Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Don't get mad, get even: How employees abused by their supervisor retaliate against the organization and undermine their spouses

My study investigated the effects of abusive supervision on work and family outcomes including supervisor-directed and organization-directed deviance and spousal undermining. Using a moderated-mediation model, the relationship of abusive supervision on outcome variables was proposed to be mediated by moral courage and moderated by leader-member exchange (a-path) and work and family role quality (b-path). Two separate studies were conducted using a sample (N=200) recruited through Amazon’s Mechanical Turk and through relatives of students at a large US public southeastern university (N=150 dyads). Results confirm the effects of abusive supervision on work and family outcomes while analyses of contextual and conditional factors are mixed. Confirmatory factor analyses, factor loadings, and model fit statistics are provided and implications for research and practice are discussed.^

Young people's well-being and the economic crisis: How does parental unemployment and family wealth affect the downturn experience?

Background: Portugal is among the European countriesmost severely hit by the economic recession and the fifth with the highest unemployment rate. Given that adolescents' development is highly influenced by their living contexts, monitoring the repercussions of the economic recession is essential for the evaluation and improvement of their current and future public health. Objective: To investigate youth perceived repercussions of the economic recession, its association with life satisfaction, as well as to assess differences across parental employment status and family perceived wealth. Methods: Data were drawn from the Portuguese 2014 Health Behaviour in School-aged children survey, aWHO collaborative cross-national study, with a nationally representative sample of 2748 students (Mage = 14.7 years ± 1.2; 48% boys). Descriptive statistics and linear regression models were performed. Results: Levels of life satisfaction are lower when young people perceive that the economic recession generated negative lifestyle changes. Having unemployed parents was found to be significantly associated with perceiving such repercussions and family wealth to decrease the perception of repercussions of the recession. Conclusions: Findings enhance our understanding of how Portuguese youth are being affected by the socioeconomic conditions surrounding them. Such information contributes to improve future research and also allow some considerations about the policies aimed at protecting young people'swellbeing during a period of high unemployment and socioeconomic downturn.

Investigating the Roles and Requirements, Manifestations and Management of Metadata in the Creation of Reliable and Preservation of Authentic Electronic Entities Created by Dynamic, Interactive and Experiential Systems: Report on the Work and Findings of the Interpares 2 Description Cross Domain Group

Metadata that is associated with either an information system or an information object for purposes of description, administration, legal requirements, technical functionality, use and usage, and preservation, plays a critical role in ensuring the creation, management, preservation and use and re-use of trustworthymaterials, including records. Recordkeeping1 metadata, of which one key type is archival description, plays a particularly important role in documenting the reliability and authenticity of records and recordkeeping systemsas well as the various contexts (legal-administrative, provenancial, procedural, documentary, and technical) within which records are created and kept as they move across space and time. In the digital environment, metadata is also the means by which it is possible to identify how record components – those constituent aspects of a digital record that may be managed, stored and used separately by the creator or the preserver – can be reassembled to generate an authentic copy of a record or reformulated per a user’s request as a customized output package.Issues relating to the creation, capture, management and preservation of adequate metadata are, therefore, integral to any research study addressing the reliability and authenticity of digital entities, regardless of the community, sector or institution within which they are being created. The InterPARES 2 Description Cross-Domain Group (DCD) examined the conceptualization, definitions, roles, and current functionality of metadata and archival description in terms of requirements generated by InterPARES 12. Because of the needs to communicate the work of InterPARES in a meaningful way across not only other disciplines, but also different archival traditions; to interface with, evaluate and inform existing standards, practices and other research projects; and to ensure interoperability across the three focus areas of InterPARES2, the Description Cross-Domain also addressed its research goals with reference to wider thinking about and developments in recordkeeping and metadata. InterPARES2 addressed not only records, however, but a range of digital information objects (referred to as “entities” by InterPARES 2, but not to be confused with the term “entities” as used in metadata and database applications) that are the products and by-products of government, scientific and artistic activities that are carried out using dynamic, interactive or experiential digital systems. The nature of these entities was determined through a diplomatic analysis undertaken as part of extensive case studies of digital systems that were conducted by the InterPARES 2 Focus Groups. This diplomatic analysis established whether the entities identified during the case studies were records, non-records that nevertheless raised important concerns relating to reliability and authenticity, or “potential records.” To be determined to be records, the entities had to meet the criteria outlined by archival theory – they had to have a fixed documentary format and stable content. It was not sufficient that they be considered to be or treated as records by the creator. “Potential records” is a new construct that indicates that a digital system has the potential to create records upon demand, but does not actually fix and set aside records in the normal course of business. The work of the Description Cross-Domain Group, therefore, addresses the metadata needs for all three categories of entities.Finally, since “metadata” as a term is used today so ubiquitously and in so many different ways by different communities, that it is in peril of losing any specificity, part of the work of the DCD sought to name and type categories of metadata. It also addressed incentives for creators to generate appropriate metadata, as well as issues associated with the retention, maintenance and eventual disposition of the metadata that aggregates around digital entities over time.

