Networking for conservation: social capital and perceptions of organizational success among land trust boards

As an important component in collaborative natural resource management and nonprofit governance, social capital is expected to be related to variations in the performance of land trusts. Land trusts are charitable organizations that work to conserve private land locally, regionally, or nationally. The purpose of this paper is to identify the level of structural and cognitive social capital among local land trusts, and how these two types of social capital relate to the perceived success of land trusts. The analysis integrates data for land trusts operating in the U.S. south-central Appalachian region, which includes western North Carolina, southwest Virginia, and east Tennessee. We use factor analysis to elicit different dimensions of cognitive social capital, including cooperation among board members, shared values, common norms, and communication effectiveness. Measures of structural social capital include the size and diversity of organizational networks of both land trusts and their board members. Finally, a hierarchical linear regression model is employed to estimate how cognitive and structural social capital measures, along with other organizational and individual-level attributes, relate to perceptions of land trust success, defined here as achievement of the land trusts’ mission, conservation, and financial goals. Results show that the diversity of organizational partnerships, cooperation, and shared values among land trust board members are associated with higher levels of perceived success. Organizational capacity, land trust accreditation, volunteerism, and financial support are also important factors influencing perceptions of success among local, nonprofit land trusts.

Consumer perceived risk, risk reduction strategies and transaction intentions in online marketplaces

Even though online commerce has garnered vast academic interest during the recent years, theoretical grounds for consumer behavior online still remains ambiguous. Despite the globally rapid growth of online commerce, only a fraction of Internet browsers end up purchasing goods online. This is argued to be caused by the intangible and distant nature of the Internet, causing overwhelming perceived risks for consumers and negatively affecting transaction intentions. To combat perceived risks, consumers may actively or passively seek to relieve those risks to tolerable level. These risk reduction strategies refer to both institutional mechanisms as well as consumer risk reduction strategies. The objective of this thesis is to provide further understanding upon the relationships between consumer perceived risk, risk reduction strategies and transaction intentions in online marketplaces. To serve the objectives of the present thesis, a quantitative approach was chosen as the method for conducting empirical research. The data was collected with an online survey through discussion board, using a random sample approach. The proposed research model was examined with a set of hierarchical regression analyses. Results revealed several direct relationships as well as moderating interaction effects. The key finding of this thesis is that institutional risk reduction mechanisms significantly contribute to consumer perceived risks. These mechanisms have the potential to reduce perceived risks, and therefore may stimulate transaction intentions. Additionally, it was observed that risk reduction strategies moderate the relationship between intermediary provided risk relievers, consumer perceived risks and transaction intentions. Retailer related risk reduction strategies were also shown to enforce the effectiveness of payment methods; however feedback and monitoring mechanism was shown to have a diminishing effect of perceived risk only when consumers did not rely on product related risk reduction strategies. The present thesis also illustrates the importance of effective information search, as those consumers are more willing to transact as the perceived risks become less significant. For managerial purposes, the importance of well-functioning institutional mechanisms cannot be emphasized enough.

Influence of the perception of discrimination on women's work motivation

Nowadays, despite anti-discrimination policies, women suffer frequently from a lack of consideration from their male colleagues, altering their well-being and motivation to work. More precisely, perceived personal or groupal discrimination, could have a distinct influence on work motivation. Previous studies showed that the impact on women varies in function of the type of perceived discrimination (Bourguignon et al. 2006). Based on the self-categorization and the social identity theory, work motivation is differently structured as if employees categorized themselves as individuals or as part of a group. As a result, a different impact from personal and group discrimination on work motivation is expected. Moreover, it has been proved that typical men behavior is heavily associated with competence compared to women behavior (Marchand, Saint-Charles & Corbeil, 2007). Therefore, it is hypothesized that women with more masculine traits will suffer from less perceived discrimination, and work motivation. An online survey was created in order to collect data over work motivation, perceived personal and group discrimination. The respondents were also questioned on typical men and women behavior to determine their gender-conformity. To test our hypotheses, data were collected from 57 women stemming from the labour force, aged from 21 to 63 years old. Results indicate that perceived personal discrimination was negatively related to work motivation and that perceived group discrimination was negatively correlated with masculine behavior. Thereby, our study enhances the importance of work environment, and especially discrimination, on work motivation. This research also corroborates the self-categorization and the social identity theory framework to study these issues.

COACHES, CLIMATES, “FIELD” GOALS, AND EFFICACY: A “DE-CONSTRUCTION” OF THE MASTERY-APPROACH TO COACHING AND EXAMINATION OF RELATIONSHIPS TO PSYCHOSOCIAL OUTCOMES IN A YOUTH FOOTBALL PLAYER DEVELOPMENT PROGRAM.

