Telehealth practice in aphasia: A survey of UK speech and language therapists, with a focus on assessment.

BACKGROUND AND OBJECTIVES: Evidence suggests telehealth in speech and language therapy can enhance access to care, cost-effectiveness and satisfaction. However, little is known about use of telehealth in the United Kingdom. Moreover, many assessments/outcome measures for aphasia have been tested for face-to-face administration only, posing challenges to reliable use within the telehealth context. We explored the experiences and views of speech and language therapists (SLTs) working with people with aphasia on using telehealth to conduct assessments/outcome measures, perceived barriers and facilitators in telehealth, and their priorities for research in telehealth aphasia assessment. METHOD: We explored views of UK SLTs through an online cross-sectional survey (2021) delivered through the Qualtrics platform. The survey covered three main areas: (i) participant demographics; (ii) experience of using telehealth and doing telehealth assessments with people with aphasia post-stroke during the COVID-19 pandemic; and (iii) plans for telehealth post-pandemic. Response formats included yes/no, multiple choice, 5-point Likert scales and open-ended text responses. The survey was expected to take no more than 10 min to complete. Survey data were analysed through descriptive statistics and content analysis of open-ended questions. RESULTS: One hundred twenty-four SLTs responded to the survey. The majority (>80%) used telehealth during the COVID-19 pandemic and >90% planned to continue to use telehealth in the future. The most used platforms were Zoom, Microsoft Teams and Attend Anywhere. Access to internet and telehealth platforms, and practical problems (e.g., difficulties sharing resources online, limited functionality of telehealth platforms for assessment) were common barriers. Therapists highlighted that training, resources and materials that assist the administration of assessments were important. Most participants responded that there was a need for existing measures to be tested for administration via telehealth (n = 68, 70.8%). Participants overall felt there was a need for online interactive assessments, more online resources that have been trialled for use via telehealth, accessible formats for resources for people with aphasia and clear instructions for how people with aphasia can access resources. CONCLUSIONS: This study provides new insights into the current use of telehealth assessment with people with aphasia in the United Kingdom and directions for future research. Barriers and facilitators identified can support the implementation of telehealth assessment in SLT services. WHAT THIS PAPER ADDS: What is already known on the subject The use of telehealth in speech and language therapy has advantages in terms of access to care, cost-effectiveness and satisfaction with care. However, little is known about the use of telehealth in aphasia rehabilitation in the United Kingdom, especially in the area of assessment and outcome measurement. What this paper adds to existing knowledge This study identified that the majority (>80%) of aphasia therapists used telehealth during the COVID-19 pandemic and >90% planned to continue to use telehealth in the future. A need was identified for existing measures to be tested for administration via telehealth and for training, resources (e.g., online interactive assessments) and materials (e.g., accessible formats for people with aphasia). What are the potential or actual clinical implications of this work? To facilitate the successful implementation of telehealth assessment, there is a need for measures validated for use via telehealth and more online resources that have been trialled for use via telehealth.

Speech, language and communication needs and mental health: the experiences of speech and language therapists and mental health professionals.

BACKGROUND: While the relationship between speech, language and communication needs (SLCN) and mental health difficulties has been recognized, speech and language therapists (SLTs), and mental health professionals face challenges in assessing and treating children with these co-occurring needs. There exists a gap in the evidence base for best practice for professionals working with children and young people (CYP) who experience difficulties in both areas. AIMS: To explore the views of SLTs and mental health clinicians about their experiences of working with CYP exhibiting co-occurring SLCN and mental health difficulties. METHODS & PROCEDURES: Semi-structured interviews were conducted with eight SLTs and six mental health professionals, including psychotherapists, clinical psychologists, play therapists and counsellors, with experience working with CYP with SLCN. Interviews were analysed using reflexive thematic analysis and themes were identified from the data. OUTCOMES & RESULTS: Participants felt that SLCN and mental health difficulties frequently co-occur. Participants described how CYP with SLCN and mental health issues commonly experience difficulties across and between the domains of language and cognition, emotional well-being and challenging behaviour. Findings suggest that there are organizational limitations in the fields of SLT and mental health that have implications for the efficacy of assessment and treatment of CYP with SLCN and mental health difficulties. Traditional talking therapies were perceived to be inaccessible and ineffective for CYP with SLCN and mental health difficulties. Interventions blending behaviour and emotion programmes with language and communication interventions were considered potentially beneficial. CONCLUSIONS & IMPLICATIONS: Future research should explore and evaluate current services and service set-up in SLT and mental health. The findings from this study have important implications for the efficacy of treatments provided to this population suggesting that more research needs to be done into effective diagnosis and interventions for this population. WHAT THIS PAPER ADDS: What is already known on the subject Research suggests that CYP with SLCN, such as developmental language disorder (DLD), are likely to experience mental health difficulties including depression, anxiety and poor emotional well-being. CYP who experience difficulties with SLCN and poor mental health are not well understood and this area remains under-researched. This has implications for clinician knowledge and therefore the effective diagnosis and treatment of children and adolescents experiencing SLCN and mental health difficulties. In addition, little is known about the accessibility of talking therapies to CYP presenting with SLCN and mental health difficulties. What this paper adds to existing knowledge SLCN issues are understood by SLTs and mental health issues are understood by mental health professionals, but where these co-occur difficulties exist for the diagnostic process, with professionals perceiving that CYP in this category are often undiagnosed or misdiagnosed. Organizational boundaries between SLT and mental health were perceived to contribute to a lack of understanding of SLCN and mental health needs, which has implications for effective diagnosis and treatment. Traditional talking therapies were thought to be inaccessible for CYP with SLCN and mental health difficulties. Interventions used in both SLT and psychotherapy were perceived as clinically useful if combined. What are the potential or actual clinical implications of this work? This paper highlights implications for the accessibility and efficacy of the assessment and treatment provided to this population and to the organization of services currently treating this group of CYP. A direction for future research would be to undertake service evaluations and intervention-based studies.

