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1.
Nat Methods ; 21(5): 804-808, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38191935

RESUMO

Neuroimaging research requires purpose-built analysis software, which is challenging to install and may produce different results across computing environments. The community-oriented, open-source Neurodesk platform ( https://www.neurodesk.org/ ) harnesses a comprehensive and growing suite of neuroimaging software containers. Neurodesk includes a browser-accessible virtual desktop, command-line interface and computational notebook compatibility, allowing for accessible, flexible, portable and fully reproducible neuroimaging analysis on personal workstations, high-performance computers and the cloud.


Assuntos
Neuroimagem , Software , Neuroimagem/métodos , Humanos , Interface Usuário-Computador , Reprodutibilidade dos Testes , Encéfalo/diagnóstico por imagem
2.
J Gen Intern Med ; 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38831247

RESUMO

INTRODUCTION: Proactive tobacco treatment programs are an evidence-based strategy to recruit patients who smoke to make supported quit attempts. However, such programs are rarely implemented. We performed a qualitative assessment of clinicians to inform the creation of a proactive outreach program for patients with chronic obstructive pulmonary disease (COPD) who smoke. METHODS: Informed by the Consolidated Framework for Implementation Research, we conducted semi-structured interviews to assess clinician views of proactive outreach, including barriers, program structure, and the use of technology. Clinicians included primary and specialty care physicians, nurses and advanced practice providers, pharmacists, respiratory therapists, a psychologist, and relevant members of leadership. Interviews were transcribed and analyzed using directed content analysis. RESULTS: Clinicians in all roles identified that proactive outreach could be an effective use of resources to help patients with COPD who smoke quit with several advantages over the current state. Clinicians disagreed on the priority population (e.g., younger patients, sicker patients), and to some extent on whether proactive outreach is a clinical priority. Though they supported that technology could be part of the outreach program, most advocated for multiple avenues (phone calls, drop-in clinic, texting), as these patients were perceived to be low technology utilizers. The primary implementation barriers were competing priorities and cost, as well as unclear billing and staffing models. CONCLUSIONS: Clinicians support proactive outreach for patients with COPD, but the optimal way to structure, staff, and fund such programs remains unclear. Health systems should leverage implementation strategies to speed uptake of these potentially life-saving programs.

3.
Mol Psychiatry ; 2023 Mar 10.
Artigo em Inglês | MEDLINE | ID: mdl-36899042

RESUMO

Prenatal maternal stressful life events are associated with adverse neurodevelopmental outcomes in offspring. Biological mechanisms underlying these associations are largely unknown, but DNA methylation likely plays a role. This meta-analysis included twelve non-overlapping cohorts from ten independent longitudinal studies (N = 5,496) within the international Pregnancy and Childhood Epigenetics consortium to examine maternal stressful life events during pregnancy and DNA methylation in cord blood. Children whose mothers reported higher levels of cumulative maternal stressful life events during pregnancy exhibited differential methylation of cg26579032 in ALKBH3. Stressor-specific domains of conflict with family/friends, abuse (physical, sexual, and emotional), and death of a close friend/relative were also associated with differential methylation of CpGs in APTX, MyD88, and both UHRF1 and SDCCAG8, respectively; these genes are implicated in neurodegeneration, immune and cellular functions, regulation of global methylation levels, metabolism, and schizophrenia risk. Thus, differences in DNA methylation at these loci may provide novel insights into potential mechanisms of neurodevelopment in offspring.

