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An acquired brain injury (ABI) has an impact across almost all areas of an individual's life, including their relationships, community engagement, education and vocational participation. Cognitive-communication disorders (CCD), defined as communication dysfunction resulting from underlying cognitive impairments (Togher et al., 2023), present a major barrier to people with ABI participating in successful and enjoyable communication across family, social and work contexts. It has been estimated that CCD are experienced by over 75% of people with an ABI (MacDonald, 2017), and present predominantly as social communication difficulties ranging from impoverished communication through to excessive talkativeness (Togher et al., 2023). At a global level, it is estimated that 50 million people worldwide sustain a traumatic brain injury (TBI) each year (Maas et al., 2017) and that 12.2 million people have a stroke each year (Feigin et al., 2022), which are the two most common aetiologies of ABI. At an individual and at a global level, there is an urgent need to deliver appropriate, evidence-based and accessible clinical services to support people with CCD. There are several factors that create complexity in addressing this need. Firstly, CCD are heterogeneous, chronic conditions with a long-term impact on a person's life, which require a flexible and individualised approach. Furthermore, rehabilitation for CCD involves complex interventions (Campbell et al., 2007) involving different components which may be interdependent, and which may not be well-defined. Finally, there can be challenges in implementation of evidence-based interventions into real-world clinical contexts, due to contextual or systemic barriers. This special issue of the International Journal of Language and Communication Disorders reports on research studies that have engaged with these complexities and highlighted potential new pathways towards improved support for people with ABI.

Purpose Little is known about how people living with dysphagia in rural, socio-economically impoverished contexts in Africa are supported and manage their disability. This scoping review sought to map and synthesise evidence relating to the management of dysphagia in adults in community/home settings in Africa as a “starting point” for a broader study on this topic. Method A multifaceted search strategy involved searches of electronic databases and grey literature, hand searches, ancestry searches, and consultation with expert advisors. Records were screened by two blinded reviewers. Characteristics of included studies were summarised, and their findings synthesised using the Framework approach. Result Six studies were included, relating to services for people with dysphagia secondary to various aetiologies. No grey literature was identified, that provided service delivery descriptions or practice guidance. This limited evidence suggests little professional support is available to people living with dysphagia in the community. Individuals and carers use a range of strategies, including choosing different food and drink items and modifying how food is chewed and swallowed. Conclusion Further research is required to understand current practice in managing dysphagia in the community in Africa, and the needs and priorities of community members who experience dysphagia and their carers.

As life expectancy increases, more adults are living with conditions affecting their communication, and many of these will reside within care settings such as hospitals or long-term care, cared for by nurses and health care assistants (HCAs). The current workload and role of a nurse or HCA is complex and busy, and when caring for a patient who is also an Augmentative and Alternative Communication (AAC) user, they need additional skills and knowledge to be an effective communication partner. Nursing staff also need to undertake the various tasks that an AAC facilitator has to assume, such as high-tech AAC system maintenance - updating software, battery charging, cleaning as well as liaising with companies or therapists for help (Beukelman et al., 2008). Research has identified difficult and distressing experiences of AAC users within hospitals, and nurses have reported feeling frustrated when caring for AAC users due to a lack of knowledge about AAC e.g. Hemsley et al. (2011). Many barriers to implementing AAC, particularly in hospital settings have been identified, including a lack of staff knowledge and skills (Gormley and Light, 2019). The COVID-19 pandemic’s impact on communication function has escalated the need for communication aids and subsequently a nurse’s need for awareness of alternative and supportive communication tools and strategies (Altschuler, 2021). Training nursing staff in inpatient settings is complicated by a need to train a large number of healthcare workers on overlapping shift work patterns, 24 hours a day, 7 days a week. Globally, nurses and AAC users are diverse culturally and linguistically, and training needs to ensure these factors are considered. In terms of opportunities to support nursing staff, recent research by Barnard et al. (2021) found that most interactions between speech and language therapists (SLTs) and nurses were punctuated by interruptions to the conversations in which SLTs seized moments in between nursing tasks to expl

Shared decision-making is a fundamental aspect of person-centered care, and can and should be part of many different aspects of the rehabilitation process. Communication disabilities like aphasia, which affects people's ability to use and understand spoken and written language, can make shared decision-making especially challenging to the resources and skills of rehabilitation practitioners. The purpose of this narrative review is to provide a comprehensive description of tools that can support successful shared decision-making with people with aphasia in the rehabilitation environment. These tools and strategies are appropriate for use by physicians, nurses, social workers, physical therapists (also referred to as physiotherapists), occupational therapists, and other service or care providers. The important role of speech-language pathologists as consultants is also described. Case scenarios throughout the paper illustrate the application of recommended tools and strategies along with best practices.