In support of the achievement goal theory (AGT), empirical research has demonstrated psychosocial benefits of the mastery-oriented learning climate. In this study, we examined the effects of perceived coaching behaviors on various indicators of psychosocial well-being (competitive anxiety, self-esteem, perceived competence, enjoyment, and future intentions for participation), as mediated by perceptions of the coach-initiated motivational climate, achievement goal orientations and perceptions of sport-specific skills efficacy. Using a pre-post test design, 1,464 boys, ages 10-15 (M = 12.84 years, SD = 1.44), who participated in a series of 12 football skills clinics were surveyed from various locations across the United States. Using structural equation modeling (SEM) path analysis and hierarchical regression analysis, the cumulative direct and indirect effects of the perceived coaching behaviors on the psychosocial variables at post-test were parsed out to determine what types of coaching behaviors are more conducive to the positive psychosocial development of youth athletes. The study demonstrated that how coaching behaviors are perceived impacts the athletes’ perceptions of the motivational climate and achievement goal orientations, as well as self-efficacy beliefs. These effects in turn affect the athletes’ self-esteem, general competence, sport-specific competence, competitive anxiety, enjoyment, and intentions to remain involved in the sport. The findings also clarify how young boys internalize and interpret coaches’ messages through modification of achievement goal orientations and sport-specific efficacy beliefs.

Cultural and Social Cognitive Predictors of Academic Satisfaction in Southeast Asian American College Students

This study examined the predictive utility of Lent’s (2004) social cognitive model of well-being in the context of academic satisfaction with a sample of Southeast Asian American college students using a cross-sectional design. Path analysis was used to examine the role of perceived parental trauma, perceived parental acculturative stress, intergenerational family conflict, and social cognitive predictors to academic satisfaction. Participants were 111 Southeast Asian American and 111 East Asian American college students who completed online measures. Contrary to expectations, none of the contextual cultural variables were significant predictors of academic satisfaction. Also contrary to expectations, academic support and self-efficacy were not directly linked to academic satisfaction and outcome expectation was not linked to goal progress. Other social cognitive predictors were related directly and indirectly to academic satisfaction, consistent with prior research. Limitations and implications for future research and practice are addressed.

STRESS AND INTERNATIONAL ENTREPRENEURHSIP: The dark side of international entrepreneurship

Entrepreneurship attracts people with high job satisfaction and financial independence. Unfortunately, being deceived by this image, people do not pay attention to side effects of entrepreneurship. This ignorance usually turns into devastating results for entrepreneur’s health and venture performance. Therefore, it is required to seek ways to avoid these situations. The interest of the study lies in understanding of stress influence on international entrepreneurs by considering stress as a negative side effect of international entrepreneurship. To cover the concept of entrepreneurial stress completely, the study was divided into three section presented by following research questions: 1. What are the antecedents of entrepreneurial stress? 2. What are the consequences of entrepreneurial stress? 3. What coping strategies are applied to address entrepreneurial stress? Systematic literature review has been chosen as scientific approach to answer above questions due to the reason that it enables to minimise inconsistencies of both concepts of international entrepreneurship and stress. This method has afforded an opportunity to distinguish such stress causes as role conflict, overload, and ambiguity. Additionally, the study has covered the notion of stress moderators. The author argues that entrepreneurial traits, venture environment, and social support can have influence on degree of stress perception. Further, it has been proven that unaddressed stress could lead to reduction of entrepreneur’s psychological and physiological health. It should be taken into consideration that degree of both job satisfaction and performance would depend on the level of perceived stress. The last part of study emphasises the coping strategies. The author argues that it is important for an international entrepreneur to comprehend his or her and others’ emotions in order to overcome negative consequences of stress. In addition, the author suggests that an international entrepreneur needs to practise job sharing to reduce the amount of work to be completed. Moreover, it is believed that job sharing can help to overcome work-family conflict that prevails among entrepreneurs. The author anticipates that results of study can be beneficial for entrepreneurs who aim to achieve great results.

