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1.
Clin Rehabil ; 38(7): 965-978, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38418389

RESUMO

OBJECTIVE: To describe the process of developing a job retention vocational rehabilitation intervention for people with multiple sclerosis. DESIGN: We used the person-based approach, to develop interventions through an iterative process incorporating stakeholders' views, resulting in an intervention that is likely to be more acceptable, contextually relevant, and implementable for end-users. Phase 1 combined the results of a systematic review and interview study to develop the guiding principles and intervention logic model. Phase 2 involved conceptual testing and refining the intervention with stakeholder feedback. We present the final intervention following the template for intervention description and replication. PARTICIPANTS: We recruited 20 participants for Phase 1 (10 people with multiple sclerosis, four employers, six healthcare professionals), and 10 stakeholders (three people with multiple sclerosis, seven healthcare professionals) for Phase 2 to contribute to the intervention refinement process. RESULTS: Stakeholders described the need for an individually tailored intervention to support people with multiple sclerosis to manage symptoms and workplace relationships. A stepped-care approach and remote support were deemed essential. The resulting intervention involves an initial assessment of employment needs, vocational goal setting, up to 10 h of tailored support (e.g., reasonable adjustments, employer engagement, legal rights), and a final review to discuss future steps. People with multiple sclerosis can include their employer for advice to optimise the management of the employee with multiple sclerosis at work. CONCLUSION: The person-based approach provided a rigorous framework to systematically understand the vocational needs of people with multiple sclerosis and develop a vocational rehabilitation intervention.


Assuntos
Esclerose Múltipla , Reabilitação Vocacional , Humanos , Reabilitação Vocacional/métodos , Esclerose Múltipla/reabilitação , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Emprego , Desenvolvimento de Programas , Segurança do Emprego
2.
Brain Inj ; 38(4): 316-329, 2024 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-38318794

RESUMO

INTRODUCTION: Over 100 million people worldwide live with disabilities resulting from an acquired brain injury (ABI). ABI survivors experience cognitive and physical problems and require support to resume an active life. They can benefit from support from someone who has been through the same issues (i.e. peer mentor). This review investigated the effectiveness of peer mentoring for ABI survivors. METHOD: Eleven databases, two trial registers, and PROSPERO were searched for published studies. Two reviewers independently screened all titles, abstracts, and full texts, extracted data, and assessed quality. The PRISMA 2020 guidelines were followed to improve transparency in the reporting of the review. RESULTS: The search returned 4,094 results; 2,557 records remained after the removal of duplicates and 2,419 were excluded based on titles and abstracts. Of the remaining 138, 12 studies met the inclusion criteria. Five were conducted in the United States, three in Canada, three in the UK, and one in New Zealand. Meta-analysis was inappropriate due to the heterogeneity of study designs. Therefore, a narrative synthesis of the data was undertaken. CONCLUSION: Although peer mentoring has the potential to positively influence activity and participation among ABI survivors, further research is needed to understand the extent of the benefits.


Assuntos
Lesões Encefálicas , Tutoria , Humanos , Mentores , Grupo Associado , Sobreviventes
3.
Work ; 2024 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-38217562

RESUMO

BACKGROUND: People with acquired brain injuries (ABIs) often experience residual limitations and co-morbid mental illnesses that restrict work participation. Employers are key in enabling successful return-to-work and job retention. OBJECTIVE: This review aimed to explore employers' perspectives of factors influencing their support for people with ABIs and/or mental illness to return to- and stay in work. Review questions focused on barriers and facilitators to their support, and contextual characteristics present at the time. METHODS: Five databases were searched from October 2010 until November 2023 for relevant qualitative studies published in English. Findings from included studies (N = 25) were synthesised using thematic synthesis. RESULTS: Included studies focused on employees with ABI or mental illness, rather than dually diagnosed ABI and mental illness. Employers' support was influenced by their awareness/knowledge of- and attitudes towards the employee's condition/illness; their skills and experience in supportive strategies; factors related to provision of work accommodations; and stakeholder influence. Similarities and differences in influential factors were observed across the ABI and mental illness literature. Contextual characteristics related to organisational characteristics, cultural taboo, and involvement of certain stakeholders. CONCLUSIONS: ABI survivors (with and without co-morbid mental illness) and their employers may benefit from specialist support and resources to guide them through the return-to-work process. Further research is needed to investigate employers' knowledge of ABI and mental illness and supportive strategies. Exploration of the influence of other stakeholders, socio-demographic characteristics, and contextual factors on employers' return-to-work and retention support for ABI survivors with co-morbid mental illness is warranted.

