Can a writing intervention using mainstream Assistive Technology software compensate for dysgraphia and support reading comprehension for people with aphasia?

BACKGROUND: Stroke profoundly affects quality of life (QOL), including loss of employment, reduced social activity, shrinking social networks and low mood. Dysgraphia (impaired writing) is a common symptom of aphasia yet is rarely targeted in rehabilitation. Recent technological advances might challenge this, since much communication is now conducted digitally through writing. The rehabilitation of writing may therefore help to address the wider consequences of stroke and aphasia. AIMS: Can assistive technology (AT) training for people with dysgraphia: (1) improve written output, and are gains achieved only with AT? (2) improve reading comprehension scores, and are gains achieved only with AT? and (3) affect social participation, mood or QOL METHODS AND PROCEDURES: DESIGN: A mixed-methods, repeated measures, small group study design was adopted (qualitative outcomes will be reported elsewhere). PARTICIPANTS: Recruited from community settings, for example, Stroke Association communication support groups. INCLUSION CRITERIA: over 18 years old, aphasia due to stroke, acquired dysgraphia, writing more impaired than speech, fluent English prior to stroke, access to computer and Internet. EXCLUSION CRITERIA: currently receiving speech and language therapy, significant cognitive impairment, neuromuscular/motor-speech impairments/structural abnormalities, developmental dyslexia, uncorrected visual/auditory impairments. PROCEDURES: Screening and diagnostic assessments at time T1 (first baseline). Outcome measures at T1; repeated at T2 (second baseline), T3 (end of intervention), T4 (3-month follow up). Social participation assessment and cognitive monitoring at T2, T3, T4. INTERVENTION: Seven-ten hours individual therapy weekly and additional email support. Participants were trained to operate Dragon NaturallySpeaking (speech to text package) and ClaroRead (read writing aloud). Outcome measures were administered on pen and paper (control) and on computer, with AT enabled only at T3, T4. OUTCOMES AND RESULTS: Computer narrative writing was significantly improved by AT training (Friedman's χ2 (3) = 8.27, p = 0.041), indicating a compensatory effect of AT. Though reading comprehension significantly improved in the computer condition (Friedman's χ2 (3) = 21.07, p = 0.001), gains could not be attributed to the AT. Gains were achieved only when measures were administered on the keyboard, with AT enabled. Thus, a compensatory rather than remediatory effect was suggested. Social network size significantly increased; there were no significant changes in mood/QOL. Individual success rates varied. CONCLUSION AND IMPLICATIONS: The customisable AT training was acceptable to participants and resulted in significantly improved narrative writing. Compensatory AT interventions are a useful adjunct to remediatory writing interventions and may particularly support functional writing. WHAT THIS PAPER ADDS: What is already known on this subject Writing is rarely spared in aphasia and may present as the most impaired communication modality. Yet, people with aphasia report that writing is seldom included in their rehabilitation. Many communication activities are now conducted digitally through writing, therefore rehabilitation of this is more important than ever before. This study sought to address whether an assistive technology (AT) software package can improve writing and whether any changes were compensatory or remediatory. What this study adds to existing knowledge This group study found that AT training led to gains in written discourse and social network in people with aphasia and dysgraphia. Gains were not replicated in handwritten tasks, suggesting this was a compensatory therapeutic approach. What are the clinical implications of this work? AT programs such as this may present speech and language therapists with a practical, pragmatic adjunct to writing or typing therapy, particularly for clients with chronic, intractable impairments for whom remediatory therapy may have a low chance of success.

Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years.

