Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective

Although Huntington's disease (HD) is a neurodegenerative disease characterized by motor, cognitive and behavioural disturbances, there has been little empirical data examining what patients are most concerned about throughout the different stages of disease, which can span many years. Semi-structured face-to-face interviews were individually conducted with 31 people living with different stages of Huntington's, from pre-clinical gene carriers to advanced stage. We examined how often participants raised issues and concerns regarding the impact of Huntington's on everyday life. The Physical/functional theme hardly featured pre-clinically, but was strongly present from Stage 1, rose steadily and peaked at Stage 5. There were no significant changes between stages for the Emotional, Social, and Self themes that all featured across all stages, indicating that these issues were not raised more frequently over the course of the disease. Likewise, the more rarely mentioned Financial and Legal themes also remained similar across stages. However, the Cognitive theme only featured between Stages 1 and 4, and hardly at all pre-clinically and at Stage 5. These findings provide insight into patients' important and unique perspective and have implications for the management and development of interventions across the spectrum of HD stages.

Assessing self- and peer-assessment: The students' views

Self- and peer-assessment are being used increasingly in higher education, to help assign grades to students' work and to help students to learn more effectively. However, in spite of this trend there is little in the published literature on how students view these methods. In this paper we present an analysis of the views of a large number of students (N = 233) who had just experienced self- and peer-feedback as part of one of their subjects. It is a rarely questioned commonplace in the literature that in order to gain benefit from peer and self-assessment schemes students first need training in the specific scheme being used; ideally they will play a role in devising the scheme. The intervention reported here, which involved a large (N = 233) group of students, included no such measures. The results show that students felt, nonetheless, that they benefited from the intervention. The results also present prima facie evidence that training or other measures to further involve the students in the peer and self-assessment scheme might be beneficial. Our analysis of students' views revealed eight general dimensions under which are grouped twenty higher order themes. The results both support and extend previous research and give a more detailed picture than previously available. The general dimensions found were: Difficult; Gained Better Understanding of Marking; Discomfort; Productive (including learning benefits and improved work); Problems with Implementation; Read Others' Work; Develop Empathy (with assessing staff); and, Motivation (especially motivation to impress peers). The practical implications of these findings are discussed.

Besoins, prescriptions et sécurité des produits sanguins labiles ; autosuffisance en produits sanguins labiles [Roundtables of SFTS Congress 2013: Needs, indications and safety of blood products; self-sufficiency in blood products].

The current issues debate brings together experts around the themes of self-sufficiency (in its national and European aspects) and of needs in cellular blood products. The point of view of the manufacturer and prescribers of blood products are confronted.

An examination of learning resulting from a transition from a directed to a self-directed work environment

~ This study focuses on the process of self-directed learning that individuals go through as they adapt to new work situations. This is a study of how one critical incident, specifically the transition from a traditional office structure to a home office structure, affected employees and what their learning process was as they adapted to the new environment. This study has 3 educational foundations: adult learning, self-directed learning, and the social context from which the learning will occur. Six women and 2 men were interviewed approximately 1 year following the transition. Analysis of the data revealed 5 themes of: impacts of the self-directed environment on participants' personal lives, their roles, skill set, productivity, and the physical environment; support offered by the organization, family, and office administration; personal development, specific learning needs, and personal skills; boundaries as they relate to family and work; and skill set and orientation requirements of new home office employees. The findings revealed the learning processes of the 8 participants. The learning processes of these participants were discussed within a theoretical framework of the learners, their immediate surroundings, and the larger social environment. The results indicated that the transition from a directed work environment to a self directed work environment is a complex, interrelated process. An element found throughout the theoretical framework is that of control. A second critical element is the need for participants to have a clearly defined work role and an opportunity to engage in discussion with peers and the community. Further findings reinforced the importance of climate and found that the physical environment is a key factor in a successful selfdirected work environment. The findings of this study revealed that no one factor makes an individual function successfully in a self-directed work environment, but that it is a complex interplay among the leamer, their immediate surroundings, and the social environment that will have the greatest impact on success. Recommendations are made which can be used to guide organizational leaders in facilitating employees' transition from a directed to a self-directed work environment. Additionally, recommendations are made for further research in the area of self-directed work environments.

Facilitating self-directed learning: the nurse educators' perspective

The concept of self-directed learning was examined from the nurse educators' perspective. One structured interview, lasting between one and one-and-a half hours, was conducted with each of 14 nurse educators in two community college continuing education programs in nursing. One community college program encourages selfdirected learning; the other encourages self-study and active participation in the teaching/learning process. All 14 interviews were tape-recorded and transcribed verbatim. Verbatim transcripts were analyzed for themes, patterns, and relationships utilizing analyst-constructed typologies. six prerequisites or necessary conditions for facilitating self-directed learning in a community college continuing education program in nursing were identified. ~he crucial issue in facilitating self-directed learning was found to be the issue of teacher-control.

Self-directed learning, lifelong learning and transformative learning in the Society for Creative Anachronism

This study examines the connection between leisure group participation and learning activities undertaken by participants in the Society for Creative Anachronism (SCA), a medieval recreationist group. The thesis of this connection was developed through the researcher's observations during SCA participation. The intent of this study is to understand adult learning from the self-directed learning, lifelong learning, and -transformative learning components derived from participant's SCA experiences. This qualitative study was conducted by interviewing eight active SCA participants, two in each participation theme of historical research, artistic representation, performance, and martial skills. Informants' responses demonstrated an integration of their leisure activity with learning. The contextualization of learning a s both a primary activity and a necessary support to participation, places learning a t the heart of participants' SCA related activities. The positive descriptions of learning activities, descriptive terms of ownership, and situating learning as an enjoyable activity engaged for the pleasure of the experience, provides adult educators with a fascinating glimpse of willing and engaged adult learners pursuing lifelong learning outside of the traditional educational structure. Two themes emerged during the interviews. First, bonding with others provided the motivation to continue their activities. Secondly, a feeling of commitment and helonging defined their enjoyment and satisfaction with SCA participation. The clear implications are that adult educators can create effective learning communities by developing educational structures that engage adult learners wi th meaningful social interaction.

Students’ Use and Perceptions of Social Networking Technologies: Connections to Reading, Reading Ability, and Self-Perception

Abstract This study was undertaken to examine traditional forms of literacy and the newest form of literacy: technology. Students who have trouble reading traditional forms of literacy tend to have lower self-esteem. This research intended to explore if students with reading difficulties and, therefore, lower self-esteem, could use Social Networking Technologies including text messaging, Facebook, email, blogging, MySpace, or Twitter to help improve their self-esteem, in a field where spelling mistakes and grammatical errors are commonplace, if not encouraged. A collective case study was undertaken based on surveys, individual interviews, and gathered documents from 3 students 9-13 years old. The data collected in this study were analyzed and interpreted using qualitative methods. These cases were individually examined for themes, which were then analyzed across the cases to examine points of convergence and divergence in the data. The research found that students with reading difficulties do not necessarily have poor self-esteem, as prior research has suggested (Carr, Borkowski, & Maxwell, 1991; Feiler, & Logan, 2007; Meece, Wigfield, & Eccles, 1990; Pintirch & DeGroot, 1990; Pintrich & Garcia, 1991). All of the participants who had reading difficulties, were found both through interviews and the CFSEI-3 self-esteem test (Battle, 2002) to have average self-esteem, although their parents all stated that their child felt poorly about their academic abilities. The research also found that using Social Networking Technologies helped improve the self-esteem of the majority of the participants both socially and academically.

Locating Intergenerational Sense of Self: Intersections of Genealogy with Leisure and Tourism

Situated at the intersection of leisure and tourism, there is currently a renewed interest and curiosity in ancestral lineages. Focusing on amateur genealogists who pursue, and travel for, a leisure engagement of genealogy, this qualitative research study endeavours to investigate their quests for personal identity and locations of an intergenerational sense of self. With the adoption of a narrative inquiry method, life story interviews were conducted with four amateur genealogists. Findings from an analysis of the narratives have been organized into five core themes, each of which contributes to our understanding of these amateur genealogists’ experiences of leisure and travel. While the amateur genealogists do not acknowledge their leisure engagements as a quest for personal identity, they make use of such engagements to locate an intergenerational sense of self and gain enriched self-understandings. Moreover, by facilitating intersections of genealogy, leisure, and tourism, several key insights are offered that may be of particular interest to scholars in both fields of study.