4.
Open Med (Wars) ; 18(1): 20230814, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37786777

RESUMO

Cognitive impairment in multiple sclerosis (MS) can adversely impact participation in employment, activities of daily living, and wider society. It affects 40-70% of people living with MS (pwMS). There are few effective treatments for cognitive impairment in people with MS. Neuromodulation with intermittent theta-burst stimulation (iTBS) has potential for treating cognitive impairment in pwMS. This single-centre mixed-methods feasibility randomised controlled trial (NCT04931953) will assess feasibility, acceptability, and tolerability of procedures used for applying iTBS for improving cognitive performance in pwMS. Participants will be randomised into three intervention groups with varying lengths of iTBS treatment (from 1 to 4 weeks) and a sham-control group. Quantitative data will be collected at three time points (baseline, end of intervention, and 8-week follow-up). End of the intervention semi-structured interviews will explore the views and experiences of the participants receiving the intervention, analysed using framework analysis. Quantitative and qualitative data will be synthesised to explore the impact of the iTBS intervention. Ethical approval has been received from the Health Research Authority (21/LO/0506) and recruitment started in June 2022. The results will inform the design of an RCT of the efficacy of iTBS as a therapeutic intervention for cognitive impairment in pwMS.

5.
Cancer Med ; 12(13): 14663-14673, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37264737

RESUMO

BACKGROUND/OBJECTIVES: Ataxia telangiectasia (A-T) is a multiorgan disorder with increased vulnerability to cancer. Despite this increased cancer risk, there are no widely accepted guidelines for cancer surveillance in people affected by A-T. We aimed to understand the current international practice regarding cancer surveillance in A-T and agreed-upon approaches to develop cancer surveillance in A-T. DESIGN/METHODS: We used a consensus development method, the e-Delphi technique, comprising three rounds. Round 1 consisted of a Delphi questionnaire and a survey that collected the details of respondents' professional background, experience, and current practice of cancer surveillance in A-T. Rounds 2 and 3 were designed based on previous rounds and modified according to the comments made by the panellists. The pre-specified consensus threshold was ≥75% agreement. RESULTS: Thirty-five expert panellists from 13 countries completed the study. The survey indicated that the current practice of cancer surveillance varies widely between experts and centres'. Consensus was reached that evidence-based guidelines are needed for cancer surveillance in people with A-T, with separate recommendations for adults and children. Statements relating to the tests that should be included, the age for starting and stopping cancer surveillance and the optimal surveillance interval were also agreed upon, although in some areas, the consensus was that further research is needed. CONCLUSION: The international expert consensus statement confirms the need for evidence-based cancer surveillance guidelines in A-T, highlights key features that the guidelines should include, and identifies areas of uncertainty in the expert community. This elucidates current knowledge gaps and will inform the design of future clinical trials.


Assuntos
Ataxia Telangiectasia , Neoplasias , Adulto , Criança , Humanos , Ataxia Telangiectasia/complicações , Ataxia Telangiectasia/diagnóstico , Consenso , Técnica Delphi , Inquéritos e Questionários
6.
Disabil Rehabil ; : 1-12, 2023 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-36850038

