Future bathroom: A study of user-centred design principles affecting usability, safety and satisfaction in bathrooms for people living with disabilities

Research and development work relating to assistive technology 2010-11 (Department of Health) Presented to Parliament pursuant to Section 22 of the Chronically Sick and Disabled Persons Act 197

Speech and language therapy for aphasia following stroke

Background  Aphasia is an acquired language impairment following brain damage that affects some or all language modalities: expression and understanding of speech, reading, and writing. Approximately one third of people who have a stroke experience aphasia.  Objectives  To assess the effects of speech and language therapy (SLT) for aphasia following stroke.  Search methods  We searched the Cochrane Stroke Group Trials Register (last searched 9 September 2015), CENTRAL (2015, Issue 5) and other Cochrane Library Databases (CDSR, DARE, HTA, to 22 September 2015), MEDLINE (1946 to September 2015), EMBASE (1980 to September 2015), CINAHL (1982 to September 2015), AMED (1985 to September 2015), LLBA (1973 to September 2015), and SpeechBITE (2008 to September 2015). We also searched major trials registers for ongoing trials including ClinicalTrials.gov (to 21 September 2015), the Stroke Trials Registry (to 21 September 2015), Current Controlled Trials (to 22 September 2015), and WHO ICTRP (to 22 September 2015). In an effort to identify further published, unpublished, and ongoing trials we also handsearched theInternational Journal of Language and Communication Disorders(1969 to 2005) and reference lists of relevant articles, and we contacted academic institutions and other researchers. There were no language restrictions.  Selection criteria  Randomised controlled trials (RCTs) comparing SLT (a formal intervention that aims to improve language and communication abilities, activity and participation) versus no SLT; social support or stimulation (an intervention that provides social support and communication stimulation but does not include targeted therapeutic interventions); or another SLT intervention (differing in duration, intensity, frequency, intervention methodology or theoretical approach).  Data collection and analysis  We independently extracted the data and assessed the quality of included trials. We sought missing data from investigators.  Main results  We included 57 RCTs (74 randomised comparisons) involving 3002 participants in this review (some appearing in more than one comparison). Twenty-seven randomised comparisons (1620 participants) assessed SLT versus no SLT; SLT resulted in clinically and statistically significant benefits to patients' functional communication (standardised mean difference (SMD) 0.28, 95% confidence interval (CI) 0.06 to 0.49, P = 0.01), reading, writing, and expressive language, but (based on smaller numbers) benefits were not evident at follow-up. Nine randomised comparisons (447 participants) assessed SLT with social support and stimulation; meta-analyses found no evidence of a difference in functional communication, but more participants withdrew from social support interventions than SLT. Thirty-eight randomised comparisons (1242 participants) assessed two approaches to SLT. Functional communication was significantly better in people with aphasia that received therapy at a high intensity, high dose, or over a long duration compared to those that received therapy at a lower intensity, lower dose, or over a shorter period of time. The benefits of a high intensity or a high dose of SLT were confounded by a significantly higher dropout rate in these intervention groups. Generally, trials randomised small numbers of participants across a range of characteristics (age, time since stroke, and severity profiles), interventions, and outcomes.  Authors' conclusions  Our review provides evidence of the effectiveness of SLT for people with aphasia following stroke in terms of improved functional communication, reading, writing, and expressive language compared with no therapy. There is some indication that therapy at high intensity, high dose or over a longer period may be beneficial. HIgh-intensity and high dose interventions may not be acceptable to all

Social support in people with chronic aphasia

Background & Aims : Stroke and aphasia can have a profound impact on people's social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation

Health-related quality of life in people with severe aphasia

Background: Health-related quality of life (HRQL) measures are increasingly used to help us understand the impact of disease or disability on a person's life and to measure the effectiveness of interventions. A small number of studies have looked at perceived HRQL in people with mild or moderate aphasia. They report that reduced HRQL is associated with low psychological well-being and depression, reduced activity levels and high levels of communication disability. Still, very little is known about the quality of life of people with severe aphasia. Aims: This study aimed to evaluate the HRQL of people with severe aphasia as rated by their proxy respondents. To increase our understanding of these proxy evaluations, the findings were compared with those of two other studies of HRQL in people with moderate or mild aphasia, using proxy and self-report respondents. Methods & Procedures: A questionnaire-based cross-sectional survey was carried out where proxies of people with severe aphasia reported on their HRQL. The people with severe aphasia who took part in this study were part of a larger cohort of people with aphasia who were able to self-report on their HRQL. Aphasia was assessed with the American Speech and Hearing Association Functional Assessment of Communication Skills for Adults (ASHA-FACS) and the Frenchay Aphasia Screening Test (FAST) and HRQL with the Stroke and Aphasia Quality of Life (SAQOL) scale (proxy-reported). SAQOL-39 scores were derived from the SAQOL. Results & Results: People with severe aphasia's quality of life, as measured by their proxies (n = 12), was low and more than one standard deviation below that of the standardization sample of the SAQOL. The overall mean score for the SAQOL-39 and the means for its physical and communication domains were below the 20th centile. They were also significantly lower that those of the comparison studies of self-reports (n = 83) and proxy ratings (n = 50) of people with mild or moderate aphasia (p0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia. Conclusions & Implications: This small study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is severely compromised. Further research, using a wide range of methodologies, is needed in order to address the challenge of understanding better the quality of life of people with severe aphasia

Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

Telepractice in the Communication Treatment of Individuals with Post-stroke Aphasia: Systematic Review

Telepractice, a branch of telehealth, which is the delivery of services to distant sites employing telecommunication, has been developing rapidly nowadays. Owing to the nature of the condition and treatment foci in aphasia, telepractice has been identified as a potential mode for intervention to persons with aphasia (PWA) in the field of speech-language pathology. Based on the American Speech-Language Hearing Association (2005), telepractice is considered a means to extend services to a wider context overcoming the barriers of transportation, costs, and limited availability of services. Thus, exploration of treatment accessibility to underserved populations in middle/low-income countries or rural areas via telepractice is warranted. The primary objectives of this study are to systematically review literature on telepractice of speech-language pathology services for PWA, with a focus to synthesize and analyze data that will be useful to low-income countries to consider telepractice as an alternate option and also to contribute to broaden the evidence base of aphasia practices via telepractice and include the newest available evidence. A systematic review was conducted in this study following the guidelines of Cochrane Handbook (Higgins et al., 2020). The study utilized a systematic search based on PRISMA guidelines and included 11 articles following a thorough screen for eligibility. A pre-designed coding manual was utilized in order to extract relevant data. All the included studies evaluated the feasibility of telepractice in intervention and to investigate the effectiveness of treatment programs conducted via teletherapy. A majority of the participants (72%) included in the review are PWA secondary to strokes. The treatment areas studies targeted are word retrieval, language skills, communication skills and language and communication skills, with communication skills being the area covered in highest number of studies. The review found that telepractice in the targeted treatment programs is feasible and effective. However, the included articles lack strong methodological designs limiting the certainty of the evidence. Participant-perceived data indicated some advantages of telepractice, such as overcoming transport/cost barriers, receival of higher intensity of treatment, and facilitations for non-verbal strategies to improve language and communication skills. In addition, the results revealed that all but one of the included studies was completed in a high-income country. Most of the findings also lack adequate details on therapy receival and delivery setting dynamics from a standpoint of replicating the studies or in order to generalize the findings. In conclusion, the current review shows limited evidence guidelines for the use of telepractice in rural and middle/low-income countries. There is a need to explore simple affordable technology options in telepractice and evaluate their effectiveness in low/middle-income contexts. Empirical data on efficacy of telepractice for PWA drawn from strong methodological designs should also be considered to encourage evidence-based clinical practice using telepractice in those contexts

Computerised speech and language therapy or attention control added to usual care for people with long-term post-stroke aphasia : the Big CACTUS three-arm RCT