Using Poetry, Story, and Reflection to Understand Professional Self After Personal Loss

This research investigated professional identity transformation after personal loss. Through autoethnographic methods, I explore how my personal experience of my sister’s breast cancer and death affected my identity as a diabetes educator in the health culture. I discover a transformation of a professional who focuses on evidence-based medicine to a professional who values connection, therapeutic alliance, and mindfulness with patients and self in the diabetes education encounter. Using a holistic perspective on transformational learning, I integrate the poem “Wild Geese” to a collection of written narratives to connect my personal loss experience to my professional life. By unpacking the generated stories and using poetry, I conduct a process of critical and self-reflection to discover how my identity as a health professional has transformed and what makes meaning in my role as a diabetes educator in the health culture. I consider concepts of a conscious self, social relations and language and discover themes of knowledge exchange, food, and empathy as forms of language expression. These language expressions are not present in my professional life as I focus on rational, logical facts of evidence-based medicine and standardized education methods. Through this reflexive process, I hope to understand how my professional practice has changed, where I place an importance on connection, therapeutic alliance, and mindfulness. I move away from always “doing” in my professional life to focus on my state of “being” in my professional world. Rather than knowledge acquisition as the only factor in professional development, this study contributes to an understanding of additional qualities health professionals may consider that focus on the patient education encounter.

A Qualitative Study of the Professional Experiences of Teachers With Mobility Challenges and Their Self-Perceptions of Professional Success

This qualitative investigation explored the professional experiences of 3 Ontario teachers who have mobility challenges. The study’s participants (2 male and 1 female) were Ontario teachers who have permanent physical disabilities that challenge their means of mobility. Each participant has an Ontario Certified Teaching License and has either taught or is currently teaching in an Ontario school. My primary source of data collection was a semi-structured face-to-face interview with each participant. The focus of the interview was participant perspectives. Data analysis was accomplished in 3 phases. Data analysis generated 5 prominent themes of commonality among participants: (a) independence and sacrifice, (b) living with pain, (c) barriers and obstacles, (d) the importance of communication, and (e) professional benefits and personal rewards.

Infant feeding choices: experience, self-identity and lifestyle

In England 78% of mothers initiate breastfeeding and in the UK less than 1% exclusively breastfeed until 6 months, despite WHO recommendations to do so. This study investigated women’s infant feeding choices using in-depth interviews with 12 mothers of infants aged 7-18 weeks. Using content analysis, four themes emerged: (1) Information, Knowledge and Decision Making, (2) Physical Capability, (3) Family and Social Influences, (4) Lifestyle, Independence and Self-Identity. Whilst women were aware of the ‘Breast is Best’ message, some expressed distrust in this information if they had not been breastfed themselves. Women felt their own infant feeding choice was influenced by the perceived norm amongst family and friends. Women described how breastfeeding hindered their ability to retain their self-identities beyond motherhood as it limited their independence. Several second-time mothers felt they lacked support from health professionals when breastfeeding their second baby, even if they had previously encountered breastfeeding difficulties. The study indicates that experience of breastfeeding, and belief in the health benefits associated with it are important factors for initiation of breastfeeding, whilst decreased independence and self-identity may influence duration of breastfeeding. Intervention and support schemes should tackle all mothers, not just first-time mothers.

The Nurse Professional Competence (NPC) scale : self-reported competence among nursing students on the point of graduation