BACKGROUND: The assessment of language and cognition in children at risk of impaired neurodevelopment following neonatal care is a UK standard of care but there is no national, systematic approach for obtaining these data. To overcome these challenges, we developed and evaluated a digital version of a validated parent questionnaire to assess cognitive and language development at age 2 years, the Parent Report of Children's Abilities-Revised (PARCA-R). METHODS: We involved clinicians and parents of babies born very preterm who received care in north-west London neonatal units. We developed a digital version of the PARCA-R questionnaire using standard software. Following informed consent, parents received automated notifications and an invitation to complete the questionnaire on a mobile phone, tablet or computer when their child approached the appropriate age window. Parents could save and print a copy of the results. We evaluated ease of use, parent acceptability, consent for data sharing through integration into a research database and making results available to the clinical team. RESULTS: Clinical staff approached the parents of 41 infants; 38 completed the e-registration form and 30 signed the e-consent. The digital version of the PARCA-R was completed by the parents of 21 of 23 children who reached the appropriate age window. Clinicians and parents found the system easy to use. Only one parent declined permission to integrate data into the National Neonatal Research Database for approved secondary purposes. DISCUSSION: This electronic data collection system and associated automated processes enabled efficient systematic capture of data on language and cognitive development in high-risk children, suitable for national delivery at scale.

A pressing need for research to reduce nutritional uncertainties in preterm infant care: Findings from a European roundtable discussion with parent representatives.

INTRODUCTION: Other than for agreement that own mother's milk is the optimum feed, nutritional practice for very preterm babies varies widely. As part of the development of a randomised controlled trial to address preterm nutrition uncertainties, and with the help of the European Foundation for the Care of Newborn Infants (EFCNI), we sought the views of parents across Europe. METHODS: We held two roundtable discussions about the proposed trial, inviting the participation of parents and preterm adults through EFCNI. We sought their views and prior knowledge of preterm nutrition uncertainties, treatment comparisons and opinions on specific aspects of design such as cluster versus individual randomisation. We used thematic Framework Analysis to explore the data. RESULTS: There were 11 participants (two men and nine women) from six European countries. Nine were parents and two were preterm adults. Participants strongly supported the need for research to improve care. However, we found little knowledge of methods to resolve uncertainties in care, and wide variation in information provided to parents during their baby's neonatal unit stay. No parent recalled a member of the clinical staff having told them about nutrition uncertainties. CONCLUSIONS: Present-day best practice is to involve parents, patients, and the public in all stages of clinical research from design to dissemination and implementation. To strengthen involvement and participation we suggest there is need to improve knowledge of research methods. Clinicians may find it helpful to receive training on how to explain clinical uncertainties, and methods to resolve these.

Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset.

OBJECTIVES: We involved public and professional stakeholders to assess a novel data interrogation tool, the Neonatal Health Intelligence Tool, for a National Data Asset, the National Neonatal Research Database. METHODS: We recruited parents, preterm adults, data managers, clinicians, network managers and researchers (trialists and epidemiologists) for consultations demonstrating a prototype tool and semi-structured discussion. A thematic analysis of consultations is reported by stakeholder group. RESULTS: We held nine on-line consultations (March-December 2021), with 24 stakeholders: parents (n=8), preterm adults (n=2), data managers (n=3), clinicians (n=3), network managers (n=2), triallists (n=3) and epidemiologists (n=3). We identified four themes from parents/preterm adults: struggling to consume information, Dads and data, bring data to life and yearning for predictions; five themes from data managers/clinicians/network managers: benchmarking, clinical outcomes, transfers and activity, the impact of socioeconomic background and ethnicity, and timeliness of updates and widening availability; and one theme from researchers: interrogating the data. DISCUSSION: Other patient and public involvement (PPI) studies have reported that data tools generate concerns; our stakeholders had none. They were unanimously supportive and enthusiastic, citing visualisation as the tool's greatest strength. Stakeholders had no criticisms; instead, they recognised the tool's potential and wanted more features. Parents saw the tool as an opportunity to inform themselves without burdening clinicians, while clinicians welcomed an aid to explaining potential outcomes to parents. CONCLUSION: All stakeholder groups recognised the need for the tool, praising its content and format. PPI consultations with all key groups, and their synthesis, illustrated desire for additional uses from it.

More than words: Parent, Patient and Public Involvement perspectives on language used by clinical researchers in neonatal care.

