Estudo das ELI dos distritos de Braga e Bragança: um contributo para a avaliação das práticas centradas na família

Dissertação de mestrado em Educação Especial (área de especialização em Intervenção Precoce)

A intervenção precoce: uma aliada dos cuidados de saúde prestados nas Unidades de Cuidados Intensivos Neonatais?

Dissertação de mestrado em Educação Especial (área de especialização em Intervenção Precoce)

Intervenção precoce e perturbação do espetro do autismo : necessidades e prioridades das famílias de crianças dos 3-6 anos de idade

Tendo em consideração a importância da identificação das necessidades das famílias para organizar os recursos e os apoios no âmbito da intervenção centrada na família (Dunst, Trivette & Deal, 1994), o presente estudo tem como objetivos identificar e diferenciar as necessidades e prioridades das famílias de crianças com PEA apoiadas pela Intervenção Precoce. A amostra era constituída por 123 casais e respetivos filhos (116 do género masculino e 17 do género feminino) com PEA, PRC ou Síndrome de Asperger, e idades compreendidas entre os 3 e os 6 anos. As famílias eram oriundas de quatro zonas diferentes de Portugal. Foi utilizado o Inventário sobre as Necessidades e Prioridades da Família, a partir do qual nos foi possível verificar que existem diferenças entre as necessidades das famílias quanto às necessidades referentes à criança e quanto às referentes aos recursos existentes na comunidade. Também foram encontradas diferenças quando se compararam os pais e as mães, com estas a manifestarem maiores necessidades, e quando se compararam idades dos pais, com os mais novos a manifestarem maiores dificuldades. No que se refere à comparação entre níveis socioeconómicos e entre regiões geográficas de residência, os resultados não são tão conclusivos. O inventário parece, assim, ser adequado para identificar as necessidades e prioridades das famílias de crianças com PEA, facilitando a organização dos recursos e dos apoios.

Arterial properties in relation to genetic variations in the adducin subunits in a white population.

BACKGROUND: Adducin is a membrane skeleton protein, which consists of either alpha- and beta- or alpha- and gamma-subunits. We investigated whether arterial characteristics might be related to the genes encoding ADD1 (Gly460Trp-rs4961), ADD2 (C1797T-rs4984), and ADD3 (IVS11+386A>G-rs3731566). METHODS: We randomly recruited 1,126 Flemish subjects (mean age, 43.8 years; 50.3% women). Using a wall-tracking ultrasound system, we measured the properties of the carotid, femoral, and brachial arteries. We studied multivariate-adjusted phenotype-genotype associations, using a population- and family-based approach. RESULTS: In single-gene analyses, brachial diameter was 0.15 mm (P = 0.0022) larger, and brachial distensibility and cross-sectional compliance were 1.55 x 10(-3)/kPa (P = 0.013) and 0.017 mm(2)/kPa (P = 0.0029) lower in ADD3 AA than ADD3 GG homozygotes with an additive effect of the G allele. In multiple-gene analyses, the association of brachial diameter and distensibility with the ADD3 G allele occurred only in ADD1 GlyGly homozygotes. Otherwise, the associations between the arterial phenotypes in the three vascular beds and the ADD1 or ADD2 polymorphisms were not significant. In family-based analyses, the multivariate-adjusted heritability was 0.52, 0.38, and 0.30 for brachial diameter, distensibility, and cross-sectional compliance, respectively (P < 0.001). There was no evidence for population stratification (0.07 < or = P < or = 0.96). Transmission of the mutated ADD3 G allele was associated with smaller brachial diameter in 342 informative offspring (-0.12 +/- 0.04 mm; P = 0.0085) and in 209 offspring, who were ADD1 GlyGly homozygotes (-0.14 +/- 0.06 mm; P = 0.018). CONCLUSIONS: In ADD1 GlyGly homozygotes, the properties of the brachial artery are related to the ADD3 (A386G) polymorphism, but the underlying mechanism needs further clarification.

