Vivências de lazer em jovens com DID: o papel da escola

Dissertação apresentada à Escola Superior de Educação de Paula Frassinetti para a obtenção do grau de Mestre em Ciências da Educação – Especialização em Educação Especial

A Comparative Study on the Homeroom Teachers’ Perception of the School guidance in Korea and Finland

This study has four major purposes. First, it compares school guidance of homeroom teachers in Korea and Finland, in order to understand the reality of education, based on the teachers’ perceptions. Secondly, it also considers the topic within its historical, social, and cultural backgrounds, from a critical standpoint. Thirdly, it investigates the direction of the improvement of school guidance, based on the analysis of similarities and differences between Korea and Finland, with regards to the meaning, practice, and environmental factors of the school guidance. Lastly, the influential factors surrounding the school guidance are noted by analysing empirical data from a microscopic approach, and extending the understanding of it into a social context. As for the methods, it employs thematic analysis approach through 10 homeroom teacher interviews in the lower secondary schools. As a result, firstly, the teachers in both countries assumed similarly, that the role of the teacher was not only to teach the subject, but also to care about every aspects of the students’ development in their school life. In addition, they accepted the fact that school guidance became more significant. However, the school guidance became the top priority for the Korean teachers, while teaching subject is the main task for the Finnish teachers. Secondly, the homeroom teachers in both countries hoped to have a better working environment, to perform school guidance concerning education budget for the resources of school guidance, tight curriculum, and increasing the teachers’ tasks. Thirdly, the school guidance in Korea seemed to be influenced by social expectation and government demand, whereas, the Finnish teachers considered school guidance in more aspects of adjustment and academic motivation, rather than resolving the social problems. Fourthly, the Korean teachers perceived that the trust and respect from the society and home became weakened, also expressing doubts about the educational policies and the attitude of the government with regards to school guidance. On the other hand, the Finnish teachers believed that they were trusted and respected by the society. However, blurred lines in the roles and accountability between the homeroom teachers, home, and the society were also controversial among the teachers in both countries. To sum up, Finland needs to ameliorate the system and conditions for school guidance of the homeroom teachers. The consensus on the role and tasks of Finnish homeroom teachers for school guidance seem to be also necessary. Meanwhile, Korea should improve the social system and social consciousness of the teacher, school guidance, and schooling, preceding the reform of the education system or conditions.

Parents’ experiences during the transition from childhood to adolescence with Type 1 Diabetes: Parent-child relationships and support received during this time and clinical research portfolio

Background: Type 1 Diabetes (T1D) management often worsens as children become adolescents. This can be a difficult time for parents as they hand over responsibility of diabetes management to their adolescent. Objectives: To look at the experiences of parents with a child with T1D as they move to adolescence and take more responsibility for their diabetes management. To find out about parents’ experience of support during this transition. Subjects: Three parents of adolescents with T1D. Participants were recruited from the NHS Highland Paediatric Diabetes Service. Methods: Participants took part in a one-to-one semi-structured interview with a researcher. Interpretative Phenomenological Analysis was used to analyse the interviews and find common themes across the interviews. Results: Participants experienced worry throughout their child’s transition to adolescence. They found it difficult to let their child take responsibility for their diabetes but acknowledged that their involvement caused tensions with their adolescent. Participants’ experience was that there were a number of practical adjustments to be made with a diagnosis of T1D and educating the network around their child was important. The participants reported that the diagnosis of T1D had an impact on the whole family and not just the child with the diagnosis. The parents felt well supported medically but said that the amount of time before their first clinic appointment felt too long. All participants had concerns about their adolescent moving to the adult diabetic service. Conclusions: Participants experienced worry relating to aspects of their adolescents T1D that they could not control, but were aware of the tensions caused by trying to keep elements of control. Areas of future research were identified.