In this qualitative study exploring parent views of information about research studies, we found they accepted uncertainty as justification, and that three key aspects of language - words, tone, and pace - influence parents' decision about their baby's inclusion. We recommend parents are routinely involved in developing information materials.

SUpporting wellbeing through PEeR-Befriending (SUPERB) feasibility trial: fidelity of peer-befriending for people with aphasia.

OBJECTIVE: To evaluate systematically the fidelity of a peer-befriending intervention for people with aphasia. DESIGN: SUpporting wellbeing through Peer-befriending (SUPERB) was a feasibility randomised controlled trial comparing usual care to usual care +peer-befriending. This paper reports on the fidelity of all intervention aspects (training and supervision of providers/befrienders; intervention visits) which was evaluated across all areas of the Behaviour Change Consortium framework. SETTING: Community. PARTICIPANTS: People with aphasia early poststroke and low levels of distress, randomised to the intervention arm of the trial (n=28); 10 peer-befrienders at least 1-year poststroke. INTERVENTION: Peer-befrienders were trained (4-6 hours); and received regular supervision (monthly group while actively befriending, and one-to-one as and when needed) in order to provide six 1-hour peer-befriending visits over 3 months. MAIN MEASURES: Metrics included number and length of training, supervision sessions and visits. All training and supervision sessions and one (of six) visits per pair were rated against fidelity checklists and evaluated for inter-rater and intrarater reliability (Gwets AC1 agreement coefficient). Per-cent adherence to protocol was evaluated. RESULTS: All peer-befrienders received 4-6 hours training over 2-3 days as intended. There were 25 group supervision sessions with a median number attended of 14 (IQR=8-18). Twenty-six participants agreed (92.8%) to the intervention and 21 (80.8%) received all six visits (median visit length 60 min). Adherence was high for training (91.7%-100%) and supervision (83%-100%) and moderate-to-high for befriending visits (66.7%-100%). Where calculable, inter-rater and intrarater reliability was high for training and supervision (Gwets AC1 >0.90) and moderate-to-high for intervention visits (Gwets AC1 0.44-1.0). CONCLUSION: Planning of fidelity processes at the outset of the trial and monitoring throughout was feasible and ensured good-to-high fidelity for this peer-befriending intervention. The results permit confidence in other findings from the SUPERB trial. TRIAL REGISTRATION NUMBER: NCT02947776.

Incorporating parent, former patient and clinician perspectives in the design of a national UK double-cluster, randomised controlled trial addressing uncertainties in preterm nutrition.

Background: Comparative effectiveness randomised controlled trials are powerful tools to resolve uncertainties in existing treatments and care processes. We sought parent and patient perspectives on the design of a planned national, double-cluster randomised controlled trial (COLLABORATE) to resolve two longstanding uncertainties in preterm nutrition. Methods: We used qualitative focus groups and interviews with parents, former patients and clinicians. We followed the Consolidated Criteria for Reporting Qualitative Research checklist and conducted framework analysis, a specific methodology within thematic analysis. Results: We identified support for the trial's methodology and vision, and elicited themes illustrating parents' emotional needs in relation to clinical research. These were: relieving the pressure on mothers to breastfeed; opt-out consent as reducing parent stress; the desire for research to be a partnership between clinicians, parents and researchers; the value of presenting trial information in a collaborative tone; and in a format that allows assimilation by parents at their own pace. We identified anxiety and cognitive dissonance among some clinicians in which they recognised the uncertainties that justify the trial but felt unable to participate because of their strongly held views. Conclusions: The early involvement of parents and former patients identified the centrality of parents' emotional needs in the design of comparative effectiveness research. These insights have been incorporated into trial enrolment processes and information provided to participants. Specific outputs were a two-sided leaflet providing very brief as well as more detailed information, and use of language that parents perceive as inclusive and participatory. Further work is warranted to support clinicians to address personal biases that inhibit trial participation.

'Emotion is of the essence. Number one priority': A nested qualitative study exploring psychosocial adjustment to stroke and aphasia.

