Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Relacionamentos industriais como mecanismos de coordenação de competências : casos da indústria de moldes para plásticos.

Doutoramento em Ciências Empresariais.

Agenda för samverkan eller verksamhetens agenda? Om professionellas erfarenheter av samverkan enligt samordnad individuell plan (SIP)

Agenda for collaboration or an agency agenda? Professionals’ experiences of colla­boration according to a coordinated individual plan (CIP) An increasing number of children and adolescents develop complex needs that require simultaneous action by different professionals. Several reports state that efforts for these children and adolescents have become increasingly specialized and fragmented. Since 2010, there are statutory requirements for collaboration according to a coordinated individual plan (SIP) between health care and social services. Pre-school and school can after regional agreement be involved in the co-ordination as equal partner. Collaboration in line with CIP is expected to offset the fragmentation for benefit of the service users’ ability to monitor and comprehend interventions. The aim was to investigate professionals’ experiences of CIP. The study consists of qualitative analysis of 12 focus group interviews with a total of 71 staff with different professions in health care, education and social services about their experiences of CIP. The results indicate that the participants act according to their core mission: nurturing, teaching and investigation. Two main categories with four sub-categories each appeared in the analysis. The main category, hindering factors, contains the categories: different mandates and requirements, requirements for presence initiative, questioning and censure, and timelines and prioritization. The main category of facilitating factors contains the categories: similar interpretation of common agreement, mutual respect and shared learning, common terminology and documentation, and willingness to collaborate. The analysis indicate that CIP was perceived as alternating between, on the one hand, a pro-active and service-focused tool, and on the other hand, a competing and compelling professional instrument.

Social participation and interventions supporting teenagers and young adults living with developmental coordination disorder (DCD): results from a Scoping Review

Background: The impact of Developmental Coordination Disorder (DCD) on teenagers’ and young adults’ participation is not well documented. This article aims to synthesize the current knowledge on social participation, which is the performance of an individual in realizing his daily activities and social roles within its life environment. Strategies and interventions to support youths (15-25 years old) with DCD were also synthesized. Methods: A scoping review interrogating three databases and using ‘snowballing techniques’ was performed to identify both scientific and grey literature published between 2004 and 2014. Over 1000 documents were screened and 57 were read in full; 28 met inclusion criteria. A charting form based on 12 life habits described in the Disability Creation Process (DCP) and developed by two reviewers was used to extract data and report the results. Results: All life habits were reported to be affected for teenagers and young adults with DCD, with education and interpersonal relationships being the most frequently discussed. During adolescence and adulthood, new tasks and subsequent difficulties emerge, such as driving. Mental health difficulties emerged as a key theme. Few strategies and interventions were described to support social participation of youths with DCD. Conclusion: Many life habits are challenging for youths with DCD, but few evidence-based strategies and interventions have been designed to help them to increase their social participation.

An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

The Commission, the Single Market and the Crisis: The Limits of Purposeful Opportunism

The economic and financial crisis opened a window of opportunity to place the Single Market back on top of the European agenda as part of a two-tiered crisis response, which also included reinforced financial supervision and economic co-ordination. We argue that the Commission acted as a ‘purposeful opportunist’ in both tiers; but whereas in economic governance issues there was breakthrough change in the Commission's achievements and competences, in the Single Market realm policy change was fairly modest. Using process tracing analysis our goal is to explain why the Commission did not succeed in furthering a genuine Single Market reform. Our findings suggest that the Commission's entrepreneurship was constrained by the limited salience of Single Market issues in the crisis context and by the lack of actual political commitment from the other relevant stakeholders. Thus, our research highlights the limits of the Commission's opportunistic behaviour in less advantageous circumstances.

Electrical insulation of high voltage inductor with co-axial electrode at floating voltage

Inductive fault current limiters (FCLs) have several advantages, such as significant current limitation, immediate triggering and relatively low losses. Despite these advantages, saturated core FCLs have not been commercialized due to its large size and associated high costs. A major remaining challenge is to reduce the footprint of the device. In this paper, a solution to reduce the overall footprint is proposed and discussed. In arrangements of windings on a core in reactors such as FCLs, the core is conventionally grounded. The electrical insulation distance between high voltage winding and core can be reduced if the core is left at floating potential. This paper shows the results of the investigation carried out on the insulation of such a coil-core assembly. Two experiments were conducted. In the first, the behavior of the apparatus under high voltage conditions was assessed by performing power frequency and lightning impulse tests. In the second experiment, a low voltage test was conducted during which voltages of different frequencies and pulses with varying rise times were applied. A finite element simulation was also carried out for comparison and further investigation