RESUMO

PURPOSE: To ascertain the feasibility and acceptability of delivering a job retention vocational rehabilitation intervention [MSVR] for people with multiple sclerosis (pwMS) in a community setting. Secondary objectives included determining whether MSVR was associated with changes in quality of life, fatigue, mood, cognition, workplace accommodations, work instability, work self-efficacy, and goal attainment. METHODS: Single-centre mixed-methods feasibility case series. RESULTS: 15 pwMS and three employers received 8.36 (SD = 4.48) and 1.94 (SD = 0.38) hours of MSVR respectively over three months. The intervention predominantly addressed managing cognition, fatigue, and negotiating reasonable accommodations. Four healthcare professionals were recruited to clarify clinical information.The intervention was feasible to deliver, and there was a significant positive impact on goal attainment immediately following MSVR (t(14) = 7.44, p = .0001, d = 1.9), and at months 3 (t(13) = 4.81, p = .0001, d = 1.28), 6 (t(11) = 4.45, p = .001, d = 1.28), and 12 (t(9) = 5.15, p = .001, d = -2.56). There was no impact on quality of life, fatigue, mood, cognition, workplace accommodations, work instability, and work self-efficacy. In post-intervention interviews, participants reported that MSVR was acceptable. Four themes were derived regarding the context, employer engagement, empowerment through knowledge, and intervention components and attributes. CONCLUSION: It was feasible and acceptable to deliver MSVR. Participants better understood their MS, became more confident managing problems at work and attained their work-related goals.IMPLICATIONS FOR REHABILITATIONPeople with multiple sclerosis (MS) experience problems at work because of the interaction between symptoms and environmental factors (e.g., co-workers' attitudes).Vocational rehabilitation for people with MS and their employers should be tailored in terms of content and intensity.People with MS can be empowered at work by learning about MS and how their symptoms fluctuate over time.Understanding legal responsibilities and examples of accommodations at work can be beneficial for employers.

7.
Cortex ; 156: 71-85, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36183573

RESUMO

Semantic control allows us to focus semantic activation on currently relevant aspects of knowledge, even in the face of competition or when the required information is weakly encoded. Diverse cortical regions, including left prefrontal and posterior temporal cortex, are implicated in semantic control, however; the relative contribution of these regions is unclear. For the first time, we compared semantic aphasia (SA) patients with damage restricted to temporoparietal cortex (TPC; N = 8) to patients with infarcts encompassing prefrontal cortex (PF+; N = 22), to determine if prefrontal lesions are necessary for semantic control deficits. These SA groups were also compared with semantic dementia (SD; N = 10), characterised by degraded semantic representations. We asked whether TPC cases with semantic impairment show controlled retrieval deficits equivalent to PF+ cases or conceptual degradation similar to patients with SD. Independent of lesion location, the SA subgroups showed similarities, whereas SD patients showed a qualitatively distinct semantic impairment. Relative to SD, both TPC and PF+ SA subgroups: (1) showed few correlations in performance across tasks with differing control demands, but a strong relationship between tasks of similar difficulty; (2) exhibited attenuated effects of lexical frequency and concept familiarity, (3) showed evidence of poor semantic regulation in their verbal output - performance on picture naming was substantially improved when provided with a phonological cue, and (4) showed effects of control demands, such as retrieval difficulty, which were equivalent in severity across TPC and PF+ groups. These findings show that semantic impairment in SA is underpinned by damage to a distributed semantic control network, instantiated across anterior and posterior cortical areas.


Assuntos
Afasia , Semântica , Humanos , Testes Neuropsicológicos , Afasia/patologia , Lobo Temporal/patologia , Córtex Pré-Frontal/patologia
8.
Cortex ; 155: 333-346, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36087431

RESUMO

OBJECTIVE: Multi-assessment batteries are necessary for diagnosing and quantifying the multifaceted deficits observed post-stroke. Extensive batteries are thorough but impractically long for clinical settings or large-scale research studies. Clinically-targeted "shallow" batteries superficially cover a wide range of language skills relatively quickly but can struggle to identify mild deficits or quantify the impairment level. Our aim was to compare these batteries across a large group of chronic stroke aphasia and to test a novel data-driven reduced version of an extensive battery that maintained sensitivity to mild impairment, ability to grade deficits and the underlying component structure. METHODS: We tested 75 chronic left-sided stroke participants, spanning global to mild aphasia. The underlying structure of these three batteries was analysed using cross-validation and principal component analysis, in addition to univariate and multivariate lesion-symptom mapping. RESULTS: This revealed a four-factor solution for the extensive and data-reduced batteries, identifying phonology, semantic skills, fluency and executive function in contrast to a two-factor solution using the shallow battery (language severity and cognitive severity). Lesion symptom mapping using participants' factor scores identified convergent neural structures for phonology (superior temporal gyrus), semantics (inferior temporal gyrus), speech fluency (precentral gyrus) and executive function (lateral occipitotemporal cortex). The two shallow battery components converged with the phonology and executive function clusters. In addition, we show that multivariate models could predict the component scores using neural data, however not for every component. CONCLUSIONS: Overall, the data-driven battery appears to be an effective way to save time yet retain maintained sensitivity to mild impairment, ability to grade deficits and the underlying component structure observed in post-stroke aphasia.