BACKGROUND: Stroke and aphasia can have a profound impact on people's lives, and depression is a common, frequently persistent consequence. Social networks also suffer, with poor social support associated with worse recovery. It is essential to support psychosocial well-being post-stroke, and examine which factors facilitate successful adjustment to living with aphasia. AIMS: In the context of a feasibility randomized controlled trial of peer-befriending (SUPERB), this qualitative study explores adjustment for people with aphasia in the post-acute phase of recovery, a phase often neglected in previous research. METHODS & PROCEDURES: Semi-structured interviews were conducted with 20 people with aphasia and 10 significant others, who were purposively sampled from the wider group of 56 people with aphasia and 48 significant others. Interviews took place in participants' homes; they were analysed using framework analysis. OUTCOMES & RESULTS: Participants with aphasia were 10 women and 10 men; their median (interquartile range-IQR) age was 70 (57.5-77.0) years. Twelve participants had mild aphasia, eight moderate-severe aphasia. Significant others were six women and four men with a median (IQR) age of 70.5 (43-79) years. They identified a range of factors that influenced adjustment to aphasia post-stroke. Some were personal resources, including mood and emotions; identity/sense of self; attitude and outlook; faith and spirituality; and moving forward. Significant others also talked about the impact of becoming carers. Other factors were external sources of support, including familial and other relationships; doctors, nurses and hospital communication; life on the ward; therapies and therapists; psychological support, stroke groups; and community and socializing. CONCLUSIONS & IMPLICATIONS: To promote adjustment in the acute phase, hospital staff should prioritize the humanizing aspects of care provision. In the post-acute phase, clinicians play an integral role in supporting adjustment and can help by focusing on relationship-centred care, monitoring mental health, promoting quality improvement across the continuum of care and supporting advocacy. What this paper adds What is already known on the subject Anxiety and depression are common consequences of stroke, with depression rates high at 33% at 1 year post-onset. There is evidence that the psychological needs of people with aphasia are even greater than those of the general stroke population. Social support and social networks are also negatively impacted. Few studies have examined adjustment when people are still in hospital or in the early stages of post-stroke life in the community (< 6 months). Further, many stroke studies exclude people with aphasia. What this paper adds to existing knowledge Adjustment to living with stroke and aphasia begins in the early stages of recovery. While this partly depends on personal resources, many factors depend on external sources of help and support. These include doctors, nurses and hospital communication, their experience of life on the ward, and their therapists' person-centred care. What are the potential or actual clinical implications of this work? Clinicians play an integral role in facilitating people with aphasia to utilize their personal resources and support systems to adjust to life after stroke. They can help by focusing on relationship-centred care, monitoring mental health, promoting quality improvement across the continuum of care and supporting advocacy.

Supporting wellbeing through peer-befriending (SUPERB) for people with aphasia: A feasibility randomised controlled trial.

OBJECTIVE: To determine the feasibility and acceptability of peer-befriending, for people with aphasia. DESIGN: Single-blind, parallel-group feasibility randomised controlled trial comparing usual care to usual care + peer-befriending. PARTICIPANTS AND SETTING: People with aphasia post-stroke and low levels of distress, recruited from 5 NHS Hospitals and linked community services; their significant others; and 10 befrienders recruited from community. INTERVENTION: Six 1-hour peer-befriending visits over three months. MAIN MEASURES: Feasibility parameters included proportion eligible of those screened; proportion consented; missing data; consent and attrition rates. Acceptability was explored through qualitative interviews. Outcomes for participants and significant others were measured at baseline, 4- and 10-months; for peer-befrienders before training and after one/two cycles of befriending. RESULTS: Of 738 patients identified, 75 were eligible of 89 fully screened (84%), 62 consented (83% of eligible) and 56 randomised. Attrition was 16%. Adherence was high (93% attended ⩾2 sessions, 81% all six). The difference at 10 months on the GHQ-12 was 1.23 points on average lower/better in the intervention arm (95% CI 0.17, -2.63). There was an 88% decrease in the odds of GHQ-12 caseness (95% CI 0.01, 1.01). Fourty-eight significant others and 10 peer-befrienders took part. Procedures and outcome measures were acceptable. Serious adverse events were few (n = 10, none for significant others and peer-befrienders) and unrelated. CONCLUSIONS: SUPERB peer-befriending for people with aphasia post-stroke experiencing low levels of distress was feasible. There was preliminary evidence of benefit in terms of depression. Peer-befriending is a suitable intervention to explore further in a definitive trial.Clinical trial registration-URL: http://www.clinicaltrials.gov Unique identifier: NCT02947776Subject terms: Translational research, mental health, rehabilitation, quality and outcomes, stroke.

