Regulating emotional responses to aphasia to re-engage in life: a qualitative interview study.

BACKGROUND: People with post-stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well-being and life participation. AIMS: To explore how individuals experience and regulate negative emotional responses to aphasia as part of re-engaging with life. METHODS & PROCEDURES: In-depth semi-structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied. OUTCOMES & RESULTS: Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services. CONCLUSIONS & IMPLICATIONS: Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self-management interventions. The findings may inform future interventions to optimize well-being and personally meaningful outcomes for PWA. WHAT THIS PAPER ADDS: What is already known on the subject PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well-being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work? Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed.

The relevance of stroke care for living well with post-stroke aphasia: a qualitative interview study with working-aged adults.

PURPOSE: This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA. MATERIALS AND METHODS: This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. RESULTS: Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency. CONCLUSIONS: The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.Implications for rehabilitationThere is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.This includes flexible access to mental healthcare and speech and language therapy.In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.Training to improve aphasia competency is imperative for healthcare workers.

'I hated being ghosted' - The relevance of social participation for living well with post-stroke aphasia: Qualitative interviews with working aged adults.

BACKGROUND: In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post-stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post-stroke aphasia in relation to social participation and living well with aphasia (LWA). DESIGN AND PARTICIPANTS: We conducted qualitative interviews with 14 people with post-stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis. Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data. RESULTS: Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. CONCLUSIONS: The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.

Supporting people with post-stroke aphasia to live well: A cross-sectional survey of Speech & Language Therapists in Ireland.

Living well with post-stroke aphasia is supported by responsive, collaborative heath and related services, aphasia information and training for people with aphasia (PWA) and their social networks, and opportunities to contribute and participate autonomously in their communities. Several international surveys indicate shortcomings in the provision of long-term support and, in Ireland, while there is a lack of data around service provision for PWA, there is evidence that post-acute stroke services are fragmented and under-resourced. The aim of this study was to survey Speech & Language Therapists (SLTs), due to their unique role in aphasia management, to understand what SLT and related support services and aphasia information and training are currently available to support living well with aphasia in Ireland. We developed and piloted a self-administered, web-based cross-sectional survey with questions informed by a systematic review and qualitative evidence synthesis around living well with aphasia, and with input from a Public and Patient Involvement aphasia advisory group. Data from 95 SLTs working with PWA were analysed using descriptive statistics. Although SLT was generally available for PWA, the results highlight access barriers and evidence-practice gaps in terms of the amount, intensity and timing of SLT to be maximally effective and there was a lack of PWA input into service design and evaluation. Access to other relevant supports such as mental health services was inconsistent and there was a lack of community support for families. There were shortcomings in access to aphasia information/training for PWA, families, friends and other healthcare professionals. There is a need for a coordinated and standardised approach to supporting PWA across Ireland. This study addresses an evidence gap around the provision of stroke services for PWA and is part of a larger project aiming to produce recommendations for improving person-centred support to facilitate living well with aphasia.

Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: A systematic review and thematic synthesis.

BACKGROUND: There is increased focus on supporting people with chronic conditions to live well via person-centred, integrated care. There is a growing body of qualitative literature examining the insider perspectives of people with post-stroke aphasia (PWA) on topics relating to personal recovery and living successfully (PR-LS). To date no synthesis has been conducted examining both internal and external, structural influences on living well. In this study, we aimed to advance theoretical understanding of how best to promote and support PR-LS by integrating the perspectives of PWA on a wide range of topics relating to PR-LS. This is essential for planning and delivering quality care. METHODS AND FINDINGS: We conducted a systematic review, following PRISMA guidelines, and thematic synthesis. Following a search of 7 electronic databases, 31 articles were included and critically appraised using predetermined criteria. Inductive and iterative analysis generated 5 analytical themes about promoting PR-LS. Aphasia occurs in the context of a wider social network that provides valued support and social companionship and has its own need for formal support. PWA want to make a positive contribution to society. The participation of PWA is facilitated by enabling environments and opportunities. PWA benefit from access to a flexible, responsive, life-relevant range of services in the long-term post-stroke. Accessible information and collaborative interactions with aphasia-aware healthcare professionals empower PWA to take charge of their condition and to navigate the health system. CONCLUSION: The findings highlight the need to consider wider attitudinal and structural influences on living well. PR-LS are promoted via responsive, long-term support for PWA, friends and family, and opportunities to participate autonomously and contribute to the community. Shortcomings in the quality of the existing evidence base must be addressed in future studies to ensure that PWA are meaningfully included in research and service development initiatives. SYSTEMATIC REVIEW REGISTRATION: International Prospective Register of Systematic Reviews PROSPERO 2017: CRD42017056110.