4.
Psychol Med ; 53(9): 3963-3973, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-35351228

RESUMO

BACKGROUND: The Discrimination and Stigma Scale (DISC) is a patient-reported outcome measure which assesses experiences of discrimination among persons with a mental illness globally. METHODS: This study evaluated whether the psychometric properties of a short-form version, DISC-Ultra Short (DISCUS) (11-item), could be replicated in a sample of people with a wide range of mental disorders from 21 sites in 15 countries/territories, across six global regions. The frequency of experienced discrimination was reported. Scaling assumptions (confirmatory factor analysis, inter-item and item-total correlations), reliability (internal consistency) and validity (convergent validity, known groups method) were investigated in each region, and by diagnosis group. RESULTS: 1195 people participated. The most frequently reported experiences of discrimination were being shunned or avoided at work (48.7%) and discrimination in making or keeping friends (47.2%). Confirmatory factor analysis supported a unidimensional model across all six regions and five diagnosis groups. Convergent validity was confirmed in the total sample and within all regions [ Internalised Stigma of Mental Illness (ISMI-10): 0.28-0.67, stopping self: 0.54-0.72, stigma consciousness: -0.32-0.57], as was internal consistency reliability (α = 0.74-0.84). Known groups validity was established in the global sample with levels of experienced discrimination significantly higher for those experiencing higher depression [Patient Health Questionnaire (PHQ)-2: p < 0.001], lower mental wellbeing [Warwick-Edinburgh Well-being Scale (WEMWBS): p < 0.001], higher suicidal ideation [Beck Hopelessness Scale (BHS)-4: p < 0.001] and higher risk of suicidal behaviour [Suicidal Ideation Attributes Scale (SIDAS): p < 0.001]. CONCLUSIONS: The DISCUS is a reliable and valid unidimensional measure of experienced discrimination for use in global settings with similar properties to the longer DISC. It offers a brief assessment of experienced discrimination for use in clinical and research settings.


Assuntos
Transtornos Mentais , Humanos , Reprodutibilidade dos Testes , Transtornos Mentais/diagnóstico , Estigma Social , Psicometria , Ideação Suicida , Inquéritos e Questionários
5.
Int J Equity Health ; 22(1): 231, 2023 11 03.
Artigo em Inglês | MEDLINE | ID: mdl-37924085

RESUMO

BACKGROUND: Public health research highlights the influence of socio-political biases shaping obstacles to fair healthcare access based on gender. South Africa has shown commitment to resolving gender imbalances in healthcare, historically emphasizing cisgender women's challenges. However, research gaps exist in exploring how public health systems perpetuate disparities among gender-diverse persons, like trans women, who face exclusion due to their deviation from cisgender norms in healthcare. Critical, intersectionality-informed health research carries the potential to reveal the diversity of gendered healthcare experiences and expose the systems and processes that marginalize trans patients. METHODS: This study adopts a critical trans politics perspective to explore the socio-political forces limiting South African trans women's access to public healthcare. Using a critical narrative approach, the research asks: 1) What narratives do South African trans women share about their experiences in health systems? 2) What gendered societal structures, practices, and norms enable or hinder their inclusion in health systems? Over a period of two months in 2022, five South African adult trans women between the ages of 22 and 30 participated in 60 to 90-min long, semi-structured individual, telephonic interviews, focusing on participants' subjective experiences in healthcare. RESULTS: Trans women's narratives unveiled a culture of medical genderism in South African public healthcare, discriminating against patients whose gender misaligns with societal norms. This culture is represented by the trans women's experiences of their identities being structurally stigmatized and delegitimized when seeking healthcare, reflected in institutional policies, practices, and protocols consistently disregarding and misgendering them. Trans women's systemic erasure was illustrated by the restricted professional knowledge, availability, and adoption of gender-affirming healthcare in a ciscentric public healthcare system prioritizing cisgender needs. The intersection of gender, race, and class dynamics compounded the obstacles faced in accessing healthcare. CONCLUSIONS: This inquiry underscores the structural hurdles trans women face when accessing suitable public healthcare. It introduces a gender equity framework for trans inclusive healthcare, outlining implications for research, theory, policy, and practice. Toward the goal of embracing complexity and diversity, this framework, for example, promotes the rigorous absorption of trans persons and their healthcare experiences in gender-responsive programming, and encourages the development of a comprehensive understanding of gender equity from an intersectional perspective incorporating the unique needs and rights of trans healthcare seekers. The framework also offers practical guidance for cultivating health systems attuned to gender diversity (such as addressing medical genderism and recognizing the broad spectrum of identity at a policy level).


