Una experiencia de investigación inclusiva. Personas con discapacidad intelectual como asesoras en una investigación sobre transición a la edad adulta

A pesar del creciente reconocimiento de la inclusión social de las personas con discapacidad, su participación en las investigaciones sobre temas que las preocupan aún es un tema pendiente. El objetivo de este artículo es presentar una investigación desarrollada de forma inclusiva a través de la participación de personas con discapacidad intelectual en un Comité Asesor. Se contextualizan los planteamientos de la Investigación Inclusiva, para presentar seguidamente el proceso llevado a cabo para la constitución, puesta en marcha y desarrollo del Consejo Asesor que participa en una investigación sobre transición a la vida adulta. A partir de esta experiencia, se aportan diversas reflexiones sobre las aportaciones de la incorporación de las personas con discapacidad en la investigación y se valora la necesidad de su inclusión para mejorar las investigaciones sobre discapacidad. Con este trabajo se pretende contribuir a difundir información sobre las acciones a emprender para facilitar la participación de las personas con discapacidad intelectual en los procesos de investigación sobre temas que las afectan.

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

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

Families with multiple problems: Some challenges in identifying and providing services to those experiencing adversities across the life course

Summary A concern amongst policy makers to identify high cost and low productivity populations has created a new interest in identifying those who experience adversities across the life-course. This paper outlines the development of conceptual understandings of families whose children experience multiple adversities and links this with later poor outcomes in adult life and examines some of the research challenges in establishing such linkages. Findings It is argued that current thinking with regard to these issues reflects historical domains within which services to children and to adults are located. The challenge to domain thinking is both horizontal and vertical. Policy being required to address the horizontal axis by co-ordinating planned approaches to multiple needs across services. And policy being necessary to address the vertical cleavage between children’s and adult services in ways which join up services across the life path; conceptually and practically acknowledging the links between child and adult experiences. Application Such policy developments will inevitably require social work to develop alternative paradigms for understanding the needs of children and adults and designing services to effectively meet these.

SMAD inhibition attenuates epithelial to mesenchymal transition by primary keratinocytes in vitro

Epithelial to mesenchymal transition (EMT) is a process whereby epithelial cells undergo transition to a mesenchymal phenotype and contribute directly to fibrotic disease. Recent studies support a role for EMT in cutaneous fibrotic diseases including scleroderma and hypertrophic scarring, though there is limited data on the cytokines and signalling mechanisms regulating cutaneous EMT. We investigated the ability of TGF-β and TNF-α, both over-expressed in cutaneous scleroderma and central mediators of EMT in other epithelial cell types, to induce EMT in primary keratinocytes and studied the signalling mechanisms regulating this process. TGF-β induced EMT in normal human epidermal keratinocytes (NHEK cells) and this process was enhanced by TNF-α. EMT was characterised by changes in morphology, proteome (down-regulation of E-cadherin and Zo-1, and up-regulation of vimentin and fibronectin), MMP secretion and COL1α1 mRNA expression. TGF-β and TNF-α in combination activated SMAD and p38 signalling in NHEK cells. P38 inhibition with SB203580 partially attenuated EMT, whereas SMAD inhibition using SB431542 significantly inhibited EMT and also reversed established EMT. These data highlight the retained plasticity of adult keratinocytes and support further studies of EMT in clinically relevant in vivo models of cutaneous fibrosis, and investigation of SMAD inhibition as a potential therapeutic intervention. This article is protected by copyright. All rights reserved.

Redefining the Academic Library Managing the Migration to Digital Information Services

Academic libraries are faced with a daunting series of challenges brought on by the digital revolution. In an era when millions of books, articles, images, and videos available instantaneously via the web, libraries across all institutional types are experiencing declining demand for their traditional services, built around the storage and dissemination of physical resources. At the same time, new demand for digital information services and collaborative learning spaces promise new areas of opportunity and engagement with patrons. A rapid and orderly transition to “the library of the future” requires difficult trade-offs, however, as no institution can afford to continue expanding both its commitment to comprehensive, local print collections as well as new investments in staff, technology, and renovations. This report illustrates how progressive academic libraries are evolving in response to these challenges, providing case studies and best practices in managing library space, staff, and resources.

