Increasing opportunities for functional communication learning in post-stroke aphasia: an exploratory study of early supported discharge rehabilitation

Aphasia is a communication disorder affecting all language modalities to varying degrees of severity, and impacting on the person’s overall quality of life, place in society and interpersonal relationships. Early post-stroke, healthcare professionals (HCPs) are often the main communication partners of people with aphasia (PWA), yet there are apparently few opportunities for communication practice in the course of rehabilitation. Practice is key to (re)learning, with other processes such as intensity, context, and the therapeutic alliance also shown to impact on outcomes of (re)learning. Currently, PWA in the UK receive stroke rehabilitation in a variety of care settings. Rehabilitation in the home through Early Supported Discharge (ESD) is the focus of this study. A systematic review using adapted Cochrane methodology examined how learning processes are reported in speech and language therapies for post-stroke aphasia with a functional outcome. The 34 included studies were reported with variable degrees of adherence to the Template for Intervention Description and Replication (TIDieR) checklist. More specific and comprehensive articulation of the learning processes entailed in rehabilitation and (re)learning is needed in such aphasia therapies. An exploratory study was conducted to understand how conditions for (re)learning are produced during routine rehabilitation for PWA in the ESD context. Observational and interview methods were used to collect data on perceptions and practices of routine rehabilitation with 10 PWA and 22 HCPs (observation study) and 9 PWA and 8 HCPs (interview study). Interview data were analysed using thematic analysis; observational data explored the structure and ecology of the rehabilitation session and how the interview themes were enacted in interactions. Interview and observation data were analysed and combined within an Activity-based Communication Analysis (ACA) approach. Opportunities to enhance (re)learning of functional communication during routine rehabilitation were identified, but not consistently realised. The home environment, rapport, emotions, the structure of sessions and HCP training all influence PWA’s (re)learning. These findings have clinical implications and warrant further research

Enhancing functional communication recovery of people with aphasia after a stroke: realising opportunities for enriching the communicative environment during routine rehabilitation

Background: Studies in human and animal models indicate that recovery from stroke is enhanced by exposure to enriched environments and practice. People with aphasia (PWA) after stroke need to practice language in everyday situations for optimum recovery of communication function. Objective: To establish whether opportunities to provide cost-neutral enriched environments for functional communication practice can be realised during routine stroke rehabilitation. Methods: Video was used to record routine interactions between healthcare professionals (HCPs) and people with aphasia in in-patient and Early Supported Discharge stroke rehabilitation. We conducted semi-structured interviews with staff and patients. Datasets produced: 54 video-recordings of therapy and nursing interactions in diverse rehabilitation activities; interviews with 19 HCPs; and 9 PWA. Video and interview data were analysed using Activity-based Communication Analysis and inductive thematic analysis respectively. Costs were derived from staff reports of changes to usual time taken for activities when communicating with PWA. Results: Opportunities to provide communicatively enriched environments arose in both settings between PWA and staff from all professional groups. When realised these occasions increased experiential demands cognitively and socially on PWA and provided them with functional communication practice. However, opportunities were not consistently realised. Interviews suggested that time constraints, a lack of HCP training and low confidence in working with PWA may have contributed to these effects. There were small increases in staff time demands resulting from these interactions. Conclusion : Opportunities to produce stimulating environments for functional communication practice can be realised during routine rehabilitation, but there are staff time cost and training implications

Inclusion under the Mental Capacity Act (2005):A review of research policy guidance and governance structures in England and Wales

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.</p

Lost Voices in Research: Exposing the Gaps in the Mental Capacity Act 2005

Despite laudable intentions, since its inception, the Mental Capacity Act 2005 of England and Wales (MCA) has proved to be a controversial piece of legislation. The majority of legal scholarship has concentrated on the problems created by the Act in relation to the treatment of incapacitated patients. However, there is an additional and somewhat unexplored dimension to the MCA, that of research. We argue here that the research provisions of the MCA are poorly drafted and do not provide an appropriate balance between protection and empowerment. We also assert that contrasting obligations and expectations are placed on different parties in the approval process, which creates a blurred sense of responsibility and a potential chilling effect

Inclusion under the Mental Capacity Act (2005) : a review of research policy guidance and governance structures in England and Wales

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognised, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings

A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales:Recruitment of adults with capacity and communication difficulties

BACKGROUND: The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019.METHODS AND FINDINGS: We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652. 28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity.CONCLUSIONS: We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion.</p

Inclusion under the Mental Capacity Act (2005):A review of research policy guidance and governance structures in England and Wales

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.</p

Screening depression and suicidality in post stroke aphasia: A theory of planned behaviour study

Background: Clinical guidelines recommend screening for post-stroke depression, which is particularly important for people with post-stroke aphasia, due to increased risk of depression and suicidality. The Theory of Planned Behaviour (TPB) suggests that behavioural intentions are influenced by three factors: attitudes, normative beliefs, and perceived behavioural control. It has been used to investigate staff intentions to perform post-stroke screening, but little is known about staff intentions to screen people with aphasia for depression or suicidality. Aims We examined how UK stroke professionals describe screening for depression and suicidality with people with aphasia and whether the TPB predicts intent to screen depression with this population. Methods & Procedures: We conducted a cross-sectional online survey and used multiple regression to test whether attitudes, normative beliefs, and perceived behavioural control predicted intent to screen people with aphasia for depression and suicidality. To assess response stability over time we asked respondents to repeat the survey over a fortnight later. Results: One hundred and eighteen UK stroke professionals completed the survey between May and September 2020. Intent to screen people with aphasia for depression was high (M = 71.6%, SD = 34.7) but much lower for suicidality (M = 42.4%, SD = 39). Approximately half the variance in intent to screen for depression was predicted by the TPB, R2 = .48, F (3,101) = 30.60, p < .001, with normative beliefs identified as a significant predictor, β = .62, p < .001. Responses were stable over time for those who repeated the survey (N = 13). Conclusions: More support is needed to help stroke professionals screen for depression and suicidality in people with post-stroke aphasia. Screening rates may be improved by communicating clear expectations that staff should screen all stroke survivors for depression and suicidality, developing aphasia-accessible screening tools and providing training to all stroke professionals

A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales: Recruitment of adults with capacity and communication difficulties

Background: The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019. Methods and findings: We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652. 28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity. Conclusions: We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion