Exploring ethical practice in NGOS on mental health research in Malawi.

In recent years, an increasing trend in mental health research has been to collaborate with non-governmental organizations [NGOs] and their constituents. However, ethical difficulties can arise as a result of such partnerships. Understanding the ethics-related practices of NGOs engaged in mental health research is therefore critical. This study addressed these questions in a Malawian context. The goal of this study was to investigate NGO's ethical practices in relation to mental health research by identifying characteristics that influence ethical practices and investigating staff conceptualization of ethics and mental health. Twenty individuals who work for different local NGOs took part in one-on-one interviews or a workshop about their engagement in diverse research initiatives. They pinpointed the areas that needed improvement, as well as the challenges and chances to create partnerships and increase research capability. The diversity in conceptualizing mental health was a key influence on research practices, with heterogeneity in definitions reflected in the use of cultural, spiritual, behavioural, or medical terms. Notably, there was also a greater emphasis on procedural ethics than ethics-in-practice. Collaboration dynamics and limited staffing capacity were cited as major ethical practice considerations. Each of these elements have an impact on NGOs' ethical behaviour when conducting mental health research. Participants in the study saw engagement with notions of both ethics and mental health as lacking or rudimentary in their institutions and felt that they needed to be improved through capacity building and stronger research involvement.

Interpreter-mediated neuropsychological assessment: Clinical considerations and recommendations from the European Consortium on Cross-Cultural Neuropsychology (ECCroN).

OBJECTIVE: With increasing international migration, societies have become increasingly diverse worldwide. Although neuropsychological assessment is influenced by several diversity characteristics, language barriers have repeatedly been identified as one of the main challenges to cross-cultural neuropsychological assessment in migrant populations. Importantly, neuropsychologists are often required to conduct interpreter-mediated neuropsychological assessments without any graduate training or continuing education on the topic. To address this gap, the objective of this paper is to provide guidelines for interpreter-mediated neuropsychological assessment. METHOD: A European Consortium on Cross-Cultural Neuropsychology (ECCroN) task force conducted a conceptual literature review and provided recommendations for good practice and working principles to inform the preparation and administration of interpreter-mediated assessments. RESULTS: ECCroN takes the position that it is the responsibility of neuropsychologists, as well as the institutions or organizations that employ them, to ensure effective communication between themselves and their patients. This may be accomplished by preparing for an interpreter-mediated assessment by engaging an appropriate interpreter, which in most circumstances will be a professional in-person interpreter speaking the same language(s) or dialect(s) as the patient, and considering practical, language, and cross-cultural issues. During the assessment, reasonable steps should be taken to proactively manage the proceedings and adopt a communication style that facilitates effective patient-directed communication, and when interpreting test data and determining formulations and diagnoses, the limitations of interpreter-mediated assessment should be carefully considered. CONCLUSION: Adhering to the provided recommendations and working principles may help neuropsychologists provide competent interpreter-mediated neuropsychological assessments to linguistically diverse patients.

Assessment of Dementia in Minority Ethnic Groups in Scotland: Results of a Survey of Cognitive Specialists.

OBJECTIVE: Minority ethnic groups (MEGs) in Europe receive suboptimal dementia evaluation, yet related research in Scotland is lacking. This research examined the evaluation of dementia in MEGs in Scotland and compared it with previous research to highlight the changes in the clinical evaluation of dementia over the decade. DESIGN AND SETTING: A self-administered survey was created online and emailed to 14 Heads of the boards under the Scottish National Health Service and dementia-associated settings and organizations. RESULTS: Most surveyed centers (85.6%) received MEG referrals. Although 92.9% of the centers used professional translators when needed, 85.7% thought assessing dementia in MEGs was difficult, mostly due to the suitability of test instruments and rating scales and patients' linguistic abilities. Very few found their skills to be good in evaluating MEGs. There was no mention of specialized dementia services for MEGs. CONCLUSIONS: The lack of culturally appropriate instruments and specialized dementia services reveals that the services are not ready to meet the demand for evaluating patients from diverse cultural and language backgrounds. Inadequate clinical evaluation may lead to misdiagnoses. Therefore, although significant work has been carried out in the past few years, improvements must be continued to enhance the current practices and apply suitable evaluation methods for MEGs.

