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1.
BMC Med Ethics ; 25(1): 65, 2024 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-38802779

RESUMO

BACKGROUND: Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources. METHODS: A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. RESULTS: 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. CONCLUSIONS: Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.


Assuntos
Demência , Consentimento Livre e Esclarecido , Competência Mental , Pesquisadores , Humanos , Demência/terapia , Estudos Transversais , País de Gales , Inquéritos e Questionários , Inglaterra , Masculino , Feminino , Seleção de Pacientes/ética , Pessoa de Meia-Idade , Adulto , Sujeitos da Pesquisa/psicologia
3.
Health Expect ; 27(1): e13992, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38376077

RESUMO

INTRODUCTION: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. METHODS: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. RESULTS: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. CONCLUSION: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. PATIENT OR PUBLIC CONTRIBUTION: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.


Assuntos
Demência , Minorias Sexuais e de Gênero , Feminino , Humanos , Pacientes , Grupos Minoritários , Participação do Paciente , Demência/diagnóstico , Demência/terapia
4.
Dementia (London) ; : 14713012241231916, 2024 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-38321765

RESUMO

Introduction and Background to Study: Published work on dementia research co-production focuses on developing health and social care interventions. Less is written about practicalities and experiences of co-producing dementia research funding applications. UK public contributors are typically from white middle class populations. Widening involvement is essential for co-produced research that meaningfully addresses health inequalities. We provide an example of a diverse lived experience group co-producing a dementia research funding application. An NIHR Dementia Career Development award funded PPIE work to develop a broad research idea. A culturally diverse lived experience group consisted of one person living with dementia, four carers and one former carer. Virtual group sessions drew on each person's unique experiences and expertise. Two co-leads collaborated closely with the researcher. Methods: We reflected on our experiences of diversity and inclusion within the group, based on a coproduced set of questions to guide reflection. Written records of reflections were captured and refined by the group. Results: We structured reflections into three overarching categories: Diversity and inclusion, Benefits to group members and Challenges. The group felt empowered, heard, and like equals in the process. Members valued diversity and mutual learning within the group. Involvement of co-leads was seen as democratic and inclusive. Some members felt Equality, Diversity and Inclusion (EDI) discussions were challenging. Discussion and Conclusions: We share valuable lessons learned in the process, including suggestions for facilitating EDI discussions, building in funding for time and travel to support relationship building, and ensuring PPIE remuneration processes are accessible and streamlined.

6.
Curationis ; 46(1): e1-e10, 2023 Oct 25.
Artigo em Inglês | MEDLINE | ID: mdl-37916664

RESUMO

BACKGROUND:  Sexual violence against women is a global phenomenon. This is a particular issue in South Africa, where it is estimated with evidence provided that up to half of all women will encounter gender-based and/or sexual violence from a partner during their lifetime. Therefore, evidence suggests that addressing the needs of women in South Africa is a priority. OBJECTIVE:  This qualitative review aimed to explore the experiences of women seeking care from first contact healthcare facilities in South Africa after sexual violence and during follow-up care. METHOD:  This systematic review was conducted using the PRISMA checklist for systematic reviews and in line with a published protocol (PROSPERO, CRD42019121580) and searched six relevant databases in 2022. A total of 299 sources were screened, with 5 forming the overall synthesis. RESULTS:  Two synthesised themes of women's experiences emerged at the time of reporting and during attendance at follow-up healthcare services. CONCLUSION:  South Africa does have an established legal framework for prosecution and can provide support for survivors of sexual violence through established Thuthuzela Care Centres (TCCs). The review identifies that survivors' needs are not clearly established when seeking medical attention initially nor identifying support or appropriate pathways.Contribution: The review has the potential to characterise the support available for women, the type and nature of sexual violence and interventions that may be used by healthcare professionals to support survivors especially during follow-up care.


Assuntos
Delitos Sexuais , Humanos , Feminino , África do Sul , Sobreviventes , Instalações de Saúde
7.
BMJ Open ; 13(8): e070868, 2023 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-37597869

RESUMO

INTRODUCTION: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers. METHODS AND ANALYSIS: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness. ETHICS AND DISSEMINATION: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning. TRIAL REGISTRATION NUMBER: ISRCTN11677384.