Background: Informed consent is considered a fundamental requirement for participation in trials, yet obtaining consent is challenging in a number of populations and settings. This may be due to participants having communication or other disabilities, their capacity to consent fluctuates or they lack capacity, or in emergency situations where their medical condition or the urgent nature of the treatment precludes seeking consent from either the participant or a representative. These challenges, and the subsequent complexity of designing and conducting trials where alternative consent pathways are required, contribute to these populations being underserved in research. Recognising and addressing these challenges is essential to support trials involving these populations and ensure that they have an equitable opportunity to participate in, and benefit from, research. Given the complex nature of these challenges, which are encountered by both adults and children, a cross-disciplinary approach is required. Discussion: A UK-wide collaboration, a sub-group of the Trial Conduct Working Group in the MRC-NIHR Trial Methodology Research Partnership, was formed to collectively address these challenges. Members are drawn from disciplines including bioethics, qualitative research, trials methodology, healthcare professions, and social sciences. This commentary draws on our collective expertise to identify key populations where particular methodological and ethical challenges around consent are encountered, articulate the specific issues arising in each population, summarise ongoing and completed research, and identify targets for future research. Key populations include people with communication or other disabilities, people whose capacity to consent fluctuates, adults who lack the capacity to consent, and adults and children in emergency and urgent care settings. Work is ongoing by the sub-group to create a database of resources, to update NIHR guidance, and to develop proposal

Purpose: To evaluate the usability and acceptability of the Mental Capacity Assessment Support Toolkit (MCAST) in healthcare settings and whether its use was associated with increased legal compliance and assessor confidence. Materials and methods: A mixed methods convergence triangulation model was used. Multidisciplinary professionals used the MCAST during mental capacity assessments for UK hospital patients with diagnoses of stroke or acute or chronic cognitive impairment. Changes in legal compliance were investigated by comparing scores on case note audits before and after implementation of the MCAST. Changes in assessor confidence and professionals’ perceptions of the MCAST’s usability and acceptability were explored using surveys. Patients’ and family members’ views on acceptability were determined using semi-structured interviews. Data were integrated using triangulation. Results: Twenty-one professionals, 17 patients and two family members participated. Use of the MCAST was associated with significant increases in legal compliance and assessor confidence. Most professionals found the MCAST easy to use and beneficial to their practice and patients. Patients and family members found the MCAST materials acceptable. Conclusions: The MCAST is the first toolkit to support the needs of individuals with communication disabilities during mental capacity assessments. It enables assessors to deliver high quality, legally compliant and confident practice. IMPLICATIONS FOR REHABILITATION Mental capacity assessment practice needs to be improved to maximise patient autonomy, safety and well-being. The MCAST is a paper-based toolkit designed to facilitate and improve mental capacity practice in England and Wales. This study suggests the MCAST would be easy and acceptable to use in healthcare settings and could lead to improvements in assessment quality and assessor confidence.

Up to 75% of UK care home residents may lack the mental capacity to make certain decisions (Wade, Clinical Rehabilitation, 2019, 33, 1561–1570). Care home staff need evidence-based tools to help them assess residents’ mental capacity and provide decision-making support (NICE, Decision-making and mental capacity NICE guideline NG108, 2018). The Mental Capacity Assessment Support Toolkit (MCAST) was designed to support multidisciplinary healthcare staff to prepare, complete and document legally compliant mental capacity assessments. MCAST has not yet been trialled in care homes. This study used a descriptive qualitative design to: (a) understand the current challenges faced by care home staff when supporting residents to make decisions and participate in mental capacity assessments; (b) explore staff members’ support needs in this context and (c) to identify if and how the toolkit could be adapted for use in care homes. A purposive sample of 29 staff working as managers (n = 18), nurses (n = 7) and care assistants (n = 4) across five care homes in North West England participated in five semi-structured focus groups between May and July 2019. Data from the focus group transcripts were analysed thematically (Braun & Clarke, Qualitative Research in Psychology, 2006, 3, 77–101). Five main themes were identified: (a) involvement of residents in decision-making; (b) approaches to mental capacity assessment; (c) working with residents with communication difficulties; (d) feelings about practice and (e) responses to MCAST. Participants appeared competent and confident about supporting decision-making and assessing capacity, but recognised the complexity of this area of practice, and identified a need for further support. They reported a range of challenges, including accessing support from speech and language therapists for residents with communication needs. They responded positively to the toolkit and were keen to use it in practice. This study suggests that care home staff