Background: People with aphasia may improve their communication with speech and language therapy many months/years after stroke. However, NHS speech and language therapy reduces in availability over time post stroke. Objective: This trial evaluated the clinical effectiveness and cost-effectiveness of self-managed computerised speech and language therapy to provide additional therapy. Design: A pragmatic, superiority, single-blind, parallel-group, individually randomised (stratified block randomisation, stratified by word-finding severity and site) adjunct trial. Setting: Twenty-one UK NHS speech and language therapy departments. Participants: People with post-stroke aphasia (diagnosed by a speech and language therapist) with long-standing (> 4 months) word-finding difficulties. Interventions: The groups were (1) usual care; (2) daily self-managed computerised word-finding therapy tailored by speech and language therapists and supported by volunteers/speech and language therapy assistants for 6 months plus usual care (computerised speech and language therapy); and (3) activity/attention control (completion of puzzles and receipt of telephone calls from a researcher for 6 months) plus usual care. Main outcome measures: Co-primary outcomes – change in ability to find treated words of personal relevance in a bespoke naming test (impairment) and change in functional communication in conversation rated on the activity scale of the Therapy Outcome Measures (activity) 6 months after randomisation. A key secondary outcome was participant-rated perception of communication and quality of life using the Communication Outcomes After Stroke questionnaire at 6 months. Outcomes were assessed by speech and language therapists using standardised procedures. Cost-effectiveness was estimated using treatment costs and an accessible EuroQol-5 Dimensions, five-level version, measuring quality-adjusted life-years. Results: A total of 818 patients were assessed for eligibility and 278 participants were randomised between October 2014 and August 2016. A total of 240 participants (86 usual care, 83 computerised speech and language therapy, 71 attention control) contributed to modified intention-to-treat analysis at 6 months. The mean improvements in word-finding were 1.1% (standard deviation 11.2%) for usual care, 16.4% (standard deviation 15.3%) for computerised speech and language therapy and 2.4% (standard deviation 8.8%) for attention control. Computerised speech and language therapy improved word-finding 16.2% more than usual care did (95% confidence interval 12.7% to 19.6%; p < 0.0001) and 14.4% more than attention control did (95% confidence interval 10.8% to 18.1%). Most of this effect was maintained at 12 months (n = 219); the mean differences in change in word-finding score were 12.7% (95% confidence interval 8.7% to 16.7%) higher in the computerised speech and language therapy group (n = 74) than in the usual-care group (n = 84) and 9.3% (95% confidence interval 4.8% to 13.7%) higher in the computerised speech and language therapy group than in the attention control group (n = 61). Computerised speech and language therapy did not show significant improvements on the Therapy Outcome Measures or Communication Outcomes After Stroke scale compared with usual care or attention control. Primary cost-effectiveness analysis estimated an incremental cost per participant of £732.73 (95% credible interval £674.23 to £798.05). The incremental quality-adjusted life-year gain was 0.017 for computerised speech and language therapy compared with usual care, but its direction was uncertain (95% credible interval –0.05 to 0.10), resulting in an incremental cost-effectiveness ratio of £42,686 per quality-adjusted life-year gained. For mild and moderate word-finding difficulty subgroups, incremental cost-effectiveness ratios were £22,371 and £28,898 per quality-adjusted life-year gained, respectively, for computerised speech and language therapy compared with usual care. Limitations: This trial excluded non-English-language speakers, the accessible EuroQol-5 Dimensions, five-level version, was not validated and the measurement of attention control fidelity was limited. Conclusions: Computerised speech and language therapy enabled additional self-managed speech and language therapy, contributing to significant improvement in finding personally relevant words (as specifically targeted by computerised speech and language therapy) long term post stroke. Gains did not lead to improvements in conversation or quality of life. Cost-effectiveness is uncertain owing to uncertainty around the quality-adjusted life-year gain, but computerised speech and language therapy may be more cost-effective for participants with mild and moderate word-finding difficulties. Exploring ways of helping people with aphasia to use new words in functional communication contexts is a priority. Trial registration: Current Controlled Trials ISRCTN68798818

Anticipated Response of African Americans to Stroke Symptoms

This study explored what African Americans aged 55 and older believed they would do in response to stroke symptoms. The study focused on individual factors related to stroke risk, extending beyond concerns in the African American community of limited health care access and genetic predisposition to stroke. The study examined whether an individual’s illness representation of stroke, stroke risk factor knowledge, time perspective, or spirituality influenced that person’s anticipated response to stroke symptoms. Specific aims include a) enhancing present understanding of how African Americans respond to stroke, b) distinguishing the biological, societal, and behavioral factors related to stroke in the African American community, and c) providing insight and data to serve as a foundation for targeted stroke prevention interventions in the African American community. A qualitative dominant mixed methods approach was used to collect data from African Americans, either after a diagnosed stroke (n=6) or without a stroke history (n=14). Face-to-face interviews with participants explored their knowledge about strokes. Participants also completed questionnaires regarding factual knowledge, as well as illness representation, spirituality, and time perspective. Participants in the study were found to be highly spiritual. Participants in both groups were found to be future oriented. Participants each had understanding of stroke as emergency and could recall symptoms of acute stroke. Participants routinely stated they would “call 9-1-1” if they thought they were having a stroke. When asked about their anticipated response to specific stroke symptoms, the participants reported they would call emergency medical services approximately 40% of the time. There continues to be a gap between stroke knowledge and action in the African American population. Stroke is regarded as emergency, yet specific symptoms of stroke may not always be viewed as warranting immediate attention. These results support a continued need for stroke education in this community. Stroke education should consider an individual’s culture and how culture may influence an individual’s health behavior. This education should also emphasize how seemingly benign symptoms may be indicative of a more serious condition. Approaching health education by integrating an individual’s spiritual preferences, time orientation, and illness representation may help build more effective individualized health education and promote an improved adherence to health recommendations

The Effects of Social Media on the Quality of Life of People With Aphasia

This thesis reviews the literature regarding the effects of social media on the quality of life of people with aphasia. The review focuses on communication deficits, social isolation, quality of life, types of social media, aphasia technology and aphasia. The literature suggests that communication deficits in aphasia lead to feelings of social isolation, which then lead to a lower quality of life. However, less is known about the impact of social media on people with aphasia. Findings from this literature review suggest that technology may improve social connectedness, thereby decreasing social isolation and improving the overall quality of life of people with aphasia