Paths of mental access in aphasic narratives

Background: Aphasia is generally taken to be a language-specific impairment and cognitive difficulties are not predicted from traditional models of aphasia. Furthermore, it has been shown that people with aphasia have relative strengths at the macro level of discourse, which is arguably more cognitive than linguistic. Many contemporary semantic approaches however, demonstrate the cognitive underpinnings of language and discourse structure. Within Cognitive Linguistics, all linguistic form is conceptually meaningful. Information structure follows temporal, spatial and causal paths of mental access, and builds upon what has already been established in the discourse space. Such an approach transcends lexicogrammatical analysis of discourse cohesion, and schematically unites macro and micro levels of discourse as instances of more generalised cognitive processes. Aims: This study uses a Cognitive Linguistics approach to investigate whether people with fluent and non-fluent aphasia have difficulty at macro and micro levels, and whether there is any correlation of difficulty at each level. Methods & Procedures: 32 Cinderella story samples were cleaned and segmented into attentional frames (10 normal controls, 16 with non-fluent aphasia and 6 with fluent aphasia). The samples were analysed for problems with macro and micro discourse levels as follows: 1. Macro level: temporal order, retrospective elements and prospective elements 2. Micro level: pronouns, definite / indefinite article omission or errors, subject +/or object omission and proportion of nominal attentional frames. Non-parametric testing was performed to determine evidence of significant differences between and within groups, and correlation across levels. Outcomes & Results: There is evidence of significant differences across groups for both macro-level variables and micro-level variables, apart from article errors. Problems with prospective and retrospective elements are correlated with the omission of subject +/or object; and high proportions of nominals are also correlated with retrospective element errors. There is no correlation between temporal order and micro-level difficulties. Furthermore inspection of the results suggest a double dissociation between temporal order difficulties and both omission of subject +/or object and proportion of nominals. 3 Conclusions: The results indicate that people with aphasia have difficulty at both macro and micro discourse levels. Furthermore, there is evidence for dissociation as well as correlation between macro and micro level errors. The results create possibilities for schematic description of aphasia across discourse levels within a cognitive linguistic paradigm. Further research is indicated regarding the pattern of correlation between levels, as well as more finely-grained analysis of the factors responsible for breakdown at the macro level

How to support working aged individuals to live well with poststroke aphasia: a mixed methodologies study.

Background: Person-centred support for ‘living well’ with chronic conditions is necessarily underpinned by patient experiences and needs. About one third of people with stroke have the communication impairment, aphasia, but are under-represented in stroke studies. Additionally, there is a lack of research directly asking people with poststroke aphasia (PWA) about what supports them to live well. Thus, we lack high-quality guidance around developing person-centred support in the context of aphasia. This is particularly true for working aged PWA, despite increasing incidence of working aged stroke. This age group additionally may additionally have unique biopsychosocial support needs for a longer number of years. This PhD aimed to find out how to optimise support for working aged PWA to LWA in Ireland. Design and participants: The design was multiphase mixed methods and underpinned by Critical Realism. The studies comprised: a qualitative evidence synthesis of interviews with PWA; a survey of Speech and Language Therapists; qualitative interviews with working aged PWA; and triangulation of findings. Public and Patient Involvement collaborators with aphasia provided input throughout. Results: LWA was promoted via responsive, flexible and long-term support and information for PWA and families, and through opportunities for social participation. There were shortcomings and inequities in stroke care in Ireland. PWA and families experienced significant life changes and upheaval. Working aged PWA require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. Conclusions: There is an urgent need for structural reforms that improve equity and transparency in access to aphasia and stroke care, information and self-management support for working aged PWA and their families. Furthermore, working aged PWA need support and opportunities for meaningful social participation and contribution in a way that recognises and responds to diversity and individual preferences

Are people with aphasia included in stroke trials? A systematic review and narrative synthesis

Objective: To examine the proportion of people with aphasia (PwA) included and retained in randomised controlled trials (RCTs) of stroke interventions published in the previous 6 years, as well as aphasia-relevant eligibility criteria and inclusion/retention strategies. Data sources: Comprehensive searching of Embase, PubMed and Medline (Ovid) for the period January 2016 – November 2022. Review methods: RCTs examining stroke interventions targeting cognition, psychological wellbeing/ health-related quality of life (HRQL), multidisciplinary rehabilitation, and self-management were included. Methodological quality was assessed using the Critical Appraisal Skills Programme (CASP) Randomised Controlled Trial checklist. Descriptive statistics were applied to extracted data, and results were reported narratively. Results: Fifty-seven RCTs were included. These examined self-management (32%), physical (26%) psychological wellbeing/HRQL (18%), cognitive (14%), and multidisciplinary (11%) interventions. Of 7313 participants, 107 (1.5%) had aphasia and were included in three trials. About one-third did not report on aphasia (32%); over one quarter required functional communication (28%); one quarter excluded all aphasia (25%); and 14% excluded severe aphasia. No aphasia-specific inclusion/retention strategies were available. Conclusion: The findings highlight ongoing under-representation. However, due to shortcomings in aphasia reporting, the findings may underestimate actual inclusion rate. Excluding PwA has implications for the external validity, effectiveness, and implementation of stroke research findings. Triallists may require support in aphasia research strategies and methodological reporting</p

How do speech and language therapists enact aphasia psychosocial support in Ireland? A cross-sectional online survey informed by normalization process theory

