixed methods, data were collected from individual interviews, a focus group, questionnaires, email communications, minutes from relevant meetings and field notes. Thematic analysis was undertaken, using immersion and crystallisation, to define overall themes. Descriptive statistics were used to analyse quantitative data. Data from both sources were combined to create key findings. Results: Three findings were determined from the data analysis. The ICF (1) fosters communication within and beyond the multidisciplinary stroke team; (2) promotes holistic thinking; and (3) helps to clarify team roles. Conclusions: The ICF enhanced clarity of communication and team roles within the acute stroke multidisciplinary team as well as with other clinicians, patients and their relatives. In addition, the ICF challenged stroke clinicians to think holistically, thereby appropriately extending their domain of concern beyond their traditional remit. Implications for Rehabilitation: (1) The ICF is a globally accepted framework to describe functioning and is in use in a variety of clinical settings. Yet, the outcomes of using it in clinical practice have yet to be fully explored. (2) This study found that the ICF enhanced clarity of communication and team roles within an acute stroke multidisciplinary team and to others beyond the team, including clinicians, patients and their relatives. (3) Using the ICF also challenged clinicians to think holistically about patient needs following a stroke.The Elizabeth Casson Trus

“Struggling to stay connected”: comparing the social relationships of healthy older people and people with stroke and aphasia

Background: Having a stroke and aphasia can profoundly affect a person’s social relationships. Further, poor social support is associated with adverse post-stroke outcomes such as psychological distress, worse quality of life, and worse recovery. To date, no study has used complex measures of social network and perceived social support to compare stroke survivors with aphasia, without aphasia, and the general older population. A better understanding of which aspects of social support are most affected by stroke and aphasia may inform stroke services. Aims: To compare the social networks and perceived functional social support of people following a stroke, with and without aphasia, and healthy older adults. Methods & Procedures: Cross-sectional interview-based study. People with a first stroke were recruited from two acute stroke units and interviewed 6 months post onset. We recruited 60 stroke participants without aphasia, average age 69.8 (SD = 14.3), and 11 stroke participants with aphasia, average age 66.5 (SD = 13.7). One hundred and six healthy older adults were recruited via the community, average age 62.8 (SD = 9.5). All participants completed the Medical Outcomes Study Social Support Survey (SSS) and the Stroke Social Network Scale (SSNS). One-way independent groups ANOVAs were used to compare stroke participants with aphasia, stroke participants without aphasia, and healthy older adults. Outcomes & Results: After adjusting for multiple comparisons (p < .004), there was a significant difference on overall social network between the three groups (p < .001), with those with aphasia scoring significantly lower than healthy older adults (p < .001). The difference between healthy older adults and people with aphasia on the friends domain of the social network scale was also significant (p = .002). There was no significant difference between the three groups on overall perceived functional social support. Conclusions: People with aphasia have less diverse social networks than healthy older adults, with friendships particularly affected. Stroke services should monitor for social isolation, and consider ways to support people following a stroke in maintaining or establishing diverse social networks

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

Outcome measures in post-stroke arm rehabilitation trials: do existing measures capture outcomes that are important to stroke survivors, carers, and clinicians?

Objective: We sought to (1) identify the outcome measures currently used across stroke arm rehabilitation randomized trials, (2) identify and compare outcomes important to stroke survivors, carers and clinicians and (3) describe where existing research outcome measures capture outcomes that matter the most to stroke survivors, carers and clinicians and where there may be discrepancies. Methods: First, we systematically identified and extracted data on outcome measures used in trials within a Cochrane overview of arm rehabilitation interventions. Second, we conducted 16 focus groups with stroke survivors, carers and clinicians using nominal group technique, supplemented with eight semi-structured interviews, to identify these stakeholders’ most important outcomes following post-stroke arm impairment. Finally, we described the constructs of each outcome measure and indicated where stakeholders’ important outcomes were captured by each measure. Results: We extracted 144 outcome measures from 243 post-stroke arm rehabilitation trials. The Fugl-Meyer Assessment Upper Extremity section (used in 79/243 trials; 33%), Action Research Arm Test (56/243; 23%), and modified Ashworth Scale (53/243; 22%) were most frequently used. Stroke survivors (n = 43), carers (n = 10) and clinicians (n = 58) identified 66 unique, important outcomes related to arm impairment following stroke. Between one and three outcomes considered important by the stakeholders were captured by the three most commonly used assessments in research. Conclusion: Post-stroke arm rehabilitation research would benefit from a reduction in the number of outcome measures currently used, and better alignment between what is measured and what is important to stroke survivors, carers and clinicians

Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships?