Service user reflections on the impact of involvement in research.

PLAIN ENGLISH SUMMARY: Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hospital-based patient research panel and our coordinator have written this paper. Our panel covers a range of rehabilitation and palliative services. These services form the "Therapeutics and Palliative Care Directorate". We describe how we worked collaboratively with hospital staff and co-produced questionnaires to evaluate the impact of our involvement. We compared the different perspectives of the researchers and panel members on our contribution to the research. We present evidence from these different standpoints, including how our panel made a difference. We found we needed to adapt how we collected the views of the researchers and our members to ensure it was meaningful to our group whilst delivering the wider objective of the hospital. A key finding has been how our involvement has extended into other groups, which has identified opportunities for sharing resources and experience, including areas such as cost effectiveness. Our two-person membership of a high level Board of Academics and Senior Clinicians, which oversees the research we contribute to, has resulted in our opinions influencing the heart of the Directorate's research strategy. We have learned the importance of a flexible approach as the Directorate changes, and the demands on us grow. This will continue to help us share our own development, successes and experience and extend the benefits from working this way. ABSTRACT: Background Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement. This commentary, written by two members of a hospital-based patient panel and their coordinator for its work, describes how we co-produced instruments to evaluate the impact and effectiveness of our involvement. We present here the results, including our quantitative and qualitative findings, of this patient led evaluation and reflect on how our involvement has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel. Methods Existing impact frameworks and guidelines were reviewed. Members co-produced and piloted qualitative questionnaires to identify values associated with patient and public involvement (PPI) from both a researcher and panel member perspective, and collected quantitative metrics to provide descriptive statistics on the type of involvement and activities. Members also produced a comments slip to provide contemporaneous feedback after each meeting. Results The panel has reviewed 36 research projects for the Therapeutics and Palliative Care Directorate drawn from speech and language therapy, physiotherapy, occupational therapy, dietetics, podiatry, palliative care services and chaplaincy. Some of the main results of our involvement have been the development of grant applications and making written information more understandable for research participants. Examples of how the Panel made a difference included providing an effective forum for debate by providing practical suggestions to improve research design and identifying potential issues that may not have occurred to the researcher. The panel has had an impact outside of meetings both within the context in which it operates and on the individuals involved. Examples included: influencing the Directorate research agenda, sharing resources with other groups, developing research relationships, and enabling member participation in different roles and settings. Discussion Embedding ourselves within the Directorate research infrastructure has enabled us to adapt to organisational change and actively contribute to the research strategy. There is greater scope for involvement in areas of cost effectiveness and economic evaluation. Increasing member contributions and networking with other groups provides added value as well as cross fertilisation of ideas as part of our widening impact. Conclusion Evaluating the impact of our involvement has improved our understanding of what aspects of involvement work best for the panel and the researchers who attend our meetings, and in the different settings that we work in. It has helped us to focus on how we need to develop to maximise our resources going forward.

Usefulness of investigating error profiles in diagnosis of naming impairments.

BACKGROUND: Word-retrieval difficulties are commonly experienced by people with aphasia (PwA) and also by typically ageing persons. Differentiation between true naming impairments and naming difficulties found in healthy persons may, therefore, be challenging. AIMS: To investigate the extent to which the Maltese adaptation of the Boston Naming Test (BNT) can identify people with lexical retrieval difficulties and to differentiate them from people with unimpaired word finding. METHODS & PROCEDURES: Naming performance of a group of PwA was compared with the performance of a control group. Performance on the Maltese adaptation of the BNT was investigated in terms of scores, range of scores and error profiles of the two groups. OUTCOMES & RESULTS: All PwA scored below the mean score of the controls, indicating that persons who scored above the mean score may be considered as unimpaired. However, a number of the controls obtained very low scores that overlapped with the scores obtained by the PwA. This indicated that scores alone cannot be used to differentiate between impaired and unimpaired people. Some types of errors were only produced by people with impaired naming, and did not appear at all in error profiles of unimpaired individuals. CONCLUSIONS & IMPLICATIONS: Mild-moderate anomic impairments may be missed if naming impairment is assessed and diagnosed using a cut-off score. In order to differentiate between people with impaired and unimpaired naming, it is necessary to look at error profiles, apart from the number of errors, as the presence of atypical errors may be an important indicator of naming impairments.