BACKGROUND: International organisations, e.g. WHO, stress the importance of competent registered nurses (RN) for the safety and quality of healthcare systems. Low competence among RNs has been shown to increase the morbidity and mortality of inpatients. OBJECTIVES: To investigate self-reported competence among nursing students on the point of graduation (NSPGs), using the Nurse Professional Competence (NPC) Scale, and to relate the findings to background factors. METHODS AND PARTICIPANTS: The NPC Scale consists of 88 items within eight competence areas (CAs) and two overarching themes. Questions about socio-economic background and perceived overall quality of the degree programme were added. In total, 1086 NSPGs (mean age, 28.1 [20-56]years, 87.3% women) from 11 universities/university colleges participated. RESULTS: NSPGs reported significantly higher scores for Theme I "Patient-Related Nursing" than for Theme II "Organisation and Development of Nursing Care". Younger NSPGs (20-27years) reported significantly higher scores for the CAs "Medical and Technical Care" and "Documentation and Information Technology". Female NSPGs scored significantly higher for "Value-Based Nursing". Those who had taken the nursing care programme at upper secondary school before the Bachelor of Science in Nursing (BSN) programme scored significantly higher on "Nursing Care", "Medical and Technical Care", "Teaching/Learning and Support", "Legislation in Nursing and Safety Planning" and on Theme I. Working extra paid hours in healthcare alongside the BSN programme contributed to significantly higher self-reported scores for four CAs and both themes. Clinical courses within the BSN programme contributed to perceived competence to a significantly higher degree than theoretical courses (93.2% vs 87.5% of NSPGs). SUMMARY AND CONCLUSION: Mean scores reported by NSPGs were highest for the four CAs connected with patient-related nursing and lowest for CAs relating to organisation and development of nursing care. We conclude that the NPC Scale can be used to identify and measure aspects of self-reported competence among NSPGs.

