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.
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.
20 October 2023 in Frontiers in Rehabilitation Sciences
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.
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.
16 December 2020 in International Journal of Language & Communication Disorders
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.
12 August 2022 in Neuropsychological Rehabilitation
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.