Factors influencing Intensive Care Units nurses in end-of-life decisions

OBJECTIVETo identify the factors that influence the Intensive Care Unit nurse in the decision-making process in end-of-life situations.METHODEthnographic case study, which used the theoretical framework of medical anthropology. Data were collected through semi-structured interviews with 10 nurses.RESULTSThe inductive thematic analysis enabled us to identify four themes:The cultural context of the Intensive Care Unit: decision-making in situations of end-of-life; Beliefs and subjectivity of care in end-of-life situations; Professional experience and context characteristics of end-of-life care situations; and Humanization practices in end-of-life situations: the patient and family centered care.CONCLUSIONProfessional maturity, the ability to transmit information and the ability to negotiate are directly related to the inclusion of nurses in the decision-making process.

Implementing an interfaculty series of courses on interprofessional collaboration in prelicensure health science curriculums.

Introduction: Interprofessional collaborative practices are increasingly recognized as an effective way to deal with complex health problems. However, health sciences students continue to be trained in specialized programs and have little occasion for learning in interdisciplinary contexts. Program Development: The project's purpose was to develop content and an educational design for new prelicensure interfaculty courses on interprofessional collaboration in patient and family-centered care which embedded interprofessional education principles where participants learn with, from and about each other. Implementation: Intensive training was part of a 45-hour program, offered each semester, which was divided into three 15-hour courses given on weekends, to enhance accessibility. Evaluation: A total of 215 students completed questionnaires following the courses, to assess their satisfaction with the educational content. Pre/post measures assessed perception of skills acquisition and perceived benefits of interprofessional collaboration training. Results showed a significant increase from the students' point of view in the knowledge and benefits to be gained from interprofessional collaboration training.

The Child Welfare Decategorization Program, August 2010

This Handbook is designed to outline the purposes, goals, structure, and operational procedures for Iowa’s Child Welfare Decategorization Program. The Handbook incorporates experiences gained since the inception of Decategorization in 1987. As with any initiative that began on a pilot basis, Decategorization has been an evolving program in which parameters and procedures have undergone modifications to achieve the desired results. The Handbook serves as a guidebook for implementation and operation of Decategorization and a means of communicating information on program parameters and procedures. Purposes of Decategorization of child welfare and juvenile justice funding is an initiative intended to establish systems of delivering human services based upon client needs to replace systems based upon a multitude of categorical funding programs and funding sources, each with different service definitions and eligibility requirements. Decategorization is designed to redirect child welfare and juvenile justice funding to services which are more preventive, family centered, and community-based in order to reduce use of restrictive approaches that rely on institutional, out-of home, and out-of-community care.