The interpersonal and mental health implications of the coherence of coming out narratives for a sample of gay men in committed romantic relationships

The coming out process has been conceptualized as a developmental imperative for those who will eventually accept their same-sex attractions. It is widely accepted that homophobia, heterosexism, and homonegativity are cultural realities that may complicate this developmental process for gay men. The current study views coming out as an extra-developmental life task that is at best a stressful event, and at worst traumatic when coming out results in the rupture of salient relationships with parents, siblings, and/or close friends. To date, the minority stress model (Meyer, 1995; 2003) has been utilized as an organizing framework for how to empirically examine external stressors and mental health disparities for lesbians, gay men, and bisexual individuals in the United States. The current study builds on this literature by focusing on the influence of how gay men make sense of and represent the coming out process in a semi-structured interview, more specifically, by examining the legacy of the coming out process on indicators of wellness. In a two-part process, this study first employs the framework well articulated in the adult attachment literature of coherence of narratives to explore both variation and implications of the coming out experience for a sample of gay men (n = 60) in romantic relationships (n = 30). In particular, this study employed constructs identified in the adult attachment literature, namely Preoccupied and Dismissing current state of mind, to code a Coming Out Interview (COI). In the present study current state of mind refers to the degree of coherent discourse produced about coming out experiences as relayed during the COI. Multilevel analyses tested the extent to which these COI dimensions, as revealed through an analysis of coming out narratives in the COI, were associated with relationship quality, including self-reported satisfaction and observed emotional tone in a standard laboratory interaction task and self-reported symptoms of psychopathology. In addition, multilevel analyses also assessed the Acceptance by primary relationship figures at the time of disclosure, as well as the degree of Outness at the time of the study. Results revealed that participant’s narratives on the COI varied with regard to Preoccupied and Dismissing current state of mind, suggesting that the AAI coding system provides a viable organizing framework for extracting meaning from coming out narratives as related to attachment relevant constructs. Multilevel modeling revealed construct validity of the attachment dimensions assessed via the COI; attachment (i.e., Preoccupied and Dismissing current state of mind) as assessed via the Adult Attachment Interview (AAI) was significantly correlated with the corresponding COI variables. These finding suggest both methodological and conceptual convergence between these two measures. However, with one exception, COI Preoccupied and Dismissing current state of mind did not predict relationship outcomes or self-reported internalizing and externalizing symptoms. However, further analyses revealed that the degree to which one is out to others moderated the relationship between COI Preoccupied and internalizing. Specifically, for those who were less out to others, there was a significant and positive relationship between Preoccupied current state of mind towards coming out and internalizing symptoms. In addition, the degree of perceived acceptance of sexual orientation by salient relationship figures at the time of disclosure emerged as a predictor of mental health. In particular, Acceptance was significantly negatively related to internalizing symptoms. Overall, the results offer preliminary support that gay men’s narratives do reflect variation as assessed by attachment dimensions and highlights the role of Acceptance by salient relationship figures at the time of disclosure. Still, for the most part, current state of mind towards coming out in this study was not associated with relationship quality and self-reported indicators of mental health. This finding may be a function of low statistical power given the modest sample size. However, the relationship between Preoccupied current state of mind and mental health (i.e., internalizing) appears to depend on degree of Outness. In addition, the response of primary relationships figures to coming out may be a relevant factor in shaping mental health outcomes for gay men. Limitations and suggestions for future research and clinical intervention are offered.

Veto of R200, H.3849

This veto message from Governor Nikki Haley vetoes a bill limiting public disclosure of certain records relevant to teacher evaluations currently subject to the Freedom of Information Act.

Using text-mining-assisted analysis to examine the applicability of unstructured data in the context of customer complaint management

Double Degree

A monitorização da carga de treino através da análise tempo-movimento e da perceção subjetiva do esforço, PSE, no futebol