Review: Cultural adaptations to psychosocial interventions for families with refugee/asylum-seeker status in the United Kingdom - a systematic review.

BACKGROUND: Young people with refugee or asylum-seeker status (R/AS) often present with complex mental health needs, in the context of traumatic life experiences. Generic mental health services in the United Kingdom (UK) may be ill-equipped to manage the unique experiences of these young people. Culturally adapted interventions (CAI) could provide a culturally sensitive approach to mental health support for refugee children experiencing difficult symptoms. A systematic review was conducted to determine the different types of cultural adaptation in the included studies, and to determine the efficacy of CAIs in comparison to generic treatment. METHODS: Systematic searches of eleven databases were completed in December 2020. Any psychosocial interventions conducted in the United Kingdom aimed at providing mental health support for refugee young people and families were included. This was to ensure the potential inclusion of all studies regardless of their adherence to the traditional framework of assessment and intervention in high-income countries, for example randomised control trials. RESULTS: Eleven studies of varying methodology, participant group, intervention type and outcome measures were included in this review. Studies used a variety of cultural adaptations including surface-level and deep-level adaptations. Studies showed some support for the use of CAIs with young people with R/AS, with varying degrees of symptom reduction. It was not possible to compare the effectiveness of CAIs against 'treatment-as-usual', nor to determine the effectiveness of different CAI components. CONCLUSIONS: Whilst there is evidence for the use of CAIs with R/AS young people, the heterogeneity between studies limits the generalisability of these results. The available research is not sufficient to provide conclusive evidence of the use of CAIs over 'treatment-as-usual'. Research and clinical implications are highlighted. Future research could examine the most effective components of CAIs and aim to increase the evidence base of interventions for young people and families with R/AS.

Mental Health Gap Action Programme intervention Guide (mhGAP-IG) for Child and Adolescent Mental Health in Low- and Middle-Income Countries (LMIC): A Systematic Review.

BACKGROUND: The Mental Health Gap Action Programme (mhGAP) supports engagement of non-specialists in mental health services in Low- and Middle-Income countries. Given this aim, assessment of the effectiveness of approaches under its remit is warranted. AIMS: We evaluated mhGAP approaches relating to child and adolescent mental health, focusing on provider / child outcomes, and barriers / facilitators of implementation. METHODS: Thirteen databases were searched for reviews and primary research on mhGAP roll out for child and adolescent mental health. RESULTS: Twelve studies were reviewed. Provider-level outcomes were restricted to knowledge gains, with limited evidence of other effects. Child-level outcomes included improved access to care, enhanced functioning and socio-emotional well-being. Organisational factors, clients and providers? attitudes and expectations, and transcultural considerations were barriers. CONCLUSIONS: Further attention to the practical and methodological aspects of implementation of evaluation may improve the quality of evidence of the effectiveness of approaches under its remit.

Memory markers in the continuum of the Alzheimer's clinical syndrome.

