Personal Assistants and Collaborative Decision Making: Promoting a Better Balance of Autonomy and Well-Being for Adults with Moderate, Mild, and Borderline Mental Retardation

Autonomy is a core value of American tradition and is promoted in health care through the doctrine of informed consent. The notion underlying informed consent is that patients should have the right to decide, and are often in the best position to know, what will enhance their own well-being. Although this ethic has been extended to incompetent patients, by employing surrogate decision making, providing surrogate decision makers for adults with moderate, mild, and borderline mental retardation ("M-BMR"), who could potentially make their own decisions if adequate supports were offered, unreasonably restricts the autonomy of such individuals and often results in disregard for the patients' human dignity.This thesis recommends that health care institutions provide a personal assistant for all health care visits involving adults with M-BMR. In her role as an advocate for the patient, the personal assistant would offer a less restrictive means of promoting the patient's autonomy in medical decision making than has limited guardianship, thus furthering the goals of guardianship reform that limited guardianship has been unable to do. Serving as an educator and translator, the personal assistant would provide a means to equalize the patient's opportunity to understand the diagnosis, treatment options, and risks and benefits of those treatments. Alternatively, in cases where a surrogate decision maker is required, the personal assistant would aid in equalizing the patient's opportunity to understand what is happening during medical procedures by ensuring continued communication with the patient with M-BMR. Finally, having training in ethics, the personal assistant would foster a collaborative approach to medical decision making that recognizes the importance of incorporating both the physician's experience and knowledge and the family member or caregiver's unique understanding of the patient in the medical decision. Together, the personal assistant and the collaborative decision making approach will enhance discussion between the physician, patient, and family member or caregiver, thereby helping balance the autonomy and the well-being of the patient with M-BMR, while also ensuring that the patient's dignity is respected

Differences in Cognitive Flexibility Within the Primate Lineage and Across Human Cultures: When Learned Strategies Block Better Alternatives

By applying learned rules, humans are able to accurately solve many problems with minimal cognitive effort; yet, this sort of habit-based problem solving may readily foster a type of cognitive inflexibility termed ‘cognitive set’. Cognitive set occurs when an alternative – even more efficient – strategy is masked by a known, familiar solution. In this research, I explored how cognitive set differs between primate species and across human cultures, using a nonverbal computerized ‘LS-DS’ task, which measures subjects’ ability to depart from a three-step, learned strategy (LS) in order to adopt a more efficient, one-step, direct strategy (DS or ‘the shortcut’). First, I compared baboons’, chimpanzees’, and humans’ abilities to break cognitive set and found that all baboon and chimpanzee subjects used the DS shortcut when it became available; yet, humans exhibited a remarkable preference for the LS. Next, in an effort to elucidate how cognitive set occludes alternative strategies, I tracked human participants’ eye movements to identify whether better solutions are a) visually overlooked or b) seen but disregarded. Although human subjects saw the shortcut, they did not use it until their conceptualization of the problem constraints were altered. Lastly, to further distinguish between perceptual and conceptual influences on cognitive set, I compared shortcut-use between Westerners and the semi-nomadic Himba of northern Namibia. This study found that susceptibility to cognitive set varied across human cultures and presented further evidence that problem conceptualization, and not perceptual processing, influences individuals’ ability to break set and use the alternative. Overall, this research provides a novel comparison of cognitive flexibility within the primate lineage and across human cultures. The implications for set-promoting influences, including the potentially mechanizing problem-solving methods typical of Western education, are discussed

Changes in Frontoparietotemporal Connectivity following Do-As-I-Do Imitation Training in Chimpanzees (Pan troglodytes)

Human imitation is supported by an underlying ‘mirror system’ principally composed of inferior frontal (IF), inferior parietal (IP), and superior temporal (ST) cortical regions. Across primate species, differences in fronto-parieto-temporal connectivity have been hypothesized to explain phylogenetic variation in imitative abilities. However, if and to what extent these regions are involved in imitation in non-human primates is unknown. We hypothesized that ‘Do As I Do’ (DAID) imitation training would enhance white matter integrity within and between fronto-parieto temporal regions. To this end, four captive chimpanzees (Pan troglodytes) were trained to reproduce 23 demonstrated actions, while four age/sex-matched controls were trained to produce basic husbandry behaviors in response to manual cues. Diffusion tensor images were acquired before and after 600 minutes of training over an average of 112 days. Bilateral and asymmetrical changes in fronto-parieto-temporal white matter integrity were compared between DAID trained subjects and controls. We found that imitation trained subjects exhibited leftward shifts in both mean fractional anisotropy and tract strength asymmetry measures in brain regions within the mirror system. This is the first report of training-induced changes in white matter integrity in chimpanzees and suggests that fronto-parieto-temporal connectivity, particularly in the left hemisphere, may have facilitated the emergence of increasingly complex imitation learning abilities

Incorporating African American Veterans\u27 Success Stories for Hypertension Management: Developing a Behavioral Support Texting Protocol

BACKGROUND: Peer narratives engage listeners through personally relevant content and have been shown to promote lifestyle change and effective self-management among patients with hypertension. Incorporating key quotations from these stories into follow-up text messages is a novel way to continue the conversation, providing reinforcement of health behaviors in the patients\u27 daily lives. OBJECTIVE: In our previous work, we developed and tested videos in which African American Veterans shared stories of challenges and success strategies related to hypertension self-management. This study aims to describe our process for developing a text-messaging protocol intended for use after viewing videos that incorporate the voices of these Veterans. METHODS: We used a multistep process, transforming video-recorded story excerpts from 5 Veterans into 160-character texts. We then integrated these into comprehensive 6-month texting protocols. We began with an iterative review of story transcripts to identify vernacular features and key self-management concepts emphasized by each storyteller. We worked with 2 Veteran consultants who guided our narrative text message development in substantive ways, as we sought to craft culturally sensitive content for texts. Informed by Veteran input on timing and integration, supplementary educational and 2-way interactive assessment text messages were also developed. RESULTS: Within the Veterans Affairs texting system Annie, we programmed five 6-month text-messaging protocols that included cycles of 3 text message types: narrative messages, nonnarrative educational messages, and 2-way interactive messages assessing self-efficacy and behavior related to hypertension self-management. Each protocol corresponds to a single Veteran storyteller, allowing Veterans to choose the story that most resonates with their own life experiences. CONCLUSIONS: We crafted a culturally sensitive text-messaging protocol using narrative content referenced in Veteran stories to support effective hypertension self-management. Integrating narrative content into a mobile health texting intervention provides a low-cost way to support longitudinal behavior change. A randomized trial is underway to test its impact on the lifestyle changes and blood pressure of African American Veterans. TRIAL REGISTRATION: ClinicalTrials.gov NCT03970590; https://clinicaltrials.gov/ct2/show/NCT03970590. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/29423

'Reaching the hard to reach' - lessons learned from the VCS (voluntary and community Sector). A qualitative study.

Background The notion 'hard to reach' is a contested and ambiguous term that is commonly used within the spheres of social care and health, especially in discourse around health and social inequalities. There is a need to address health inequalities and to engage in services the marginalized and socially excluded sectors of society. Methods This paper describes a pilot study involving interviews with representatives from eight Voluntary and Community Sector (VCS) organisations . The purpose of the study was to explore the notion of 'hard to reach' and perceptions of the barriers and facilitators to accessing services for 'hard to reach' groups from a voluntary and community sector perspective. Results The 'hard to reach' may include drug users, people living with HIV, people from sexual minority communities, asylum seekers, refugees, people from black and ethnic minority communities, and homeless people although defining the notion of the 'hard to reach' is not straight forward. It may be that certain groups resist engaging in treatment services and are deemed hard to reach by a particular service or from a societal stance. There are a number of potential barriers for people who may try and access services, including people having bad experiences in the past; location and opening times of services and how services are funded and managed. A number of areas of commonality are found in terms of how access to services for 'hard to reach' individuals and groups could be improved including: respectful treatment of service users, establishing trust with service users, offering service flexibility, partnership working with other organisations and harnessing service user involvement. Conclusions: If health services are to engage with groups that are deemed 'hard to reach' and marginalised from mainstream health services, the experiences and practices for engagement from within the VCS may serve as useful lessons for service improvement for statutory health services

Artists on the edge of the world : an integrated approach to the study of Magdalenian engraved stone plaquettes from Jersey (Channel Islands)