Säähavaintoaseman käytettävyyteen vaikuttavat tekijät

Diplomityön tarkoituksena on tuoda esiin tuotteen käytettävyyden kehittämisen tärkeyden osana uuden tuotteen kehittämistä. Tavoitteena on analysoida liikuteltavan säähavaintoaseman käytettävyyden nykytilanne ja löytää mahdollisia käytettävyyden kehittämisalueita. Työssä käydään läpi eri käytettävyyden määritteitä ja käytettävyyden testausta. Käytettävyyden tarkastelunäkökulmia ovat asiakkaiden vaatimukset tuotteelle ja yleinen käytettävyyden subjektiivinen analysointi perustuen hyväksi tunnettuihin suunnittelun perusteisiin, heuristiikkoihin. Säähavaintoasemat ovat valittu eri segmenteistä, jotta voidaan tutkia säähavaintokonseptia, jollaista ei tänäpäivänä vielä ole ja löytää käyttäjien mahdollisia tulevaisuuden tarpeita. Näin saadaan myös laaja näkökulma eri segmenteille suunnattujen säähavaintoasemien käytettävyydestä.Käytettävyyttä voidaan pitää tehokkaana myyntiargumenttina. Tämä edellyttää läheistä yhteistyötä käyttäjien kanssa ja tietoa tuotteen käyttöympäristöstä. Tuotteen tulisi tutkimusten perusteella olla yksinkertainen toiminnoiltaan ja luotettava, jotta se vastasi käyttäjien tarpeita. Työssä osoitetaan myös useita käytettävyyden kehittämisalueita, joita kehittämällä voidaan vastata käyttäjien tarpeita. Tutkimuksen perusteella tutkittavat säähavaintoasemat voisivat olla käyttäjäystävällisempiä ja vastata paremmin käyttäjän tarpeita.Jatkotoimenpiteinä ehdotetaan esille tulleiden säähavaintoseman käytettävyyden osa-alueiden tarkempaa kartoittamista ja erityisesti käyttäjien tomintaympäristöjen ymmärtämistä. Näin varmistetaan käyttäjäystävällisyyden huomioiminen aikaisessa tuotesuunnitteluprosessin vaiheessa. Tuotteen käytettävyyden huomioiminen aikaisessa suunnitteluvaiheessa on yleensä myös edullista yhtiölleDiplomityön tarkoituksena on tuoda esiin tuotteen käytettävyyden kehittämisen tärkeyden osana uuden tuotteen kehittämistä. Tavoitteena on analysoida liikuteltavan säähavaintoaseman käytettävyyden nykytilanne ja löytää mahdollisia käytettävyyden kehittämisalueita. Työssä käydään läpi eri käytettävyyden määritteitä ja käytettävyyden testausta. Käytettävyyden tarkastelunäkökulmia ovat asiakkaiden vaatimukset tuotteelle ja yleinen käytettävyyden subjektiivinen analysointi perustuen hyväksi tunnettuihin suunnittelun perusteisiin, heuristiikkoihin. Säähavaintoasemat ovat valittu eri segmenteistä, jotta voidaan tutkia säähavaintokonseptia, jollaista ei tänäpäivänä vielä ole ja löytää käyttäjien mahdollisia tulevaisuuden tarpeita. Näin saadaan myös laaja näkökulma eri segmenteille suunnattujen säähavaintoasemien käytettävyydestä.Käytettävyyttä voidaan pitää tehokkaana myyntiargumenttina. Tämä edellyttää läheistä yhteistyötä käyttäjien kanssa ja tietoa tuotteen käyttöympäristöstä. Tuotteen tulisi tutkimusten perusteella olla yksinkertainen toiminnoiltaan ja luotettava, jotta se vastasi käyttäjien tarpeita. Työssä osoitetaan myös useita käytettävyyden kehittämisalueita, joita kehittämällä voidaan vastata käyttäjien tarpeita. Tutkimuksen perusteella tutkittavat säähavaintoasemat voisivat olla käyttäjäystävällisempiä ja vastata paremmin käyttäjän tarpeita.Jatkotoimenpiteinä ehdotetaan esille tulleiden säähavaintoseman käytettävyyden osa-alueiden tarkempaa kartoittamista ja erityisesti käyttäjien tomintaympäristöjen ymmärtämistä. Näin varmistetaan käyttäjäystävällisyyden huomioiminen aikaisessa tuotesuunnitteluprosessin vaiheessa. Tuotteen käytettävyyden huomioiminen aikaisessa suunnitteluvaiheessa on yleensä myös edullista yhtiölle

Identification of two novel mutations in CDHR1 in consanguineous Spanish families with autosomal recessive retinal dystrophy.

