Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Shedder status— An analysis of self and non-self DNA in multiple handprints deposited by the same individuals over time

There are several studies that suggest that different people deposit different quantities of their own DNA on items they touch, i.e. some are good shedders and others are bad shedders. It is of interest to determine if individuals deposit consistent quantities of their own DNA, no matter the occasion, as well as the degree of variability among individuals. To investigate this, participants were tested for their ability to deposit DNA by placing right and left handprints on separate DNA-free glass plates at three set times during the day (morning, midday and afternoon) on four different days spaced over several weeks. Information regarding recent activities performed by the individual was recorded, along with information on gender, hand dominance and hand size. A total of 240 handprint deposits were collected from 10 individuals and analyzed for differences in DNA quantity and the type of the DNA profile obtained at different times of the day, on different days, between the two hands of the same individual, and between different individuals. Furthermore, the correlation between the deposit quantity and the ratio of self to non-self DNA in the mixed deposits was analyzed to determine if the amount of non-self DNA has an effect on overall DNA quantities obtained. In general, this study has shown that while there is substantial variation in the quantities deposited by individuals on different occasions, some clear trends were evident with some individuals consistently depositing significantly more or less DNA than others. Non-self DNA was usually deposited along with self DNA and, in most instances, was the minor component. Incidents where the non-self portion was the major component were very rare and, when observed, were associated with a poor depositor/shedder. Forensic DNA scientists need to consider the range and variability of DNA a person deposits when touching an object, the likelihood of non-self DNA being co-deposited onto the handled object of interest and the factors that may affect the relative quantity of this component within the deposit.

Examining health literacy disparities in the United States: a third look at the National Assessment of Adult Literacy (NAAL)

BACKGROUND: In the United States, disparities in health literacy parallel disparities in health outcomes. Our research contributes to how diverse indicators of social inequalities (i.e., objective social class, relational social class, and social resources) contribute to understanding disparities in health literacy.

METHODS: We analyze data on respondents 18 years of age and older (N = 14,592) from the 2003 National Assessment of Adult Literacy (NAAL) restricted access data set. A series of weighted Ordinary Least Squares (OLS) regression models estimate the association between respondent's demographic characteristics, socioeconomic status (SES), relational social class, social resources and an Item Response Theory (IRT) based health literacy measure.

RESULTS: Our findings are consistent with previous research on the social and SES determinants of health literacy. However, our findings reveal the importance of relational social status for understanding health literacy disparities in the United States. Objective indicators of social status are persistent and robust indicators of health literacy. Measures of relational social status such as civic engagement (i.e., voting, volunteering, and library use) are associated with higher health literacy levels net of objective resources. Social resources including speaking English and marital status are associated with higher health literacy levels.

CONCLUSIONS: Relational indicators of social class are related to health literacy independent of objective social class indicators. Civic literacy (e.g., voting and volunteering) are predictors of health literacy and offer opportunities for health intervention. Our findings support the notion that health literacy is a social construct and suggest the need to develop a theoretically driven conceptual definition of health literacy that includes a civic literacy component.

‘Care in a chair’ – The impact of an overcrowded emergency department on the time to treatment and length of stay of self-presenting patients with abdominal pain

Objectives The aim in this study was to investigate the impact of overcrowding on the Australasian Triage Score’s (ATS) time to treatment target and the National Emergency Access Target (NEAT) for patients who self-present to the Emergency Department (ED) with abdominal pain. Background The causes and effects of ED overcrowding have been well described in the literature. It is a widespread phenomenon throughout the world and it can cause serious harm to patients and have a negative impact on access to emergency care. There is however, little research investigating the effect of overcrowding when patients self-present to the ED and experience a delay in being allocated a cubicle. Methods A retrospective analysis of 12-months of computerised records was carried out in order to determine if self-presenting patients with abdominal pain allocated a category 3 triage score who were required to ‘queue’ for a cubicle would meet ATS target and NEAT requirements. A multiple regression analysis was used to determine whether or not queuing for an ED cubicle, age and gender were predictors of meeting the ATS guidelines and NEAT requirements. Results Three hundred and five patients met the inclusion criteria and were included in the study. Of these 149 patients waited more than 15 min to be allocated a cubicle while 156 did not experience any delay. A multiple regression analysis revealed that gender and age were not predictive of meeting the ATS target and NEAT requirements, while delay in allocation to a cubicle was a significant predictor of not being assessed within 30 min and discharged within 4 h. Furthermore, 61.2% of patients allocated to the waiting room queue for any amount of time were admitted to the ward. Conclusion Queuing in the waiting room for an ED bed was a significant predictor of whether or not category three patients with abdominal pain had treatment commenced within 30 min of presentation and was associated with a longer total ED length of stay.