Excavations at Les Varines were funded by Jersey Heritage through the States of Jersey Tourism Development Fund (https://www.gov.je/Leisure/Events/TourismDevelopmentFundTDF/pages/abouttdf.aspx) in 2013-15 and in 2017 (BS received the funding), by the British Museum research fund in 2016-18 (https://www.britishmuseum.org/research) (Grant nos EC164/EC208) (BS received the funding), in 2016 by British Academy (https://www.thebritishacademy.ac.uk) small grant SG152868 (CC received the funding) and Society of Antiquaries (https://www.sal.org.uk/) Research Grants R121086 in 2017 and BH181355 in 2018 (CC received the funding). Funding from the Universities of Manchester, Southampton and UCL supported student training at the excavation. Silvia Bello’s work was part of the ‘Human Behaviour in 3D’ Project funded by the Calleva Foundation. Beccy Scott’s work was also supported by the Calleva foundation (Pathways to Ancient Britain project).The Upper Palaeolithic is characterised by the appearance of iconographic expressions most often depicting animals, including anthropomorphic forms, and geometric signs. The Late Upper Palaeolithic Magdalenian saw a flourishing of such depictions, encompassing cave art, engraving of stone, bone and antler blanks and decoration of tools and weapons. Though Magdalenian settlement exists as far northwest as Britain, there is a limited range of art known from this region, possibly associated with only fleeting occupation of Britain during this period. Stone plaquettes, flat fragments of stone engraved on at least one surface, have been found in large quantities at numerous sites spanning the temporal and geographical spread of the Magdalenian, but they have been absent so far from the archaeological record of the British Isles. Between 2015 and 2018, ten fragments of stone plaquettes extensively engraved with abstract designs were uncovered at the Magdalenian site of Les Varines, Jersey, Channel Islands. In this paper, we report detailed analyses of these finds, which provide new evidence for technologies of abstract mark-making, and their significance within the lives of people on the edge of the Magdalenian world. These engraved stone fragments represent important, rare evidence of artistic expression in what is the far northern and western range of the Magdalenian and add new insight to the wider significance of dynamic practices of artistic expression during the Upper Palaeolithic.Publisher PDFPeer reviewe

Communicating with providers about racial healthcare disparities: The role of providers’ prior beliefs on their receptivity to different narrative frames

Objective Evaluate narratives aimed at motivating providers with different pre-existing beliefs to address racial healthcare disparities. Methods Survey experiment with 280 providers. Providers were classified as high or low in attributing disparities to providers (HPA versus LPA) and were randomly assigned to a non-narrative control or 1 of 2 narratives: “Provider Success” (provider successfully resolved problem involving Black patient) and “Provider Bias” (Black patient experienced racial bias, which remained unresolved). Participants' reactions to narratives (including identification with narrative) and likelihood of participating in disparities-reduction activities were immediately assessed. Four weeks later, participation in those activities was assessed, including self-reported participation in a disparities-reduction training course (primary outcome). Results Participation in training was higher among providers randomized to the Provider Success narrative compared to Provider Bias or Control. LPA participants had higher identification with Provider Success than Provider Bias narratives, whereas among HPA participants, differences in identification between the narratives were not significant. Conclusions Provider Success narratives led to greater participation in training than Provider Bias narratives, although providers’ pre-existing beliefs influenced the narrative they identified with. Practice implications Provider Success narratives may be more effective at motivating providers to address disparities than Provider Bias narratives, though more research is needed

Implementing and Evaluating a National Integrated Digital Registry and Clinical Decision Support System in Early Intervention in Psychosis Services (Early Psychosis Informatics Into Care): Co-Designed Protocol

BACKGROUND: Early intervention in psychosis (EIP) services are nationally mandated in England to provide multidisciplinary care to people experiencing first-episode psychosis, which disproportionately affects deprived and ethnic minority youth. Quality of service provision varies by region, and people from historically underserved populations have unequal access. In other disease areas, including stroke and dementia, national digital registries coupled with clinical decision support systems (CDSSs) have revolutionized the delivery of equitable, evidence-based interventions to transform patient outcomes and reduce population-level disparities in care. Given psychosis is ranked the third most burdensome mental health condition by the World Health Organization, it is essential that we achieve the same parity of health improvements. OBJECTIVE: This paper reports the protocol for the program development phase of this study, in which we aimed to co-design and produce an evidence-based, stakeholder-informed framework for the building, implementation, piloting, and evaluation of a national integrated digital registry and CDSS for psychosis, known as EPICare (Early Psychosis Informatics into Care). METHODS: We conducted 3 concurrent work packages, with reciprocal knowledge exchange between each. In work package 1, using a participatory co-design framework, key stakeholders (clinicians, academics, policy makers, and patient and public contributors) engaged in 4 workshops to review, refine, and identify a core set of essential and desirable measures and features of the EPICare registry and CDSS. Using a modified Delphi approach, we then developed a consensus of data priorities. In work package 2, we collaborated with National Health Service (NHS) informatics teams to identify relevant data currently captured in electronic health records, understand data retrieval methods, and design the software architecture and data model to inform future implementation. In work package 3, observations of stakeholder workshops and individual interviews with representative stakeholders (n=10) were subject to interpretative qualitative analysis, guided by normalization process theory, to identify factors likely to influence the adoption and implementation of EPICare into routine practice. RESULTS: Stage 1 of the EPICare study took place between December 2021 and September 2022. The next steps include stage 2 building, piloting, implementation, and evaluation of EPICare in 5 demonstrator NHS Trusts serving underserved and diverse populations with substantial need for EIP care in England. If successful, this will be followed by stage 3, in which we will seek NHS adoption of EPICare for rollout to all EIP services in England. CONCLUSIONS: By establishing a multistakeholder network and engaging them in an iterative co-design process, we have identified essential and desirable elements of the EPICare registry and CDSS; proactively identified and minimized potential challenges and barriers to uptake and implementation; and addressed key questions related to informatics architecture, infrastructure, governance, and integration in diverse NHS Trusts, enabling us to proceed with the building, piloting, implementation, and evaluation of EPICare. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50177