Assuntos
Equidade de Gênero , Identidade de Gênero , Adulto , Humanos , Feminino , Adulto Jovem , África do Sul , Pesquisa Qualitativa , Acessibilidade aos Serviços de Saúde
6.
Acta Neuropsychiatr ; : 1-8, 2023 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-37612147

RESUMO

BACKGROUND: The corpus callosum (CC) is a brain structure with a high heritability and potential role in psychiatric disorders. However, the genetic architecture of the CC and the genetic link with psychiatric disorders remain largely unclear. We investigated the genetic architectures of the volume of the CC and its subregions and the genetic overlap with psychiatric disorders. METHODS: We applied multivariate genome-wide association study (GWAS) to genetic and T1-weighted magnetic resonance imaging (MRI) data of 40,894 individuals from the UK Biobank, aiming to boost genetic discovery and to assess the pleiotropic effects across volumes of the five subregions of the CC (posterior, mid-posterior, central, mid-anterior and anterior) obtained by FreeSurfer 7.1. Multivariate GWAS was run combining all subregions, co-varying for relevant variables. Gene-set enrichment analyses were performed using MAGMA. Linkage disequilibrium score regression (LDSC) was used to determine Single nucleotide polymorphism (SNP)-based heritability of total CC volume and volumes of its subregions as well as their genetic correlations with relevant psychiatric traits. RESULTS: We identified 70 independent loci with distributed effects across the five subregions of the CC (p < 5 × 10-8). Additionally, we identified 33 significant loci in the anterior subregion, 23 in the mid-anterior, 29 in the central, 7 in the mid-posterior and 56 in the posterior subregion. Gene-set analysis revealed 156 significant genes contributing to volume of the CC subregions (p < 2.6 × 10-6). LDSC estimated the heritability of CC to (h2SNP = 0.38, SE = 0.03) and subregions ranging from 0.22 (SE = 0.02) to 0.37 (SE = 0.03). We found significant genetic correlations of total CC volume with bipolar disorder (BD, rg = -0.09, SE = 0.03; p = 5.9 × 10-3) and drinks consumed per week (rg = -0.09, SE = 0.02; p = 4.8 × 10-4), and volume of the mid-anterior subregion with BD (rg = -0.12, SE = 0.02; p = 2.5 × 10-4), major depressive disorder (MDD) (rg = -0.12, SE = 0.04; p = 3.6 × 10-3), drinks consumed per week (rg = -0.13, SE = 0.04; p = 1.8 × 10-3) and cannabis use (rg = -0.09, SE = 0.03; p = 8.4 × 10-3). CONCLUSIONS: Our results demonstrate that the CC has a polygenic architecture implicating multiple genes and show that CC subregion volumes are heritable. We found that distinct genetic factors are involved in the development of anterior and posterior subregions, consistent with their divergent functional specialisation. Significant genetic correlation between volumes of the CC and BD, drinks per week, MDD and cannabis consumption subregion volumes with psychiatric traits is noteworthy and deserving of further investigation.

7.
Gerontol Geriatr Educ ; 44(4): 574-587, 2023 10 02.
Artigo em Inglês | MEDLINE | ID: mdl-36117420

RESUMO

Little is known about student aging interest groups (AIGs) in post-secondary institutions. Our study evaluated awareness of a student aging interest group at a western Canadian university with no gerontology program. Additional goals included assessing interest in joining the AIG, participation rates among group members, and preferences for group activities. Using a mixed method approach we analyzed 13 years of administrative data recording 65 meetings and conducted a survey among group members and nonmember students across the university with a potential interest in aging (n = 52). Almost two-thirds of respondents (n = 33) were nonmembers with most of these (n = 24) having no prior knowledge of the AIG; 77% of students already aware of the AIG learned about it from a professor. Sixty per cent of respondents were in health-related faculties, with the remainder representing multiple disciplines and faculties. Group attendance was strongly influenced by student workloads and schedules, with average attendance rising by 27.3% during the shift to virtual meetings in 2020-21. Our results highlight the interdisciplinary nature of aging studies, the key role faculty members play in informing students about AIGs, and the broad range of interests that students have in issues related to age and aging.


Assuntos
Geriatria , Opinião Pública , Humanos , Geriatria/educação , Canadá , Estudantes , Envelhecimento
8.
J Med Virol ; 94(2): 782-786, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34633091

RESUMO

Respiratory syncytial virus (RSV) is the leading cause of acute lower respiratory infection hospitalisations in Aboriginal infants specifically those aged <6 months. Maternally derived RSV antibody (Ab) can protect against severe RSV disease in infancy. However, the efficiency of transplacental transfer of maternal anti-RSV Ab remains unknown in Aboriginal infants. We characterised RSV Ab in Australian First Nations mother-infant pairs (n = 78). We investigated impact of covariates including low birthweight, gestational age (GA), sex of the baby, maternal age and multiparity of the mother on cord to maternal anti-RSV Ab titre ratio (CMTR) using multivariable logistic regression model. All (n = 78) but one infant was born full term (median GA: 39 weeks, interquartile range: 38-40 weeks) and 56% were males. The mean log2 RSV Ab titre was 10.7 (SD± 1.3) in maternal serum and 11.0 (SD ± 1.3) in cord serum at birth; a ratio of 1.02 (SD ± 0.06). One-third of the pairs had a CMTR of <1 indicating impaired transfer. Almost 9% (7/78) of the term infants had cord RSV Ab levels below

