Relationships matter!:Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities

Background Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision-making processes

Experiences of people with intellectual disability and dementia:A systematic review

Background Dementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia. Method This systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, PsychInfo and Social Services Abstracts. Results Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments. Conclusion The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.Output Status: Forthcoming/Available Onlin

Visualizing Constraints and Awareness of Submarine Maneuverability and Detectability

AbstractSubmariners must balance mission imperatives with own ship safety and operational security. A prime measure of safety is avoiding collisions with other contacts, including fishing and other commercial vessels—and especially other submarines and warships. A current problem for submariners is maintaining the submarine's manueverability when factors change, including the density of surrounding contacts, sea state, and weather/visibility, which impose constraints on the submarine's manueverability. These factors can also increase the submarine's detectability if the situation requires longer or more frequent periscope views to maintain situation awareness. Having visualization tools that help submariners manage manueverability and detectability aids decision making by identifying recommended boundaries in the area of operation and recommended patterns of periscope operation. To provide the tools submariners need, we designed and developed several visual aids that identify recommended courses of action for various situations, which promotes greater awareness for future missions. These visual aids were formulated from a combination of Knowledge Elicitation (KE) sessions and cognitive task analysis with development of an abstraction hierarchy and a decision ladder. Our visual aids consist of mapping out a submariner's area of operation by highlighting an optimized path the submariner can take when trying to avoid collisions. By having the ability to visualize these important factors and metrics that are involved in lowering a submarine's detectability while still promoting safety helps increase a submariner's awareness while also providing continuous improvement through risk management and mitigation for risky situations

Developmental arrest in Drosophila melanogaster caused by mitochondrial DNA replication defects cannot be rescued by the alternative oxidase

The xenotopic expression of the alternative oxidase AOX from the tunicate Ciona intestinalis in diverse models of human disease partially alleviates the phenotypic effects of mitochondrial respiratory chain defects. AOX is a non-proton pumping, mitochondrial inner membrane-bound, single-subunit enzyme that can bypass electron transport through the cytochrome segment, providing an additional site for ubiquinone reoxidation and oxygen reduction upon respiratory chain overload. We set out to investigate whether AOX expression in Drosophila could counteract the effects of mitochondrial DNA (mtDNA) replication defects caused by disturbances in the mtDNA helicase or DNA polymerase gamma. We observed that the developmental arrest imposed by either the expression of mutant forms of these enzymes or their knockdown was not rescued by AOX. Considering also the inability of AOX to ameliorate the phenotype of tko(25t), a fly mutant with mitochondrial translation deficiency, we infer that this alternative enzyme may not be applicable to cases of mitochondrial gene expression defects. Finding the limitations of AOX applicability will help establish the parameters for the future putative use of this enzyme in gene therapies for human mitochondrial diseases.Peer reviewe

Desafios à gestão participativa na perspectiva dos gestores e conselheiros da Reserva Biológica Marinha do Arvoredo, Santa Catarina

Unidades de conservação (UCs) são áreas legalmente protegidas com limites definidos cuja função é a conservação da biodiversidade. Configuram-se como um instrumento de política pública na área ambiental e uma estratégia governamental de ordenamento territorial. A participação social na implementação das UCs é garantida por lei e organizada em arranjos institucionais específicos, denominados conselhos gestores. Entretanto, ainda são muitos os desafios para se alcançar a plena gestão participativa desses espaços protegidos. O objetivo do estudo que dá suporte a este artigo foi analisar a participação social desenvolvida no processo de criação e funcionamento do conselho consultivo da Reserva Biológica (REBIO) Marinha do Arvoredo, Santa Catarina. Para tanto, foram utilizadas metodologias de análise qualitativa. A coleta de dados envolveu a pesquisa bibliográfica e documental e a aplicação de entrevistas semiestruturadas com interlocutores selecionados (conselheiros e gestores). As informações documentais, sobretudo as atas das reuniões, revelaram aspectos importantes sobre o funcionamento do conselho, incluindo os assuntos tratados e a dinâmica do fórum. As entrevistas permitiram analisar o funcionamento do conselho na visão dos participantes, apontando os aspectos sobre os quais há mais ou menos convergência. A análise integrada dos dados coletados teve foco nos principais desafios ao pleno funcionamento do conselho, identificados e agrupados nos seguintes temas: falta de representatividade, baixa efetividade e falta de um entendimento claro sobre o papel do conselho. A partir desses apontamentos, são apresentadas algumas sugestões para o aperfeiçoamento desse processo participativo, entretanto, é fundamental que os integrantes do conselho assumam o papel central no debate sobre o foco dessa participação.Protected areas (PAs) are locations legally protected whose main function is the conservation of biodiversity. They are an environmental policy instrument and a governmental strategy of territorial planning. Social participation in the implementation of PAs is guaranteed by law and organized into specific institutional arrangements, called councils. However, there are still many challenges to achieve a full participative management of these protected areas. The objective of the study that supports this article was to analyze the social participation developed in the process of the creation and functioning of the advisory council of the Arvoredo Marine Biological Reserve (REBIO), Santa Catarina.  In order to achieve the objectives of this study, qualitative analysis methodologies were used. Data collection involved bibliographical and documental research and semi-structured interviews with selected interlocutors (counselors and managers). The documental information, especially the minutes of the meetings, revealed important aspects of the functioning of the council, including the issues and the dynamics of the forum. The interviews allowed to analyze the functioning of the council from the view of the participants, pointing out the aspects about which there is more or less convergence. The integrated analysis of the data collected focused on the main challenges to have the full functioning of the council, identified and grouped in the following themes: lack of representativeness, low effectiveness and lack of clear understanding of the role of the council. From these notes, some suggestions for the improvement of this participatory process are presented, however, it is fundamental that the members of the council assume the central role in the debate about the focus of this participation