Description and Effectiveness of Communication Partner Training in TBI: A Systematic Review.

OBJECTIVES: To evaluate the current evidence on communication partner training and its effectiveness on outcomes for people with traumatic brain injury (TBI) and/or their communication partners. METHODS: Information sources: Systematic searches of 9 databases (AMED, CINAHL, EMBASE, Medline/EBSCOHOST, PsycINFO, PsycBITE, PsycARTICLES, PubMed, and Scopus) from database inception to February 2019. Eligibility criteria: Empirical studies on interventions for adult communication partners where the primary focus of the program (>50%) was on improving communication skills of people with TBI and/or communication partners. Data: Participants, characteristics of the training, outcome measures, and findings. Risk of bias: Standard checklists were used for methodological quality (PEDro, ROBiN-T) and intervention description (TIDieR). Synthesis: Narrative synthesis and effect sizes (Cohen's d) for group-level studies. OUTCOMES: Ten articles (describing 8 studies) met eligibility criteria: 3 randomized controlled trials, 2 nonrandomized controlled trials, and 3 single-case experimental designs. Studies included a total of 258 people with TBI and 328 communication partners; however, all but one study had fewer than 65 participants. Methodological quality varied and intervention description was poor. Three studies in the final synthesis (n = 41 communication partners, n = 36 people with TBI) reported positive intervention effects. Effect sizes in group studies were d = 0.80 to 1.13 for TBI and d = 1.16 to 2.09 for communication partners. CONCLUSIONS: The articles provided encouraging, though limited, evidence for training communication partners. Greater methodological rigor, more clearly described interventions, and consistent use of outcome measures and follow-up after treatment are needed. Further research on this topic is warranted.

Adjustment with aphasia after stroke: study protocol for a pilot feasibility randomised controlled trial for SUpporting wellbeing through PEeR Befriending (SUPERB).

BACKGROUND: Despite the high prevalence of mood problems after stroke, evidence on effective interventions particularly for those with aphasia is limited. There is a pressing need to systematically evaluate interventions aiming to improve wellbeing for people with stroke and aphasia. This study aims to evaluate the feasibility of a peer-befriending intervention. METHODS/DESIGN: SUPERB is a single blind, parallel group feasibility trial of peer befriending for people with aphasia post-stroke and low levels of psychological distress. The trial includes a nested qualitative study and pilot economic evaluation and it compares usual care (n = 30) with usual care + peer befriending (n = 30). Feasibility outcomes include proportion screened who meet criteria, proportion who consent, rate of consent, number of missing/incomplete data on outcome measures, attrition rate at follow-up, potential value of conducting main trial using value of information analysis (economic evaluation), description of usual care, and treatment fidelity of peer befriending. Assessments and outcome measures (mood, wellbeing, communication, and social participation) for participants and significant others will be administered at baseline, with outcome measures re-administered at 4 and 10 months post-randomisation. Peer befrienders will complete outcome measures before training and after they have completed two cycles of befriending. The qualitative study will use semi-structured interviews of purposively sampled participants (n = 20) and significant others (n = 10) from both arms of the trial, and all peer befrienders to explore the acceptability of procedures and experiences of care. The pilot economic evaluation will utilise the European Quality of life measure (EQ-5D-5 L) and a stroke-adapted version of the Client Service Receipt Inventory (CSRI). DISCUSSION: This study will provide information on feasibility outcomes and an initial indication of whether peer befriending is a suitable intervention to explore further in a definitive phase III randomised controlled trial. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT02947776, registered 28th October 2016.