Acalculia, an acquired disability following a brain injury, involves difficulty processing numerical information and/or calculations. Acalculia is not routinely screened for, and as a result there is a lack of understanding about the nature and prevalence and the impact of the condition. This qualitative study was initiated by stroke survivors with a strong interest in acalculia. Sixteen stroke/brain injury survivors with acalculia and seven carers were interviewed using semi-structured online interviews. Participants ranged in age, gender, time post-onset, country of residence and numeracy level prior to brain injury. Data were analysed using thematic analysis. Three main themes were identified: Awareness and Diagnosis; Emotional and Practical Impact (independence); Support, Coping Strategies and Self-training. Participants and carers repeatedly referred to the lack of awareness and treatment for acalculia and the impact acalculia has had on their lives and independence. Practical impacts included managing money, making appointments, using timetables, organizing social activities and employment, and managing medication. Our results highlight the urgent need to develop suitable assessments and interventions for acalculia and the scope for this to be Patient, Carer and Public involvement (PCPI)-led. The data also reveal useful strategies and suggestions regarding effective timing, targets and approaches for intervention.

Background: Mental capacity legislation in the United Kingdom is designed to safeguard the rights of people who may need support to, or may be unable to, make autonomous decisions. Very limited evidence has been published about the impact of the COVID-19 pandemic on the application of mental capacity legislation and, to our knowledge, none on the ability of speech and language therapists (SLTs) to support people with communication disabilities to engage in decision-making. Aim: To describe how UK SLTs supported people with communication disabilities to make decisions and participate in mental capacity assessments, best interests decision-making and advance care planning during the COVID-19 pandemic. Methods: This descriptive, cross-sectional study used an online survey to collect quantitative and qualitative data about SLTs’ practice experiences between August and November 2020. SLTs working with a range of adult clinical populations in different care settings were sampled purposively from all UK jurisdictions. Participants were recruited through professional networks and social media. Quantitative data were summarised using descriptive statistics. Qualitative data were analysed thematically. Results: Data were collected from 107 SLTs working in a range of settings across all four UK nations. The sample included SLTs working with people with neurological conditions, learning disabilities, mental health conditions and acute confusion. The need for SLT support appeared to increase during the pandemic. Most respondents were still able to offer support, however the amount and nature of support varied. Quality of support was impacted by adjustments associated with social distancing and infection control restrictions. Personal Protective Equipment was identified as a barrier to communication. Indirect working methods (e.g., telehealth) were inaccessible to some people with communication disabilities. Most respondents felt confident that legal requirements were upheld, but

In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a UK research project. Semi-structured individual and focus group interviews explored participants’ experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from: i) the interdisciplinary project team; ii) academics engaged in discrete project activities; iii) individuals providing organizational and operational project support; iv) the project’s two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: i) the challenge of defining the co-researcher role; ii) power relations in PI; iii) resources used to enable PI; iv) perceived benefits of PI; v) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.

Background This project [Identifying Appropriate Symbol Communication (I-ASC)] explored UK decision-making practices related to communication aid recommendations for children and young people who are non-speaking. Research evidence related to communication aid decision-making is limited. The research aims were to increase understanding of influencers on the decision-making process in recommending electronic communication aids, and to develop guidance tools to support decision-making. An additional, post hoc aim was to evaluate the public involvement contribution to the I-ASC project. The research focused on the identification of attributes and characteristics that professionals, family members and those who use communication aids considered important in the recommendation process. Findings informed the development of guidance resources. The evaluation of public involvement focused on what could be learned from a nationally funded project with involvement from public contributors typically regarded as hard to include. Methodology For the clinical decision-making component, the methodological investigation adopted a three-tier approach with three systematic reviews, a qualitative exploration of stakeholder perspectives through focus groups and interviews, and a quantitative investigation surveying professionals’ perspectives. The public involvement evaluation adopted a mixed-methods approach. A total of 354 participants contributed to the decision-making data set, including professionals, family members, and children, young people and adults who use communication aids; 22 participants contributed to the public involvement evaluation. The literature review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thematic analysis and framework approach supported the analysis of qualitative data. Two stated preference surveys, a best–worst scaling and a discrete choice experiment, allowed the relative importance of fac