O objetivo do presente estudo foi verificar se existe variação dos parâmetros que caraterizam a atividade motora de jogadores de futebol em treino, obtidos através do Viper Software STATSports, ao longo de vários microciclos (MCs) integrando o período preparatório (PP) e o início do período competitivo (PC), assim como, averiguar a associação existente entre a variação destes parâmetros, MC a MC, e a Perceção Subjetiva do Esforço Sessão (PSE-sessão) respetiva, e verificar, ainda, se existe correlação entre estes parâmetros e a PSE, em cada MC do período considerado. A amostra do estudo foi constituída por 13 jogadores (idade: 25 ± 1,78 anos) de futebol do sexo masculino a competir no escalão de Séniores da Associação Futebol de Setúbal. A recolha de dados ocorreu durante o PP (4 semanas) e o PC (4 semanas). Os jogadores incluídos no estudo cumpriram o único critério definido: a realização total das sessões de treino previstas. Os instrumentos utilizados durante o processo foram o sistema Viper (Viper Software v.1.2, STATSports), integrando um GPS 10 Hz, acelerómetro 100 Hz, cardiofrequencímetro e a escala de PSE adaptada por Foster. Verificou-se elevada variabilidade no comportamento dos parâmetros no PP, mas não nos 3 últimos MCs já integrados no PC. Verificamos forte associação entre os parâmetros Distância Explosiva (r=0,762), Nº Esforços de Elevada Carga Metabólica (r=0,714), Nº Acelerações (r=0,714), Nº Desacelerações (r=0,762) e a PSE-sessão (p˂0,05). O parâmetro com maior potencial preditor de elevados valores da PSE-sessão é a Distância Explosiva (p˂0,001). Por fim, não encontramos uma associação regular entre os parâmetros e a PSE-sessão em cada MC. Os valores de PSE-sessão apresentados durante o estudo são semelhantes a valores apresentados em outros estudos no futebol profissional. Conclui-se que no PP ocorreu a variabilidade de todos os parâmetros e estabilização no PC da Distância Total, Distância de Elevada Carga Metabólica, Distâcia Explosiva, Nº Esforços de Elevada Carga Metabólica e PSE-sessão. A PSE-sessão depende dos parâmetros Distância Explosiva, Nº Esforços de Elevada Carga Metabólica, Nº Acelerações e Nº Desacelerações, i.e., as ações de elevada exigência metabólica e neuromuscular explicam a relação existente entre os parâmetros de carga e a PSE-sessão como indicador global de carga interna. A utilização do sistema Viper possibilita a recolha de parâmetros que descrevem as exigências fisícas a que os jogadores estão sujeitos e fornece informação fundamental para o planeamento do treino em conjunto com a recolha sistemática da PSE-sessão.

Study of the impact federated erubrics on assessing competences in the practicum

Presentation Research of the Practicum and externships has a long history and involves important aspects for analysis. For example, the recent changes taking place in university grades allot more credits to the Practicum course in all grades, and the Company-University collaboration has exposed the need to study in new learning environments. The rise of ICT practices like ePortfolios, which require technological solutions and methods supported by experimentation, study and research, require particular examination due to the dynamic momentum of technological innovation. Tutoring the Practicum and externships requires remote monitoring and communication using ePortfolios, and competence-based assessment and students’ requirement to provide evidence of learning require the best tutoring methods available with ePortfolios. Among the elements of ePortfolios, eRubrics emerge as a tool for design, communication and competence-assessment. This project aims to consolidate a research line on eRubrics, already undertaken by another project -I+D+i [EDU2010-15432]- in order to expand the network of researchers and Centres of Excellence in Spain and other countries: Harvard University in USA, University of Cologne in Germany, University of Colima in Mexico, Federal University of Parana, University of Santa Catarina in Brasil, and Stockholm University in Sweden(1). This new project [EDU2013-41974-P](2) examines the impact of eRubrics on tutoring and on assessing the Practicum course and externships. Through technology, distance tutoring grants an extra dimension to human communication. New forms of teaching with technological mediation are on the rise and are highly valuable, not only for formal education but especially in both public and private sectors of non-formal education, such as occupational training, unemployed education and public servant training. Objectives Obj. 1. To analyse models of technology used in assessing learning in the Practicum of all grades at Spanish Faculties of Education. Obj. 2. To study models of learning assessment measured by eRubrics in the Practicum. Obj. 3. To analyse communication through eRubrics between students and their tutors at university and practice centres, focusing on students’ understanding of competences and evidences to be assessed in the Practicum. Obj. 4. To design assessment services and products, in order to federate companies and practice centres with training institutions. Among many other features, it has the following functions CoRubric(3) 1. The possibility to assess people, products or services by using rubrics. 2. Ipsative assessment. 3. Designing fully flexible rubrics. 4. Drafting reports and exporting results from eRubrics in a project. 5. Students and teachers talk about the evaluation and application of the criteria Methodology, Methods, Research Instruments or Sources Used The project will use techniques to collect and analyse data from two methodological approaches: 1. In order to meet the first objective, we suggest an initial exploratory descriptive study (Buendía Eisman, Colás Bravo & Hernández Pina, 1998), which involves conducting interviews with Practicum coordinators from all educational grades across Spain, as well as analysing the contents of the teaching guides used in all educational grades across Spain. 55 academic managers were interviewed from about 10 faculties of education in public universities in Spain (20%), and course guides 376 universities from 36 public institutions in Spain (72%) are analyzed. 2. In order to satisfy the second objective, 7 universities have been selected to implement the project two instruments aimed at tutors practice centers and tutors of the faculty. All instruments for collecting data were validated by experts using the Delphi method. The selection of experts had three aspects: years of professional experience, number and quality of publications in the field (Practicum, Educational Technology and Teacher Training), and self-rating of their knowledge. The resulting data was calculated using the Coefficient of Competence (Kcomp) (Martínez, Zúñiga, Sala & Meléndez, 2012). Results in all cases showed an average experience of more than 0.09 points. The two instruments of the first objective were validated during the first half of 2014-15 year, data collected during the second half. And the second objective during the first half of 2015-16 year and data collection for the second half. The set of four instruments (two for each objective 1 and 2) have the same dimensions as each of the sources (Coordinators, course guides, tutors of practice centers and faculty) as they were: a. Institution-Organization, b. Nature of internships, c. Relationship between agents, d. Management Practicum, e. Assessment. F. Technological support, g. Training and h. Assessment Ethics. Conclusions, Expected Outcomes or Findings The first results respond to Objective 1, where we find different conclusions depending on each of the six dimensions. In the case of internal regulations governing the organization and structure of the practicum, we note that most traditional degrees (Elementary and Primary grades) share common internal rules, in particular development methodology and criteria against other grades (Pedagogy and Social Education ). It is also true that the centers of practices in last cases are very different from each other and can be a public institution, a school, a company, a museum, etc. The memory with a 56.34% and 43.67% daily activities are more demands on students in all degrees, Lesson plans 28.18% 19.72% Portfolio 26.7% Didactic units and Others 32,4%. The technical support has been mainly used the platform of the University 47.89% and 57.75% Email, followed by other services and tools 9.86% and rubric platforms 1.41%. The assessment criteria are divided between formal aspects of 12.38%, Written expresión 12.38%, treatment of the subject 14.45%, methodological rigor of work 10.32%, and Level of argument Clarity and relevance of conclusions 10.32%. In general terms, we could say that there is a trend and debate between formative assessment against a accreditation. It has not yet had sufficient time to further study and confront other dimensions and sources of information. We hope to provide more analysis and conclusions in the conference date.

