Dysphagia management in community/home settings: A scoping review investigating practices in Africa.

PURPOSE: Little is known about how people living with dysphagia in rural, socioeconomically 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 researchers. 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.

Person-centered care for people with aphasia: tools for shared decision-making.

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.

Complex and alternate consent pathways in clinical trials: methodological and ethical challenges encountered by underserved groups and a call to action.

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 proposals to address identified research gaps. CONCLUSION: Collaboration across disciplines, sectors, organisations, and countries is essential if the ethical and methodological challenges surrounding trials involving complex and alternate consent pathways are to be addressed. Explicating these challenges, sharing resources, and identifying gaps for future research is an essential first step. We hope that doing so will serve as a call to action for others seeking ways to address the current consent-based exclusion of underserved populations from trials.

A qualitative study into the experience of living with acalculia after stroke and other forms of acquired brain injury.

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.

Evaluation of the MCAST, a multidisciplinary toolkit to improve mental capacity assessment.

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 REHABILITATIONMental 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.

Supported decision-making and mental capacity assessment in care homes: A qualitative study.

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 would benefit from, and welcome, support to develop their practice. Furthermore, MCAST appears usable in this context and formal feasibility testing is justified.

Mental capacity legislation and communication disability: A cross-sectional survey exploring the impact of the COVID-19 pandemic on the provision of specialist decision-making support by UK SLTs.

BACKGROUND: Mental capacity legislation in the UK is designed to safeguard the rights of people who may need support, 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. AIMS: 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 & PROCEDURES: 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 summarized using descriptive statistics. Qualitative data were analysed thematically. OUTCOMES & 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 (PPE) 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 suggested this group was less able to engage in decision-making and had reduced access to support to manage their own health conditions. CONCLUSIONS & IMPLICATIONS: Some SLT services were limited in their ability to meet the decision-making support needs of people with communication disabilities during the COVID-19 pandemic due to structural and systemic barriers. This suggests that existing inequities in the provision of care for people with communication disabilities in the UK were amplified during the pandemic. WHAT THIS PAPER ADDS: What is already known on the subject People with communication disabilities may require support from healthcare professionals, including SLTs, to make decisions and communicate their wishes and preferences about their care, in line with mental capacity legislation. There is a lack of published evidence relating to how changes in staff deployment and resource during the COVID-19 pandemic may have impacted on the ability of SLTs to provide this support. What this paper adds to existing knowledge This study provides novel evidence about the ways in which UK SLTs supported people with communication disabilities to engage in mental capacity assessments, best interests decision-making and advance care planning during the COVID-19 pandemic. In some cases, the amount and quality of decision-making support available was affected negatively due to changes in healthcare delivery and resource management and SLT working practices. What are the potential or actual clinical implications of this work? This study suggests that some people with communication disabilities experienced greater barriers to receiving professional support to maximize their autonomy and manage their health conditions during the COVID-19 pandemic. Speech and language therapy services and healthcare commissioners should consider how best to ensure equitable service delivery to this population in resource-limited situations.

Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.

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 U.K. 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 (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project's two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) 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.

Giving voice to people with communication disabilities during mental capacity assessments.

BACKGROUND: Healthcare professionals without specialist training in communication disorders may not know how to identify and support patients with communication disabilities during mental capacity assessments. To meet this need, a novel communication screening tool was developed and tested as part of a mental capacity assessment support toolkit. AIMS: To provide an initial evaluation of the communication screening tool's usability, interrater reliability and criterion validity. METHODS & PROCEDURES: A prototype communication screening tool was developed iteratively using co-production and user-centred design principles. A mixed-methods case series design was used to explore how multidisciplinary healthcare professionals used the tool to test patients in acute hospital and intermediate care settings. Usability data were collected in an electronic survey and from a documentary analysis. Screening test outcomes obtained by pairs of professionals were compared to measure the tool's interrater reliability. Outcomes obtained by professionals were compared with the outcomes of a speech and language therapist's communication assessment to measure criterion validity. Quantitative data were analysed using frequency counts and inferential statistics. Qualitative data were analysed using framework analysis. OUTCOMES & RESULTS: A total of 21 professionals, including physicians, nurses, occupational therapists, physiotherapists, and speech and language therapists, and 17 patients with diagnoses of stroke or cognitive impairment took part. Professionals reported they found the tool easy to use, useful and that its use increased their understanding of communication support methods and the speech and language therapist role in relation to mental capacity assessment. However, not all used it consistently or accurately. Professionals reported they chose not to use the tool when they perceived patients' communication to be intact. Four of eight patients with a diagnosis of dementia or memory impairment, who professionals elected not to screen, were found to have significant communication needs. Screening outcome data for nine patients suggest the tool's interrater reliability is currently moderate, whilst its criterion validity is poor. CONCLUSIONS & IMPLICATIONS: This study highlights that non-speech and language therapist health professionals have difficulty identifying and screening for communication difficulties. This confirms existing evidence that people with communication disabilities may not receive the decision-making support they require during mental capacity assessments when speech and language therapists are not involved. Greater understanding of health professionals' thought processes regarding communication is required to further develop this unique communication screening tool so that it can effectively enable healthcare professionals to identify and use communicative adaptations to support decision-making. What this paper adds What is already known on this subject Limited previous research suggests that assessing the mental capacity of people with communication disabilities is complex. Practice needs to be improved to ensure this group is adequately supported to make decisions, in line with legal requirements. What this paper adds to existing knowledge This paper describes the development and testing of a novel communication screening tool for use by healthcare professionals preparing to undertake mental capacity assessments. It increases our understanding of how healthcare professionals without specialist training understand communication disability and the role of the speech and language therapist in relation to mental capacity assessment. What are the potential or actual clinical implications of this work? Healthcare professionals without specialist training require support to understand and respond to the needs of people with communication disabilities during mental capacity assessments. With further development and testing, in response to initial evaluation, this novel communication screening tool may be able to provide this support.

How do health and social care professionals in England and Wales assess mental capacity? A literature review.

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.Implications for rehabilitationMental capacity assessment practice in England and Wales varies and is not always consistent with legal requirements, risking inconsistent and inaccurate judgements about capacity and exposure to legal action.Interventions have been developed to help professionals to engage in supported decision-making, and improve their mental capacity assessments and documentation in line with legal standards.These interventions include training and practical resources, such as assessment flowcharts, checklists and documentation aids. Such interventions would benefit from robust evaluation before they are implemented more widely.

An exploration of mental capacity assessment within acute hospital and intermediate care settings in England: a focus group study.

PURPOSE: To explore approaches to the assessment of mental capacity within acute hospital and intermediate care settings in England. METHODS: Two focus group interviews were conducted with multidisciplinary staff (n = 13) within a large hospital trust. Data were analysed using a Framework approach. RESULTS: Three main themes were identified: (i) the assessment process; (ii) staff experience of assessment; (iii) assessing capacity for patients with communication difficulties. Staff identified the main patient groups, patient decisions and professionals involved in capacity assessment. They described using both formal and informal approaches to assess capacity and specific methods to identify and support the needs of patients with communication difficulties during the assessment process. Most staff reported finding capacity assessment challenging, due to time pressures, a perceived lack of knowledge or skills and encountering practice that is not consistent with legal requirements. Staff stated a need for initiatives to facilitate and improve practice. CONCLUSIONS: These findings provide confirmatory evidence that mental capacity assessment is complex and challenging and that staff would benefit from additional support and resources to aid their practice. It provides new evidence about the methods used by staff to assess capacity, particularly for patients with communication difficulties. Implications for Rehabilitation This study contributes to our understanding of how staff assess capacity in hospital and intermediate care settings. Mental capacity assessment is a complex activity and many staff reported finding it challenging. Patients with communication difficulties need additional support during capacity assessments but may not always receive this. Current practice needs to be improved and staff need support and resources to achieve this.

Stroke Research Staff's Experiences of Seeking Consent from People with Communication Difficulties: Results of a National Online Survey.

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.

Initial evaluation of the Consent Support Tool: a structured procedure to facilitate the inclusion and engagement of people with aphasia in the informed consent process.

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 .