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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 .

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.

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 grey 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 synthesised 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 decisionmaking abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesised evidence about mental capacity assessment methods and quality in England and Wales and analysed it to suggest ways in which practice might be improved.

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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.

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 factors in decision-making to be determined. Analysis was grounded in random utility theory. Public involvement Two public involvement co-researchers, an adult using a symbol communication aid and a parent of a communication aid user, were core members of the research team. The I-ASC public involvement resulted in an additional award to evaluate the impact of public involvement across the project. Results Factors influencing decision-making are not always under the control of the decision-makers, for example professional knowledge, referral criteria and service structure. Findings suggest that real clinical decisions contrast with hypothetical decisions. Survey responses indicated that children’s physical characteristics are less important than their language, communication and learning abilities; however, during real-time decision-making, the opposite appeared to be true, with access needs featuring most prominently. In contrast to professionals’ decisions, users and family members prioritise differing aesthetic attributes of communication aids. Time allocated to system learning remains underspecified. The research informed the development of decision-making guidance tools (https://iasc.mmu.ac.uk/; accessed 8 June 2020). A public involvement evaluation suggests that successful public involvement of individuals with disabilities requires significant resources that include staff time, training and personal support (https://iasc.mmu.ac.uk/publicinvolvement; accessed 8 June 2020). Future work Further research is needed in the areas of language assessment, communication aid attributes, types of decision-making episodes and service user perspectives. These data highlight the need for mechanisms that enable public involvement co-researchers to be paid for their contributions to research bid preparation. Limitations Individuals who benefit from communication aids are a heterogeneous group. We cannot guarantee that this study has captured all relevant components of decision-making. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 45. See the NIHR Journals Library website for further project information.

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 172