Introduction: Acalculia is an acquired disability following brain-injury (hence forth, including stroke) (Ardila & Rosselli, 2002), which involves difficulty processing numerical information (e.g. ‘phone numbers) or problems with calculations and understanding quantities (money, time). While difficulties may result from damage to quantity-processing units in the parietal region, or executive frontal regions, common difficulties are closely related to aphasic symptoms - for example, difficulties articulating numbers, understanding spoken number words, or reading digits or number words. Acalculia is not routinely screened for as part of standard brain-injury assessment, but studies suggest a prevalence of between 35%-60%. Aims: To understand the impact of acalculia on adults with acquired brain-injury, and to explore professional support available for patients with acalculia. Methods: We explored the impact of acalculia on the lives of 16 brain-injury survivors (7 males) with acalculia and 7 carers (4 males), using semi-structured online interviews (mean length of interview = 56min). Interviews investigated participants’ experiences of living with acalculia and the type and quality of professional support they received post brain-injury. Fifteen participants with acalculia also reported aphasic symptoms. Participants ranged in age (mean = 58 years, SD=12.95), time post onset (mean =7.39 years; SD=6.52), lesion localisation, country of residence, severity of aphasic symptoms, and numeracy level prior to brain injury. Data were analysed using thematic analysis. Results: Three main themes were identified: Awareness and Diagnosis, Emotional and Physical Impact, and Coping Strategies and Independence. Participants emphasised that concerns about language and mobility took precedence in the period immediately post brain-injury, and they only became aware of their specific difficulties with numbers later in their recovery. Both participants and carers repeatedly referred to t

Introduction: Acalculia is an acquired disability following stroke or brain injury, which involves difficulty processing numerical information (e.g. phone numbers, measurements) or problems with calculations and understanding quantities. Acalculia is not routinely screened for as part of standard post-stroke assessment. As a result, there is a lack of understanding of the nature and prevalence of poststroke acalculia, and the impact it has on stroke survivors. This qualitative study aimed to explore stroke survivors’ experiences of acalculia. Stroke survivors with a strong interest in acalculia and its rehabilitation initiated the study and contributed to its design. Methods: We explored the impact of acalculia on the lives of 16 stroke/brain injury survivors with acalculia and 7 carers using semi-structured online interviews. Participants ranged in age, gender, time post onset, lesion localisation, country of residence and numeracy level prior to brain injury. Data were analysed using thematic analysis. Results: Three main themes were identified: Awareness and Diagnosis, Emotional and Physical Impact, and Coping Strategies and Independence. Participants and carers repeatedly referred to the lack of awareness and treatment for acalculia and the devastating impact acalculia has had on their lives and independence. Practical impacts included managing money, making appointments, using timetables, organising social activities and employment, and managing medication. Conclusions: Our results highlight the urgent need to develop suitable assessments and interventions for acalculia and the scope for this to be PCPI-led. The data also reveal useful strategies and suggestions regarding effective timing and approaches for intervention.

Background This project [Identifying Appropriate Symbol Communication (I-ASC)] explored UK decision-making practices related to communication aid recommendations for children and young people who are non-speaking. Research evidence related to communication aid decision-making is limited. The research aims were to increase understanding of influencers on the decision-making process in recommending electronic communication aids, and to develop guidance tools to support decision-making. An additional, post hoc aim was to evaluate the public involvement contribution to the I-ASC project. The research focused on the identification of attributes and characteristics that professionals, family members and those who use communication aids considered important in the recommendation process. Findings informed the development of guidance resources. The evaluation of public involvement focused on what could be learned from a nationally funded project with involvement from public contributors typically regarded as hard to include. Methodology For the clinical decision-making component, the methodological investigation adopted a three-tier approach with three systematic reviews, a qualitative exploration of stakeholder perspectives through focus groups and interviews, and a quantitative investigation surveying professionals’ perspectives. The public involvement evaluation adopted a mixed-methods approach. A total of 354 participants contributed to the decision-making data set, including professionals, family members, and children, young people and adults who use communication aids; 22 participants contributed to the public involvement evaluation. The literature review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thematic analysis and framework approach supported the analysis of qualitative data. Two stated preference surveys, a best–worst scaling and a discrete choice experiment, allowed the relative importance of fac