Assuntos
Afasia , Acidente Vascular Cerebral , Encéfalo , Mapeamento Encefálico , Humanos , Imageamento por Ressonância Magnética , Testes Neuropsicológicos
9.
Work ; 72(1): 303-313, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35431210

RESUMO

BACKGROUND: Supporting people with multiple sclerosis (MS) at work can be challenging due to the unpredictable nature and myriad of disease-related symptoms, and issues related to the work environment. OBJECTIVE: To explore, amongst people with MS in employment, their experiences of and need for vocational rehabilitation (VR), and perceived barriers and facilitators to implementing VR. METHODS: We conducted 20 semi-structured interviews with people with MS, employers, and healthcare professionals. Interviews were audio-recorded, transcribed, and analysed using the framework method. RESULTS: We identified nine themes reflecting the main MS symptoms (e.g. cognition, fatigue), and environmental factors such as support provided at work (e.g. change of working hours) and workplace characteristics. Providing support tailored to the individual's needs and early intervention were seen as important attributes for the intervention. The barriers identified referred to lack of resources and confidentiality issues; however, having flexibility in the content and delivery of the intervention were seen as facilitators. CONCLUSION: The impact of environmental factors (e.g. attitudes towards disability) on employment difficulties is equal to or greater than disease-related factors. Environmental changes in the attitudes of co-workers and workplace flexibility can enable people with MS to remain in work for longer.


Assuntos
Pessoas com Deficiência , Esclerose Múltipla , Pessoas com Deficiência/reabilitação , Emprego , Humanos , Esclerose Múltipla/complicações , Reabilitação Vocacional , Local de Trabalho
10.
Sci Rep ; 11(1): 3168, 2021 02 04.
Artigo em Inglês | MEDLINE | ID: mdl-33542379

RESUMO

Aphasia affects at least one third of stroke survivors, and there is increasing awareness that more fundamental deficits in auditory processing might contribute to impaired language performance in such individuals. We performed a comprehensive battery of psychoacoustic tasks assessing the perception of tone pairs and sequences across the domains of pitch, rhythm and timbre in 17 individuals with post-stroke aphasia and 17 controls. At the level of individual differences we demonstrated a correlation between metrical pattern (beat) perception and speech output fluency with strong effect (Spearman's rho = 0.72). This dissociated from more basic auditory timing perception, which did not correlate with output fluency. This was also specific in terms of the language and cognitive measures, amongst which phonological, semantic and executive function did not correlate with beat detection. We interpret the data in terms of a requirement for the analysis of the metrical structure of sound to construct fluent output, with both being a function of higher-order "temporal scaffolding". The beat perception task herein allows measurement of timing analysis without any need to account for motor output deficit, and could be a potential clinical tool to examine this. This work suggests strategies to improve fluency after stroke by training in metrical pattern perception.


Assuntos
Afasia/fisiopatologia , Encéfalo/fisiopatologia , Idioma , Psicoacústica , Fala , Acidente Vascular Cerebral/fisiopatologia , Idoso , Afasia/diagnóstico por imagem , Afasia/etiologia , Percepção Auditiva , Encéfalo/diagnóstico por imagem , Estudos de Casos e Controles , Função Executiva , Feminino , Humanos , Individualidade , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Semântica , Percepção da Fala , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/diagnóstico por imagem
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