BACKGROUND: The individual and complementary value of the Visual Short-Term Memory Binding Test (VSTMBT) and the Free and Cued Selective Reminding Test (FCSRT) as markers to trace the AD continuum was investigated. It was hypothesised that the VSTMBT would be an early indicator while the FCSRT would inform on imminent progression. METHODS: Healthy older adults (n=70) and patients with mild cognitive impairment (MCI) (n=80) were recruited and followed up between 2012 and 2017. Participants with at least two assessment points entered the study. Using baseline and follow-up assessments four groups were defined: Older adults who were healthy (HOA), with very mild cognitive but not functional impairment (eMCI), and with MCI who did and did not convert to dementia (MCI converters and non-converters). RESULTS: Only the VSTMBT predicted group membership in the very early stages (HOA vs eMCI). As the disease progressed, the FCSRT became a strong predictor excluding the VSTMB from the models. Their complementary value was high during the mid-prodromal stages and decreased in stages closer to dementia. DISCUSSION: The study supports the notion that neuropsychological assessment for AD needs to abandon the notion of one-size-fits-all. A memory toolkit for AD needs to consider tools that are early indicators and tools that suggest imminent progression. The VSTMBT and the FSCRT are such tools.

Cross-cultural neuropsychological assessment in Europe: Position statement of the European Consortium on Cross-Cultural Neuropsychology (ECCroN).

Over the past decades European societies have become increasingly diverse. This diversity in culture, education, and language significantly impacts neuropsychological assessment. Although several initiatives are under way to overcome these barriers - e.g. newly developed and validated test batteries - there is a need for more collaboration in the development and implementation of neuropsychological tests, such as in the domains of social cognition and language.To address these gaps in cross-cultural neuropsychological assessment in Europe, the European Consortium on Cross-Cultural Neuropsychology (ECCroN) was established in 2019.ECCroN recommends taking a broad range of variables into account, such as linguistic factors, literacy, education, migration history, acculturation and other cultural factors. We advocate against race-based norms as a solution to the challenging interpretation of group differences on neuropsychological tests, and instead support the development, validation, and standardization of more widely applicable/cross-culturally applicable tests that take into account interindividual variability. Last, ECCroN advocates for an improvement in the clinical training of neuropsychologists in culturally sensitive neuropsychological assessment, and the development and implementation of guidelines for interpreter-mediated neuropsychological assessment in diverse populations in Europe.ECCroN may impact research and clinical practice by contributing to existing theoretical frameworks and by improving the assessment of diverse individuals across Europe through collaborations on test development, collection of normative data, cross-cultural clinical training, and interpreter-mediated assessment.

Maximising impactful, locally relevant global mental health research conducted in low and middle income country settings: ethical considerations.

Background: Achieving ethical and meaningful mental health research in diverse global settings requires approaches to research design, conduct, and dissemination that prioritise a contextualised approach to impact and local relevance. Method: Through three case studies presented at the 2021 Global Forum on Bioethics in Research meeting on the ethical issues arising in research with people with mental health conditions, we consider the nuances to achieving ethical and meaningful mental health research in three diverse settings. The case studies include research with refugees Rwanda and Uganda; a neurodevelopmental cohort study in a low resource setting in India, and research with Syrian refugees displaced across the Middle East. Results: Key considerations highlighted across the case studies include how mental health is understood and experienced in diverse contexts to ensure respectful engagement with communities, and to inform the selection of contextually-appropriate and feasible research methods and tools to achieve meaningful data collection.  Related to this is a need to consider how communities understand and engage with research to avoid therapeutic misconception, exacerbating stigma, or creating undue inducement for research participation, whilst also ensuring meaningful benefit for research participation. Central to achieving these is the meaningful integration of the views and perspectives of local stakeholders to inform research design, conduct, and legacy. The case studies foreground the potential tensions between meeting local community needs through the implementation of an intervention, and attaining standards of scientific rigor in research design and methods; and between adherence to procedural ethical requirements such as ethical review and documenting informed consent, and ethical practice through attention to the needs of the local research team. Conclusions: We conclude that engagement with how to achieve local relevance and social, practice, and academic impact offer productive ways for researchers to promote ethical research that prioritises values of solidarity, inclusion, and mutual respect.

