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.

MOTIVATION AND SATISFACTION IN CONTEXT OF JOB TRAINING IN TOURIST ORGANIZATIONS

This research aims to determine the dimensions of motivation and satisfaction, acquired, through the perception in context of job training, by future technicians (students) in the hospitality and tourism industry, particularly by technical courses in the hotel and restaurant sector. The methodology comprises three distinct stages. First were recovered instruments (questionnaires), already validated by other authors of motivation and satisfaction, which had the intention to replicate studies conducted in other scientific knowledge fields, such as tourism. Those instruments were recovered from the reviewed literature conducted about other themes. On second place the measuring instruments were submitted to a pre-test, or rather, were subject of a pioneer study, in order to verify other assumptions such as semantic errors or see if there was the possibility of some prepared questions to be consider invalidated by poor formulation or interpretation. Finally, were applied in three educational institutions who agreed to cooperate on the research, with the reservation that the interviewed needed a mandatory pre-requirement that consisted in conducting a minimum training in work context (TWC). Then, proceed the statistical analysis to support all the empirical part. The results show that, in general, motivation and satisfaction were present during the period of training in work context. To some people it meant a very important period of personal and professional life, concerning the interactions, emotions and involvement with touristic organizations but also the personal and social relationships.

¿Quién es el sujeto en la investigación educativa?

Recibido 22 de mayo de 2011 • Acepta 29 de agosto de 2011 • Corregido 4 de setiembre de 2011   En este artículo argumento, en primer lugar, que la identidad de quien investiga incide no solo en su forma de investigar, sino también en los procesos de formación de sus estudiantes y, por ende, en la formación de las futuras investigadoras y los futuros investigadores educativos. En segundo lugar, señalo que las instituciones educativas, así como sus docentes, juegan un rol central en la construcción de identidades. En tercer lugar, enfatizo que de esta responsabilidad no se eximen quienes se dedican a la investigación educativa, por lo que les invito a reflexionar sobre: ¿Cuáles son nuestras responsabilidades en el proceso de construcción de identidades? ¿Quién es el sujeto de la educación? ¿Quién es el sujeto de la investigación educativa y en ella?¿Cuán inclusivas son nuestras nociones de sujeto educativo y del sujeto empírico? Mediante el desarrollo y análisis de interrogantes sobre temas como: la relación sujeto-objeto; el sujeto en la investigación educativa; el aporte de la subjetividad; la contribución de la fenomenología; entre otros, argumento que: a) la autobiografía intelectual es un instrumento de gran potencialidad para comprender el tono y la dirección de un proceso investigativo y b) centrar la atención en las personas, en su historia, sus relaciones sociales y su ambiente, como sujetos actuantes y no solo como objetos de estudio es un movimiento epistémico, político y ético, puesto que reconoce la acción del sujeto en el mundo y sobre este. Por último, apelo a que las investigadoras y los investigadores cualitativos no solo deben comprender quiénes son, sino que también deben hacerlo explícito puesto que hay un condicionamiento ético que lo demanda.

My place through my eyes : a social constructionist approach to researching the relationships between socioeconomic living contexts and physical activity