The flip side of fly-in-fly-out : the use of 457 visas by smaller firms in the Western Australian resources sector

The focus in this article is how the extensive use of fly-in fly-out (FIFO) working arrangements in the Western Australian resources sector has an impact directly and indirectly on smaller firms and their ability to recruit workers in remote locations. We argue that the growth of FIFO working arrangements has disadvantaged smaller resource-sector firms by increasing their employment costs and decreasing their ability to attract skilled workers. As a result, smaller resource-sector firms are recruiting skilled workers on 457 visas to secure their business stability and growth, despite the complexity, costs, and risks involved.

Predictors of disability retirement: From early intentions to retirement

The strong tendency of elderly employees to retire early and the simultaneous aging of the population have been major topics of policy and scientific debate. A key concern has been the financing of future pension schemes and possible labour shortage, especially in social and health services within the public sector. The aging of the population is inevitable, but efforts can be made to prevent or postpone early exit from the labour force, e.g., by identifying and intervening in the factors that contribute to the process of early retirement due to disability. The associations of intentions to retire early, poor mental health and different psychosocial factors with the process of disability retirement are still poorly understood. The purpose of this study was to investigate the associations of intentions to retire early, poor mental health, work and family related psychosocial factors and experiences of earlier life stages with the process of disability retirement. The data were derived from the Helsinki Health Study (HHS, N=8960) and the Health and Social Support Study (HeSSup, N=25 901). The Helsinki Health Study is an ongoing employee cohort study among middle-aged women and men. The Health and Social Support Study is an ongoing longitudinal study of a working-age sample representative of the Finnish population. The analyses were restricted to respondents 40 years of age or older. Age and gender adjusted prevalence and incidence rates were calculated. Associations were studied by using logistic, multinomial and Cox regression. Strong intentions to retire early were common among employees. Poor mental health, unfavourable working conditions and work-to-family conflicts were clearly associated with increased intentions to retire early. Strong intentions to retire early predicted disability retirement. Risk of disability retirement increased in a dose-response manner with increasing number of childhood adversities. Poor mental and somatic health, life dissatisfaction, heavy alcohol consumption, current smoking, obesity and low socioeconomic status were also predictors of disability retirement. The impact of poor mental health and adverse experiences from earlier life stages, work and family related psychosocial factors, e.g., work-family interface, the subjective experience of well-being and health related risk behaviours on the process of disability retirement should be recognised. Preventive measures against disability retirement should be launched before subjective experience of ill health, work disability and strong intentions to retire early emerge.

El desarrollo profesional de los trabajadores como ventaja competitiva de las empresas

[ES] En este trabajo se hace una revisión de la literatura sobre el concepto de profesión y a continuación se propone un modelo de desarrollo profesional en el que se destacan los retos profesionales de los trabajadores y la posibilidad de las empresas de ayudarles a afrontarlos. También se analizan los sistemas de desarrollo profesional y los roles que en ellos juegan empleados, directores y empresas. Para finalizar, se exponen varias cuestiones de actualidad relativas al desarrollo profesional: incorporación y orientación, estabilización, obsolescencia de las habilidades, doble trayectoria profesional, conflictos trabajo-familia, pérdida del puesto de trabajo y jubilación.

Serviço social e saúde da família: perspectivas de inserção e prática profissional

O presente trabalho tem como objetivo reconhecer as experiências de inserção do assistente social na Saúde da Família e as tendências da prática profissional nessa área. Diante das repercussões da contrarreforma na política e nas práticas de saúde, questionamos como o Serviço Social tem pautado suas experiências de inserção frente às contradições da Saúde da Família. Para isso, a pesquisa é baseada no referencial crítico dialético, em que utilizamos a metodologia da pesquisa documental com levantamento quanti-qualitativo. A análise foi realizada a partir das comunicações com referência à Saúde da Família do Congresso Brasileiro de Assistentes Sociais (CBAS) e Congresso Nacional de Serviço Social em Saúde (CONASSS) entre os anos de 2000 a 2009. Nos trabalhos foram identificados três eixos temáticos: Análise da Estratégia, Relato de experiência e Reflexão das possibilidades de inserção. A partir desses eixos buscamos reconhecer a dimensão teórico-metodológica, ético-política e técnico-operativa. Os resultados apontam que os assistentes sociais têm ocupado predominantemente funções de suporte em equipes de referência e que esta tem se apresentado como a possibilidade de inserção oficial através do NASF. Nas abordagens reconhecemos que as experiências pautadas na perspectiva crítica contam com histórico de articulação com os movimentos sociais, com referência à Reforma Sanitária e as discussões da categoria, e na prática, esses conceitos direcionam o processo de trabalho. Verificamos que há uma tendência majoritária de incorporação do discurso do Ministério da Saúde quanto à estrutura e processo de trabalho em Saúde da Família, o que tem contribuído para a incorporação de instrumentais construídos pela Estratégia na prática profissional. Essa tendência aponta que a inserção dos assistentes sociais na Saúde da Família tem recebido influências de vertentes neoconservadoras e sofrido os impactos da contrarreforma na política de saúde.