Assuntos
Povos Indígenas , Infecções por Vírus Respiratório Sincicial , Vírus Sincicial Respiratório Humano , Adulto , Anticorpos Antivirais , Austrália , Feminino , Humanos , Lactente , Recém-Nascido , Modelos Logísticos , Masculino , Mães , Análise Multivariada , Adulto Jovem
9.
Soc Psychiatry Psychiatr Epidemiol ; 56(4): 695-706, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32797244

RESUMO

PURPOSE: To determine the prevalence of substance use disorders (SUDs) in patients with schizophrenia in a sample from South Africa and compare the clinical and demographic correlates in those with and without co-occurring SUDs. METHODS: Patients with schizophrenia were interviewed using the Xhosa version SCID-I for DSM-IV. We used logistic regression to determine the predictors of SUDs. RESULTS: In the total sample of 1420 participants, SUDs occurred in 47.8%, with the most prevalent SUD being cannabis use disorders (39.6%), followed by alcohol (20.5%), methaqualone (6.2%), methamphetamine (4.8%) and other SUDs (cocaine, ecstasy, opioids, 0.6%). Polydrug use occurred in 40%, abuse occurred in 13.5%, and 39.6% had at least one substance dependence diagnosis. Significant predictors of any SUD were younger age (41-55 vs. 21-30: OR = 0.7, 95% CI = 0.5-0.9), male sex (OR = 8.6, 95% CI = 5.1-14.6), inpatient status (OR = 1.7, 95% CI = 1.3-2.1), post-traumatic stress symptoms (OR = 4.6, 95% CI = 1.6-13.3), legal (OR = 3.4, 95% CI = 2.0-5.5) and economic problems (OR = 1.4, 95% CI = 1.0-2.0). Methamphetamine use disorders occurred significantly less often in the Eastern compared to the Western Cape provinces. Inpatient status and higher levels of prior admissions were significantly associated with cannabis and methamphetamine use disorders. Post-traumatic stress symptoms were significantly associated with alcohol use disorders. Anxiety disorders were associated with other SUDs. CONCLUSION: SUDs occurred in almost half of the sample. It is important for clinicians to identify the presence of SUDs as their presence is associated with characteristics, such as male sex, younger age, inpatient status, more prior hospitalisations, legal and economic problems, PTSD symptoms and anxiety.


Assuntos
Alcoolismo , Esquizofrenia , Transtornos Relacionados ao Uso de Substâncias , Alcoolismo/epidemiologia , Comorbidade , Humanos , Masculino , Prevalência , Esquizofrenia/epidemiologia , África do Sul/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia
10.
Psychol Med ; 50(9): 1570-1577, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31387660

RESUMO

BACKGROUND: Evidence from high-income countries suggests that childhood trauma is associated with schizophrenia. Studies of childhood trauma and schizophrenia in low and middle income (LMIC) countries are limited. This study examined the prevalence of childhood traumatic experiences among cases and controls and the relationship between specific and cumulative childhood traumatic experiences and schizophrenia in a sample in South Africa. METHODS: Data were from the Genomics of Schizophrenia in the South African Xhosa people study. Cases with schizophrenia and matched controls were recruited from provincial hospitals and clinics in the Western and Eastern Cape regions in South Africa. Childhood traumatic experiences were measured using the Childhood Trauma Questionnaire (CTQ). Adjusted logistic regression models estimated associations between individual and cumulative childhood traumatic experiences and schizophrenia. RESULTS: Traumatic experiences were more prevalent among cases than controls. The odds of schizophrenia were 2.44 times higher among those who experienced any trauma than those who reported no traumatic experiences (95% CI 1.77-3.37). The odds of schizophrenia were elevated among those who experienced physical/emotional abuse (OR 1.59, CI 1.28-1.97), neglect (OR 1.39, CI 1.16-1.68), and sexual abuse (OR 1.22, CI 1.03-1.45) compared to those who did not. Cumulative physical/emotional abuse and neglect experiences increased the odds of schizophrenia as a dose-response relationship. CONCLUSION: Childhood trauma is common in this population. Among many other benefits, interventions to prevent childhood trauma may contribute to a decreasing occurrence of schizophrenia.