A pilot economic evaluation of a feasibility trial for SUpporting wellbeing through PEeR-Befriending (SUPERB) for post-stroke aphasia.

OBJECTIVES: To explore the feasibility of a full economic evaluation of usual care plus peer-befriending versus usual care control, and potential cost-effectiveness of peer-befriending for people with aphasia. To report initial costs, ease of instruments' completion and overall data completeness. DESIGN: Pilot economic evaluation within a feasibility randomised controlled trial. SETTING: Community, England. PARTICIPANTS: People with post-stroke aphasia and low levels of psychological distress. INTERVENTION: All participants received usual care; intervention participants received six peer-befriending visits between randomisation and four months. MAIN MEASURES: Costs were collected on the stroke-adapted Client Service Receipt Inventory (CSRI) for health, social care and personal out-of-pocket expenditure arising from care for participants and carers at 4- and 10-months post-randomisation. Health gains and costs were reported using the General Health Questionnaire-12 and the EQ-5D-5L. Mean (CI) differences for costs and health gains were reported and uncertainty represented using non-parametric bootstrapping and cost-effectiveness acceptability curves. RESULTS: 56 participants were randomised. Mean age was 70.1 (SD 13.4). Most (n = 37, 66%) had mild and many (n = 14; 25%) severe aphasia. There was ≥94% completion of CSRI questions. Peer-befriending was higher in intervention arm (p < 0.01) but there were no significant differences in total costs between trial arms. Peer-befriending visits costed on average £57.24 (including training and supervision costs). The probability of peer-befriending being cost-effective ranged 39% to 66%. CONCLUSIONS: Economic data can be collected from participants with post-stroke aphasia, indicating a full economic evaluation within a definitive trial is feasible. A larger study is needed to demonstrate further cost-effectiveness of peer-befriending.

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.

'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.

"Now I Am Myself": Exploring How People With Poststroke Aphasia Experienced Solution-Focused Brief Therapy Within the SOFIA Trial.

Aphasia, a language disability, can profoundly affect a person's mood and identity. The experiences of participants who received Solution-Focused Brief Therapy, a psychological intervention, were explored in the Solution-Focused brief therapy In poststroke Aphasia (SOFIA) Trial. Thirty participants with chronic aphasia, 14 with severe aphasia, participated in in-depth interviews that were analyzed using framework analysis. Two overarching themes emerged: valued therapy components (exploring hopes, noticing achievements, companionship, sharing feelings, and relationship with therapist) and perceptions of progress (mood, identity, communication, relationships, and independence). Participants were categorized into four groups: (a) "changed," where therapy had a meaningful impact on a person's life; (b) "connected," where therapy was valued primarily for companionship; (c) "complemental," where therapy complemented a participant's upward trajectory; and (d) "discordant," where therapy misaligned with participants' preference for impairment-based language work. This study suggests that it is feasible to adapt a psychological therapy for people with aphasia, who perceive it as valuable.

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.

'Living with Aphasia the Best Way I Can': A Feasibility Study Exploring Solution-Focused Brief Therapy for People with Aphasia.