Un modelo para favorecer la ética y las buenas prácticas en investigación global e intercultural: aplicaciones en méxico y chile / A model to promote ethics and good practices in global and intercultural research: applications in méxico and chile / Um modelo para favorecer a ética e as boas práticas em pesquisa global e intercultural: aplicativos no méxico e no chile

Resumen La investigación intercultural plantea desafíos éticos complejos. Por ello, en el año 2019 se desarrolló un modelo de análisis de conflictos éticos en colaboración con más de 200 investigadores de más de 30 países. Este modelo parece pertinente para América Latina. El modelo propone que los desafíos éticos (y sus soluciones) dependen de cuatro factores presentes durante todo el proceso de investigación: el lugar donde se realiza la investigación, las personas involucradas, los principios éticos relevantes y los precedentes de investigaciones pasadas. En este artículo hacemos un análisis de la aplicabilidad de dicho modelo mediante dos análisis de casos referidos a la investigación con pueblos originarios en Chile y al trabajo con latinos migrantes en la frontera México-Estados Unidos.

Abstract Intercultural research poses critical ethical challenges. In 2019, in collaboration with more than 200 researchers from more than 30 countries, a group of researchers developed an ethical conflict analysis model that seems relevant for Latin America. The model proposes a flexible frame of reference where ethical challenges (and their solutions) depend on four factors present throughout the research process: the place where the research is carried out, the people involved, the relevant ethical principles, and the precedents from previous research. This article discusses the applicability of this model through two case analyses: one study with Indigenous peoples in Chile and the other with Latin-American migrants on the border between Mexico and US.

Resumo A pesquisa intercultural apresenta desafios éticos complexos. Por isso, em 2019, foi desenvolvido um modelo de análise de conflitos éticos em colaboração com mais de 200 pesquisas de mais de 30 países. Esse modelo parece pertinente para a América Latina, pois propõe que os desafios éticos (e suas soluções) dependem de quatro fatores presentes durante todo o processo de pesquisa: o lugar onde a pesquisa é realizada, as pessoas envolvidas, os princípios éticos relevantes e os precedentes de pesquisa passadas. Neste artigo, fazemos uma análise da aplicabilidade desse modelo mediante duas análises de casos referidos à pesquisa com povos originários no Chile e ao trabalho com latinos migrantes na fronteira México-Estados Unidos.

The effect of illiteracy on performance in screening tools for dementia: A meta-analysis.

INTRODUCTION: Research indicates that many tools designed for screening dementia are affected by literacy level. The objective of this study was to estimate the overall effects of this confounding factor. A meta-analysis was conducted to evaluate differences in performance in dementia screening tools between literate and illiterate individuals. METHOD: Electronic databases were searched from 1975 to June 2021 to identify empirical studies examining performance in dementia screening tools in literate and illiterate individuals over 50 years old. Data for effect sizes, participant demographic information, and study information were extracted. RESULTS: We identified 27 studies methodologically suitable for meta-analysis. Multi-level random-effects modeling demonstrated a significant overall effect, with literate participants scoring significantly higher than illiterate participants (g = -1.2, 95% CI = -1.47, -0.95, p < .001). Moderator analyses indicated significant effects of test type and the presence of cognitive impairment on the extent of the difference in performance between literate and illiterate participants. The difference in performance between groups was smaller in screening tests modified for illiterate individuals (p < .01), and in individuals with cognitive impairment (p < .001). CONCLUSIONS: Our findings substantiate the unsuitability of many dementia screening tools for individuals who are illiterate. The results of this systematic review and meta-analysis emphasize the need for the development and validation of tools that are suitable for individuals of all abilities.

The striatum, the hippocampus, and short-term memory binding: Volumetric analysis of the subcortical grey matter's role in mild cognitive impairment.