Cluster J Mycobacteriophages: Intron Splicing in Capsid and Tail Genes

Bacteriophages isolated on Mycobacterium smegmatis mc2155 represent many distinct genomes sharing little or no DNA sequence similarity. The genomes are architecturally mosaic and are replete with genes of unknown function. A new group of genomes sharing substantial nucleotide sequences constitute Cluster J. The six mycobacteriophages forming Cluster J are morphologically members of the Siphoviridae, but have unusually long genomes ranging from 106.3 to 117 kbp. Reconstruction of the capsid by cryo-electron microscopy of mycobacteriophage BAKA reveals an icosahedral structure with a triangulation number of 13. All six phages are temperate and homoimmune, and prophage establishment involves integration into a tRNA-Leu gene not previously identified as a mycobacterial attB site for phage integration. The Cluster J genomes provide two examples of intron splicing within the virion structural genes, one in a major capsid subunit gene, and one in a tail gene. These genomes also contain numerous freestanding HNH homing endonuclease, and comparative analysis reveals how these could contribute to genome mosaicism. The unusual Cluster J genomes provide new insights into phage genome architecture, gene function, capsid structure, gene mobility, intron splicing, and evolution

Development and validation of self-reported line drawings for assessment of knee malalignment and foot rotation: a cross-sectional comparative study

<p>Abstract</p> <p>Background</p> <p>For large scale epidemiological studies clinical assessments and radiographs can be impractical and expensive to apply to more than just a sample of the population examined. The study objectives were to develop and validate two novel instruments for self-reported knee malalignment and foot rotation suitable for use in questionnaire studies of knee pain and osteoarthritis.</p> <p>Methods</p> <p>Two sets of line drawings were developed using similar methodology. Each instrument consisted of an explanatory question followed by a set of drawings showing straight alignment, then two each at 7.5° angulation and 15° angulation in the varus/valgus (knee) and inward/outward (foot) directions. Forty one participants undertaking a community study completed the instruments on two occasions. Participants were assessed once by a blinded expert clinical observer with demonstrated excellent reproducibility. Validity was assessed by sensitivity, specificity and likelihood ratio (LR) using the observer as the reference standard. Reliability was assessed using weighted kappa (κ). Knee malalignment was measured on 400 knee radiographs. General linear model was used to assess for the presence of a linear increase in knee alignment angle (measured medially) from self-reported severe varus to mild varus, straight, mild valgus and severe valgus deformity.</p> <p>Results</p> <p>Observer reproducibility (κ) was 0.89 and 0.81 for the knee malalignment and foot rotation instruments respectively. Self-reported participant reproducibility was also good for the knee (κ 0.73) and foot (κ 0.87) instruments. Validity was excellent for the knee malalignment instrument, with a sensitivity of 0.74 (95%CI 0.54, 0.93) and specificity of 0.97 (95%CI 0.94, 1.00). Similarly the foot rotation instrument was also found to have high sensitivity (0.92, 95%CI 0.83, 1.01) and specificity (0.96, 95%CI 0.93, 1.00). The knee alignment angle increased progressively from self reported severe varus to mild varus, straight, mild valgus and severe valgus knee malalignment (p_trend<0.001).</p> <p>Conclusions</p> <p>The two novel instruments appear to provide a valid and reliable assessment of self-reported knee malalignment and foot rotation, and may have a practical use in epidemiological studies.</p