Knowledge and Expectations of Support People in Prenatal Genetic Counseling Sessions

Prenatal genetic counseling patients have the ability to choose from a myriad of screening and diagnostic testing options, each with intricacies and caveats regarding accuracy and timing. Decisions regarding such testing can be difficult and are often made on the same day that testing is performed. Therefore, it is reasonable to consider that the support people brought to an appointment may have a role in the decision-making process. We aimed to better define this potential role by examining the incoming knowledge and expectations of support people who attended prenatal genetic counseling appointments. Support people were asked to complete a survey at one of seven Houston area prenatal clinics. The survey included questions regarding demographics, relationship to patient, incoming knowledge of the appointment, expectations of decision-making and perceived levels of influence over the decisions that would be made during the counseling session. The majority (79.4%) of the 252 participants were spouses/partners. Overall, there was poor knowledge of the referral indications with only 33.5% of participants correctly identifying the patient’s indication. Participants had even poorer knowledge of testing options that would be offered during the session, as only 17.7% were able to correctly identify testing options that would be discussed during the genetic counseling session. Of participants, just 3.6% said that they did not want to be included in discussions about screening/testing options. Only a few participants thought that they had less influence over decisions related to the pregnancy than over non-pregnancy decisions. Participants who reported feeling like they had a higher level of influence were likely to attend more of the pregnancy-related appointments with the patient. Findings from this study have provided insight into the perspective of support persons and have identified gaps in knowledge that may exist between the patients and the people they choose to bring with them into the genetic counseling session. In addition, this study is a starting point to assess how much the support people think that they impact the decision-making process of prenatal genetic counseling patients versus how much the prenatal patients value the input of the support people.

AN ASSESSMENT OF KNOWLEDGE AND ATTITUDES OF GENETIC COUNSELING SERVICES IN U.S. HTCs

Hemophilia is a hereditary bleeding disorder which requires lifelong specialized care. A network of Hemophilia Treatment Centers (HTCs) exists to meet the medical needs of patients affected by hemophilia. Genetic counseling services are an integral part of the HTC model of care; however, many HTCs do not have genetic counselors on staff. As a result, the duty to provide these services must fall to other healthcare providers within the HTC. To assess the knowledge and attitudes of these providers we developed a 49 question survey that was distributed electronically to hematologists and nurses at U.S. HTCs. The survey consisted of a three sections: demographic information, knowledge of hemophilia genetics, and attitudes towards genetic services. A total of 111 complete responses were received and analyzed. The average knowledge score among all participants was 74.8% with a total of 81 participants receiving a passing score of 70% or above. Thirty participants scored below 70% in the knowledge section. In general, attitude scores were high indicating that the majority of hematologists and nurses in HTCs feel confident in their ability to provide genetic counseling services. Over 90% of participants reported that they have some form of access to genetic counseling services at their center. Hematologists and nurses practicing in U.S. HTCs demonstrate sufficient knowledge of the genetics of hemophilia, and they generally feel confident in their ability to provide genetic counseling services to their patients. While their knowledge is sufficient, the average knowledge score was lower than 75%. Certain questions covering new genetic technologies and testing practices were more commonly missed than questions asking about more basic aspects of hemophilia genetics, such as inheritance and carrier testing. Finally, many clinics report having access to a counselor, but it is oftentimes a hematologist or nurse who is providing genetic counseling services to patients. Given the inconsistency in knowledge among providers coupled with the high confidence in one’s ability to counsel patients, it leaves room to question whether information about the genetics of hemophilia is being communicated to patients in the most appropriate and accurate manner.

UNDERSTANDING NURSE CREATED COGNITIVE ARTIFACTS: PERSONALLY-CREATED-COGNITIVE-ARTIFACTS AS EXTERNAL REPRESENTATIONS OF DISTRIBUTED COGNITION

Manuscript 1: “Conceptual Analysis: Externalizing Nursing Knowledge” We use concept analysis to establish that the report tool nurses prepare, carry, reference, amend, and use as a temporary data repository are examples of cognitive artifacts. This tool, integrally woven throughout the work and practice of nurses, is important to cognition and clinical decision-making. Establishing the tool as a cognitive artifact will support new dimensions of study. Such studies can characterize how this report tool supports cognition, internal representation of knowledge and skills, and external representation of knowledge of the nurse. Manuscript 2: “Research Methods: Exploring Cognitive Work” The purpose of this paper is to describe a complex, cross-sectional, multi-method approach to study of personal cognitive artifacts in the clinical environment. The complex data arrays present in these cognitive artifacts warrant the use of multiple methods of data collection. Use of a less robust research design may result in an incomplete understanding of the meaning, value, content, and relationships between personal cognitive artifacts in the clinical environment and the cognitive work of the user. Manuscript 3: “Making the Cognitive Work of Registered Nurses Visible” Purpose: Knowledge representations and structures are created and used by registered nurses to guide patient care. Understanding is limited regarding how these knowledge representations, or cognitive artifacts, contribute to working memory, prioritization, organization, cognition, and decision-making. The purpose of this study was to identify and characterize the role a specific cognitive artifact knowledge representation and structure as it contributed to the cognitive work of the registered nurse. Methods: Data collection was completed, using qualitative research methods, by shadowing and interviewing 25 registered nurses. Data analysis employed triangulation and iterative analytic processes. Results: Nurse cognitive artifacts support recall, data evaluation, decision-making, organization, and prioritization. These cognitive artifacts demonstrated spatial, longitudinal, chronologic, visual, and personal cues to support the cognitive work of nurses. Conclusions: Nurse cognitive artifacts are an important adjunct to the cognitive work of nurses, and directly support patient care. Nurses need to be able to configure their cognitive artifact in ways that are meaningful and support their internal knowledge representations.