Background: Supporting psychosocial well-being in aphasia is necessarily person-centred, interdisciplinary and coordinated. Shortcomings in such support are described in Ireland and elsewhere. Speech and language therapists (SLTs) are integral; and describing current practice and barriers they experience is important for enhancing service delivery. Aims: To understand how SLTs enact, and are supported to enact, aphasia psychosocial care in Ireland. Methods & Procedures: This is a cross-sectional, online, self-administered clinician survey targeting SLTs working minimally 1 year post-qualification with persons with aphasia of any aetiology in Ireland. The survey questions were charted against key constructs of the implementation science framework, normalization process theory (NPT), and descriptive statistics were applied. Outcomes & Results: A total of 54 eligible datasets were included. SLTs believed psychosocial support to be part of their role, but perceived multiple barriers in enacting it. These included a lack of training, clinical supervision, management support, role recognition, and access to and joint working with mental health professionals and services. Conclusions & Implications: SLTs in Ireland face a range of individual and structural barriers, including care coordination and resourcing. There is a clear need not only for training, upskilling and mentorship, but also for wider changes around access to mental health professionals and clarity around the processes of referral, coordination and integration of aphasia care across settings. These findings comprise preliminary insights into current practices. Further research is needed as well as clarity on best-practice pathways for different aetiologies of aphasia. Articulating current practices using NPT may have utility for developing empirically informed and principled interventions to improve service delivery</p

Time to re-envisage culturally responsive care: Intersection of participatory health research and implementation science

Aim: In the context of widening societal diversity, culturally and linguistically diverse patients continue to experience inequities in healthcare access and deficiencies in standards of nursing care. Re-framing culturally responsive care as a complex intervention spanning multiple interacting factors at micro, meso and macro levels is an essential prerequisite for addressing knowledge translation gaps into everyday nursing practice. To this end, this paper proposes and explicates the potential of applying synergistic participatory implementation methodologies for developing effective implementation strategies with impact at individual and wider structural levels. Design: Discussion Paper. Data Sources: A co-design case study is presented as an example of combining normalization process theory and participatory learning and action to investigate and support the implementation of culturally responsive care in general practice nursing. Implications for Nursing: Enacting culturally responsive health care is inherently complex in that it is influenced by multiple interacting factors. Viewing culturally responsive care as a complex intervention and incorporating a synergistic participatory implementation science approach offers possibilities for addressing the documented shortcomings in the implementation of culturally responsive nursing care. Conclusion: There is a need to move away from conventional approaches to conceptualizing and generating evidence on culturally responsive care. Incorporating participatory implementation methodologies can provide a new lens to investigate and support whole system implementation strategies. Impact: The combination of participatory and implementation methodologies is both theoretically and empirically informed. Engaging stakeholders in the co-design and co-production of evidence and solutions to long standing problems has the potential to increase the likelihood of influencing iterative and sustainable implementation and changes to clinical practice and systems. Patient or Public Contribution: This work is part of a wider programme of participatory health research on migrant health, partnering with a non-governmental organization that supports migrants</p

Harnessing insights from a community of practice to progress aphasia psychological care in Ireland: A mixed methods integration study informed by normalisation process theory

Background: A range of individual and systemic barriers to delivering psychological care to people living with aphasia are widely reported. An integrated model of care, stepped care, has been proposed. Integrated aphasia care constitutes a complex intervention that necessitates local adaptation and implementation. Whilst a need for better access to aphasia psychological care has been documented in Ireland; no coordinated approach has been developed or actioned. Aims: To discern overarching principles for advancing the implementation of coordinated aphasia psychological care in Ireland by drawing on the perspectives of Speech and Language Therapists (SLTs), Occupational Therapists, and Clinical Psychologists. Methods & Procedures: A convergent parallel mixed methods study comprising qualitative interviews with SLTs; a survey of interdisciplinary stroke professionals; and an integration by triangulation of the interview and survey findings. The implementation science framework Normalisation Process Theory was used as a lens to discern how clinicians make sense of, are enrolled in, and enact aphasia psychological care. Outcomes & Results: Four SLTs were interviewed and there were 40 survey respondents. Empowering clinicians to deliver aphasia psychological care requires training, professional and emotional support, and clarity around the way that care is integrated across settings and disciplines. It is necessary to develop a shared interdisciplinary conceptualisation of such a pathway, and to leverage the apparent desire for change. Conclusions: The findings address a lack of empirical knowledge about the ways in which clinicians might be supported to delivering integrated aphasia psychological care in Ireland. The study will inform ongoing research and has relevance for other jurisdictions.</p

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

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

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 & Patient Involvement advisory group. We conducted in-depth, semistructured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. Results: Support services and LWA spanned 5 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 workingage, 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

Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research

Purpose: International health and social care policy increasingly draws on stakeholder experiences and opinions. The distinctions between various approaches to researching “insider” perspectives are contentious. This article explores features (e.g. philosophy, ethics, and power dynamics) of qualitative approaches and public and patient involvement (PPI) in communication disorder research and explicates the blurred boundaries between them. Method: We use two case studies involving PPI contributors with aphasia – an Irish mixed methodologies study and a Danish qualitative study - to illustrate PPI in research and thus demonstrate how researchers can bridge the gap between theoretical considerations and research implementation Result: There are important distinctions between PPI in research and qualitative approaches (e.g. origins, roles, and reimbursement) and many blurred boundaries (e.g. inclusion, openness to mutual learning and “insider” perspectives). A key difference is that PPI contributors take an active role at project level and more flexibility in roles is required in PPI research. These flexible and varied roles reflect the shared decision-making powers between lay and professional researchers. Conclusion: PPI can add innovation to qualitative and mixed methods communication disorder research as illustrated in both case studies. However, researchers wishing to include PPI must embrace and respond to the evolving and flexible nature of PPI relationships and processes. Flexibility, negotiation and continuous reflection on methodological approaches, power dynamics, roles and co-created knowledge will impact and transform the field of research in communication disorders. </p