Supporting people with aphasia to 'settle into a new way to be': speech and language therapists' views on providing psychosocial support.

BACKGROUND: People with aphasia are at risk of becoming depressed and isolated. Online surveys have found that the majority of speech and language therapists (SLTs) lack confidence in addressing the psychological needs of people with aphasia. AIMS: To explore how SLTs conceptualize the scope of their role; barriers and facilitators to SLTs addressing psychosocial needs; and SLTs' experiences of specialist training and support, and working with mental health professionals (MHPs). METHODS & PROCEDURES: Focus groups were conducted in stroke healthcare settings. Purposive sampling was used when selecting sites so as to capture a range of experiences. Results were analysed using framework analysis. OUTCOMES & RESULTS: Twenty-three SLTs took part in six focus groups. Participants' psychosocial work included counselling-type interactions, psycho-education, working with families, facilitating peer support and training other healthcare professionals. There was lack of consensus on the scope of the SLT role. Many expressed a sense of conflict, both perceiving it as valuable to spend time addressing psychological well-being, while simultaneously feeling uneasy if they deviated from 'direct SLT' work. Barriers to addressing psychosocial well-being were: emotionally challenging nature of this work, particularly for those who felt unsupported; caseload and time pressures; attitudes of senior managers and commissioners; difficulties measuring and documenting more 'fluid' psychosocial work; and the complexity of the needs and backgrounds of some patients. Enabling factors were: specialist ongoing support; peer support from colleagues; experience; support of management; and personal belief. Specialist training was valued. It changed how participants viewed the therapist-client relationship (more client led); the assessment and goal-setting process; and gave them more confidence to acknowledge client emotions. However, many felt that there was a need for ongoing specialist advice, and to be able to see approaches modelled for this client group. In terms of MHPs, a subset of stroke-specialist clinical psychologists worked directly with people with marked aphasia and families, as well as supporting the multidisciplinary team to provide holistic care. However, a main theme was that participants perceived many MHPs did not consider people with aphasia as 'appropriate candidates' for psychological input. CONCLUSIONS & IMPLICATIONS: All participants cared about the emotional well-being of their clients; however, they identified a number of barriers to people with aphasia receiving appropriate psychological support. A cultural shift, whereby psychological care for people with aphasia is seen as valuable, feasible and necessary, delivered collaboratively by SLTs, MHPs and the wider team, may improve services.

How do speech-and-language therapists address the psychosocial well-being of people with aphasia? Results of a UK online survey.

BACKGROUND: The psychosocial impact of stroke and aphasia is considerable. AIMS: To explore UK speech-and-language therapists' (SLTs) clinical practice in addressing the psychological and social needs of people with aphasia, including their experiences of working with mental health professionals. METHODS & PROCEDURES: A 22-item online survey was distributed to UK SLTs via the British Aphasiology Society mailing list and Clinical Excellence Networks. Results were analysed using descriptive statistics and qualitative content analysis. OUTCOMES & RESULTS: UK SLTs (n = 124) overwhelmingly considered that addressing psychological well-being (93%) and social participation (99%) was part of their role. To achieve this, they frequently/very frequently used supportive listening (100%) and selected holistic goals collaboratively with clients (87%), including social goals (83%). However, only 42% felt confident in addressing the psychological needs of clients. The main barriers to addressing psychosocial well-being were time/caseload pressures (72%); feeling under-skilled/lack of training (64%), and lack of ongoing support (61%). The main barriers to referring on to mental health professionals were that mental health professionals were perceived as under-skilled when working with people with aphasia (44%); were difficult to access (41%); and provided only a limited service (37%). A main theme from the free-text responses was a concern that those with aphasia, particularly more severe aphasia, received inadequate psychological support due to the stretched nature of many mental health services; mental health professionals lacking skills working with aphasia; and SLTs lacking the necessary time, training and support. The main enablers to addressing psychosocial well-being were collaborative working between SLTs and stroke-specialist clinical psychologists; SLTs with training in providing psychological and social therapy; and ongoing support provided by the voluntary sector. CONCLUSIONS & IMPLICATIONS: The vast majority of SLTs consider the psychosocial well-being of their clients, and work collaboratively with people with aphasia in selecting holistic goals. It is, however, of concern that most respondents felt they lacked confidence and received insufficient training to address psychological well-being. In order to improve psychological services for this client group, there is a strong case that stroke-specialist mental health professionals should strive to make their service truly accessible to people with even severe aphasia, which may involve working more closely with SLTs. Further, improving the skills and confidence of SLTs may be an effective way of addressing psychological distress in people with aphasia.