Model-based Self-awareness Patterns for Autonomy

Los sistemas técnicos son cada vez más complejos, incorporan funciones más avanzadas, están más integrados con otros sistemas y trabajan en entornos menos controlados. Todo esto supone unas condiciones más exigentes y con mayor incertidumbre para los sistemas de control, a los que además se demanda un comportamiento más autónomo y fiable. La adaptabilidad de manera autónoma es un reto para tecnologías de control actualmente. El proyecto de investigación ASys propone abordarlo trasladando la responsabilidad de la capacidad de adaptación del sistema de los ingenieros en tiempo de diseño al propio sistema en operación. Esta tesis pretende avanzar en la formulación y materialización técnica de los principios de ASys de cognición y auto-consciencia basadas en modelos y autogestión de los sistemas en tiempo de operación para una autonomía robusta. Para ello el trabajo se ha centrado en la capacidad de auto-conciencia, inspirada en los sistemas biológicos, y se ha explorado la posibilidad de integrarla en la arquitectura de los sistemas de control. Además de la auto-consciencia, se han explorado otros temas relevantes: modelado funcional, modelado de software, tecnología de los patrones, tecnología de componentes, tolerancia a fallos. Se ha analizado el estado de la técnica en los ámbitos pertinentes para las cuestiones de la auto-consciencia y la adaptabilidad en sistemas técnicos: arquitecturas cognitivas, control tolerante a fallos, y arquitecturas software dinámicas y computación autonómica. El marco teórico de ASys existente de sistemas autónomos cognitivos ha sido adaptado para servir de base para este análisis de autoconsciencia y adaptación y para dar sustento conceptual al posterior desarrollo de la solución. La tesis propone una solución general de diseño para la construcción de sistemas autónomos auto-conscientes. La idea central es la integración de un meta-controlador en la arquitectura de control del sistema autónomo, capaz de percibir la estado funcional del sistema de control y, si es necesario, reconfigurarlo en tiempo de operación. Esta solución de metacontrol se ha formalizado en cuatro patrones de diseño: i) el Patrón Metacontrol, que define la integración de un subsistema de metacontrol, responsable de controlar al propio sistema de control a través de la interfaz proporcionada por su plataforma de componentes, ii) el patrón Bucle de Control Epistémico, que define un bucle de control cognitivo basado en el modelos y que se puede aplicar al diseño del metacontrol, iii) el patrón de Reflexión basada en Modelo Profundo propone una solución para construir el modelo ejecutable utilizado por el meta-controlador mediante una transformación de modelo a modelo a partir del modelo de ingeniería del sistema, y, finalmente, iv) el Patrón Metacontrol Funcional, que estructura el meta-controlador en dos bucles, uno para el control de la configuración de los componentes del sistema de control, y otro sobre éste, controlando las funciones que realiza dicha configuración de componentes; de esta manera las consideraciones funcionales y estructurales se desacoplan. La Arquitectura OM y el metamodelo TOMASys son las piezas centrales del marco arquitectónico desarrollado para materializar la solución compuesta de los patrones anteriores. El metamodelo TOMASys ha sido desarrollado para la representación de la estructura y su relación con los requisitos funcionales de cualquier sistema autónomo. La Arquitectura OM es un patrón de referencia para la construcción de una metacontrolador integrando los patrones de diseño propuestos. Este meta-controlador se puede integrar en la arquitectura de cualquier sistema control basado en componentes. El elemento clave de su funcionamiento es un modelo TOMASys del sistema decontrol, que el meta-controlador usa para monitorizarlo y calcular las acciones de reconfiguración necesarias para adaptarlo a las circunstancias en cada momento. Un proceso de ingeniería, complementado con otros recursos, ha sido elaborado para guiar la aplicación del marco arquitectónico OM. Dicho Proceso de Ingeniería OM define la metodología a seguir para construir el subsistema de metacontrol para un sistema autónomo a partir del modelo funcional del mismo. La librería OMJava proporciona una implementación del meta-controlador OM que se puede integrar en el control de cualquier sistema autónomo, independientemente del dominio de la aplicación o de su tecnología de implementación. Para concluir, la solución completa ha sido validada con el desarrollo de un robot móvil autónomo que incorpora un meta-controlador con la Arquitectura OM. Las propiedades de auto-consciencia y adaptación proporcionadas por el meta-controlador han sido validadas en diferentes escenarios de operación del robot, en los que el sistema era capaz de sobreponerse a fallos en el sistema de control mediante reconfiguraciones orquestadas por el metacontrolador. ABSTRACT Technical systems are becoming more complex, they incorporate more advanced functionalities, they are more integrated with other systems and they are deployed in less controlled environments. All this supposes a more demanding and uncertain scenario for control systems, which are also required to be more autonomous and dependable. Autonomous adaptivity is a current challenge for extant control technologies. The ASys research project proposes to address it by moving the responsibility for adaptivity from the engineers at design time to the system at run-time. This thesis has intended to advance in the formulation and technical reification of ASys principles of model-based self-cognition and having systems self-handle at runtime for robust autonomy. For that it has focused on the biologically inspired capability of self-awareness, and explored the possibilities to embed it into the very architecture of control systems. Besides self-awareness, other themes related to the envisioned solution have been explored: functional modeling, software modeling, patterns technology, components technology, fault tolerance. The state of the art in fields relevant for the issues of self-awareness and adaptivity has been analysed: cognitive architectures, fault-tolerant control, and software architectural reflection and autonomic computing. The extant and evolving ASys Theoretical Framework for cognitive autonomous systems has been adapted to provide a basement for this selfhood-centred analysis and to conceptually support the subsequent development of our solution. The thesis proposes a general design solution for building self-aware autonomous systems. Its central idea is the integration of a metacontroller in the control architecture of the autonomous system, capable of perceiving the functional state of the control system and reconfiguring it if necessary at run-time. This metacontrol solution has been formalised into four design patterns: i) the Metacontrol Pattern, which defines the integration of a metacontrol subsystem, controlling the domain control system through an interface provided by its implementation component platform, ii) the Epistemic Control Loop pattern, which defines a modelbased cognitive control loop that can be applied to the design of such a metacontroller, iii) the Deep Model Reflection pattern proposes a solution to produce the online executable model used by the metacontroller by model-to-model transformation from the engineering model, and, finally, iv) the Functional Metacontrol pattern, which proposes to structure the metacontroller in two loops, one for controlling the configuration of components of the controller, and another one on top of the former, controlling the functions being realised by that configuration; this way the functional and structural concerns become decoupled. The OM Architecture and the TOMASys metamodel are the core pieces of the architectural framework developed to reify this patterned solution. The TOMASys metamodel has been developed for representing the structure and its relation to the functional requirements of any autonomous system. The OM architecture is a blueprint for building a metacontroller according to the patterns. This metacontroller can be integrated on top of any component-based control architecture. At the core of its operation lies a TOMASys model of the control system. An engineering process and accompanying assets have been constructed to complete and exploit the architectural framework. The OM Engineering Process defines the process to follow to develop the metacontrol subsystem from the functional model of the controller of the autonomous system. The OMJava library provides a domain and application-independent implementation of an OM Metacontroller than can be used in the implementation phase of OMEP. Finally, the complete solution has been validated in the development of an autonomous mobile robot that incorporates an OM metacontroller. The functional selfawareness and adaptivity properties achieved thanks to the metacontrol system have been validated in different scenarios. In these scenarios the robot was able to overcome failures in the control system thanks to reconfigurations performed by the metacontroller.