Assuntos
Demência , Medicina Estatal , Humanos , Estudos de Viabilidade , Aclimatação , Atenção Primária à Saúde , Demência/diagnóstico , Demência/terapia
8.
Dev Psychol ; 59(12): 2367-2378, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37650814

RESUMO

Irregular words cannot be read correctly by decoding letters into sounds using the most common letter-sound mapping relations. They are difficult to read and learn. Cognitive models of word reading and development as well as empirical data suggest that inhibitory control might be important for irregular word reading and its development. The current study tested this in a U.K. population-based cohort (N = 529, 52.74% male, 90.17% White) in which children were assessed longitudinally at ages 5-6, 7-8, and 10-11 years. Results showed that inhibitory control did not predict concurrent irregular word reading after controlling for the covariates of decoding and vocabulary. However, inhibitory control made a small but significant contribution to growth in irregular word reading across time points, over and above vocabulary (decoding did not predict growth). Therefore, children might need to inhibit the predisposition to overgeneralize the most common relations between letters and sounds when learning to read irregular words. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Assuntos
Leitura , Vocabulário , Criança , Humanos , Masculino , Feminino , Estudos Longitudinais , Aprendizagem
9.
Dementia (London) ; 22(7): 1461-1486, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37354084

RESUMO

Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care.


Assuntos
COVID-19 , Demência , Humanos , Demência/terapia , Fonte de Informação , Estudos de Viabilidade , Pandemias , Cuidadores , Equipe de Assistência ao Paciente
10.
BJGP Open ; 7(3)2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37160337

RESUMO

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. METHOD: High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. CONCLUSION: The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

11.
PLoS One ; 18(5): e0283818, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37134099

RESUMO

BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.


Assuntos
COVID-19 , Demência , Humanos , Cuidadores , Pandemias , Demência/diagnóstico , Demência/terapia , Atenção Primária à Saúde , Teste para COVID-19
12.
Cureus ; 15(3): e36728, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37123769

RESUMO

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic forced many changes. In our unit, there was a significant shift from traditional anesthesia (TA) which included general or regional anesthesia, to Wide-Awake Local Anesthesia No Tourniquet (WALANT) for the treatment of flexor tendon injuries. Zones I and II injuries have always been a challenge. The primary aim of this study is to compare the 12-week range of motion (ROM) flexor tendon repair outcomes between the TA group and wide-awake (WA) group patients. The secondary aim is to compare the complications and the follow-up rate between the two groups. METHODS: All patients who underwent a primary finger flexor tendon repair in zone I or II without tendon graft for closed avulsions or open lacerations between April 2020 and March 2021 were included in the study. Electronic medical records were reviewed to record demographics, follow-up, ROM outcomes and complications. RESULTS: Forty-four patients with 49 injured fingers were in the WA group, and 24 patients with 37 injured fingers were in the TA group. A complete follow-up with 12-week ROM outcomes was available for 15 patients with 16 injured fingers in the WA group and nine patients with 13 injured fingers in the TA group. Excellent to good outcomes in the WA group were reported in 56% of the cases versus 31% in the TA group, although the difference was not statistically significant. There were similar complications in both groups, with an overall rupture rate of 11.6%, a tenolysis rate of 3.5% and a reoperation rate of 9.3%. Complete 12-week follow-up was completed by 41% of patients overall after taking tendon ruptures into account. CONCLUSIONS: This is one of the first studies comparing zones I and II flexor tendon ROM outcomes between WA anesthesia and TA. Overall, there was a trend toward superior ROM outcomes in the WA group, with similar complication rates in both groups. The difference between ROM outcomes was not statistically significant and the small sample size undermined the strength of the study. To provide stronger evidence, better-designed prospective studies are suggested that would compare WA techniques with TA techniques.