Couples with intellectual disability where one partner has dementia – a scoping review exploring relationships in the context of dementia and intellectual disability

Relationships and marriages between couples with intellectual disability are to be celebrated, as is the longer life expectancy now enjoyed by many with intellectual disability. However, dementia disproportionately affects people with intellectual disability, especially people with Down's syndrome. Research into experiences of couples without intellectual disability who are affected by dementia suggests that a relational perspective provides health and social care professionals with information to support the wellbeing of both partners. This dyadic perspective is missing for couples with an intellectual disability where one partner has dementia. There is currently no evidence base informing how each partner may best be supported. This scoping review, with three separate searches, aims to address this gap. The first search sought to establish if any studies had explored the experiences of couples with intellectual disability where one partner has dementia. After determining that no studies have been published to date, the review explores what is known about relationships in the context of dementia (N = 8) and in the context of intellectual disability (N = 10), in second and third searches. Different ways to approach care and support in relationships among partners, staff and other family members were identified and it was evident that support could act as a facilitator as well as a barrier to people and their relationships. While the lives of couples affected by dementia appeared to remain largely private, couples with intellectual disability had a high involvement of staff and family members in their life. Potential implications for future research with couples with intellectual disability affected by dementia are discussed, highlighting the importance of exploring how couples navigate emotional complexities and changes in their relationship, while understanding that the context in which the lives of people with intellectual disability take place and relationships happen is different

Couples with intellectual disability where one partner has dementia – a scoping review exploring relationships in the context of dementia and intellectual disability

Relationships and marriages between couples with intellectual disability are to be celebrated, as is the longer life expectancy now enjoyed by many with intellectual disability. However, dementia disproportionately affects people with intellectual disability, especially people with Down's syndrome. Research into experiences of couples without intellectual disability who are affected by dementia suggests that a relational perspective provides health and social care professionals with information to support the wellbeing of both partners. This dyadic perspective is missing for couples with an intellectual disability where one partner has dementia. There is currently no evidence base informing how each partner may best be supported. This scoping review, with three separate searches, aims to address this gap. The first search sought to establish if any studies had explored the experiences of couples with intellectual disability where one partner has dementia. After determining that no studies have been published to date, the review explores what is known about relationships in the context of dementia (N = 8) and in the context of intellectual disability (N = 10), in second and third searches. Different ways to approach care and support in relationships among partners, staff and other family members were identified and it was evident that support could act as a facilitator as well as a barrier to people and their relationships. While the lives of couples affected by dementia appeared to remain largely private, couples with intellectual disability had a high involvement of staff and family members in their life. Potential implications for future research with couples with intellectual disability affected by dementia are discussed, highlighting the importance of exploring how couples navigate emotional complexities and changes in their relationship, while understanding that the context in which the lives of people with intellectual disability take place and relationships happen is different.Output Status: Forthcoming/Available Onlin

Sustained data access and tools as key ingredients to strengthening EO capacities : examples from land application perspective + powerpoint

Sustainably managing agriculture and forests is key for development, in particular in Africa, and for facing global challenges such as climate change or food security, but requires reliable information. As Earth Observation (EO) satellite data can contribute to these information needs, more and more institutes integrate this technology into their daily work. Facing ever-growing and evolving EO data sources (e.g. new satellites and sensors) and access technology (both online and via EUMETCast satellite broadcast), their applications require software tools to particularly facilitate (i) the exchange of data between the analysis tools, so users can take advantage of each tool’s strengths, and (ii) the processing and analysis of time series. A first example is the Land Surface Analysis Satellite Application Facility (LSA-SAF), that entered the second part of the Continuous Development and Operations Phase (CDOP-2), under the lead of the Portuguese Institute for Sea and Atmosphere (IPMA), in 2011. VITO, joining the LSA-SAF network for the first time and building on previous experiences (e.g. http://www.metops10.vito.be), aims to contribute by producing and delivering operational, 10-daily vegetation indicators based on MetOp-AVHRR. Furthermore, a software tool is developed to aid exploitation of LSA-SAF products, provisionally called “MSG Toolbox”. A second example is the AGRICAB project, that receives funding from the European Union’s 7th Framework Programme for Research (FP7) and aims to build a comprehensive framework for strengthening capacities in the use of EO for agriculture and forestry management in Africa. This framework starts from sustained access to relevant satellite data (e.g. CBERS-3, DEIMOS) and derived products, such as those from the European Copernicus Global Land service, the 15 year time series of SPOT-VEGETATION (and its transition to PROBA-V) and Meteosat Second Generation (e.g. rainfall estimates). It combines local and EO data with tools and training into applications on crop monitoring, area statistics and yield forecasting, livestock insurance and modelling, forest and fire management, all fitted to the needs of stakeholders in the African focus countries

Perspectives on Extended-Release Naltrexone Induction among Patients Living with HIV and Opioid Use Disorder: A Qualitative Analysis

BACKGROUND: The CHOICES study randomized participants with HIV and opioid use disorder (OUD) to HIV clinic-based extended-release naltrexone (XR-NTX), which requires complete cessation of opioid use, versus treatment-as-usual (i.e., buprenorphine, methadone). Study participants randomized to XR-NTX were interviewed to assess their experiences with successful and unsuccessful XR-NTX induction. METHODS: Semi-structured qualitative interviews were completed with a convenience sample of study participants with HIV and OUD (n = 37) randomized to XR-NTX in five HIV clinics between 2018 and 2019. All participants approached agreed to be interviewed. Interviews were digitally recorded, professionally transcribed, and analyzed using thematic analysis. RESULTS: Participants included women (43%), African Americans (62%) and Hispanics (16%), between 27 to 69 years of age. Individuals who completed XR-NTX induction (n = 20) reported experiencing (1) readiness for change, (2) a supportive environment during withdrawal including comfort medications, and (3) caring interactions with staff. Four contrasting themes emerged among participants (n = 17) who did not complete induction: (1) concern and anxiety about withdrawal including past negative experiences, (2) ambivalence about or reluctance to stop opioids, (3) concerns about XR-NTX effects, and (4) preferences for other medications. CONCLUSIONS: The results highlight opportunities to improve initiation of XR-NTX in high-need groups. Addressing expectations regarding induction may enhance XR-NTX initiation rates. Trial Registration ClinicalTrials.gov: NCT03275350. Registered September 7, 2017. https://clinicaltrials.gov/ct2/show/NCT03275350?term=extended+release+naltrexone&cond=Opioid+Use

Development of a Mind Body Program for Obese Knee Osteoarthritis Patients with Comorbid Depression

Knee osteoarthritis (OA) is the most common joint disorder in the U.S. and a leading cause of disability. Depression and obesity are highly comorbid among knee OA patients, and the combination of obesity and depression is associated with decreased physical activity, higher pain and disability, and more rapid cartilage degradation. Depression, obesity and OA exacerbate one another and share a common pathophysiology involving systemic inflammation and pro-inflammatory cytokines, reflecting a complex mind-body interaction. Current treatments for knee OA offer little to no benefit over placebo, and do not emphasize mind-body practices or physical activity to target the underlying pathophysiology. Mind-body interventions to lessen depressive symptoms and increase physical activity offer the ability to target biological, mechanical and psychological mechanisms of OA progression. Our long-term goals are to evaluate the mechanisms by which the Relaxation Response Resiliency Program (3RP) delivered via secure telehealth, and adapted for patients with depression, obesity and knee OA (GetActive-OA) promotes increases in physical activity and improved knee health. We hypothesize that the synergistic interaction between mindfulness, adaptive thinking, positive psychology and healthy living skills of the GetActive-OA will slow the progression of symptomatic knee OA by reducing pro-inflammatory cytokine expression and promoting optimal mechanical loading of the cartilage. Here we present the protocol for a mixed methods study that will adapt the 3RP for the needs of knee OA patients with depression and obesity with a focus on increasing physical activity (GetActive-OA), and iteratively maximize the feasibility, credibility and acceptability of the programs and research procedures