The role of the social environment in non-suicidal self-injury among LGBTQ youth: A mixed methods study

Non-suicidal self-injury (NSSI), such as cutting and burning, is a widespread social problem among lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ) youth. Extant research indicates that this population is more than twice as likely to engage in NSSI than heterosexual and cisgender (non-transgender) youth. Despite the scope of this social problem, it remains relatively unexamined in the literature. Research on other risk behaviors among LGBTQ youth indicates that experiencing homophobia and transphobia in key social contexts such as families, schools, and peer relationships contributes to health disparities among this group. Consequently, the aims of this study were to examine: (1) the relationship between LGBTQ youth's social environments and their NSSI behavior, and (2) whether/how specific aspects of the social environment contribute to an understanding of NSSI among LGBTQ youth. This study was conducted using an exploratory, sequential mixed methods design with two phases. The first phase of the study involved analysis of transcripts from interviews conducted with 44 LGBTQ youth recruited from a community-based organization. In this phase, five qualitative themes were identified: (1) Violence; (2) Misconceptions, Stigma, and Shame; (3) Negotiating LGBTQ Identity; (4) Invisibility and Isolation; and (5) Peer Relationships. Results from the qualitative phase were used to identify key variables and specify statistical models in the second, quantitative, phase of the study, using secondary data from a survey of 252 LGBTQ youth. The qualitative phase revealed how LGBTQ youth, themselves, described the role of the social environment in their NSSI behavior, while the quantitative phase was used to determine whether the qualitative findings could be used to predict engagement in NSSI among a larger sample of LGBTQ youth. The quantitative analyses found that certain social-environmental factors such as experiencing physical abuse at home, feeling unsafe at school, and greater openness about sexual orientation significantly predicted the likelihood of engaging in NSSI among LGBTQ youth. Furthermore, depression partially mediated the relationships between family physical abuse and NSSI and feeling unsafe at school and NSSI. The qualitative and quantitative results were compared in the interpretation phase to explore areas of convergence and incongruence. Overall, this study's findings indicate that social-environmental factors are salient to understanding NSSI among LGBTQ youth. The particular social contexts in which LGBTQ youth live significantly influence their engagement in this risk behavior. These findings can inform the development of culturally relevant NSSI interventions that address the social realities of LGBTQ youth's lives.

The perceived benefits of the chronic disease self-management program among participants with stroke: A qualitative study

Despite the expense associated with rehabilitation following stroke, dissatisfaction with psychosocial outcomes is common (Thomas & Parry, 1996). The rehabilitation system has been critiqued as lacking a theoretical base for psychosocial interventions (Goldberg, Segal, Berk, Schall, & Gershkoff, 1997). The current paper examines the possible role of the Chronic Disease Self-Management Program ([CDSMP] Lorig, 1996) in contributing to the psychosocial rehabilitation of people with stroke. This paper focuses on the analysis of incidental comments made by participants about a version of the CDSMP, tailored for people with stroke. These comments, collected over an 18-month follow-up period, provide interesting insights into the key aspects of the program. Six informative themes emerged from the more specific comments, namely (1) the importance of social contact and comparison, (2) increased awareness and knowledge about stroke, (3) motivation to pursue goals and activities, (4) a sense of achievement, (5) maintenance of gains, and (6) the paradoxical nature of social support. According to participants, the program was associated with enhanced self-efficacy. Other reported benefits (such as social support and enhanced knowledge) were indirectly associated with the program and appeared to reflect social aspects of the group and its stroke-specific focus. Maintenance of gains made by participants was seen as a crucial issue.