Applied evolution: An integrated approach to studying life history traits in response to drug selection

The use of chemical control measures to reduce the impact of parasite and pest species has frequently resulted in the development of resistance. Thus, resistance management has become a key concern in human and veterinary medicine, and in agricultural production. Although it is known that factors such as gene flow between susceptible and resistant populations, drug type, application methods, and costs of resistance can affect the rate of resistance evolution, less is known about the impacts of density-dependent eco-evolutionary processes that could be altered by drug-induced mortality. The overall aim of this thesis was to take an experimental evolution approach to assess how life history traits respond to drug selection, using a free-living dioecious worm (Caenorhabditis remanei) as a model. In Chapter 2, I defined the relationship between C. remanei survival and Ivermectin dose over a range of concentrations, in order to control the intensity of selection used in the selection experiment described in Chapter 4. The dose-response data were also used to appraise curve-fitting methods, using Akaike Information Criterion (AIC) model selection to compare a series of nonlinear models. The type of model fitted to the dose response data had a significant effect on the estimates of LD50 and LD99, suggesting that failure to fit an appropriate model could give misleading estimates of resistance status. In addition, simulated data were used to establish that a potential cost of resistance could be predicted by comparing survival at the upper asymptote of dose-response curves for resistant and susceptible populations, even when differences were as low as 4%. This approach to dose-response modeling ensures that the maximum amount of useful information relating to resistance is gathered in one study. In Chapter 3, I asked how simulations could be used to inform important design choices used in selection experiments. Specifically, I focused on the effects of both within- and between-line variation on estimated power, when detecting small, medium and large effect sizes. Using mixed-effect models on simulated data, I demonstrated that commonly used designs with realistic levels of variation could be underpowered for substantial effect sizes. Thus, use of simulation-based power analysis provides an effective way to avoid under or overpowering a study designs incorporating variation due to random effects. In Chapter 4, I 3 investigated how Ivermectin dosage and changes in population density affect the rate of resistance evolution. I exposed replicate lines of C. remanei to two doses of Ivermectin (high and low) to assess relative survival of lines selected in drug-treated environments compared to untreated controls over 10 generations. Additionally, I maintained lines where mortality was imposed randomly to control for differences in density between drug treatments and to distinguish between the evolutionary consequences of drug treatment versus ecological processes affected by changes in density-dependent feedback. Intriguingly, both drug-selected and random-mortality lines showed an increase in survivorship when challenged with Ivermectin; the magnitude of this increase varied with the intensity of selection and life-history stage. The results suggest that interactions between density-dependent processes and life history may mediate evolved changes in susceptibility to control measures, which could result in misleading conclusions about the evolution of heritable resistance following drug treatment. In Chapter 5, I investigated whether the apparent changes in drug susceptibility found in Chapter 4 were related to evolved changes in life-history of C. remanei populations after selection in drug-treated and random-mortality environments. Rapid passage of lines in the drug-free environment had no effect on the measured life-history traits. In the drug-free environment, adult size and fecundity of drug-selected lines increased compared to the controls but drug selection did not affect lifespan. In the treated environment, drug-selected lines showed increased lifespan and fecundity relative to controls. Adult size of randomly culled lines responded in a similar way to drug-selected lines in the drug-free environment, but no change in fecundity or lifespan was observed in either environment. The results suggest that life histories of nematodes can respond to selection as a result of the application of control measures. Failure to take these responses into account when applying control measures could result in adverse outcomes, such as larger and more fecund parasites, as well as over-estimation of the development of genetically controlled resistance. In conclusion, my thesis shows that there may be a complex relationship between drug selection, density-dependent regulatory processes and life history of populations challenged with control measures. This relationship could have implications for how resistance is monitored and managed if life histories of parasitic species show such eco-evolutionary responses to drug application.