Assuntos
Abuso Sexual na Infância/estatística & dados numéricos , Maus-Tratos Infantis/estatística & dados numéricos , Esquizofrenia/epidemiologia , Psicologia do Esquizofrênico , Adulto , Criança , Maus-Tratos Infantis/psicologia , Abuso Sexual na Infância/psicologia , Feminino , Genômica , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Modelos Psicológicos , Prevalência , Esquizofrenia/diagnóstico , África do Sul/epidemiologia , Inquéritos e Questionários , Adulto Jovem
11.
J Med Ethics ; 46(2): 137-143, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31563871

RESUMO

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised.


Assuntos
Genômica/ética , Consentimento Livre e Esclarecido , Deficiência Intelectual , Competência Mental , Transtornos Mentais , Psiquiatria/ética , Projetos de Pesquisa , Pesquisa Biomédica/ética , Cognição , Tomada de Decisões , Pessoas com Deficiência , Empoderamento , Ética em Pesquisa , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/psicologia , Participação do Paciente , Sujeitos da Pesquisa
12.
Soc Psychiatry Psychiatr Epidemiol ; 55(12): 1679-1686, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32409883

RESUMO

BACKGROUND: Over the past three decades, a range of international stakeholders have highlighted the possibility that genomic research may impact stigma associated with psychiatric disorders. Limited research has been conducted in Africa to investigate this relation. METHOD: In the present study, using focus group discussions, we explored the relation between genetic attribution and stigma among 36 Xhosa people with schizophrenia. We addressed three main questions: (1) What causal beliefs do Xhosa people with schizophrenia use to explain their illness and to what extent do genetic explanations play a role in these beliefs? (2) What are the internalised stigma experiences of Xhosa people with schizophrenia? (3) How do genetic explanations relate to stigma experiences, if at all? RESULTS: Most participants were able to define genetics and some linked genetics to disease causation. Despite adequate knowledge of genetics and an emphasis on genetic explanations of schizophrenia in the study, most participants held a multitude of causal explanations including: psychosocial, environmental, and cultural. Moreover, participants rarely mentioned disease cause when describing their stigma experiences. DISCUSSION: For this population group, there was no straight-forward relation between a genetic attribution and stigma. Therefore, we did not find evidence that genetic attribution may significantly increase stigma. Although North American and European literature provides conflicting evidence regarding this relation, there is increased consensus that biomedical explanations for psychiatric disorders may reduce blame. This study found evidence supporting that consensus. This study provides an empirical foundation to inform ongoing work on the psychosocial implications of psychiatric genomics research in non-Western contexts.


Assuntos
Esquizofrenia , Grupos Focais , Humanos , Esquizofrenia/genética , Percepção Social , Estigma Social , África do Sul
13.
J Pediatr Orthop ; 40(1): e42-e48, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30994582

RESUMO

BACKGROUND: Although halo gravity traction (HGT) has been used to treat children with severe spinal deformity for decades, there is a distinct lack of high-quality evidence to speak to its merits or to dictate ideal manner of implementation. In addition, no guidelines exist to drive research or assist surgeons in their practice. The aim of this study was to establish best practice guidelines (BPG) using formal techniques of consensus building among a group of experienced pediatric spinal deformity surgeons to determine ideal indications and implementation of HGT for pediatric spinal deformity. METHODS: The Delphi process and nominal group technique were used to formally derive consensus among leaders in pediatric spine surgery. Initial work identified significant areas of variability in practice for which we sought to garner consensus. After review of the literature, 3 iterative surveys were administered from February through April 2018 to nationwide experts in pediatric spinal deformity. Surveys assessed anonymous opinions on ideal practices for indications, preoperative evaluation, protocols, and complications, with agreement of 80% or higher considered consensus. Final determination of consensus items and equipoise were established using the Nominal group technique in a facilitated meeting. RESULTS: Of the 42 surgeons invited, responses were received from 32, 40, and 31 surgeons for each survey, respectively. The final meeting included 14 experts with an average 10.5 years in practice and average 88 annual spinal deformity cases. Experts reached consensus on 67 items [indications (17), goals (1), preoperative evaluations (5), protocols (36), complications (8)]; these were consolidated to create final BPG in all categories, including statements to help dictate practice such as using at least 6 to 8 pins under 4 to 8 lbs of torque, with a small, tolerable starting weight and reaching goal weight of 50% TBW in ∼2 weeks. Nine items remained items of equipoise for the purposes of guiding future research. CONCLUSIONS: We developed consensus-based BPG for the use and implementation of HGT for pediatric spinal deformity. This can serve as a measure to help drive future research as well as give new surgeons a place to begin their practice of HGT. LEVEL OF EVIDENCE: Level V-expert opinion.