13.
Q J Exp Psychol (Hove) ; 76(12): 2732-2748, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36765446

RESUMO

We report a preregistered analysis to test whether children meeting diagnostic criteria for language disorder (LD) have higher self-reported and/or parent-reported mental health symptoms during the transition from primary to secondary education. Data are from a UK-based longitudinal cohort study, The Surrey Communication and Language in Education Study (SCALES). SCALES oversampled children at risk of LD at school entry. Language was measured using a battery of standardised assessments in Year 1 (age 5-6 years, n = 529), and mental health symptoms were measured using self and parent report in Year 6 (age 10-11 years, n = 384) and Year 8 (age 12-13 years, n = 246). Social experiences were also measured using self-report measures in Year 6. Mental health symptoms were stable during the transition from primary to secondary school. Symptom rates did not differ between children with and without LD based on self-report, but children with LD had higher parent-reported mental health symptoms than their peers with typical language. Similarly, early language was negatively associated with parent-reported but not self-reported mental health symptoms. Early language was associated with fewer child-reported positive social experiences in Year 6, but social experiences did not mediate the association between language and mental health. We found poor agreement between parent and self-reported child mental health symptoms across language groups. Future studies should aim to determine sources of disagreement between parent and child report, particularly for children with communication difficulties who may struggle to accurately self-report mental health symptoms.


Assuntos
Idioma , Saúde Mental , Humanos , Pré-Escolar , Criança , Adolescente , Estudos Longitudinais , Comunicação , Autorrelato
14.
Autism ; 27(5): 1438-1448, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36544404

RESUMO

LAY ABSTRACT: Most autistic people will never experience being arrested or charged with a crime, however for those who do tend to be less satisfied with the way they were treated. The purpose of this study was to find out if autistic people are being disadvantaged by the criminal justice system if they are arrested. Previous research has shown that autistic people may have difficulties communicating with the police. This study builds on this knowledge by uncovering why autistic people may not feel able to communicate with the police and whether the police made any adjustments to help them. This study also measures the impact of being involved with the criminal justice system on autistic people's mental health, such as stress, meltdowns and shutdowns. The results show that autistic people were not always given the support they felt they needed. For example, not all autistic people had an appropriate adult with them at the police station who could help to make sure they understood what was happening around them. Autistic people were also more likely to feel less able to cope with the stress and more likely to suffer meltdowns and shutdowns because of their involvement with the criminal justice system. We hope this study will help police officers and lawyers to better support autistic people if they become involved with the criminal justice system.


Assuntos
Transtorno Autístico , Direito Penal , Saúde Mental , Populações Vulneráveis , Direito Penal/ética , Direito Penal/legislação & jurisprudência , Direito Penal/normas , Transtorno Autístico/psicologia , Estudos de Casos e Controles , Populações Vulneráveis/legislação & jurisprudência , Populações Vulneráveis/psicologia , Polícia , Estresse Psicológico/psicologia , Advogados , Reino Unido , Humanos , Adulto , Adaptação Psicológica , Trauma Psicológico , Barreiras de Comunicação , Satisfação Pessoal , Saúde Mental/estatística & dados numéricos , Crime/legislação & jurisprudência , Crime/psicologia , Masculino , Feminino , Adulto Jovem , Criminosos/legislação & jurisprudência , Criminosos/psicologia
15.
J Child Psychol Psychiatry ; 64(3): 376-387, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36114685

RESUMO

BACKGROUND: The aim of this study was to evaluate the Children's Communication Checklist-2 (CCC-2) for measuring social-pragmatic communication deficits and to ascertain their prevalence and functional impact in a community sample. METHODS: We used parent and teacher responses to the CCC-2 to approximate inclusion (poor social-pragmatic skills) and exclusion (poor structural language skills or autistic symptomatology) criteria for social (pragmatic) communication disorder (SPCD). We tested the prevalence of social-pragmatic deficits in a population-based sample of children (n = 386) aged 5-6 years old using CCC-2 algorithms. We also investigated the academic and behavioural profiles of children with broadly defined limitations in social-pragmatic competence on the CCC-2. RESULTS: Regardless of the diagnostic algorithm used, the resulting prevalence rates for social-pragmatic deficits indicated that very few children had isolated social-communication difficulties (0-1.3%). However, a larger proportion of children (range: 6.1-10.5%) had social-pragmatic skills outside the expected range alongside structural language difficulties and/or autism spectrum symptoms, and this profile was associated with a range of adverse academic and behavioural outcomes. CONCLUSIONS: A considerable proportion of children in the early years of primary school has social-pragmatic deficits that interfere with behaviour and scholastic activity; however, these rarely occur in isolation. Exclusionary criteria that include structural language may lead to underidentification of individuals with social-pragmatic deficits that may benefit from tailored support and intervention.