BACKGROUND: Deficits in short-term memory (STM) binding are a distinguishing feature of preclinical stages leading to Alzheimer's disease (AD). However, the neuroanatomical correlates of conjunctive STM binding are largely unexplored. Here we examine the possible association between the volumes of hippocampi, parahippocampal gyri, and grey matter within the subcortical structures - all found to have foci that seemingly correlate with basic daily living activities in AD patients - with cognitive tests related to conjunctive STM binding. MATERIALS AND METHODS: Hippocampal, thalamic, parahippocampal and corpus striatum volumes were semi-automatically quantified in brain magnetic resonance images from 25 cognitively normal people and 21 patients with Mild Cognitive Impairment (MCI) at high risk of AD progression, who undertook a battery of cognitive tests and the short-term memory binding test. Associations were assessed using linear regression models and group differences were assessed using the Mann-Whitney U test. RESULTS: Hippocampal and parahippocampal gyrus volumes differed between MCI and control groups. Although the grey matter volume in the globus pallidus (r = -0.71, p < 0.001) and parahippocampal gyry (r = -0.63, p < 0.05) correlated with a STM binding task in the MCI group, only the former remained associated with STM binding deficits in MCI patients, after correcting for age, gender and years of education (ß = -0.56,P = 0.042) although with borderline significance. CONCLUSIONS: Loss of hippocampal volume plays no role in the processing of STM binding. Structures within the basal ganglia, namely the globus pallidus, could be part of the extrahippocampal network supporting binding. Replication of this study in large samples is now needed.

Refining memory assessment of elderly people with cognitive impairment: Insights from the short-term memory binding test.

Alzheimer's disease (AD) affects temporary memory for bound features more remarkably than for individual features. Such selective impairments manifest from presymptomatic through dementia stages via titration procedures. A recent study suggested that without titration and with high memory load the binding selectivity may disappear in people at risk of AD such as those with Mild Cognitive Impairment (MCI). We compared data from two studies on temporary binding which assessed people with MCI and controls using different memory loads (2 or 3 items). Selective binding impairments were found in MCI, but relative to controls, such selectivity was contingent upon memory load (i.e., present with 2 items). Further analysis with MCI people who tested positive to neuroimaging biomarkers (i.e., hippocampal atrophy) confirmed that this specific binding impairments are a feature of prodromal AD. The temporary binding task has been recently suggested by consensus papers as a potential screening tool for AD. The results presented here inform on task properties that can maximize the reliability of this new assessment tool for the detection of memory impairments in prodromal cases of AD.

Cross-cultural representations of dementia: an exploratory study.

BACKGROUND: An ageing global population will bring a significant increase in the prevalence of dementia, with the need for a collaborative international effort to combat this public health challenge being increasingly recognised. To be successful, this cooperation must be sensitive to the different cultural environments in which dementia is positioned, which shape the variety of clinical, political and social approaches to the condition worldwide. The aim of this project is to examine the social representations of dementia among people from three countries with different health care systems. More specifically, to investigate the internal structure of the social representations of dementia within the framework of the structural approach among British, American and Chinese lay-people. METHODS: A sample of 194 participants completed a free association task and a justification task in response to the stimulus word 'dementia'. The data was subsequently analysed within the framework of the structural approach to social representations, using prototypical analysis. RESULTS: The American group's unique elements were nearly exclusively concerned with physical and cognitive decline, and elements referring to care were focused on external support, namely nursing homes. In the Chinese group, there were several elements referring to behaviour, but a much greater emphasis on cognition than predicted by the literature. Elements concerning care were, as expected, focused on the family. In the British group, there was also a cognitive focus, but this was accompanied by elements which portrayed the experience of the condition from the perspective of those affected, and a reference to relative well-being in the context of care. CONCLUSIONS: Social representation theory proved to be a viable method in gathering data on cross-cultural differences in how dementia is understood and approached. The current study demonstrated how the conceptualisation of the condition's relationship with the cognitive, behavioural and affective dimensions might have an impact on the structure and form of care for those living with dementia in each culture.

Visuospatial bootstrapping: Binding useful visuospatial information during verbal working memory encoding does not require set-shifting executive resources.