OBJECTIVE: Post-stroke aphasia can profoundly affect a person's social and emotional well-being. This study explored the feasibility of solution-focused brief therapy as an accessible intervention and investigated its impact on participants' psychosocial well-being. PARTICIPANTS AND METHODS: This is a small-scale repeated-measures feasibility study. Participants received between 3 and 5 therapy sessions. They were assessed on psychosocial outcome measures before and after therapy and took part in post-therapy in-depth qualitative interviews. Three men and 2 women with chronic aphasia took part (age range: 40s-70s). RESULTS: Participants found the therapy acceptable, and it was possible to adapt the approach so as to be communicatively accessible. Quantitative assessments showed encouraging trends in improved mood [pre-therapy General Health Questionnaire 12-item version (GHQ-12): mean (SD): 4.80 (4.60), median: 6; post-therapy GHQ-12: mean (SD): 2.00 (2.55), median: 1] and improved communicative participation [pre-therapy Communicative Participation Item Bank (CPIB): mean (SD): 7.80 (5.76), median: 7; post-therapy CPIB: mean (SD): 12.20 (4.44), median: 14]. Measures of social network and connectedness, however, remained stable. Themes emerging from the qualitative analysis included changes to mood, communicative participation, mobility, and everyday activities. CONCLUSIONS: This small-scale study suggests that solution-focused brief therapy is a promising approach to helping people with aphasia build positive change in their lives.

Stroke Social Network Scale: development and psychometric evaluation of a new patient-reported measure.

OBJECTIVE: To describe the development and psychometric evaluation of a new patient-reported measure that assesses a person's social network in the first six months post stroke. Although it is known that the social networks of those with stroke and aphasia are vulnerable to change, there is currently no social network scale that has been validated for this population. DESIGN AND SETTING: Repeated measures psychometric study, evaluating internal consistency, construct validity, and responsiveness to change of the Stroke Social Network Scale. Participants were interviewed two weeks, three months and six months following a first stroke. MEASURES: Stroke Social Network Scale; Medical Outcomes Studies (MOS) Social Support Survey; National Institute of Health Stroke Scale; Stroke and Aphasia Quality of Life Scale-39g; Frenchay Aphasia Screening Test. RESULTS: 87 participants were recruited, of whom 71 were followed up at six months. Factor analysis was used with the Stroke Social Network Scale to derive five subdomains: satisfaction; children; relatives; friends; and groups, which explained 63% of variance. There was good evidence for the scale's internal consistency (α = 0.85); acceptability; and convergent (r = 0.34; r = 0.53) and discriminant validity (r = -0.10; r = -0.19). It differentiated between those with high versus low perceived social support (p = 0.01). Moderate changes from two weeks to six months supported responsiveness (d = 0.32; standardised response mean (SRM) = 0.46), with the friends factor, as expected, showing more change than the children's factor (friends factor: d = 0.46; SRM = 0.50; children's factor: d = 0.06; SRM = 0.19). CONCLUSIONS: The Stroke Social Network Scale is a new measure that demonstrates good internal consistency, validity and responsiveness to change.

Why do people lose their friends after a stroke?

BACKGROUND: It is well-known that people lose friends after a stroke; what is less well understood is why this occurs. AIMS: This study explored why people lose contact with their friends, and whether there are any protective factors. It also examined how friendship loss and change is perceived by the individual. METHODS AND PROCEDURES: Participants with a first stroke were recruited from one acute stroke unit in the UK. In-depth qualitative interviews took place between 8 and 15 months post stroke. OUTCOMES AND RESULTS: 29 participants were recruited of whom 10 had aphasia. The main reasons given for losing friends were: loss of shared activities, reduced energy levels, physical disability, aphasia, unhelpful responses of others, environmental barriers, and changing social desires. The subset of participants who experienced the most extensive loss of friends were those who described a sense that they were 'closing in' on themselves leading to a withdrawal from social contact and a new preference for meeting only close friends and family. Those with aphasia experienced the most hurtful negative responses from others and found it more difficult to retain their friends unless they had strong supportive friendship patterns prior to the stroke. The factors which helped to protect friendships included: having a shared history, friends who showed concern, who lived locally, where the friendship was not activity-based, and where the participant had a 'friends-based' social network prior to the stroke. CONCLUSIONS AND IMPLICATIONS: Given the link between depression and loss of friends post stroke, supporting an individual in maintaining a social network is likely to be beneficial. For intervention to be effective, however, it may need to take into account not only the impact of new physical and language disabilities, but also changing social desires.

Solution Focused Brief Therapy in Post-Stroke Aphasia (SOFIA): feasibility and acceptability results of a feasibility randomised wait-list controlled trial.