Assuntos
Transtorno Autístico , Transtornos da Comunicação , Transtornos do Desenvolvimento da Linguagem , Criança , Humanos , Pré-Escolar , Prevalência , Transtornos da Comunicação/epidemiologia , Transtorno Autístico/diagnóstico , Idioma , Comunicação , Transtornos do Desenvolvimento da Linguagem/epidemiologia , Transtornos do Desenvolvimento da Linguagem/diagnóstico
16.
Biomed Res Int ; 2022: 6751456, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35496035

RESUMO

Placental tissues encompass all the tissues which support fetal development, including the placenta, placental membrane, umbilical cord, and amniotic fluid. Since the 1990s there has been renewed interest in the use of these tissues as a raw material for regenerative medicine applications. Placental tissues have been extensively studied for their potential contribution to tissue repair applications. Studies have attributed their efficacy in augmenting the healing process to the extracellular matrix scaffolds rich in collagens, glycosaminoglycans, and proteoglycans, as well as the presence of cytokines within the tissues that have been shown to stimulate re-epithelialization, promote angiogenesis, and aid in the reduction of inflammation and scarring. The compositions and properties of all birth tissues give them the potential to be valuable biomaterials for the development of new regenerative therapies. Herein, the development and compositions of each of these tissues are reviewed, with focus on the structural and signaling components that are relevant to medical applications. This review also explores current configurations and recent innovations in the use of placental tissues as biomaterials in regenerative medicine.


Assuntos
Materiais Biocompatíveis , Medicina Regenerativa , Materiais Biocompatíveis/química , Materiais Biocompatíveis/uso terapêutico , Matriz Extracelular/química , Feminino , Glicosaminoglicanos , Humanos , Placenta , Gravidez
17.
Autism Res ; 15(5): 904-914, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35289115

RESUMO

We investigate whether autistic people's vulnerability is taken into account at each stage of the criminal justice system (CJS). Defense lawyers from 12 nations were included in the study although the sample was predominantly from the UK. Lawyers completed an online survey regarding one case in which they had defended an autistic client between January 2015 and January 2020; and on one case in which they had defended a nonautistic client charged with a similar offense, to provide a comparison group. Ninety-three lawyers (85% in the UK) reported on one autistic case, and 53 also reported on one nonautistic case. 75% of autistic clients were not given reasonable adjustments during the process. Only 43% were offered an appropriate adult during police investigations, even though they had an existing diagnosis of autism. 59% of prosecution barristers and 46% of judges said or did something during the trial that made the lawyers concerned that they did not have an adequate understanding of autism. Lawyers were 7.58 times more likely to be concerned about their autistic client's effective participation in court and were 3.83 times more likely to be concerned that their autistic clients would engage in self-harm, compared with their nonautistic clients. There is a failure to identify and address autistic peoples' disability within the CJS. There is a need for mandatory autism training for police officers and the judiciary, with a focus on identifying autism and understanding the needs of autistic people so that reasonable adjustments are offered in all cases. LAY SUMMARY: This study sought to investigate if the needs of autistic people are being overlooked by the police and other professionals within the CJS. Results show that autistic people are not always given the support they need during police questioning or in court. The experience of being involved with the police may also have a more negative impact on autistic peoples' mental health than that of nonautistic people.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adulto , Transtorno do Espectro Autista/psicologia , Direito Penal , Humanos , Polícia , Inquéritos e Questionários
18.
Dementia (London) ; 21(3): 972-994, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35148655