An Investigation Into The Perceptions Of Parents And Teachers Regarding The Adjustment To Sixth Grade Across School Configurations

A qualitative study was conducted in a large urban school district in the Mid-Atlantic region of the Unites States to investigate the perceptions of parents and teachers regarding the adjustment to sixth grade across school configurations. The investigation revealed the psychosocial and environmental factors that have an impact on sixth graders according to their grade span configurations. The study was conducted in the large urban school district, referred to as the “County,” which has a history of low and inconsistent achievement of sixth graders across a variety of grade span configurations. Through the analysis of the teacher and parent interviews conducted in two K-6 schools and two 6-8 middle schools, four themes were identified: transitioning, cultural awareness, social adjustment, and preparedness. The four themes emerged from the perceptions and observations of sixth graders, as shared by parents and teachers of sixth graders, according to their grade span configurations. Each of the responses was compared according to the identified grade span configuration K-6 and 6-8. From the data collected, recommendations were provided to the school district in which the study was conducted to better support teachers, parents, and sixth graders. Further research was also recommended of larger samples of sixth grade span configurations to better understand the complex dynamics of the relationships between grade span configurations for sixth graders and student achievement.

School Development in Urbanizing Areas

Good schools are essential for building thriving urban areas. They are important for preparing the future human resource and directly contribute to social and economic development of a place. They not only act as magnets for prospective residents, but also are necessary for retaining current population. As public infrastructure, schools mirror their neighborhood. “Their location, design and physical condition are important determinants of neighborhood quality, regional growth and change, and quality of life.”2 They impact housing development and utility requirements among many things. Hence, planning for schools along with other infrastructure in an area is essential. Schools are very challenging to plan, especially in urbanizing areas with changing demographic dynamics, where the development market and housing development can shift drastically a number of times. In such places projecting the future school enrollments is very difficult and in case of large population influx, school development can be unable to catch up with population growth which results in overcrowding. Typical is the case of Arlington County VA. In the past two decades the County has changed dramatically from a collection of bedroom communities in Washington DC Metro Region to a thriving urban area. Its metro accessible urban corridors are among most desired locations for development in the region. However, converting single family neighborhoods into high density areas has put a lot of pressure on its school facilities and has resulted in overcrowded schools. Its public school enrollment has grown by 19% from 2009 to 2014.3 While the percentage of population under 5 years age has increased in last 10 years, those in the 5-19 age group have decreased4. Hence, there is more pressure on the elementary school facilities than others in the County. Design-wise, elementary schools, due to their size, can be imagined as a community component. There are a number of strategies that can be used to develop elementary school in urbanizing areas as a part of the neighborhood. Experimenting with space planning and building on partnership and mixed-use opportunities can help produce better designs for new schools in future. This thesis is an attempt to develop elementary school models for urbanizing areas of Arlington County. The school models will be designed keeping in mind the shifting nature of population and resulting student enrollments in these areas. They will also aim to be efficient and sustainable, and lead to the next generation design for elementary school education. The overall purpose of the project is to address barriers to elementary school development in urbanizing areas through creative design and planning strategies. To test above mentioned ideas, the Joint-Use School typology of housing +school design has been identified for elementary school development in urbanizing areas in this thesis project. The development is based on the Arlington Public School’s Program guidelines (catering to 600 students). The site selected for this project is Clarendon West (part of Red Top Cab Properties) in Clarendon, Arlington County VA.