National security, surveillance and terror: Canada and Australia in comparative perspective

This edited collection brings together leading scholars to comparatively investigate national security, surveillance and terror in the early 21st century in two major western jurisdictions, Canada and Australia. Observing that much debate about these topics is dominated by US and UK perspectives, the volume provides penetrating analysis of national security and surveillance practices in two under-studied countries that reveals critical insights into current trends. Written by a wide range of experts in their respective fields, this book addresses a fascinating array of timely questions about the relationship among national security, privacy and terror in the two countries and beyond. Chapters include critical assessments of topics such as: National Security Intelligence Collection since 9/11, The Border as Checkpoint in an Age of Hemispheric Security and Surveillance, Unmanned Aerial Vehicles and Law Enforcement, as well as Federal Government Departments and Security Regimes. An engaging and empirically driven study, this collection will be of great interest to scholars of security and surveillance studies, policing, and comparative criminology.

National gender equity and schooling policy in Australia: struggles for a non-identitarian feminist politics

This paper tracks the development of gender equity and schooling policy in Australia from theNational Policy on the Education of Girls in 1987, to current policy concerns with boys’ educational underperformance. The paper’s key focus is on the ways in which feminist informed equity policy has been undermined by broader imperatives of economic rationalism and anti-feminist discourses. Drawing on Nancy Fraser’s understandings of distributive and cultural gender justice and her notion of a nonidentitarian feminist politics, the paper critically examines the ways in which such imperatives have re-articulated equity and schooling concerns. Through these lenses, the limitations of the affirmative gender binary politics and remedies that have dominated gender and schooling reform in Australia are highlighted. The paper concludes with an illumination of the gender justice spaces currently being mobilised in Australian schools. Such spaces, it is argued, fostered within a context of increasing autonomy and self-management for schools, are providing avenues for creative and disruptive (pro)feminist activism.

Influencing girls' interest in information technology

The lack of skilled labour that can support digital economies is a worldwide problem, exacerbated by the lack of female participation in the Information Technology (IT) industry. Interventions that promote IT study and career opportunities for girls can be a powerful means to counter the ongoing decline in IT interest amongst females. However, the impact of such interventions is rarely being evaluated. This study is, therefore, aimed at gaining insights into the influence on IT career perceptions of one IT intervention event for secondary school girls conducted in Australia in 2014. The analysis of comprehensive survey data (n=781) using the Partial Least Squares and other statistical techniques revealed that a positive attitude toward the analysed event had significant direct and indirect positive impacts on girls' intentions to choose a career in IT. The indirect influence was supported by such mediating factors as girls' self-efficacy towards IT careers and their intentions to learn more about IT, which the event affected directly. In addition to reporting on the results of testing the research model, further insights into girls' opinions and attitudes towards the intervention and IT in general are provided in the paper.

Análisis de mujeres cachemires como sujetos subalternos en la representación institucional de India y Paquistán a partir del fenómeno de desaparición forzada (1989-2008)

El interés de esta monografía es analizar las consecuencias de la representación institucional de India y Paquistán en la disputa territorial por Cachemira durante el periodo de 1989 a 2008. Puntualmente, se analiza y explica cómo la representación institucional prestada individualmente por India y Paquistán validó sus intereses como agentes de poder en la región, pasó por alto las necesidades de la población cachemir y fomentó la práctica de la desaparición forzada, lo que en consecuencia convirtió a las mujeres cachemires en un grupo subalterno. Para tal objetivo, se hará uso de la teoría postcolonialista, específicamente el enfoque subalternista de la autora Gayatri Chakravorty Spivak ya que permite explicar adecuadamente el proceso mediante el cual las mujeres cachemires se convirtieron en un grupo subalterno.