RESUMO

BACKGROUND AND PURPOSE: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. Whilst ethical guidelines and principles provide overarching guidance, there is a lack of detailed guidance and evidence-based training, incorporating practical 'on the ground' strategies and advice on communication practices. Experiences and reflections on research procedures used to gauge and address capacity are under reported, resulting in a lack of shared knowledge within the field. DESIGN: To help address this, we engaged in researcher (co)meta-reflection on the informed capacity judgement procedure for initial consent, within our current, person-centred dementia intervention feasibility study. Our objective was to identify areas to improve our approach, but to also put forward suggestions for wider change within ethical research practice. RESULTS: Findings reveal challenges and facilitators relating to six areas: 'Conducting time sensitive research whilst remaining person-centred and building relationships'; 'Information sharing and supporting communication'; 'Applying the process flexibly'; 'The role of the carer and the consultee process'; 'Judging assent and dissent' and 'Researcher related factors'. We questioned our 'capacity to make capacity judgements' in terms of both our skills and research time constraints. CONCLUSIONS: Based on our experiences, we argue for greater open discussion between researchers, Patient and Public Involvement contributors and Research Ethics Committees at initial project planning stages. We recommend training and guidance focuses on building researcher skills in applying a standard process flexibly, emphasising naturalistic, conversational approaches to capacity judgement. A crucial consideration for funders is how this time-intensive and sensitive work should be factored into bid application templates and funding grants. Learnings from this article have potential to inform evidence-based guidance and training for researchers, consultees, funders, reviewers and ethics committees.


Assuntos
Demência , Adulto , Comunicação , Humanos , Disseminação de Informação
19.
J Public Health (Oxf) ; 44(4): 863-876, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-34164686

RESUMO

BACKGROUND: Flu can have serious consequences for pregnant woman and unborn babies. Vaccination provides safe and effective protection, yet uptake among pregnant women is below national targets. Digital interventions are effective at increasing adherence to health interventions. AIMS: This review aimed to establish whether digital interventions are effective at increasing rates of flu vaccination among pregnant women, and to determine the overall effect size. METHOD: Systematic searches identified digital intervention trials, aiming to increase rate of flu vaccination among pregnant women. Random-effects meta-analysis provided a combined effect size and examined which mode of digital interventions had the largest effects on flu vaccination. RESULTS: Ten studies were included in the review. The majority of digital interventions were more effective at increasing rates of flu vaccination (7-81.3% uptake) than usual care or non-digital interventions (7.3-47.1% uptake). When meta-analysed, digital interventions had a small, non-significant effect (odds ratio [OR] = 1.29, 95% confidence interval [CI]: 0.71, 2.31), P = 0.40. Text messages (OR = 1.25, 95% CI: 0.58, 2.67), P = 0.57 appeared less effective than other digital interventions (OR = 1.58, 95% CI: 1.02, 2.46), P = 0.04. CONCLUSIONS: Overall, there is a lack of high-quality studies reporting the effectiveness of digital interventions at increasing flu vaccination during pregnancy. Future interventions may benefit from using video or social media to communicate messages for maximum success in targeting an increase in rates of flu vaccination in pregnancy.


Assuntos
Gestantes , Envio de Mensagens de Texto , Gravidez , Feminino , Humanos , Vacinação
20.
Dev Sci ; 25(3): e13208, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34862694

RESUMO

Mutualism is a developmental theory that posits positive reciprocal relationships between distinct cognitive abilities during development. It predicts that abilities such as language and reasoning will influence each other's rates of growth. This may explain why children with Language Disorders also tend to have lower than average non-verbal cognitive abilities, as poor language would limit the rate of growth of other cognitive skills. The current study tests whether language and non-verbal reasoning show mutualistic coupling in children with and without language disorder using three waves of data from a longitudinal cohort study that over-sampled children with poor language at school entry (N = 501, 7-13 years). Bivariate Latent Change Score models were used to determine whether early receptive vocabulary predicted change in non-verbal reasoning and vice-versa. Models that included mutualistic coupling parameters between vocabulary and non-verbal reasoning showed superior fit to models without these parameters, replicating previous findings. Specifically, children with higher initial language abilities showed greater growth in non-verbal ability and vice versa. Multi-group models suggested that coupling between language and non-verbal reasoning was equally strong in children with language disorder and those without. This indicates that language has downstream effects on other cognitive abilities, challenging the existence of selective language impairments. Future intervention studies should test whether improving language skills in children with language disorder has positive impacts on other cognitive abilities (and vice versa), and low non-verbal IQ should not be a barrier to accessing such intervention.


Assuntos
Deficiência Intelectual , Transtornos do Desenvolvimento da Linguagem , Transtornos da Linguagem , Criança , Humanos , Idioma , Testes de Linguagem , Estudos Longitudinais , Simbiose , Vocabulário
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