Purpose: To review evidence describing how health and social care professionals in England and Wales assess mental capacity, in order to identify ways to improve practice. Methods: A systematised literature review was completed. Electronic databases of published medical, health and social care research and gray literature were searched. Journal articles and research reports published between 2007 and 2018 were included if they met predefined eligibility criteria. Evidence from included studies was synthesized using thematic analysis. Results: 20 studies of variable methodological quality were included. The studies described assessments carried out by a range of multidisciplinary professionals working with different groups of service users in diverse care contexts. Four main themes were identified: preparation for assessment; capacity assessment processes; supported decision-making; interventions to facilitate or improve practice. There was a lack of detailed information describing how professionals provided information to service users and tested their decision-making abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesized evidence about mental capacity assessment methods and quality in England and Wales and analyzed it to suggest ways in which practice might be improved.

Purpose: To review evidence describing how health and social care professionals in England and Wales assess mental capacity, in order to identify ways to improve practice. Methods: A systematised literature review was completed. Electronic databases of published medical, health and social care research and gray literature were searched. Journal articles and research reports published between 2007 and 2018 were included if they met predefined eligibility criteria. Evidence from included studies was synthesized using thematic analysis. Results: 20 studies of variable methodological quality were included. The studies described assessments carried out by a range of multidisciplinary professionals working with different groups of service users in diverse care contexts. Four main themes were identified: preparation for assessment; capacity assessment processes; supported decision-making; interventions to facilitate or improve practice. There was a lack of detailed information describing how professionals provided information to service users and tested their decision-making abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesized evidence about mental capacity assessment methods and quality in England and Wales and analyzed it to suggest ways in which practice might be improved.

This study evaluated the Consent Support Tool (CST), a procedure developed to identify the optimum format in which to present research information to people with different severities of aphasia, in order to support their understanding during the informed consent process. Participants were a convenience sample of 13 people with aphasia who had mixed comprehension ability. The CST was used to profile each participant's language ability and identify an information format that should maximize her/his understanding. Next, participants were shown information presented in three formats: standard text and two ‘aphasia-friendly’ versions providing different levels of support. Participants’ understanding of the information was measured for each format. The format recommended by the CST was compared with the format observed to maximize understanding for each participant. The CST accurately predicted the optimum format for 11/13 participants and differentiated people who could understand fully with support from those who could not in 12/13 cases. All participants interviewed (10/10) found the adapted formats helpful and 9/10 preferred them to the standard version. These findings suggest that the CST could usefully support researchers to determine whether a person with aphasia is likely to be able to provide informed consent, and which information format will maximize that individual's understanding. The CST and different information formats are available as Supplementary Appendices to be found online at http://www.informahealthcare.com/doi/abs/10.3109/17549507.2013.795999.

Background: The process of obtaining informed consent from people with communication difficulties is challenging. An online survey was conducted to explore the experiences of stroke research staff in seeking consent from this population. Objectives: To identify how stroke research staff seek consent from people with communication difficulties, potential barriers to effective practice, and ways to improve practice. Methods: All research staff working for the National Institute for Health Research Stroke Research Network in England were invited to complete an online questionnaire. Data were collected anonymously between March and June 2013. Quantitative data were analyzed using descriptive statistics, and qualitative data were coded using thematic analysis. Results: Seventy-five research staff responded, corresponding to a response rate of 10%. There were 97% who had sought consent from people with communication difficulties and 52% did this regularly; 65% had received training in consenting this population. Most staff were aware of appropriate methods for supporting communication needs, but only 18% regularly used accessible information and 35% regularly used augmentative communication techniques. Lack of specific training and lack of access to ethically approved materials were suggested barriers to using these methods. Respondents indicated that people with impaired communication may be excluded from the consent process because they are not eligible for inclusion in studies or because assent is obtained from third parties. Conclusions: For research staff to work more effectively with this population, study protocols need to be more inclusive of people with communication difficulties, and staff need better access to ethically approved, accessible communication resources and appropriate training.