Immediate serial recall of digits is better when the digits are shown by highlighting them in a familiar array, such as a phone keypad, compared with presenting them serially in a single location, a pattern referred to as "visuospatial bootstrapping." This pattern implies the establishment of temporary links between verbal and spatial working memory, alongside access to information in long-term memory. However, the role of working memory control processes like those implied by the "Central Executive" in bootstrapping has not been directly investigated. Here, we report a study addressing this issue, focusing on executive processes of attentional shifting. Tasks in which information has to be sequenced are thought to be heavily dependent on shifting. Memory for digits presented in keypads versus single locations was assessed under two secondary task load conditions, one with and one without a sequencing requirement, and hence differing in the degree to which they invoke shifting. Results provided clear evidence that multimodal binding (visuospatial bootstrapping) can operate independently of this form of executive control process.

Refining understanding of working memory buffers through the construct of binding: Evidence from a single case informs theory and clinical practise.

Binding operations carried out in working memory enable the integration of information from different sources during online performance. While available evidence suggests that working memory may involve distinct binding functions, whether or not they all involve the episodic buffer as a cognitive substrate remains unclear. Similarly, knowledge about the neural underpinnings of working memory buffers is limited, more specifically regarding the involvement of medial temporal lobe structures. In the present study, we report on the case of patient KA, with developmental amnesia and selective damage to the whole hippocampal system. We found that KA was unable to hold shape-colours associations (relational binding) in working memory. In contrast, he could hold integrated coloured shapes (conjunctive binding) in two different tasks. Otherwise, and as expected, KA was impaired on three relational memory tasks thought to depend on the hippocampus that are widely used in the early detection of Alzheimer's disease. Our results emphasize a dissociation between two binding processes within working memory, suggesting that the visuo-spatial sketchpad could support conjunctive binding, and may rely upon a large cortical network including sub-hippocampal structures. By contrast, we found evidence for a selective impairment of relational binding in working memory when the hippocampal system is compromised, suggesting that the long-term memory deficit observed in amnesic patients may be related to impaired short-term relational binding at encoding. Finally, these findings may inform research on the early detection of Alzheimer's disease as the preservation of conjunctive binding in KA is in sharp contrast with the impaired performance demonstrated very early in this disease.

Transient involuntary mirror writing triggered by anxiety.

Mirror writing (MW) has mainly been observed in left-hemisphere-damaged patients writing with the left hand. This study evaluated the presence of MW in 24 patients with mild cognitive impairment (MCI). We found that MW is not a typical feature of MCI. However, one woman (FC), mislabeled initially with MCI but in fact affected by anxiety, showed florid MW when writing with her left hand, which resolved as her anxiety receded. This case study supports anecdotal reports of MW triggered by anxiety, and the features of FC's performance indicate a motor rather than a perceptual basis for the phenomenon.

The cumulative semantic interference effect in normal and pathological ageing.

People affected by mild cognitive impairment (MCI), a precursor of Alzheimer's Disease, present with impairments in picture naming, a lexical/semantic task which rests on the activation of perceptual, semantic, and phonological representations. The poor performance of MCI individuals in picture naming has been accounted for in terms of deficits of either the perceptual, semantic, or phonological stages. To disentangle the source of this deficit we compared the cumulative semantic interference effect (Howard et al., 2006. Cognition. 100, 464-482.) and the repetition priming effect of a group of people with MCI to that of a group of healthy elderly participants and with a group of healthy young participants. The cumulative semantic interference effect defines a linear increase in the picture naming reaction times which is function of the already named pictures belonging to the same semantic category to which the named picture belongs. The repetition priming effect refers to an increase in performance for repeated items compared to unrepeated items. Results showed that whereas the cumulative semantic interference effect was present in the healthy elderly and young samples, it was absent in the MCI sample; instead, all groups showed comparable repetition priming effects. This pattern of results suggests that the impairment in picture naming exhibited by MCI individuals is due to an inefficient semantic access.