The antecedents of post-initial adoption behavior in a S-D logic context

Repercussions of innovation adoption and diffusion studies have long been imperative to the success of novel introductions. However, perceptions and deductions of current innovation understandings have been changing over time. The paradigm shift from the goods-dominant (G-D) logic to the service-dominant (S-D) logic potentially makes the distinction between product (goods) innovation and service innovation redundant as the S-D logic lens views all innovations as service innovations (Vargo and Lusch, 2004; 2008; Lusch and Nambisan, 2015). From this perspective, product innovations are in essence service innovations, as goods serve as mere distribution mechanisms to deliver service. Nonetheless, the transition to such a broadened and transcending view of service innovation necessitates concurrently a change in the underlying models used to investigate innovation and its subsequent adoption. The present research addresses this gap by engendering a novel model for the most crucial period of service diffusion within the S-D logic context – the post-initial adoption phase, which demarcates an individual’s behavior after the initial adoption decision of a service. As a wellfounded understanding of service diffusion and the complementary innovation adoption still lingers in its infancy, the current study develops a model based on interdisciplinary domains mapping. Here fore, knowledge of the relatively established viral source domain is mapped to the comparatively undetermined target domain of service innovation adoption. To assess the model and test the importance of the explanatory variables, survey data from 750 respondents of a bank in Northern Germany is scrutinized by means of Structural Equation Modeling (SEM). The findings reveal that the continuance intention of a customer, actual usage of the service and the customer influencer value all constitute important postinitial adoption behavior that have meaningful implications for a successful service adoption. Second, the four constructs customer influencer value, organizational commitment, perceived usefulness and service customization are evidenced to have a differential impact on a iv customer’s post-initial adoption behavior. Third, this study indicates that post-initial adoption behavior further underlies the influence of a user’s age and besides that is also provoked by the internal and external environments of service adoption. Finally, this research amalgamates the broad view of service innovation by Nambisan and Lusch (2015) with the findings ensuing this enquiry’s model to arrive at a framework that it both, generalizable and practically applicable. Implications for academia and practitioners are captured along with avenues for future research.

Principal Effectiveness: Middle School Leaders' Perceptions Of Principal Practices To Improve Middle School Reading Achievement

ABSTRACT Title of Document: PRINCIPAL EFFECTIVENESS: MIDDLE SCHOOL LEADERS’ PERCEPTIONS OF PRINCIPAL PRACTICES TO IMPROVE MIDDLE SCHOOL READING ACHIEVEMENT Kathleen R. Brady, Doctor of Education, 2016 Directed By: Dr. John Norris, Department of Education The purpose of this exploratory and descriptive study was to examine school leaders’ perceptions of leadership practices that contribute to principal effectiveness in improving reading achievement in middle schools in a large public school district. The data was gathered through the use of a Web-based survey that was emailed to 97 school based leaders including 20 principals, 40 assistant principals, 17 reading department chairpersons, and 20 professional development lead teachers in middle schools with grade 6-8 and 7-8 configurations. Data were collected and analyzed in order to make inferences about principal practices at middle school. The findings of this study indicated few differences between middle school principals’, assistant principals’, reading department chairpersons’, and professional development lead teachers’ perceptions of principal leadership practices that are most important to and have the greatest impact on student reading achievement success. Furthermore, the findings indicated that participants’ three top ranked resources needed to increase the effectiveness of principals in order to improve reading achievement at middle schools include implementing a collaborative planning protocol to support literacy instruction, adding a reading coach to the middle school staff, and providing professional development activities focused on literacy instruction across the content areas. The results were used to make recommendations that may contribute to middle school principal effectiveness.

Determination of factors related to the abandonment of the practice of swimming by former costa rican swimmers

The objective of this study was to determine the importance of different dimensions as the possible causes for the abandonment of the practice of swimming by former Costa Rican swimmers.  Subjects: 51 former swimmers participated, including 17 men (22 ±3.4 years of age) and 34 women (22.5 ±3.4 years of age) from different Costa Rican swimming teams.  The Questionnaire of Reasons for Attrition in the Practice of Sports (Gould et al, 1982; cited by Salguero, Tuero, and Márquez, 2003) was used.  Results:  A positive relationship was noted between perceptions of low skill and low performance (r: 0.372), while negative relationships were noted between years of practice and low skill (r:-0.337), years of practice and influence from others (r:-0.286), and years of practice and starting age for swimming (r:-0.622).  A significant interaction was found in the dimensions gender of participants (F: 2.952; p<0.05) and starting age for swimming (F: 3.147; p<0.01).  An interaction was also found between dimensions and the desire to swim again (F: 2.485; p>0.05).  There were also significant differences in the years of practice; that is, subjects who started before the age of 10 had a higher average of years of practice than those who started later (F: 21.465; p<0.05).  Additionally, a significant interaction was found in weekly hours of swimming practice (F: 2.072; p<0.05).  There were no significant differences (F: 2.535; p>0.05) according to weekly hours of training when subjects were actively swimming. Conclusions: Possible reasons for dropping out were lack of enjoyment and poor physical condition for men and perception of lack of team spirit for women.  The group that started after the age of ten gives similar importance to all the dimensions as possible reasons for dropping out, while the group that began swimming before the age of ten sees lack of team spirit, lack of enjoyment, and poor physical condition as the key reasons for dropping out.  The most important dimensions that represented the reasons for abandonment in subjects who wanted to swim again were lack of team spirit, poor physical condition and low skill, while lack of enjoyment was the most important reason for subjects who do not want to swim again.  In the group of subjects who would swim less than six hours, lack of team spirit is the most important cause, while the dimension lack of enjoyment was the most important reason for subjects who would swim 6 to 12 hours.  Additionally, the highest dropout percentages were observed in the transition from secondary school to college.