制造业技术工人工作-家庭关系的影响因素及其作用机制

The work-family relations included positive relationship (work-family enrichment) and negative relationship (work-family conflict). Along with the development of positive psychology, the researchers turned their focus from work-family conflict to work-family enrichment. On the other hand, the research between work and family had just started and most attention was fix on work-family conflict. This research based on the skilled workers in manufacturing, and tried to discuss antecedents and the machanism of work-family relations through a series research which include action relation among job characteristics, work-family relations and outcomes of work, and the action relation among job resource、work-family relations、marital adjustment、work outcomes and role salience. This subject made the investigation to the workers who are working in manufacturing through literature research, questionnaire surveys and other methods. In this subject, several statistical techniques such as Explore Factor Analysis（CFA）,Structural Equation Modeling（SEM）, multiple-group Analysis were used to get the following conclusion: Firstly, work-family enrichment was an independent variable in work-family conflict, which had more extensively influence. Work-family conflict would increase accompany with the increasing of job demand, and it also would enhance negative work outcomes; work-family enrichment was effected by both job demand and job resource, and it made positive influence to positive and negative work outcomes. Secondly, marital adjustment penetrated into work domain through work-family enrichment inner effect mechanism, and influenced the work outcomes. The work→family enrichment and family→work enrichment could facilitate mutually, marital adjustment influenced the work outcome by the reciprocal relationship of work→family enrichment ↔ family→work enrichment. Finally, the family-role salience had directed loop-enhanced effect to organizational commitment and the importance could also enhance the positive function of work→family enrichment to organizational commitment.

La incidencia de los valores culturales en el voluntariado: el caso de Europa

La realidad del voluntariado es sumamente compleja hasta el punto de que resulta complicado definir y caracterizar el trabajo voluntario, dada la gran variedad de interpretaciones, motivaciones, variables sociodemográficas y aspectos culturales que configuran el perfil de los voluntarios. El objetivo de este trabajo es analizar la influencia conjunta de algunas variables sociodemográficas, así como de los valores culturales de índole secular o tradicional, sobre el perfil de los voluntarios en Europa. Además, se investiga qué variables orientan a los voluntarios hacia un determinado tipo de voluntariado u otro. Para ello se ha aplicado principalmente una metodología de regresión logística a partir de la información disponible en la European Value Study. Los resultados obtenidos ayudan a establecer una caracterización del voluntariado en Europa, y confirman la influencia de los valores culturales, en primer lugar, en la realización o no de trabajos de voluntariado, y en segundo lugar, en la elección que hacen estas personas del tipo de actividad con la que están comprometidos. Al analizar dos tipos de voluntariado de motivación supuestamente muy diferente, se concluye que existe un grupo de valores que influyen en ambos, aunque el sentido y la intensidad en la que lo hacen sea diferente; por otra parte, algunos valores tienen influencia o no en la realización de trabajos de voluntariado, dependiendo del tipo específico al que nos refiramos.

Conciliação família-trabalho em famílias monoparentais:uma abordagem comparativa de género

Tese de doutoramento, Ciências Sociais (Sociologia Geral), Universidade de Lisboa, Instituto de Ciências Sociais, 2013

A relação trabalho-família : o desafio para ontem

Tese de doutoramento, Psicologia (Psicologia dos Recursos Humanos, do Trabalho e das Organizações), Universidade de Lisboa, Faculdade de Psicologia, 2016

Vers une politique de conciliation travail- famille au Québec : des enjeux complexes et en évolution

Au cours des dernières décennies, le thème de la conciliation travail-famille s’est taillé une place importante dans le discours populaire, médiatique et politique tant au Québec, dans les pays industrialisés que dans les organismes internationaux. L’expression désigne les défis que posent pour les individus, les couples, les familles, les milieux de travail et la société en général la relation nouvelle qui s’est développée entre ces deux sphères de vie avec le passage d’une société industrielle à une société dite postindustrielle. Ces défis perçus, ressentis, identifiés et définis différemment par l’un ou l’autre de ces acteurs se sont traduits par l’inscription de cette question à l’agenda politique des gouvernements, ici comme ailleurs. L’objet de la recherche est de comprendre les dynamiques entourant le développement des actions de l’État québécois sur le thème de la conciliation travail-famille. La recherche s’intéresse aux acteurs (Intérêts) qui ont participé aux processus de développement des mesures de conciliation travail-famille et au contexte Institutionnel qui encadre leurs interactions avec les décideurs. À ce titre, la recherche permet de vérifier si le développement de la politique familiale québécoise peut être situé dans ce qui a été désigné comme le « modèle québécois de développement ». La variable « Idée » complète le cadre théorique de l’analyse du développement de la politique de conciliation travail-famille au Québec selon l’approche dite « des 3 I ».