Declining transition rates to psychosis: The role of diagnostic spectra and symptom overlaps in individuals with attenuated psychosis syndrome

Transition to psychosis in at-risk individuals has markedly declined in recent years. So far it has never been discussed in detail that with the growing awareness and increasing availability of early psychosis services, a much broader diagnostic spectrum is now being seen in these services. Subsequently, subjects present with symptoms that meet psychosis risk on a purely psychometric basis but may be the phenotypical expression of another underlying mental disorder. Here we critically review four groups of symptoms and clinical features that are frequently reported by individuals with suspected psychosis risk states, yet share strong commonalities with other mental disorders and conditions: isolated hallucinations; unusual bodily perceptions, hypochondriatic fears and cenesthetic psychotic symptoms; depersonalization; obsessive–compulsive, overvalued and delusional ideas. Of the 616 individuals so far assessed in the Bruderholz Early Psychosis Outpatient Service for Adolescents and Young Adults, 218 (30.5%) met ultra-high risk (UHR) criteria, 188 (86.2%) of whom suffered from one of the four above-mentioned symptom groups. The appraisal of the diagnostic spectra and their overlapping symptoms constitute a tremendous challenge in the clinical assessment of each referred individual. The final conclusion of a clinical assessment should not end with the mere assignment – or non-assignment – to a presumed psychosis risk group, but needs to take into account the ‘Gestalt’ of these particular symptoms and clinical features and thus be based on many more facets than solely a psychometric or nosological approach. Such an approach may break down the heterogeneous psychosis risk group and enable appropriate treatment regimes.

Managers and missionaries : library services to children and young adults in the information age /

"Papers presented at the Allerton Park Institute, sponsored by University of Illinois, Graduate School of Library and Information Science, cosponsored by the Youth Divisions of the American Library Association: American Association of School Librarians (AASL), Association for Library Service to Children (ALSC), Young Adult Services Division (YASD); held November 14-16, 1986, Chancellor Hotel & Conference Center ... Champaign, Illinois."

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Versenyképesség és civil szerepvállalás a közigazgatás és a közszolgáltatások fejlesztésében (Competitiveness and civil contribution to the development of public administration and public services)

Az utóbbi évtizedek nemzetközi trendjei azt mutatják, hogy a civil szervezetek és a nonprofit szolgáltatók számottevő hatást gyakorolnak a versenyképesség alakulására. Ez a tanulmány azokat a formális és informális mechanizmusokat tekinti át, amelyeken keresztül a civil társadalom befolyásolja a közintézményi döntéseket és azok gyakorlati megvalósítását, hozzájárul a „government”-tôl a „governance” irányába való elmozduláshoz. Szintén képet ad arról az átalakulási folyamatról, amely a közszolgáltatások területén zajlik, s amelyből egyre markánsabban rajzolódik ki a közösségi kezdeményezésen alapuló, társadalmi ellenőrzés alatt működő nonprofit szolgáltatók és az állami szereplők közötti partneri viszony kialakulásának tendenciája. ____________ The international trends of the last decades have revealed that civil society organisations and nonprofit service providers have a significant impact on competitiveness. This paper gives an overview of the formal and informal mechanisms operated by civil society in order to keep public administration accountable, to influence public decisions and their implementation, thus moving from “government” towards “governance”. It also analyses the transition of public services, the more and more noticeable signs of an emerging partnership between the grassroots, community controlled service providing nonprofit organisations and the government actors.

Examining the needs for student services of adult learners in continuing higher education

The primary purpose of this study was to examine the availability and quality of student services offered to adult learners in selected continuing education programs in Dade County, Florida. The two basic research questions addressed in this study were: 1) What are the student services being provided to adult learners by the selected colleges and universities? 2) What is the quality of these services being provided as perceived by administrators and adult learners at their institutions? Two groups comprised the population for this study. One group sample of adult learners enrolled in credit courses being offered by the continuing education unit. The second group sample was comprised of administrators in the areas of Admissions, Financial Aid, Registration, Student Services and Continuing Education at each of the five colleges and universities in Dade County, Florida. Data were collected from 107 students and 25 administrators using the Continuing Education Student Services Questionnaire (CESSQ) developed by the researcher in a pilot study. The questionnaire, one for administrators and a similar one for adult learners, consisted of two parts. One consisted of eight demographic items and the second one of twenty items describing student services. An overview of responses by institutions showed that only the following services received a 100% response as available at one or more institutions: 1) Admissions Information, 2) Convenient Hours for Registration, 3) Assistance in Class Registration, 4) Assistance in Planning a Class Schedule, 5) Access to the Library in Evening and Weekends, 6) Parking and Security, 7) Food Services, 8) Bookstore and 9) Access to Computers.

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

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

Exploring non-cancer pain conditions in a community sample : critiquing a current conceptual model of the acute to chronic pain transition and examining predictors of chronicity