The Relationships between Elementary School Principals' Emotional Intelligence, Leadership Style and School Culture

The role of the principal in school settings and the principal’s perceived effect on student achievement have frequently been considered vital factors in school reform. The relationships between emotional intelligence, leadership style and school culture have been widely studied. The literature reveals agreement among scholars regarding the principal’s vital role in developing and fostering a positive school culture. The purpose of this study was to explore the relationships between elementary school principals’ emotional intelligence, leadership style and school culture. The researcher implemented a non-experimental ex post facto research design to investigate four specific research hypotheses. Utilizing the Qualtrics Survey Software, 57 elementary school principals within a large urban school district in southeast Florida completed the Emotional Quotient Inventory (EQ-i), and 850 of their faculty members completed the Multifactor Leadership Questionnaire (MLQ Form 5X). Faculty responses to the school district’s School Climate Survey retrieved from the district’s web site were used as the measure of school culture. Linear regression analyses revealed significant positive associations between emotional intelligence and the following leadership measures: Idealized Influence-Attributes (β = .23, p = < .05), Idealized Influence-Behaviors (β = .34, p = < .01), Inspirational Motivation (β = .39, p = < .01) and Contingent Reward (β = .33, p = < .01). Hierarchical regression analyses revealed positive associations between school culture and both transformational and transactional leadership measures, and negative associations between school culture and passive-avoidant leadership measures. Significant positive associations were found between school culture and the principals’ emotional intelligence over and above leadership style. Hierarchical linear regressions to test the statistical hypothesis developed to account for alternative explanations revealed significant associations between leadership style and school culture over and above school grade. These results suggest that emotional intelligence merits consideration in the development of leadership theory. Practical implications include suggestions that principals employ both transformational and transactional leadership strategies, and focus on developing their level of emotional intelligence. The associations between emotional intelligence, transformational leadership, Contingent Reward and school culture found in this study validate the role of the principal as the leader of school reform.