Assuntos
Seleção de Pacientes , Curvaturas da Coluna Vertebral/cirurgia , Tração/métodos , Tração/normas , Adolescente , Criança , Pré-Escolar , Congressos como Assunto , Consenso , Técnica Delphi , Gravitação , Humanos , Lactente , Guias de Prática Clínica como Assunto , Cuidados Pré-Operatórios/normas , Inquéritos e Questionários , Equipolência Terapêutica , Tração/efeitos adversos
14.
Dev World Bioeth ; 20(3): 139-149, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-31724268

RESUMO

Psychiatric genomics research with African populations comes with a range of practical challenges around translation of psychiatric genomics research concepts, procedures, and nosology. These challenges raise deep ethical issues particularly around legitimacy of informed consent, a core foundation of research ethics. Through a consideration of the constitutive function of language, the paper problematises like-for-like, designative translations which often involve the 'indigenization' of English terms or use of metaphors which misrepresent the risks and benefits of research. This paper argues that effective translation of psychiatric genomics research terminology in African contexts demands substantive engagement with African conceptual schemas and values. In developing attenuated forms of translational thinking, researchers may recognise the deeper motivational reasons behind participation in research, highlighting the possibility that such reasons may depart from the original meaning implied within informed consent forms. These translational issues might be ameliorated with a critical re-examination of how researchers develop and present protocols to institutional ethics review boards.


Assuntos
Ética em Pesquisa , Genômica , Consentimento Livre e Esclarecido , Psiquiatria , África , Comitês de Ética em Pesquisa , Saúde Holística , Humanos , Projetos de Pesquisa , Pesquisa Translacional Biomédica
15.
Neuroimage ; 202: 116023, 2019 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-31325644

RESUMO

Soft robotics have come to the forefront of devices available for rehabilitation following stroke; however, objective evaluation of the specific brain changes following rehabilitation with these devices is lacking. In this study, we utilized functional Magnetic Resonance Imaging (fMRI) and dynamic causal modeling (DCM) to characterize the activation of brain areas with a MRI compatible glove actuator compared to the conventional manual therapy. Thirteen healthy volunteers engaged in a motor-visual fMRI task under four different conditions namely active movement, manual passive movement, passive movement using a glove actuator, and crude tactile stimulation. Brain activity following each task clearly identified the somatosensory motor area (SMA) as a major hub orchestrating activity between the primary motor (M1) and sensory (S1) cortex. During the glove-induced passive movement, activity in the motor-somatosensory areas was reduced, but there were significant increases in motor cortical activity compared to manual passive movement. We estimated the modulatory signaling from within a defined sensorimotor network (SMA, M1, and S1), through DCM and highlighted a dual-gating of sensorimotor inputs to the SMA. Proprioceptive signaling from S1 to the SMA reflected positive coupling for the manually assisted condition, while M1 activity was positively coupled to the SMA during the glove condition. Importantly, both the S1 and M1 were shown to influence each other's connections with the SMA, with inhibitory nonlinear modulation by the M1 on the S1-SMA connection, and similarly S1 gated the M1-SMA connection. The work is one of the first to have applied effective connectivity to examine sensorimotor activity ensued by manual or robotic passive range of motion exercise, crude tactile stimulation, and voluntary movements to provide a basis for the mechanism by which soft actuators can alter brain activity.