Actividad física, imagen corporal y condiciones de vida. Un abordaje teórico desde los determinantes y la determinación social de la salud

El objetivo de este trabajo fue analizar la construcción social del conocimiento en Actividad física desde dos planteamientos teóricos de la salud centrando el análisis en la relación con la imagen corporal y las condiciones de vida. Se trata de un estudio teórico desde el análisis de contenido de corte narrativo de 98 artículos desarrollado en cinco etapas a través de: rastreo de documentos en bases de datos en el periodo 2000-2014, revisión de artículos, y análisis y hallazgos de significados, sentidos o contenidos. Como hallazgo importante se puede mencionar que en la literatura científica relacionada con la triada Actividad física-imagen corporal-condiciones de vida predomina la construcción del conocimiento a partir de modelos hegemónicos y dominantes que priorizan la intensidad, la frecuencia y el tiempo dedicado a la AF, la estandarización en la comparación de la apariencia física y la medición de elementos materiales en el modo de vivir de las personas, principalmente desde el abordaje de los determinantes sociales de la salud. Se concluye que es necesario revisar las poblaciones que incluyendo en los estudios al estar concentrados el conocimiento en solo unos grupos; así como se hace explícita la necesidad de revisar cuales son los aportes de la Educación Física y otras disciplinas (ciencias sociales) para una mayor comprensión teórica y práctica de la AF.

Alcances y limitaciones del tercer pilar de la doctrina de responsabilidad de proteger en la intervención militar de la crisis Libia (2011-2013)

El siguiente trabajo de investigación pretende analizar no solo la manera en la que la Intervención en la crisis Libia (2011-2013) se vio justificada a la luz de lo que establece la Doctrina de R2P, sino también investigar si logró cumplir con los objetivos de la misma. Con tal propósito, se evaluará si la intervención Militar Humanitaria por parte de la OTAN bajo la resolución 1973 del Consejo de Seguridad de la ONU, se justifica desde los objetivos que establece la Doctrina de Responsabilidad de Proteger y cumple parcialmente con los propósitos fundamentales de prevenir, reaccionar y reconstruir en la crisis Libia de 2011- 2013. El método que se utilizará para responder a la pregunta de este estudio de caso, será en su totalidad cualitativo, descriptivo y analítico. En lo que respecta a las fuentes, se usarán fuentes secundarias como artículos académicos y fuentes primarias provenientes de noticias de periódicos, revistas, resoluciones AG y del CS de la ONU.

Actitudes hacia la Enfermedad del Alzheimer según el género y la edad de adultos colombianos

La enfermedad de Alzheimer (EA) es la demencia más frecuente y su prevalencia continúa en aumento tanto en Colombia como en el mundo. Esta investigación tuvo como objetivo explorar si las actitudes hacia la EA varían según la edad y género de 450 personas adultas colombianas. Se realizó un estudio exploratorio de corte transversal en el que se aplicó un cuestionario autodiligenciado. Se encontró que efectivamente hay algunas diferencias según la edad y el género en el componente cognoscitivo (creencias y conocimiento) y conductual (intención conductual y conducta) de las actitudes; y diferencias según el género en el componente afectivo. Se concluye que los conocimientos sobre la EA son escasos, que la tristeza es la emoción predominante hacia la EA y que es un tema de interés en el que predomina la idea de que afecta especialmente la memoria. Se discutieron los resultados reconociendo que esta es una aproximación inicial a las actitudes hacia la EA.

Toward Self-Organising Service Communities

This paper discusses a framework in which catalog service communities are built, linked for interaction, and constantly monitored and adapted over time. A catalog service community (represented as a peer node in a peer-to-peer network) in our system can be viewed as domain specific data integration mediators representing the domain knowledge and the registry information. The query routing among communities is performed to identify a set of data sources that are relevant to answering a given query. The system monitors the interactions between the communities to discover patterns that may lead to restructuring of the network (e.g., irrelevant peers removed, new relationships created, etc.).