A participação dos alunos no Governo da Escola Pública

O presente estudo centra-se na temática das políticas de autonomia da escola pública portuguesa, particularmente na problemática da participação dos alunos na organização e gestão da escola, e tem como objetivo conhecer o modo como se constrói e se desenvolve a participação dos alunos do ensino secundário na escola objeto de análise. Procurámos conjugar a análise teórica da evolução dos modelos de administração escolar, no pós-25 de abril, com especial foco para o atual regime jurídico da autonomia, administração e gestão das escolas, implementado pelo DL n.º 75/2008, de 22 de abril, na redação dada pelo DL nº 137/2012, de 2 de julho e a forma como se constrói a participação dos alunos do ensino secundário nos órgãos de gestão e administração de uma escola secundária com 3º ciclo, sita em Viseu. Dada a existência de uma relação intrínseca entre democracia e educação, o nosso estudo foi alicerçado no ideário da "gestão democrática da escola", no que tange à participação dos alunos na tomada de decisões na vida organizativa da sua escola. Para tal, importa identificar os espaços formais e informais da participação discente na vida da escola e perceber de que forma as experiências participativas, no contexto da escola, podem contribuir para o exercício de uma verdadeira cidadania ativa. Embora a legislação atualmente em vigor promova a autonomia da escola e abra espaço à participação dos alunos, constatamos que as decisões na escola ainda estão centradas nos professores, caracterizando-se a participação dos alunos nesses órgãos, por uma participação formal e passiva (presencial), elegendo outras áreas de participação, tais como em atividades de complemento curricular e as promovidas pela AE. A nossa investigação permitiu-nos concluir que é importante a participação dos alunos na gestão e organização da escola, mas que essa participação não ocorre de forma espontânea. É necessário criar estratégias de motivação e de incentivo à participação dos alunos, através da criação de espaços de diálogo que potenciem a construção de uma verdadeira cultura de cidadania participativa dos alunos na escola. É fruto deste contexto que propomos a implementação do projeto "Dar voz aos Alunos".

Recours aux services de soutien formel par les parents immigrants d’un enfant en situation de handicap

Les parents immigrants d’un enfant en situation de handicap présentent davantage de sources de vulnérabilité que d’autres parents. Cette situation peut diminuer le temps disponible et altérer leur implication dans le programme de réadaptation de leur enfant. L’objectif de cette thèse doctorale est de déterminer les attentes et les besoins en services de soutien formel de ces parents, afin de leur proposer une aide adaptée à leurs conditions de vie, et ceci, au fur et à mesure que l’enfant grandit. D’abord, une étude de la portée des écrits scientifiques est menée dans le but de mieux cerner les connaissances existantes en lien avec le recours aux services de soutien par les parents immigrants (chapitre 1). Les vingt publications sélectionnées indiquent que l’aide pour trouver de l’information s’avère la plus requise, que ce soit au sujet de la condition de l’enfant, du fonctionnement sociosanitaire et éducatif du pays d’accueil, ou encore des services de soutien. En outre, la transmission de ces informations peut se compliquer en cas de non-maîtrise de la langue du pays d’accueil ou lorsque des interculturelles apparaissent entre les parents immigrants et les différents intervenants rencontrés. Quant au non-recours aux aides formelles, il semble principalement dû à l’inadéquation entre l’aide concrète et les attentes des parents, au soutien informel reçu, à la méconnaissance des opportunités d’obtenir des services d’aide destinés aux parents, ou encore à un épuisement non ressenti. Compte tenu du nombre restreint d’écrits scientifiques recensés, des entrevues semi-dirigées sont conduites auprès de 28 parents immigrants d’un enfant en situation de handicap dans la province du Québec (Canada) dans le cadre d’une recherche de plus grande envergure portant sur la communication avec les intervenants en petite enfance (chapitre 2). Le but de cette deuxième étude est de mieux saisir l’utilisation des services de soutien formel par les parents immigrants et les facteurs influençant leurs choix. Il faut préciser que les propos recueillis restent très centrés sur les services destinés à l’enfant. Le soutien pour recevoir des informations et l’accompagnement à la décision apparaissent comme les aides formelles les plus utilisées par les participants, suivies du soutien à l’éducation, de l’écoute active et de l’aide financière. Cinq facteurs semblent guider le recours au soutien formel qui est destiné aux parents, soit : (1) leur perception de la condition de leur enfant, (2) l’accès à l’information, (3) leurs stratégies et leur capacité d’agir, (4) l’implication du réseau informel, et (5) leur perception de leur besoin de services de soutien. Suite à ces résultats, de nouvelles entrevues semi-dirigées sont menées auprès de huit parents immigrants d’enfants d’âges différents à Montréal et à Québec. Cette démarche permet d’approfondir le thème du recours au soutien formel destiné aux parents, et ce, au fur et à mesure que l’enfant grandit (chapitre 3). Le guide d’entretien conçu pour cette étude met l’emphase sur les attentes et les besoins des parents immigrants afin d’atteindre un équilibre dans toutes les sphères de leur vie. Suite à une analyse thématique exploratoire du discours des parents et par l’application d’un modèle de stress et de coping, sept principales sources de stress sont mises en évidence : (1) le parcours migratoire, (2) la condition de l’enfant, (3) l’organisation sociosanitaire du pays d’accueil, (4) l’insertion professionnelle, (5) la relation de couple, (6) le réseau social, et (7) l’état de santé du parent. Afin de faire face à ces circonstances difficiles, les parents immigrants recourent principalement à de l’aide financière, du soutien pour obtenir des informations, de l’accompagnement à la décision, de l’aide en éducation et pour le transport. La satisfaction exprimée varie, notamment en raison des divergences entre les attentes et les services obtenus (soutien en éducation, écoute active, services de garde), ainsi qu’en termes de quantité d’aide reçue (soutien financier, informations, accompagnement à la décision). Un modèle théorique original est proposé afin d’illustrer le contexte parental en termes d’attentes, de besoins et de recours au soutien. Si certains moments de la vie de l’enfant peuvent entraîner un stress supplémentaire pour les parents (annonce du diagnostic, arrivée à l’école, transition à l’âge adulte), le parcours migratoire semble davantage expliquer le recours aux aides formelles.