Assuntos
Conectoma/métodos , Exercício Físico/fisiologia , Atividade Motora/fisiologia , Córtex Motor/fisiologia , Propriocepção/fisiologia , Desempenho Psicomotor/fisiologia , Amplitude de Movimento Articular/fisiologia , Córtex Somatossensorial/fisiologia , Percepção do Tato/fisiologia , Adulto , Humanos , Imageamento por Ressonância Magnética/métodos , Córtex Motor/diagnóstico por imagem , Estimulação Física , Córtex Somatossensorial/diagnóstico por imagem , Adulto Jovem
16.
BMC Med ; 17(1): 84, 2019 04 29.
Artigo em Inglês | MEDLINE | ID: mdl-31030670

RESUMO

BACKGROUND: It is critically important to conduct research on stigmatized conditions, to include marginalized groups that experience stigma, and to develop interventions to reduce stigma. However, such research is ethically challenging. Though superficial reference is frequently made to these widely acknowledged challenges, few publications have focused on ethical issues in research on stigmatized groups or conditions. In fact, a brief literature review found only two such publications. MAIN TEXT: At a recent Science of Stigma Reduction workshop comprising 60 stigma researchers from the USA and low and middle-income countries, the need for more robust and critical discussion of the ethics of the research was highlighted. In this paper we describe, illustrate through cases, and critically examine key ethical challenges that are more likely to arise because a research study focuses on health-related stigma or involves stigmatized groups or conditions. We examine the ethics of this research from two perspectives. First, through the lens of overprotection, where we discuss how the perception of stigma can impede ethical research, disrespect research participants, and narrow the research questions. Second, through the lens of research risks, where we consider how research with stigmatized populations can unintentionally result in harms. Research-related harms to participants include potential breaches of confidentiality and the exacerbation of stigma. Potential harms also extend to third parties, including families and populations who may be affected by the dissemination of research results. CONCLUSIONS: Research with stigmatized populations and on stigmatized conditions should not be impeded by unnecessary or inappropriate protective measures. Nevertheless, it may entail different and greater risks than other health research. Investigators and research ethics committees must be particularly attentive to these risks and how to manage them.


Assuntos
Comitês de Ética em Pesquisa/ética , Saúde Global/ética , Estigma Social , Humanos , Projetos de Pesquisa
17.
J Pediatr Orthop ; 39(10): e737-e741, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30672765

RESUMO

BACKGROUND: Early-onset scoliosis (EOS) is a complex, heterogeneous condition involving multiple etiologies, genetic associations, and treatment plans. In 2014, Williams and colleagues proposed a classification system of EOS (C-EOS) that categorizes patients by etiology, Cobb angle, and kyphosis. Shortly after, Smith and colleagues validated a classification system to report complications of growth-friendly spine instrumentation. Severity refers to the level of care and urgency required to treat the complication, and can be classified as device-related or disease-related complications. The purpose of this study was to investigate if C-EOS can be used as a reliable predictor of Smith complications to better risk stratify these young, surgical patients. METHODS: This study queried retrospective data from a large multicenter registry with regard to growth-friendly spine instrumentation in the EOS population. One-hundred sixteen patients were included in final data analysis to investigate the outcomes of their growth-friendly procedures according to the Smith complication classification system. RESULTS: There were 245 Smith complications distributed among 116 patients included in this study (2.1 complications per patient). The majority of the complications were device related requiring at least one unplanned trip to the operating room (Smith Device Complication IIA or IIB; 111 complications). There were no complications that caused abandonment of growth-friendly instrumentation (Smith Complication III) and no mortalities (Smith Complication IV). The most severely affected EOS group was the hyperkyphotic syndromic group with a major curve angle >50 degrees (S3+), with 3.4 complications per patient. The least affect EOS group was the hyperkyphotic congenital group with a major curve angle between 20 and 50 degrees, with 0.3 complications per patient. CONCLUSIONS: The C-EOS simplifies a complex pathology and the Smith complication classification scheme creates a language to discuss treatment of known complications of growth-friendly spine surgery. Although there is an association between more advanced C-EOS and Smith complications, there does not appear to be a correlation that can satisfy a risk stratification at this time. LEVEL OF EVIDENCE: Level II.