End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^

Family diversity in social exclusion situations. Results and reflections on research, teaching and knowledge transfer activities

The purpose of this paper is to characterize the configurations of the families that live in contexts of social exclusion; provide conceptualizations of their operation mode; highlight the formative effects that neighborhood interdisciplinary practices with such families produce in the just graduated psychologists, included on the Extension Program. We wish to contribute to produce systematic knowledge that can account for such family configurations as potential receiver of integration policies. We are also interested on transferring the approach to diversity in the training of young professionals, in order not to be regarded as a deviation from ideal models, but as an expression of different strategies built by members of a community, to resolve children breeding and to bear their existences. This work is the result about reflections on productions inside a research fellowship: The complexities that takes the breeding in families who lives in a social exclusion situation; researches about breeding, carried out from signature Developmental Psychology II, and from de interdisciplinary work with psychologically assisted families in twelve suburbs of the city of La Plata (University Extension Program "Free Legal Offices" (Convention between Law and Social Sciences and Psychology Faculties, U.N.L.P.). From a qualitative methodology and an interdisciplinary participation, the results have arrive at the characterization and proposed conceptualizations of the included families and at the same time determine the benefits that brings with the work that articulates research and extension activities for the training of advanced students and young graduates.

Family diversity in social exclusion situations. Results and reflections on research, teaching and knowledge transfer activities

The purpose of this paper is to characterize the configurations of the families that live in contexts of social exclusion; provide conceptualizations of their operation mode; highlight the formative effects that neighborhood interdisciplinary practices with such families produce in the just graduated psychologists, included on the Extension Program. We wish to contribute to produce systematic knowledge that can account for such family configurations as potential receiver of integration policies. We are also interested on transferring the approach to diversity in the training of young professionals, in order not to be regarded as a deviation from ideal models, but as an expression of different strategies built by members of a community, to resolve children breeding and to bear their existences. This work is the result about reflections on productions inside a research fellowship: The complexities that takes the breeding in families who lives in a social exclusion situation; researches about breeding, carried out from signature Developmental Psychology II, and from de interdisciplinary work with psychologically assisted families in twelve suburbs of the city of La Plata (University Extension Program "Free Legal Offices" (Convention between Law and Social Sciences and Psychology Faculties, U.N.L.P.). From a qualitative methodology and an interdisciplinary participation, the results have arrive at the characterization and proposed conceptualizations of the included families and at the same time determine the benefits that brings with the work that articulates research and extension activities for the training of advanced students and young graduates.

Family diversity in social exclusion situations. Results and reflections on research, teaching and knowledge transfer activities

The purpose of this paper is to characterize the configurations of the families that live in contexts of social exclusion; provide conceptualizations of their operation mode; highlight the formative effects that neighborhood interdisciplinary practices with such families produce in the just graduated psychologists, included on the Extension Program. We wish to contribute to produce systematic knowledge that can account for such family configurations as potential receiver of integration policies. We are also interested on transferring the approach to diversity in the training of young professionals, in order not to be regarded as a deviation from ideal models, but as an expression of different strategies built by members of a community, to resolve children breeding and to bear their existences. This work is the result about reflections on productions inside a research fellowship: The complexities that takes the breeding in families who lives in a social exclusion situation; researches about breeding, carried out from signature Developmental Psychology II, and from de interdisciplinary work with psychologically assisted families in twelve suburbs of the city of La Plata (University Extension Program "Free Legal Offices" (Convention between Law and Social Sciences and Psychology Faculties, U.N.L.P.). From a qualitative methodology and an interdisciplinary participation, the results have arrive at the characterization and proposed conceptualizations of the included families and at the same time determine the benefits that brings with the work that articulates research and extension activities for the training of advanced students and young graduates.

Advanced methodologies for the dendrogeomorphic analysis of past floods and related risks

This communication presents an overview of their first results and innovate methodologies, focused in their possibilities and limitations for the reconstruction of recent floods and paleofloods over the World.

A Language to Formalize and to Operationalize Problem-solving Strategies of Structured Knowledge Models

This paper describes a proposal of a language called Link which has been designed to formalize and operationalize problem solving strategies. This language is used within a software environment called KSM (Knowledge Structure Manager) which helps developers in formulating and operationalizing structured knowledge models. The paper presents both its syntax and dynamics, and gives examples of well-known problem-solving strategies of reasoning formulated using this language.