Quality of life in children and adolescents with congenital heart disease. A new challenge for parents, professionals and community

The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. Purpose As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory - PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children's group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: - The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. - There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. - Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. - Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. - For parents of children and adolescents gender and their education don´t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. - Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. - There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated

Quality of life in children and adolescents with congenital heart disease

Purpose: The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. 'As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods: It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory ? PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results: The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children?s group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. For parents of children and adolescents gender and their education don?t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion: To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated.

Transition Matters. Il ruolo del designer nella transizione sostenibile e circolare dei materiali polimerici

La ricerca indaga il ruolo del designer nella transizione sostenibile e circolare all’uso di materiali polimerici. Nel contesto contemporaneo la plastica è utilizzata in quasi ogni settore merceologico ma la sua futura applicazione è messa in forte discussione a causa dei visibili impatti ambientali del suo uso irresponsabile. Un passaggio netto dalla totale dipendenza alla liberazione dei polimeri è difficile; è necessario un periodo di transizione che permetta di coesistere responsabilmente con i polimeri in attesa di trovare dei validi sostituti. L’obiettivo della ricerca è lavorare su questo periodo ponendo il designer e le sue competenze come soggetti chiave del movimento. La tesi di ricerca propone un approccio per calare le pratiche del Transition Design nella progettazione di sistemi-prodotto, nutrendosi degli attributi anticipatori dell’Advanced Design e puntando agli obiettivi del Circular Design, lavorando a partire dalle merci più critiche nel contesto contemporaneo: quelle in polimero fossile non riciclabile. Contributo della tesi è la figura del Transition Matter Designer, un progettista di transizioni dei materiali che prevede metamorfosi di sistemi-prodotto nel tempo grazie alle sue competenze a diverse scale del progetto: forma l’utente agli atteggiamenti circolari e sostenibili, caratterizza i materiali per individuarne nuovi usi, seleziona i processi produttivi adatti a prevenire scarti e ne anticipa i cicli di vita nei prodotti. I Knitted Fasteners sono il risultato della simulazione del lavoro del Transition Matter Designer nel tessile: un sistema di elementi di fissaggio, personalizzabili dallo stilista e integrati negli abiti a maglia, che permettono di eliminare l’uso di fashion fasteners in plastica e metallo, elementi che rendono difficile il riciclo dei capi. Dalla sperimentazione è emerso il modello concettuale della Transindustrial Production: un lavoro di collaborazione fra Transition Matter Designer e creativo per dare identità ai materiali polimerici circolari attraverso l’ibridazione fra artigianato e industria, tipico del Made in Italy.