Assuntos
Cifose/complicações , Complicações Pós-Operatórias/etiologia , Próteses e Implantes/efeitos adversos , Escoliose/classificação , Escoliose/complicações , Idade de Início , Criança , Seguimentos , Humanos , Cifose/congênito , Cifose/cirurgia , Sistema de Registros , Reoperação , Estudos Retrospectivos , Escoliose/cirurgia , Síndrome
18.
Ann Clin Psychiatry ; 30(3): 168-174, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-30028890

RESUMO

BACKGROUND: The classification of sexuality-related conditions and conditions relating to transgender identity has generated controversy. Growing evidence suggests that the distress and dysfunction reported by transgender individuals is more likely associated with social exclusion, stigmatization, and violence than as a result of gender incongruence per se. Our study aimed to explore the experiences of South African transgender individuals through: 1) their self-reported accounts of gender incongruence, and 2) associations between their experiences of social exclusion and violence, and their reports of psychological distress and dysfunction during adolescence. METHODS: Our sample of 57 South African transgender adults completed a structured interview, in English, including questions related to experiences of gender incongruence duration, distress, dysfunction, social exclusion, and violence. RESULTS: Many transgender individuals reported having experienced an intense desire to be a different gender, with all noting discomfort with several aspects of their bodies. Importantly, psychological distress and dysfunction were significantly associated with social exclusion (most commonly perpetuated by family and friends) and not with gender incongruence per se. CONCLUSIONS: This study adds to the growing evidence that experiences of social exclusion play a significant role in the psychological distress and dysfunction reported by transgender persons.


Assuntos
Isolamento Social , Estresse Psicológico/psicologia , Pessoas Transgênero/psicologia , Pessoas Transgênero/estatística & dados numéricos , Adulto , Feminino , Humanos , Classificação Internacional de Doenças , Entrevistas como Assunto , Masculino , Autorrelato , África do Sul
19.
BMC Med Ethics ; 19(1): 72, 2018 07 11.
Artigo em Inglês | MEDLINE | ID: mdl-29996823

RESUMO

BACKGROUND: Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? METHODS: 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. RESULTS: Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant's consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. CONCLUSIONS: These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies.


Assuntos
Bancos de Espécimes Biológicos/ética , Genômica/ética , Consentimento Livre e Esclarecido , Esquizofrenia/genética , Adulto , Bancos de Espécimes Biológicos/estatística & dados numéricos , Pesquisa Biomédica/ética , Estudos de Casos e Controles , Linhagem Celular , Etnicidade , Feminino , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , África do Sul , Adulto Jovem
20.
Aust Health Rev ; 42(2): 218-226, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28263705

RESUMO

Objective Aboriginal Community-Controlled Health Services (ACCHSs) deliver comprehensive, culturally appropriate primary health care to Aboriginal people and communities. The published literature acknowledging and supporting the roles of ACCHSs in improving Aboriginal health is limited. This paper seeks to collate and analyse the published evidence supporting the contribution of ACCHSs to improving the health of Aboriginal people. Methods A conceptual framework for exploring the contribution of ACCHSs was developed, drawing on the literature on the core functions of ACCHSs and the components of quality primary health care. This framework was used to structure the search strategy, inclusion criteria and analysis of the review. Results ACCHSs contribute to improving the health and well being of Aboriginal peoples through several pathways, including community controlled governance, providing employment and training, strengthening the broader health system and providing accessible, comprehensive primary health care. Conclusions ACCHSs make a range of important contributions to improving the health of Aboriginal peoples that are under-acknowledged. Consideration of the different ways ACCHSs contribute to improving Aboriginal health is of value in the design and evaluation of programs and policies that aim to improve the health of Aboriginal peoples. What is known about the topic? Aboriginal communities have long argued the vital role of ACCHSs in improving Aboriginal health. What does this paper add? This paper provides a comprehensive collation and analysis of the evidence supporting the contributions ACCHSs are making to improving Aboriginal health. What are the implications for practitioners? The conceptual framework and findings outlined in this paper illustrate that ACCHSs are making important contributions to improving Aboriginal health through several pathways. This information can be used to ensure actions to improve Aboriginal health are appropriate and effective. There are important gaps in the literature that researchers need to address.


Assuntos
Serviços de Saúde Comunitária , Acessibilidade aos Serviços de Saúde , Serviços de Saúde do Indígena , Havaiano Nativo ou Outro Ilhéu do Pacífico , Emprego , Política de Saúde , Nível de Saúde , Humanos , Relações Interinstitucionais , Modelos Organizacionais , Atenção Primária à Saúde , Determinantes Sociais da Saúde
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