A Maltese adaptation of the Boston Naming Test: A shortened version.

The Boston Naming Test (BNT) is the most widely used naming test worldwide in research and clinical settings. This study aimed to develop a method for adapting the BNT to suit different linguistic and cultural characteristics using the example of Maltese in a bilingual context. In addition, it investigated the effects in Malta of age and level of education on naming performance. The words of the BNT were first translated into Maltese. The test was then piloted to establish target and alternative responses. Naming performance data were later collected from individuals of different ages and levels of education. Only 38 BNT items had at least 70% name agreement. Main effects of age and education were found. A Maltese adaptation was proposed using 38 items and lenient scoring. Similar procedures may be used in other bilingual populations. The study suggests that normative data should be stratified according to age and education.

Cognitive grammar and aphasic discourse.

In cognitive grammar (CG), there is no clear division between language and other cognitive processes; all linguistic form is conceptually meaningful. In this pilot study, a CG approach was applied to investigate whether people with aphasia (PWA) have cognitive linguistic difficulty not predicted from traditional, componential models of aphasia. Narrative samples from 22 PWA (6 fluent, 16 non-fluent) were compared with samples from 10 participants without aphasia. Between-group differences were tested statistically. PWA had significant difficulty with temporal sequencing, suggesting problems that are not uniquely linguistic. For some, these problems were doubly dissociated with naming, used as a general measure of severity, which indicates that cognitive linguistic difficulties are not linked with more widespread brain damage. Further investigation may lead to a richer account of aphasia in line with contemporary linguistics and cognitive science approaches.

Falls in people with multiple sclerosis who use a walking aid: prevalence, factors, and effect of strength and balance interventions.

OBJECTIVES: To investigate falls prevalence, factors associated with falling, and the effects of balance and strengthening interventions on falls in persons with multiple sclerosis (MS). DESIGN: Baseline and posttreatment data from a randomized controlled trial. SETTING: Community. PARTICIPANTS: People with MS (N=111) who use bilateral support for gait. INTERVENTIONS: Group and one-on-one physiotherapy. MAIN OUTCOME MEASURES: Falls prevalence was assessed using retrospective recall. Demographic information was collected, impairments of body function were assessed, and results from the Berg Balance Scale, 6-minute walk test (6MWT), Multiple Sclerosis Impact Scale-29 version 2 physical and psychological scores, and the Modified Fatigue Impact Scale (MFIS) were obtained. RESULTS: The prevalence of falls in a 3-month period was 50.5% among participants with MS, of whom 28% had more than 1 fall. Fallers had a greater physical (mean difference, -3.9; P=.048) and psychological (median difference, -4.5; P=.001) impact of MS and a greater impact of fatigue (mean difference, -9.4; P=.002). A logistic regression analysis found that the MFIS score made a unique, significant contribution to the model (odds ratio=1.04; 95% confidence interval, 1.018-1.079), correctly identifying 68% of fallers. A 10-week group physiotherapy intervention significantly reduced both the number of fallers (58.3% before to 22.9% after intervention, P=.005) and the number of falls (63 before to 25 after intervention, P=.001). CONCLUSIONS: The prevalence of falls is high in this population of persons with MS, and the impact of MS and of fatigue is greater in fallers. Development and evaluation of interventions to reduce falls risk and the transition to faller or multiple faller status are required.

Passive imaging technology in aphasia therapy.

We describe a brief pilot study undertaken to investigate the potential benefit(s) of using a SenseCam in aphasia therapy. Five post-stroke persons with aphasia and their caregivers agreed to participate. Each person with aphasia wore the SenseCam for 1 day during the daytime. Slide shows and printed images were created from the images obtained and presented at a (videotaped) weekly group conversation session. Therapists' observations, reflections, and opinions were subsequently elicited in a group interview and online survey. Wearable, sensor-triggered automatic imaging devices offer potential advantages over both conventional cameras and generic pictures when used in aphasia therapy. We identified three advantages of a SenseCam over conventional imaging methods: Images can be acquired without the presence of the researcher, no action is required by the wearer for image acquisition and the continuous point of view is that of the wearer. Acquired images are of personal relevance to the wearer and may have greater efficacy for the person with aphasia in aiding conversation, and for the speech language therapist in setting functional language goals.