This program of research examines the experience of chronic pain in a community sample. While, it is clear that like patient samples, chronic pain in non-patient samples is also associated with psychological distress and physical disability, the experience of pain across the total spectrum of pain conditions (including acute and episodic pain conditions) and during the early course of chronic pain is less clear. Information about these aspects of the pain experience is important because effective early intervention for chronic pain relies on identification of people who are likely to progress to chronicity post-injury. A conceptual model of the transition from acute to chronic pain was proposed by Gatchel (1991a). In brief, Gatchel’s model describes three stages that individuals who have a serious pain experience move through, each with worsening psychological dysfunction and physical disability. The aims of this program of research were to describe the experience of pain in a community sample in order to obtain pain-specific data on the problem of pain in Queensland, and to explore the usefulness of Gatchel’s Model in a non-clinical sample. Additionally, five risk factors and six protective factors were proposed as possible extensions to Gatchel’s Model. To address these aims, a prospective longitudinal mixed-method research design was used. Quantitative data was collected in Phase 1 via a comprehensive postal questionnaire. Phase 2 consisted of a follow-up questionnaire 3 months post-baseline. Phase 3 consisted of semi-structured interviews with a subset of the original sample 12 months post follow-up, which used qualitative data to provide a further in-depth examination of the experience and process of chronic pain from respondents’ point of view. The results indicate chronic pain is associated with high levels of anxiety and depressive symptoms. However, the levels of disability reported by this Queensland sample were generally lower than those reported by clinical samples and consistent with disability data reported in a New South Wales population-based study. With regard to the second aim of this program of research, while some elements of the pain experience of this sample were consistent with that described by Gatchel’s Model, overall the model was not a good fit with the experience of this non-clinical sample. The findings indicate that passive coping strategies (minimising activity), catastrophising, self efficacy, optimism, social support, active strategies (use of distraction) and the belief that emotions affect pain may be important to consider in understanding the processes that underlie the transition to and continuation of chronic pain.

Eco-retrofitting - from managerialism to design

As all environmental problems are caused by human systems of design, sustainability can be seen as a design problem. Given the massive energy and material flows through the built environment, sustainability simply cannot be achieved without the re-design of our urban areas. ‘Eco-retrofitting’, as used here, means modifying buildings and/or urban areas to create net positive social and environmental impacts – both on site and off site. While this has probably not been achieved anywhere as yet, myriad but untapped eco-solutions are already available which could be up-scaled to the urban level. It is now well established that eco-retrofitting buildings and cities with appropriate design technology can pay for itself through lower health costs, productivity increases and resource savings. Good design would also mean happier human and ecological communities at a much lower cost over time. In fact, good design could increase life quality and the life support services of nature while creating sustainable‘economic’growth. The impediments are largely institutional and intellectual, which can be encapsulated in the term ‘managerial’. There are, however, also systems design solutions to the managerial obstacles that seem to be stalling the transition to sustainable systems designs. Given the sustainability imperative, then, why is the adoption of better management systems so slow? The oral presentation will show examples of ways in which built environment design can create environments that not only reduce the ongoing damage of past design, but could theoretically generate net positive social and ecological outcomes over their life cycle. These illustrations show that eco-retrofitting could cost society less than doing nothing - especially given the ongoing renovations of buildings - but for managerial hurdles. The paper outlines on how traditional managerial approaches stand in the way of ‘design for ecosystem services’, and list some management solutions that have long been identified, but are not yet widely adopted. Given the pervasive nature of these impediments and their alternatives, they are presented by way of examples. A sampling of eco-retrofitting solutions are also listed to show that ecoretrofitting is a win-win-win solution that stands ready to be implemented by people having management skills and/or positions of influence.

Enhancing transition : an enhanced model of clinical placement for final year nursing students

Specialised support for student nurses making the transition to graduate nurse can be crucial to successful and smooth adjustment, and can create a path to positive and stable career experiences. This paper describes an enhanced model of final year nursing student placements which was trialled in 2006 at the Queensland University of Technology. The model involved collaboration with two major urban health services and resources were developed to support effective transition experiences. Ninety-two students, including 29 trial participants and 63 non-trial participants were assessed on preparedness for professional practice, before and after the trial semester. Results indicated an increase in preparedness across the entire sample, but students participating in the trial did not differ significantly in overall preparedness change from those who did not participate. Higher baseline preparedness in the trial group highlighted the possibility that proactive students who choose enrichment experiences tend to be likelier to gain benefit from such options than those who do not. Qualitative findings from focus groups conducted with 12 transition group students highlighted that one of the main beneficial aspects of the experience for students was the sense of belonging to a team that understood their learning needs and could work constructively with them.

Using a design led disruptive innovation approach to develop new services : practising innovation in times of discontinuity

Organisations face increasing competition from new firms in emerging markets and their past superior products may no longer provide competitive advantage in markets based on different cost and value differentials. A shift in design practices from product solutions to health services which are accessible and affordable by all is required. This paper explores a design led approach to innovation to assist medical device companies develop new services and experiences and reshape their notions of the nature, development and deployment of health care services. This approach uses design tools and methodologies that are grounded in the authentic understandings of stakeholder experiences, to assist an organisation create a vision of likely future health care scenarios. Through this process, organisations can explore the complexities in the delivery of future health care services in new and emerging markets allowing them to tailor product and service solutions which focus on being accessible and affordable by all. The industry based case study for the design of health services in carried out in emerging economies. The contribution of this work in advancing research into design innovation and future research directions are also presented.