OBJECTIVES: The Solution Focused Brief Therapy in Post-Stroke Aphasia feasibility trial had four primary aims: to assess (1) acceptability of the intervention to people with aphasia, including severe aphasia, (2) feasibility of recruitment and retention, (3) acceptability of research procedures and outcome measures, and (4) feasibility of delivering the intervention by speech and language therapists. DESIGN: Two-group randomised controlled feasibility trial with wait-list design, blinded outcome assessors and nested qualitative research. SETTING: Participants identified via two community NHS Speech and Language Therapy London services and through community routes (eg, voluntary-sector stroke groups). PARTICIPANTS: People with aphasia at least 6 months post stroke. INTERVENTION: Solution-focused brief therapy, a psychological intervention, adapted to be linguistically accessible. Participants offered up to six sessions over 3 months, either immediately postrandomisation or after a delay of 6 months. OUTCOME MEASURES: Primary endpoints related to feasibility and acceptability. Clinical outcomes were collected at baseline, 3 and 6 months postrandomisation, and at 9 months (wait-list group only). The candidate primary outcome measure was the Warwick-Edinburgh Mental Well-being Scale. Participants and therapists also took part in in-depth interviews. RESULTS: Thirty-two participants were recruited, including 43.8% with severe aphasia. Acceptability endpoints: therapy was perceived as valuable and acceptable by both participants (n=30 interviews) and therapists (n=3 interviews); 93.8% of participants had ≥2 therapy sessions (90.6% had 6/6 sessions). Feasibility endpoints: recruitment target was reached within the prespecified 13-month recruitment window; 82.1% of eligible participants consented; 96.9% were followed up at 6 months; missing data <0.01%. All five prespecified feasibility progression criteria were met. CONCLUSION: The high retention and adherence rates, alongside the qualitative data, suggest the study design was feasible and therapy approach acceptable even to people with severe aphasia. These results indicate a definitive randomised controlled trial of the intervention would be feasible. TRIAL REGISTRATION NUMBER: NCT03245060.

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.

Psychological distress after stroke and aphasia: the first six months.

OBJECTIVE: We explored the factors that predicted psychological distress in the first six months post stroke in a sample including people with aphasia. DESIGN: Prospective longitudinal observational study. SETTING AND SUBJECTS: Participants with a first stroke from two acute stroke units were assessed while still in hospital (baseline) and at three and six months post stroke. MAIN MEASURES: Distress was assessed with the General Health Questionnaire-12. Other measures included: NIH Stroke Scale, Barthel Index, Frenchay Aphasia Screening Test, Frenchay Activities Index, MOS Social Support Scale and social network indicators. Logistic regression was used to identify predictors of distress at each stage post stroke; and to determine what baseline factors predicted distress at six months. RESULTS: Eighty-seven participants were able to self-report on measures used, of whom 32 (37%) had aphasia. 71 (82%) were seen at six months, including 11 (16%) with aphasia. Predictors of distress were: stroke severity at baseline; low social support at three months; and loneliness and low satisfaction with social network at six months. The baseline factors that predicted distress at six months were psychological distress, loneliness and low satisfaction with social network (Nagelkerke R(2) = 0.49). Aphasia was not a predictor of distress at any time point. Yet, at three months post stroke 93% of those with aphasia experienced high distress, as opposed to 50% of those without aphasia (chi(2) (1) = 8.61, P<0.01). CONCLUSIONS: Factors contributing to distress after stroke vary across time. Loneliness and low satisfaction with one's social network are particularly important and contribute to long-term psychological distress.

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.

"I've got somebody there, someone cares": what support is most valued following a stroke?

PURPOSE: There is often a need for increased support following a stroke. This study explored what types of support are provided by different network members and what support functions are most valued. METHODS: Adults with first stroke were recruited from a stroke unit and participated in in-depth interviews 8-15 months poststroke. Framework Analysis was used to build thematic and explanatory accounts of the data. RESULTS: Twenty-nine participants took part. Main themes to emerge were as follows: the spouse was the most important provider of support; children were a relatively stable source of support, although many participants expressed reservations about worrying a child; relatives and friends typically provided social companionship and emotional support rather than on-going practical support. The only universally valued support function was the sense that someone was concerned and cared. Other valued functions were as follows: social companionship including everyday social "chit chat"; practical support provided sensitively; and, for many, sharing worries and sensitive encouragement. The manner and context in which support was provided was important: support was easiest to receive when it communicated concern, and was part of a reciprocal, caring relationship. CONCLUSIONS: As well as measuring supportive acts, researchers and clinicians should consider the manner and context of support. Implications for rehabilitation The manner in which support was provided mattered: support was easier to receive when it communicated concern. The spouse was the most important source of all support functions; children, relatives and friends were important providers of emotional and social companionship support. Researchers and clinicians should not only focus on what support is received, but also the context (e.g., contribution, reciprocity, quality of relationship) and manner (e.g., responsiveness, sensitivity) of the support.