There is a growing evidence-base in the epidemiological literature that demonstrates significant associations between people’s living circumstances – including their place of residence – and their health-related practices and outcomes (Leslie, 2005; Karpati, Bassett, & McCord, 2006; Monden, Van Lenthe, & Mackenbach, 2006; Parkes & Kearns, 2006; Cummins, Curtis, Diez-Roux, & Macintyre, 2007; Turrell, Kavanagh, Draper, & Subramanian, 2007). However, these findings raise questions about the ways in which living places, such as households and neighbourhoods, figure in the pathways connecting people and health (Frolich, Potvin, Chabot, & Corin, 2002; Giles-Corti, 2006; Brown et al, 2006; Diez Roux, 2007). This thesis addressed these questions via a mixed methods investigation of the patterns and processes connecting people, place, and their propensity to be physically active. Specifically, the research in this thesis examines a group of lower-socioeconomic residents who had recently relocated from poorer suburbs to a new urban village with a range of health-related resources. Importantly, the study contrasts their historical relationship with physical activity with their reactions to, and everyday practices in, a new urban setting designed to encourage pedestrian mobility and autonomy. The study applies a phenomenological approach to understanding living contexts based on Berger and Luckman’s (1966) conceptual framework in The Social Construction of Reality. This framework enables a questioning of the concept of context itself, and a treatment of it beyond environmental factors to the processes via which experiences and interactions are made meaningful. This approach makes reference to people’s histories, habituations, and dispositions in an exploration between social contexts and human behaviour. This framework for thinking about context is used to generate an empirical focus on the ways in which this residential group interacts with various living contexts over time to create a particular construction of physical activity in their lives. A methodological approach suited to this thinking was found in Charmaz’s (1996; 2001; 2006) adoption of a social constructionist approach to grounded theory. This approach enabled a focus on people’s own constructions and versions of their experiences through a rigorous inductive method, which provided a systematic strategy for identifying patterns in the data. The findings of the study point to factors such as ‘childhood abuse and neglect’, ‘early homelessness’, ‘fear and mistrust’, ‘staying indoors and keeping to yourself’, ‘conflict and violence’, and ‘feeling fat and ugly’ as contributors to an ongoing core category of ‘identity management’, which mediates the relationship between participants’ living contexts and their physical activity levels. It identifies barriers at the individual, neighbourhood, and broader ecological levels that prevent this residential group from being more physically active, and which contribute to the ways in which they think about, or conceptualise, this health-related behaviour in relationship to their identity and sense of place – both geographic and societal. The challenges of living well and staying active in poorer neighbourhoods and in places where poverty is concentrated were highlighted in detail by participants. Participants’ reactions to the new urban neighbourhood, and the depth of their engagement with the resources present, are revealed in the context of their previous life-experiences with both living places and physical activity. Moreover, an understanding of context as participants’ psychological constructions of various social and living situations based on prior experience, attitudes, and beliefs was formulated with implications for how the relationship between socioeconomic contextual effects on health are studied in the future. More detailed findings are presented in three published papers with implications for health promotion, urban design, and health inequalities research. This thesis makes a substantive, conceptual, and methodological contribution to future research efforts interested in how physical activity is conceptualised and constructed within lower socioeconomic living contexts, and why this is. The data that was collected and analysed for this PhD generates knowledge about the psychosocial processes and mechanisms behind the patterns observed in epidemiological research regarding socioeconomic health inequalities. Further, it highlights the ways in which lower socioeconomic living contexts tend to shape dispositions, attitudes, and lifestyles, ultimately resulting in worse health and life chances for those who occupy them.

Shaping and re-shaping social capital in buyer-supplier relationships

Social capital plays an important role in explaining how value is created from firms' network relationships, but little is understood about how social capital is shaped over time and how it is re-shaped when firms consolidate their network ties. In response, this study explores the evolution of social capital in buyer–supplier relationships through a case study of a company undertaking radical product innovation, and examines the corresponding changes in the firm's network of buyer–supplier relationships. The analysis shows that social capital is built in a decidedly non-linear and non-uniform manner. The study also reveals considerable interaction among the dimensions of social capital throughout the evolution of the firm's network, and emphasizes the importance of the cognitive dimension—a feature receiving little attention thus far. The evidence shows, too, that efforts to strengthen social capital need to increase when network ties are sacrificed to prevent unintended consequences for firms' longer-term value creation.

I’m friends with Louie the Fly, not Mortein : Conceptualising the new brand relationships on social media

Spokes-characters are ‘...animated beings or objects, created to promote a product, service or idea’ (Phillips 1996, p.155). They were first used in the late 1800s when they emerged as registered trademarks, but the use of spokes-characters for marketing communications has since grown, owing to their ability to remind consumers about a product, transfer positive associations to a brand, and give a corporate company a more ‘personal’ face (Callcott and Lee 1995). One example is the Michelin Man, who has served as spokes-character for Michelin tyres since 1898, after starting out in print advertising. Spokes-characters have become important brand representatives, no longer seen as simply entertaining cartoons featured in television and magazine advertisements. Corporations have now extended their use to interactive, social media platforms, where a consumer can be ‘friends’ with a spokes-character via Facebook, read their comments on the latest iPhone release through Twitter, and watch their family histories being documented on YouTube (see Figure 1). The interactions that consumers once had with two-dimensional spokes-characters have undergone significant transformation in the digital space. With spokes-character Facebook pages achieving significant numbers of ‘likes’ and interactions with consumers, one question concerns whether this strategy is creating characters that are more engaging than the brands they represent, and what impact this has on brand outcomes.