Inherited retinal dystrophies present extensive phenotypic and genetic heterogeneity, posing a challenge for patients' molecular and clinical diagnoses. In this study, we wanted to clinically characterize and investigate the molecular etiology of an atypical form of autosomal recessive retinal dystrophy in two consanguineous Spanish families. Affected members of the respective families exhibited an array of clinical features including reduced visual acuity, photophobia, defective color vision, reduced or absent ERG responses, macular atrophy and pigmentary deposits in the peripheral retina. Genetic investigation included autozygosity mapping coupled with exome sequencing in the first family, whereas autozygome-guided candidate gene screening was performed by means of Sanger DNA sequencing in the second family. Our approach revealed nucleotide changes in CDHR1; a homozygous missense variant (c.1720C > G, p.P574A) and a homozygous single base transition (c.1485 + 2T > C) affecting the canonical 5' splice site of intron 13, respectively. Both changes co-segregated with the disease and were absent among cohorts of unrelated control individuals. To date, only five mutations in CDHR1 have been identified, all resulting in premature stop codons leading to mRNA nonsense mediated decay. Our work reports two previously unidentified homozygous mutations in CDHR1 further expanding the mutational spectrum of this gene.

Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención

The aim of this paper is to present cDVF-E scales for families with children of 0-18 years, on one hand, and over 18 years, on the other, that researchers from five spanish universities have recently validated and standardized to the spanish population. To this end, first, the importance of the construct of quality of family life and its implications for research and practice should be emphasized. Afterwards, we introduce the first international initiatives measuring the quality of family life developed in the first decade of this century. Then the features, dimensions and psychometric properties of the scales are synthetically presented. Finally, the authors encourage practitioners and organizations to use these tools in the context of family-centered model and provides, as a conclusions, some considerations

A measurement framework for quality health care for adolescents in hospital.

PURPOSE: Despite growing interest in measurement of health care quality and patient experience, the current evidence base largely derives from adult health settings, at least in part because of the absence of appropriately developed measurement tools for adolescents. To rectify this, we set out to develop a conceptual framework and a set of indicators to measure the quality of health care delivered to adolescents in hospital. METHODS: A conceptual framework was developed from the following four elements: (1) a review of the evidence around what young people perceive as "adolescent-friendly" health care; (2) an exploration with adolescent patients of the principles of patient-centered care; (3) a scoping review to identify core clinical practices around working with adolescents; and (4) a scoping review of existing conceptual frameworks. Using criteria for indicator development, we then developed a set of indicators that mapped to this framework. RESULTS: Embedded within the notion of patient- and family-centered care, the conceptual framework for adolescent-friendly health care (quality health care for adolescents) was based on the constructs of experience of care (positive engagement with health care) and evidence-informed care. A set of 14 indicators was developed, half of which related to adolescents' and parents' experience of care and half of which related to aspects of evidence-informed care. CONCLUSIONS: The conceptual framework and indicators of quality health care for adolescents set the stage to develop measures to populate these indicators, the next step in the agenda of improving the quality of health care delivered to adolescents in hospital settings.

The Innovation Process – Aiming towards Innovativeness in a Construction Company

The bachelor’s thesis concentrates on the innovativeness in the construction industry. The purpose of the thesis is to define the innovation as a concept reflected on a context of the construction industry. The second objective is to examine how the construction companies could foster and increase the innovativeness. The third objective was to find out tools, methods and phases of the front-end of the innovation process. The construction industry is often considered as a traditional and an old-fashioned manufacturing industry. The innovation or the innovativeness rarely linked to the construction industry. Productivity is a common problem in the construction industry. The construction industry needs to increase the productivity to compete in a globalized world. The productivity can be increased by the innovation. The thesis based on a literature review. The findings from the literature include a description of the innovation as a concept, the innovative culture and the innovation process as a context of the construction industry. The phases of the front-end of the innovation process were explained. Customers centered approach was taken into account in the innovation process. The required tools and methods for managing the front-end of the innovation process were illustrated. The thesis ensures the importance of the innovation facing challenges of the construction industry. Managing the front-end of the innovation is the most important aspect to stand out from the less innovative companies. To take a full advantage of the innovation companies cannot fear of changes. The innovation process requires a full support of the top management of the company. Taking into consideration a theoretical aspect of the thesis a further research is required to respond practical needs of the company. Tools and methods should be considered according the company’s needs and activities. Company’s existing state and culture should be examined before implementing the front-end of the innovation process to ensure the functionality.