A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change.

OBJECTIVE: Identify what factors are associated with functional social support and social network post stroke; explore stroke survivors' perspectives on what changes occur and how they are perceived. DATA SOURCES: The following electronic databases were systematically searched up to May 2015: Academic Search Complete; CINAHL Plus; E-journals; Health Policy Reference Centre; MEDLINE; PsycARTICLES; PsycINFO; and SocINDEX. REVIEW METHODS: PRISMA guidelines were followed in the conduct and reporting of this review. All included studies were critically appraised using the Critical Appraisal Skills Program tools. Meta-ethnographic techniques were used to integrate findings from the qualitative studies. Given the heterogeneous nature of the quantitative studies, data synthesis was narrative. RESULTS: Seventy research reports met the eligibility criteria: 22 qualitative and 48 quantitative reporting on 4,816 stroke survivors. The qualitative studies described a contraction of the social network, with non-kin contact being vulnerable. Although family were more robust network members, significant strain was observed within the family unit. In the quantitative studies, poor functional social support was associated with depression (13/14 studies), reduced quality of life (6/6 studies) and worse physical recovery (2/2 studies). Reduced social network was associated with depression (7/8 studies), severity of disability (2/2 studies) and aphasia (2/2 studies). Although most indicators of social network reduced post stroke (for example, contact with friends, 5/5 studies), the perception of feeling supported remained relatively stable (4/4 studies). CONCLUSION: Following a stroke non-kin contact is vulnerable, strain is observed within the family unit, and poor social support is associated with depressive symptoms.

Therapy and support services for people with long-term stroke and aphasia and their relatives: a six-month follow-up study.

OBJECTIVE: To evaluate the impact of attending an aphasia therapy centre on quality of life and communication skills in people with stroke and aphasia and their relatives. DESIGN: Before and after study, six months duration. SETTING: Community-based aphasia therapy centre in the United Kingdom. PARTICIPANTS: Thirty-eight men and women with aphasia following a stroke, and 22 of their relatives. Mean time since stroke was 33 months (SD 24.1). INTERVENTIONS: A range of group therapies for people with aphasia and their relatives and counselling for individuals and couples. OUTCOME MEASURES: Quantitative outcome measures were ratings of quality of life and communication for people with aphasia, and relatives' independent ratings of communication and coping with caring. Qualitative outcomes were perceptions of quality of life and communication skills using semi-structured interviews. RESULTS: Improvement was detected on all outcomes at six months. There were significant changes from baseline on the quality of life measure, mean difference 0.14 (95% confidence interval 0.02, 0.26); and the communication measure assessed by people with aphasia and their relatives, mean difference 12.8 (4.0, 21.5) and 9.7 (3.6, 15.7) respectively. The changes on the coping with caring measure were not significant, though the direction of change was positive. Qualitative interviews revealed a similar pattern of benefit in terms of increased levels of self-confidence and changes in lifestyle and levels of independence. CONCLUSIONS: The results suggest that this therapeutic approach has an impact on quality of life and communication for people with aphasia and their relatives.

Explanations, explanations, explanations: how do patients with limited English construct narrative accounts in multi-lingual, multi-ethnic settings, and how can GPs interpret them?