I’m friends with Louie the Fly, not Mortein : conceptualising the new brand relationships on social media [Reprint]

Social media offers many opportunities for building brand relationships. One method of fostering relationships is to create a social media presence for the company spokes-character. Anecdotal evidence suggests that such a strategy can be very effective, though empirical research is needed. This paper reviews what is known and highlights a concern, based on analysis of the case of Louie the Fly and Mortein, that consumers may interact with characters as if they were separate to their parent brand. Hence positive associations with the character may not translate into positive brand outcomes. Following discussion, a model is proposed for testing.

Understanding causal relationships between the built and social environment, health and associated behaviours and risk factors

Introduction: Built environment interventions designed to reduce non-communicable diseases and health inequity, complement urban planning agendas focused on creating more ‘liveable’, compact, pedestrian-friendly, less automobile dependent and more socially inclusive cities.However, what constitutes a ‘liveable’ community is not well defined. Moreover, there appears to be a gap between the concept and delivery of ‘liveable’ communities. The recently funded NHMRC Centre of Research Excellence (CRE) in Healthy Liveable Communities established in early 2014, has defined ‘liveability’ from a social determinants of health perspective. Using purpose-designed multilevel longitudinal data sets, it addresses five themes that address key evidence-base gaps for building healthy and liveable communities. The CRE in Healthy Liveable Communities seeks to generate and exchange new knowledge about: 1) measurement of policy-relevant built environment features associated with leading non-communicable disease risk factors (physical activity, obesity) and health outcomes (cardiovascular disease, diabetes) and mental health; 2) causal relationships and thresholds for built environment interventions using data from longitudinal studies and natural experiments; 3) thresholds for built environment interventions; 4) economic benefits of built environment interventions designed to influence health and wellbeing outcomes; and 5) factors, tools, and interventions that facilitate the translation of research into policy and practice. This evidence is critical to inform future policy and practice in health, land use, and transport planning. Moreover, to ensure policy-relevance and facilitate research translation, the CRE in Healthy Liveable Communities builds upon ongoing, and has established new, multi-sector collaborations with national and state policy-makers and practitioners. The symposium will commence with a brief introduction to embed the research within an Australian health and urban planning context, as well as providing an overall outline of the CRE in Healthy Liveable Communities, its structure and team. Next, an overview of the five research themes will be presented. Following these presentations, the Discussant will consider the implications of the research and opportunities for translation and knowledge exchange. Theme 2 will establish whether and to what extent the neighbourhood environment (built and social) is causally related to physical and mental health and associated behaviours and risk factors. In particular, research conducted as part of this theme will use data from large-scale, longitudinal-multilevel studies (HABITAT, RESIDE, AusDiab) to examine relationships that meet causality criteria via statistical methods such as longitudinal mixed-effect and fixed-effect models, multilevel and structural equation models; analyse data on residential preferences to investigate confounding due to neighbourhood self-selection and to use measurement and analysis tools such as propensity score matching and ‘within-person’ change modelling to address confounding; analyse data about individual-level factors that might confound, mediate or modify relationships between the neighbourhood environment and health and well-being (e.g., psychosocial factors, knowledge, perceptions, attitudes, functional status), and; analyse data on both objective neighbourhood characteristics and residents’ perceptions of these objective features to more accurately assess the relative contribution of objective and perceptual factors to outcomes such as health and well-being, physical activity, active transport, obesity, and sedentary behaviour. At the completion of the Theme 2, we will have demonstrated and applied statistical methods appropriate for determining causality and generated evidence about causal relationships between the neighbourhood environment, health, and related outcomes. This will provide planners and policy makers with a more robust (valid and reliable) basis on which to design healthy communities.