The influence of actions on auditory perception: cognitive and neural mechanisms

It is well known that self-generated stimuli are processed differently from externally generated stimuli. For example, many people have noticed since childhood that it is very difficult to make a self-tickling. In the auditory domain, self-generated sounds elicit smaller brain responses as compared to externally generated sounds, known as the sensory attenuation (SA) effect. SA is manifested in reduced amplitudes of evoked responses as measured through MEEG, decreased firing rates of neurons and a lower level of perceived loudness for self-generated sounds. The predominant explanation for SA is based on the idea that self-generated stimuli are predicted (e.g., the forward model account). It is the nature of their predictability that is crucial for SA. On the contrary, the sensory gating account emphasizes a general suppressive effect of actions on sensory processing, regardless of the predictability of the stimuli. Both accounts have received empirical support, which suggests that both mechanisms may exist. In chapter 2, three behavioural studies concerning the influence of motor activation on auditory perception were presented. Study 1 compared the effect of SA and attention in an auditory detection task and showed that SA was present even when substantial attention was paid to unpredictable stimuli. Study 2 compared the loudness perception of tones generated by others between Chinese and British participants. Compared to externally generated tones, a decrease in perceived loudness for others generated tones was found among Chinese but not among the British. In study 3, partial evidence was found that even when reading words that are related to action, auditory detection performance was impaired. In chapter 3, the classic SA effect of M100 suppression was replicated with MEG in study 4. With time-frequency analysis, a potential neural information processing sequence was found in auditory cortex. Prior to the onset of self-generated tones, there was an increase of oscillatory power in the alpha band. After the stimulus onset, reduced gamma power and alpha/beta phase locking were found. The three temporally segregated oscillatory events correlated with each other and with SA effect, which may be the underlying neural implementation of SA. In chapter 4, a TMS-MEG study was presented investigating the role of the cerebellum in adapting to delayed presentation of self-generated tones (study 5). It demonstrated that in sham stimulation condition, the brain can adapt to the delay (about 100 ms) within 300 trials of learning by showing a significant increase of SA effect in the suppression of M100, but not M200 component. Whereas after stimulating the cerebellum with a suppressive TMS protocol, the adaptation in M100 suppression disappeared and the pattern of M200 suppression reversed to M200 enhancement. These data support the idea that the suppressive effect of actions on auditory processing is a consequence of both motor driven sensory predictions and general sensory gating. The results also demonstrate the importance of neural oscillations in implementing SA effect and the critical role of the cerebellum in learning sensory predictions under sensory perturbation.

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.