BACKGROUND: The gap is widening between understanding the subtle ways patients and GPs manage their talk, and superficial discussion of the 'language barrier' among linguistic minority patients. All patients have to explain themselves, not just those for whom English is their first or main language. Patients' explanations reflect how they want the doctor to perceive them as a patient and as a person: they reveal patients' identities. Yet interpretations are not easy when patients' style of talking English is influenced by their first language and cultural background. OBJECTIVE: To explore in detail how patients with limited English and GPs jointly overcome misunderstandings in explanations. METHODS: Using discourse analysis and conversation analysis, we examine how GPs and their patients with limited English negotiate explanations and collaborate to manage, repair or prevent understanding problems. RESULTS: 31% of patients said English was not their first language. Misunderstandings arise owing to a range of linguistic and cultural factors, including stress and intonation patterns, vocabulary, the way a patient sequences their narrative, and patient and GP pursuing different agendas. CONCLUSION: When talk itself is the problem, patients' explanations can lead to misunderstandings, which GPs have to repair if they cannot prevent. Careful interpretation by skillful GPs can reveal patients' knowledge, experience and perspective.

Misunderstandings: a qualitative study of primary care consultations in multilingual settings, and educational implications.

BACKGROUND: Patients in inner-city areas come from increasingly diverse language and cultural backgrounds. Neither communications training modelled on local English speakers nor the provision of interpreters offer adequate solutions. AIM: To identify how patients with limited English and culturally different communication styles consult with general practitioners (GPs) in English, and to develop training strategies from both good practice and observed misunderstandings. METHODS: Randomly selected routine and emergency surgeries in 19 inner London general practices were video-recorded. The videos were viewed independently by 2 discourse analysts. Key consultations, across a wide range of English language ability, were selected and transcribed to analyse misunderstandings resulting from language/cultural differences. RESULTS: Of the 232 video recordings that were made, 20% were with patients with limited English and contained major and often extended misunderstandings. QUALITATIVE ANALYSIS: Four main categories of patient 'talk' contributing to misunderstandings are identified: (1) pronunciation and word stress; (2) intonation and speech delivery; (3) grammar, vocabulary and lack of contextual information; and (4) style of presentation. The importance of different styles of self-presentation by patients as the reason for misunderstandings is highlighted. On only 3 occasions were culturally specific health beliefs raised. CONCLUSION: It is routine for GPs in inner London practices to manage consultations with patients with culturally different communicative styles from their own. Specific training in identifying these problems and preventing/repairing them in the consultation is essential. This level of awareness-raising is more crucial than general discussions of culturally different health belief models.

Presentation of self and symptoms in primary care consultations involving patients from non-English speaking backgrounds.

This paper draws on the PLEDGE research project (Patients with Limited English and Doctors in General Practice) 1 The Patients with Limited English and Doctors in General Practice (PLEDGE) project was funded by Sir Siegmund Warburg's Voluntary Settlement (2001-2003). The research team was: Celia Roberts, Roger Jones, Becky Moss, Srikant Sarangi and Val Wass. which has a database of 232 video-recorded interactions from GP surgeries in South East London. We focus on the opening episodes-the first opportunity the patient has to report on why they have come to see the doctor-to explore some of the contrasts in self presentation and the interactional work that doctors do when faced with the unexpected. Patients who speak a local London or standard variety of English present three aspects: a description of symptoms, the context in which they occurred, and an affective or epistemic stance. These 'micro discourse routines' are accomplished interactionally through the design of figure/ground relationships, framing and metacommunication and presentation of the 'moral self'. Although some patients from non-English speaking backgrounds use broadly similar 'micro discourse routines', the majority configure the relationship between medically salient facts, adequate contextual information and the stance which conveys the 'moral self' in different and apparently less 'orderly' ways. So openings often become protracted and harder work interactionally for both sides. While conversation analytic studies and communication skills textbooks represent the medical consultations as orderly, we suggest that such apparent orderliness must, at least, be partly the result of ironing out linguistic and cultural diversity. Interactional sociolinguistic analysis is used to shed light on the design of these routines and to provide analytic frameworks for doctors in reflecting on their own practice in ways which challenge patient-centred models.