Background: Stroke and aphasia can negatively affect a person’s ability to maintain healthy social relationships, both within the family and also with friends and the wider network. To date, this has been explored predominantly through qualitative interviews and questionnaires. Blogs written by people with aphasia constitute a novel source of data, comprised of people’s own voices on issues that are of concern to them. Aims: To explore the impact of stroke and aphasia on a person’s relationships with family, friends and the wider network through analysing blogs written by people with aphasia. Methods & Procedures: Blog search engines were used to identify blogs sustained by a sole author who had aphasia following a stroke, and which reflected on their social network. The data were analysed qualitatively using framework analysis. Outcomes & Results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 and 69 years old, lived in the community, were at least 1 year post stroke and included six women and four men. Aphasia was a consistent thread running through the blogs affecting conversations with all parts of a person’s network and impacting on participants’ sense of self. They found it more difficult to take part in family activities and described higher degrees of dependence and changed family dynamics. Contact with friends was reduced, partly due to communication and physical difficulties. While some participants became motivated to become members of groups post stroke, contact with the wider network sometimes diminished, in part because of loss of work and community activities. An additional factor impacting on social relationships was other people’s positive or negative reaction towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also from the wider community. Conclusions: This study found that social relationships played a crucial role in people’s lives following a stroke and aphasia. Nonetheless, family relationships, friendships and social exchanges within the wider social network were all substantially affected. Exploring this area through online narratives offered a rich and highly authentic source of data. The findings suggest that clinicians should incorporate social approaches in rehabilitation and consider ways to foster the maintenance of social networks. The use of social media by people with aphasia should be further explored, both as a therapeutic outlet and also as a way for people with aphasia to feel connected to a wider community

One size does not fit all - stroke survivor's views on group self-management interventions

INTRODUCTION: Stroke is the main cause of complex disability in the UK. Many stroke survivors feel abandoned when rehabilitation ends and more than half are left with long-term unmet needs. There is now emerging interest in whether group self-management programs (SMP) specifically for stroke survivors could help. However, more work is required to understand the acceptability of group SMPs to stroke survivors and the factors of concern that could impact efficacy. PURPOSE: The purpose of this study is to explore stroke survivor's views on (1) possible benefits of a group SMP, (2) possible challenges of a group SMP, and (3) when/where to implement a SMP in an individual's stroke journey. METHOD: Fourteen stroke survivors took part in semi-structured interviews, which were analyzed using an inductive thematic approach. RESULTS: Three main themes were identified in the data: (1) a space to share support, (2) it is not a one size fits all problem, and (3) how is it all going to happen? CONCLUSION: A varied group of stroke survivors can provide valuable insight and ideas about how group SMP's should be constructed. To the best of our knowledge, this is the first patient engagement study that explores group SMPs for stroke. In future work, researchers may find it helpful to consider the findings from this study to inform the design of group SMPs. Implications for Rehabilitation There is interest in whether unmet needs after stroke could be addressed through a group self-management program (SMP). Stroke survivors can provide valuable insight and ideas about how group SMPs should be constructed. Group SMPs should carefully consider: how to create a safe space in which stroke survivors feel comfortable, the impact of the facilitators, tailoring the group to the individual, the presence of carers, and the emotional impact of a group SMP

A randomised controlled trial to compare the clinical and cost-effectiveness of prism glasses, visual search training and standard care in patients with hemianopia following stroke: a protocol

INTRODUCTION: Homonymous hemianopia is a common and disabling visual problem after stroke. Currently, prism glasses and visual scanning training are proposed to improve it. The aim of this trial is to determine the effectiveness of these interventions compared to standard care. METHODS AND ANALYSIS: The trial will be a multicentre three arm individually randomised controlled trial with independent assessment at 6 week, 12 week and 26 week post-randomisation. Recruitment will occur in hospital, outpatient and primary care settings in UK hospital trusts. A total of 105 patients with homonymous hemianopia and without ocular motility impairment, visual inattention or pre-existent visual field impairment will be randomised to one of three balanced groups. Randomisation lists will be stratified by site and hemianopia level (partial or complete) and created using simple block randomisation by an independent statistician. Allocations will be disclosed to patients by the treating clinician, maintaining blinding for outcome assessment. The primary outcome will be change in visual field assessment from baseline to 26 weeks. Secondary measures will include the Rivermead Mobility Index, Visual Function Questionnaire 25/10, Nottingham Extended Activities of Daily Living, Euro Qual-5D and Short Form-12 questionnaires. Analysis will be by intention to treat. ETHICS AND DISSEMINATION: This study has been developed and supported by the UK Stroke Research Network Clinical Studies Group working with service users. Multicentre ethical approval was obtained through the North West 6 Research ethics committee (Reference 10/H1003/119). The trial is funded by the UK Stroke Association. Trial Registration: Current Controlled Trials ISRCTN05956042. Dissemination will consider usual scholarly options of conference presentation and journal publication in addition to patient and public dissemination with lay summaries and articles. TRIAL REGISTRATION: Current Controlled Trials ISRCTN05956042

Practical and methodological challenges in the design and implementation of a cluster-randomised feasibility trial of the management of urinary incontinence after stroke

To evaluate design and implementation issues in an NIHR-funded feasibility trial of the management of urinary incontinence after stroke in a secondary care setting.Twelve stroke services were cluster-randomised to 3 intervention groups (systematic voiding programme with/without supported implementation; usual care) in 4 strata based on: having separate/combined acute and rehabilitation units; above/below median performance on the ‘nine key indicators of stroke care’ in the National Sentinel Stroke Audit (NSSA) [1]; number of annual stroke admissions. Target recruitment was 780 patients overall; the recruitment period was 9 or 12 months, depending on a Trust’s annual stroke admissions, to reduce variability in numbers across services. Each service gained an additional 2.8 whole time equivalent health care assistants (HCAs) supporting introduction of the intervention or maintaining parity of staffing in ‘usual care’ services