Exploring the experiences of parents with children who have communication delays, as a population at risk for the development of behavioural concerns

Existing research identifies preschoolers with communication delays as a population at risk for the development of behavioural concerns. This risk increases when additional environmental factors such as parental stress and family conflict are also present. Research has also shown that behavioural concerns can be stable over time when they develop early. However, early intervention has been shown to be effective in addressing these concerns. The effectiveness of early intervention in addressing both child and family outcomes increases when interventions are delivered in a family-centred approach. This research project made use of data related to child behaviour and parenting, gathered through the Family Resource Project which explored the parenting experiences and resource access and allocation decisions of families who have preschool children with and without communication delays. Cluster analysis was used to explore whether there were identifiable clusters of children and families within each sample. Interview data fi"om each identified family cluster was then explored further, to identify how parents described their child's behaviour and their experience of parenting. Results show that, within this sample, parents of preschoolers with communication delays described their child's behaviour and their experience of parenting differently than did parents of children without communication delays. Results also showed that within this sample parents experiencing parental stress and/or family conflict described their child's behaviour and their experience of parenting differently than did parents from other clusters. Results suggest support for early intervention and the use of family-centred intervention, particularly for families of children with communication delays.

Effectiveness of personal planning for residents re-entering the community during the facility initiative in Ontario

This paper reports on the relocation of people with intellectual disabilities (ID) from large-scale provincially run institutions that took place in Ontario as part of the Facility Initiative. Three case studies were examined in order to report on this process as experienced by those who lived and worked through it. Specifically, the planning process conducted by the Ministry of Community and Social Services (MCSS) to assist each person with hislher transition to community living was examined using the current standard of practice in person- centered planning approaches. Effectiveness was evaluated as the ability to apply a person-centered approach across settings and people, as well as what factors facilitated or hindered its application. Results show that, in general, the personal plans do not appear to reflect the pre-transition experience of the person. Also, the transitional planning process did not appear person-centered nor facilitate further person-centered planning in the community.

The light and dark sides of perfectionism : implications for health and well-being

The present work presents two studies that examined the association of perfectionism, operationally defined by Hewi t t and Fl e t t ' s (1991) multidimensional mode l of perfectionism, with health and subjective well-being (SWB). The underlying question of this research was whether perfectionism could be beneficial as well as detrimental to health and well-being, as this is one of the mos t highly debated questions in the current literature. In samples of relatively healthy university students (n = 538) and community adults suffering from various chronic illnesses (n = 772), results from Study One indicated that socially prescribed perfectionism (SPP) is directly associated wi th poor e r he a l th and well-being. Results further showed f rom a personcentered perspective that there is a l a rge group of individuals wi th high levels of SPP and that i t is indeed these individuals who reported the poorest health and lowe s t levels of well-being. Other-oriented perfectionism was found to be unrelated to health and SWB. Findings revealed that when perfectionism is self-imposed (i.e., self-oriented perfectionism; SOP), i t is neither healthy nor unhealthy in an absolute sense. From the variable-centered perspective, this conclusion was supported by the f a c t tha t SOP was associated wi th both positive (e.g., be t t e r mental health and highe r levels of SWB in the student sample), and nega t ive correlates (e.g., higher levels of negative affect, stress, and neuroticism in both samples). Evidence f rom the chronically-ill sample further substantiated this conclusion by showing that there may be an optimal level of SOP, because mode r a t e levels of SOP we r e found to be associated with be t t e r health and highe r levels of SWB, whereas levels tha t we r e too low or too high we r e found to be associated with poor e r health and lowe r levels of SWB. Findings f rom the person-centered approach we r e particularly informative, in that they not only demonstrated tha t unique profiles of