Concilier le travail et la famille dans un monde en changement : l'importance du temps, du sexe et de l'efficacité personnelle

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal

Pauvreté des familles monoparentales. Le Canada et le Québec dans l’univers des régimes providentiels

La pauvreté monoparentale touche de nombreux pays développés au point que la monoparentalité est restée pendant longtemps associée à la pauvreté. Malgré les efforts de l’État-providence, les systèmes de protection sociale s’avèrent souvent inefficaces et inadaptés aux changements de la structure familiale et de la diversité des modes de résidence. Or, les situations des familles monoparentales ne sont pas semblables d’une société à une autre. Certaines sociétés adoptent des régimes providentiels qui offrent des conditions plutôt favorables aux familles quel que soit leur statut (monoparental ou biparental), tandis que d’autres se caractérisent par des systèmes moins égalitaires et moins favorables aux familles monoparentales. Notre thèse cherche à déconstruire le lien entre la pauvreté et la monoparentalité en poussant plus loin la réflexion sur les régimes providentiels. Le bien-être des familles monoparentales dépend des arrangements institutionnels des régimes qui assurent des ressources à travers les trois piliers que sont l’État, le marché et la famille. Certaines sociétés favorisent le pilier de l’État comme principal pourvoyeur de ressources alors que d’autres mettent l’accent sur le marché. Dans d’autres cas, la solidarité familiale est considérée comme étant fondamentale dans le bien-être des individus. Parmi ces trois piliers, il est souvent difficile de trouver la combinaison la plus appropriée pour protéger les familles monoparentales et leur assurer une certaine sécurité et une autonomie économique. Lorsque les gouvernements adoptent la politique de prise en charge des familles monoparentales, ces dernières deviennent très dépendantes de l’assistance sociale et des programmes d’aide publique. Dans un contexte libéral, les mesures d’incitation au travail qui visent les chefs de famille monoparentale ont plutôt tendance à réduire cette dépendance. Mais dans bien des cas, les familles monoparentales sont amenées à dépendre d’un revenu du marché qui ne les aide pas toujours à sortir de la pauvreté. Lorsque nous regardons le troisième pilier, celui de la famille, il s’avère souvent que les solidarités qui proviennent de cette source sont limitées et occasionnelles et nécessitent parfois une réglementation spéciale pour les dynamiser (comme c’est le cas des pensions alimentaires). L’articulation de ces piliers et leur apport au bien-être des familles monoparentales soulève une question fondamentale : Quelles sont les possibilités pour les chefs de famille monoparentale de fonder et maintenir un ménage autonome qui ne soit ni pauvre ni dans la dépendance par rapport à une seule source de revenu qui peut provenir de l’État, du marché ou de la famille ? Pour examiner cette question, nous avons procédé à des comparaisons internationales et interprovinciales à partir des données du Luxembourg Income Study (LIS). Le choix des comparaisons internationales est très utile pour situer le Québec dans un environnement de régimes providentiels avec un cadre théoriquement et conceptuellement structuré pour comprendre les politiques de lutte contre la pauvreté monoparentale. Cette recherche montre principalement que la pauvreté monoparentale est très problématique dans les régimes qui privilégient le marché comme principal pilier de bien-être. Elle l’est aussi dans certains pays qui privilégient les transferts et adoptent des politiques de prise en charge envers les familles monoparentales qui restent largement désavantagées par rapport aux familles biparentales. Par contre, certains régimes favorisent une complémentarité entre ce que peuvent tirer les familles du marché du travail et ce qu’elles peuvent tirer des ressources de l’État. Généralement, ce genre d’approche mène vers des taux de pauvreté plus faibles chez les familles monoparentales. Le Québec fait partie des sociétés où le marché représente une source fondamentale de bien-être. Toutefois, la pauvreté monoparentale est moins problématique que chez ses voisins d’Amérique du Nord. De nombreux chefs de famille monoparentale dans la province occupent des emplois à temps plein sans être désavantagés. Cependant, les chefs de famille monoparentale qui occupent des emplois à temps partiel sont largement plus exposés à la pauvreté. Pourtant, dans certaines sociétés, particulièrement aux Pays-Bas, ce statut d’emploi offre des conditions meilleures pour la conciliation travail-famille.