A Typology to Explain Changing Social Networks Post Stroke.

Background and Objectives: Social network typologies have been used to classify the general population but have not previously been applied to the stroke population. This study investigated whether social network types remain stable following a stroke, and if not, why some people shift network type. Research Design and Methods: We used a mixed methods design. Participants were recruited from two acute stroke units. They completed the Stroke Social Network Scale (SSNS) two weeks and six months post stroke and in-depth interviews 8-15 months following the stroke. Qualitative data was analysed using Framework Analysis; k-means cluster analysis was applied to the six-month data set. Results: Eighty-seven participants were recruited, 71 were followed up at six months, and 29 completed in-depth interviews. It was possible to classify all 29 participants into one of the following network types both prestroke and post stroke: diverse; friends-based; family-based; restricted-supported; restricted-unsupported. The main shift that took place post stroke was participants moving out of a diverse network into a family-based one. The friends-based network type was relatively stable. Two network types became more populated post stroke: restricted-unsupported and family-based. Triangulatory evidence was provided by k-means cluster analysis, which produced a cluster solution (for n = 71) with comparable characteristics to the network types derived from qualitative analysis. Discussion and Implications: Following a stroke, a person's social network is vulnerable to change. Explanatory factors for shifting network type included the physical and also psychological impact of having a stroke, as well as the tendency to lose contact with friends rather than family.

What Factors Predict Who Will Have a Strong Social Network Following a Stroke?

PURPOSE: Measures of social networks assess the number and nature of a person's social contacts, and strongly predict health outcomes. We explored how social networks change following a stroke and analyzed concurrent and baseline predictors of social networks 6 months poststroke. METHOD: We conducted a prospective longitudinal observational study. Participants were assessed 2 weeks (baseline), 3 months, and 6 months poststroke. Measures comprised the Stroke Social Network Scale (Northcott & Hilari, 2013), Medical Outcomes Study Social Support Survey (Sherbourne & Stewart, 1991), National Institutes of Health Stroke Scale (Brott et al., 1989), Frenchay Aphasia Screening Test (Enderby, Wood, Wade, & Langton Hewer, 1987), Frenchay Activities Index (Wade, Legh-Smith, & Langton Hewer, 1985), and Barthel Index (Mahoney, Wood, & Barthel, 1958). Analyses of variance and standard multiple regression were used to analyze change and identify predictors. RESULTS: Eighty-seven participants (37% with aphasia) were recruited; 71 (16% with aphasia) were followed up at 6 months. Social network scores declined poststroke (p = .001). Whereas the Children and Relatives factors remained stable, the Friends factor significantly weakened (p < .001). Concurrent predictors of social network at 6 months were perceived social support, ethnicity, aphasia, and extended activities of daily living (adjusted R2 = .42). There were 2 baseline predictors: premorbid social network and aphasia (adjusted R2 = .60). CONCLUSIONS: Social networks declined poststroke. Aphasia was the only stroke-related factor measured at the time of the stroke that predicted social network 6 months later.

Does mode of administration affect health-related quality-of-life outcomes after stroke?

Telephone interviews and postal surveys may be a resource-efficient way of assessing health-related quality-of-life post-stroke, if they produce data equivalent to face-to-face interviews. This study explored whether telephone interviews and postal surveys of the Stroke and Aphasia Quality of Life Scale (SAQOL-39g) yielded similar results to face-to-face interviews. Participants included people with aphasia and comprised two groups: group one (n =22) were 3-6 months post-stroke; group two (n =26) were ≥1 year post-stroke. They completed either a face-to-face and a telephone interview or a face-to-face interview and a postal survey of the SAQOL-39g. Response rates were higher for group two (87%) than for group one (72-77%). There were no significant differences between respondents and non-respondents on demographics, co-morbidities, stroke severity, or communication impairment. Concordance between face-to-face and telephone administrations (.90-.98) was excellent; and very good-excellent between face-to-face and postal administrations (.84-.96), although scores in postal administrations were lower (significant for psychosocial domain and overall SAQOL-39g in group two). These findings suggest that the SAQOL-39g yields similar results in different modes of administration. Researchers and clinicians may employ alternative modes, particularly in the longer term post-stroke, in order to reduce costs or facilitate clients with access difficulties.