Integration of design tools and knowledge capture into a CAD system: a case study

onceptual design phase is partially supported by product lifecycle management/computer-aided design (PLM/CAD) systems causing discontinuity of the design information flow: customer needs — functional requirements — key characteristics — design parameters (DPs) — geometric DPs. Aiming to address this issue, it is proposed a knowledge-based approach is proposed to integrate quality function deployment, failure mode and effects analysis, and axiomatic design into a commercial PLM/CAD system. A case study, main subject of this article, was carried out to validate the proposed process, to evaluate, by a pilot development, how the commercial PLM/CAD modules and application programming interface could support the information flow, and based on the pilot scheme results to propose a full development framework.

Specific skills assessment learned by students of building engineering and technical architecture in topics relating to durability and control of concrete structures

In many university courses such as Building Engineering or Technical Architectural, the high density of the contents included in the curriculum, make the student, after graduation, unable to develop the skills already acquired and evaluated in the disciplines of the first courses. From the Group of Educational Innovation at the Polytechnic University of Madrid (UPM) "Teaching of Structural Concrete" (GIEHE) we have conducted a study in which are valued specific skills acquired by students after the first courses of career. We have worked with students from UPM fourth-year career and with Technical Architecture students who have completed their studies and also have completed the Adaptation Course of Technical Architecture to the Building Engineer. The work is part of the Educational Innovation Project funded by the UPM "Integration of training and assessment of generic and specific skills in structural concrete" We have evaluated specific skills learned in the areas of durability and control of structural concrete structures. The results show that overall, students are not able to fully develop the skills already acquired earlier, even being these essential to their professional development. Possibly, the large amount of content taught in these degrees together with a teaching and assessment of "flat profile", ie, which are presented and evaluated with the same intensity as the fundamental and the accessory, are causes enough to cause these results.

Survey on integration of Applied Geology and Geomorphology in Civil Engineering curricula in the framework of the European Higher Education Area (EHEA) by using practical trips

The engineer must have sufficient theoretical knowledge to be applied to solve specific problems, with the necessary capacity to simplify these approaches, and taking into account factors such as speed, simplicity, quality and economy. In Geology, its ultimate goal is the exploration of the history of the geological events through observation, deduction, reasoning and, in exceptional cases by the direct underground exploration or experimentation. Experimentation is very limited in Geology. Reproduction laboratory of certain phenomena or geological processes is difficult because both time and space become a large scale. For this reason, some Earth Sciences are in a nearly descriptive stage whereas others closest to the experimental, Geophysics and Geochemistry, have assimilated progress experienced by the physics and chemistry. Thus, Anglo-Saxon countries clearly separate Engineering Geology from Geological Engineering, i.e. Applied Geology to the Geological Engineering concepts. Although there is a big professional overlap, the first one corresponds to scientific approach, while the last one corresponds to a technological one. Applied Geology to Engineering could be defined as the Science and Applied Geology to the design, construction and performance of engineering infrastructures in and field geology discipline. There has been much discussion on the primacy of theory over practice. Today prevails the exaggeration of practice, but you get good workers and routine and mediocre teachers. This idea forgets too that teaching problem is a problem of right balance. The approach of the action lines on the European Higher Education Area (EHEA) framework provides for such balance. Applied Geology subject represents the first real contact with the physical environment with the practice profession and works. Besides, the situation of the topic in the first trace of Study Plans for many students implies the link to other subjects and topics of the career (tunnels, dams, groundwater, roads, etc). This work analyses in depth the justification of such practical trips. It shows the criteria and methods of planning and the result which manifests itself in pupils. Once practical trips experience developed, the objective work tries to know about results and changes on student’s motivation in learning perspective. This is done regardless of the outcome of their knowledge achievements assessed properly and they are not subject to such work. For this objective, it has been designed a survey about their motivation before and after trip. Survey was made by the Unidad Docente de Geología Aplicada of the Departamento de Ingeniería y Morfología del Terreno (Escuela Técnica Superior de Ingenieros de Caminos, Canales y Puertos, Universidad Politécnica de Madrid). It was completely anonymous. Its objective was to collect the opinion of the student as a key agent of learning and teaching of the subject. All the work takes place under new teaching/learning criteria approach at the European framework in Higher Education. The results are exceptionally good with 90% of student’s participation and with very high scores in a number of questions as the itineraries, teachers and visited places (range of 4.5 to 4.2 in a 5 points scale). The majority of students are very satisfied (average of 4.5 in a 5 points scale).

Fusion of probabilistic knowledge-based classification rules and learning automata for automatic recognition of digital images

In this paper, the fusion of probabilistic knowledge-based classification rules and learning automata theory is proposed and as a result we present a set of probabilistic classification rules with self-learning capability. The probabilities of the classification rules change dynamically guided by a supervised reinforcement process aimed at obtaining an optimum classification accuracy. This novel classifier is applied to the automatic recognition of digital images corresponding to visual landmarks for the autonomous navigation of an unmanned aerial vehicle (UAV) developed by the authors. The classification accuracy of the proposed classifier and its comparison with well-established pattern recognition methods is finally reported.