Studying relationships in project management through social network analysis

Successful project management depends upon forming and maintaining relationships between and among project team members and stakeholder groups. The nature of these relationships and the patterns that they form affect communication, collaboration and resource flows. Networks affect us directly, and we use them to influence people and processes. Social Network Analysis (SNA) can be an extremely valuable research tool to better understand how critical social networks develop and influence work processes, particularly as projects become larger and more complex. This chapter introduces foundational network concepts, helps you determine if SNA could help you answer your research questions, and explains how to design and implement a social network study. At the end of this chapter, the reader can: understand foundational concepts about social networks; decide if SNA is an appropriate research methodology to address particular questions or problems; design and implement a basic social network study.

The Relational Self, the Social Bond and the Dynamics of Personal Relationships : A Sociological Analysis

This study analyses personal relationships linking research to sociological theory on the questions of the social bond and on the self as social. From the viewpoint of disruptive life events and experiences, such as loss, divorce and illness, it aims at understanding how selves are bound to their significant others as those specific people ‘close or otherwise important’ to them. Who form the configurations of significant others? How do different bonds respond in disruptions and how do relational processes unfold? How is the embeddedness of selves manifested in the processes of bonding, on the one hand, and in the relational formation of the self, on the other? The bonds are analyzed from an anti-categorical viewpoint based on personal citations of significance as opposed to given relationship categories, such as ‘family’ or ‘friendship’ – the two kinds of relationships that in fact are most frequently significant. The study draws from analysis of the personal narratives of 37 Finnish women and men (in all 80 interviews) and their entire configurations of those specific people who they cite as ‘close or otherwise important’. The analysis stresses the subjective experiences, while also investigating the actualized relational processes and configurations of all personal relationships with certain relationship histories embedded in micro-level structures. The research is based on four empirical sub-studies of personal relationships and a summary discussing the questions of the self and social bond. Discussion draws from G. H. Mead, C. Cooley, N. Elias, T. Scheff, G. Simmel and the contributors of ‘relational sociology’. Sub-studies analyse bonds to others from the viewpoint of biographical disruption and re-configuration of significant others, estranged family bonds, peer support and the formation of the most intimate relationships into exclusive and inclusive configurations. All analyses examine the dialectics of the social and the personal, asking how different structuring mechanisms and personal experiences and negotiations together contribute to the unfolding of the bonds. The summary elaborates personal relationships as social bonds embedded in wider webs of interdependent people and social settings that are laden with cultural expectations. Regarding the question of the relational self, the study proposes both bonding and individuality as significant. They are seen as interdependent phases of the relationality of the self. Bonding anchors the self to its significant relationships, in which individuality is manifested, for example, in contrasting and differentiating dynamics, but also in active attempts to connect with others. Individuality is not a fixed quality of the self, but a fluid and interdependent phase of the relational self. More specifically, it appears in three formats in the flux of relational processes: as a sense of unique self (via cultivation of subjective experiences), as agency and as (a search for) relative autonomy. The study includes an epilogue addressing the ambivalence between the social expectation of individuality in society and the bonded reality of selves.

Relationships matter: The problems and prospects for social workers' relationships with young children in care

One of the key lessons learnt in the UK from the Laming Inquiry into the death of Victoria Climbié was the importance of social workers developing consistent and long-term relationships with young children in whose lives they are involved. This issue is now informing policy developments, including the proposed Social Work Practices which, based on a similar model to General Practitioner practices, aim to provide a lead professional to act as a parental figure and an advocate for every child in care. This paper begins by confirming the importance of developing relationships between social workers and young children, but questions the ability of the new policy developments to facilitate these. Drawing upon data from research involving interviews with social workers, the paper outlines the factors which hinder social workers' relationships with young children and argues that while the new proposals address some of the more surface structural and organizational factors, they do not address the deeper factors regarding attitudes, values and emotional competence which are crucial if social workers are to successfully build relationships with young children in care.