Charity law, advocacy and the aid/watch decision : compatibility of charitable purposes and political objects — the view from Australia

Introduction In 1952 the Nathan report stated that: Some of the most valuable activities of voluntary societies consist, however, in the fact that they may be able to stand aside from and criticize State action or inaction, in the interests of the inarticulate man in the street. Some 60 years later it remained the case that if a voluntary society wanted to gain or retain charitable status then, contrary to the Nathan report, the one thing it could not do was set itself up with the purpose of criticizing State action or inaction. This legal position was adopted by the authorities in Australia with the Australian Taxation Office (ATO) noting in Taxation Ruling TR2005/21: 102. An institution or fund is not charitable if its purpose is advocating a political party or cause, attempting to change the law or government policy, or propagating or promoting a particular point of view. So, why, if it is such a valuable activity, have governments steadfastly refused to allow charities to have as their purpose the freedom to advocate in this way and how has this situation been affected by the recent High Court of Australia decision in Aid/Watch v Commissioner of Taxation? This article proposes to address such questions. Beginning with some background history, it explains that, initially, the current constraints did not apply. Then it looks at the nature of these constraints: how does the law define what constitutes the type of political activity that a charity must not undertake? What is the rationale for prohibition? How has the judiciary contributed to the development of the law in this area in recent years? This will lead into a consideration of the Aid/Watch case and the implications arising from the recent final decision. The article concludes by reflecting on what has changed and why the view on this contentious matter now looks different from Australia.

Crowdsourcing in developing countries : a possible model to co-create with the poor

The interest in poverty and the moral sense of'helping the poor' are a constant topic in Western culture (Mayo 2009).ln recent years, multinational corporations (MNCs) have evolved in their understanding of how social issues, such as poverty alleviation, relate to their fundamental purposes. From a business strategy point of view, 'socially responsible' initiatives are generally born with lhe dual purpose of attaining social visibility (i.e. marketing) and increasing economic returns. Besides addressing social challenges as part of their corporate social responsibility strategies, MNCs have also begun 'selling to the poor' in emerging markets (Prahalad 2004). A few forward -looking companies consider tltis base of the pyramid (BOP) market also as a source of innovation and have started to co-create with consumers (Simanis and Hart 2008).

Performance of R-N(R′)-R″ functionalised poly(glycidyl methacrylate-co-ethylene glycol dimethacrylate) monolithic sorbent for plasmid DNA adsorption

High-throughput plasmid DNA (pDNA) manufacture is obstructed predominantly by the performance of conventional stationary phases. For this reason, the search for new materials for fast chromatographic separation of pDNA is ongoing. A poly(glycidyl methacrylate-co-ethylene glycol dimethacrylate) (GMA-EGDMA) monolithic material was synthesised via a thermal-free radical reaction, functionalised with different amino groups from urea, 2-chloro-N,N-diethylethylamine hydrochloride (DEAE-Cl) and ammonia in order to investigate their plasmid adsorption capacities. Physical characterisation of the monolithic polymer showed a macroporous polymer having a unimodal pore size distribution pivoted at 600 nm. Chromatographic characterisation of the functionalised polymers using pUC19 plasmid isolated from E. coli DH5α-pUC19 showed a maximum plasmid adsorption capacity of 18.73 mg pDNA/mL with a dissociation constant (KD) of 0.11 mg/mL for GMA-EGDMA/DEAE-Cl polymer. Studies on ligand leaching and degradation demonstrated the stability of GMA-EGDMA/DEAE-Cl after the functionalised polymers were contacted with 1.0 M NaOH, which is a model reagent for most 'cleaning in place' (CIP) systems. However, it is the economic advantage of an adsorbent material that makes it so attractive for commercial purification purposes. Economic evaluation of the performance of the functionalised polymers on the grounds of polymer cost (PC)/mg pDNA retained endorsed the suitability of GMA-EGDMA/DEAE-Cl polymer.

Community uses of co-creative media. Digital storytelling and Co-creative Media : The role of community arts and media in propagating and coordinating population-wide creative practice

This report describes a dynamic ‘Co-creative Media System’ that is emerging in the social space bounded by the following institutional pillars: • major cultural institutions (including screen culture agencies, libraries, museums, galleries and public service broadcasters) • the Community Arts and Cultural Development sector (historically supported through various programs of the Australia Council for the Arts) • the community broadcasting sector • the Indigenous media sector, and • the higher education sector. It illustrates how this system activates the immense creative potential of the Australian population through the ongoing development and application of participatory storytelling methods and media.

Postcard distributed by M. Molling & Co., Hannover, to commemorate the 100th anniversary of Friedrich Schiller's death.

Addressed to Therese Gottschalk nee Molling, postmarked 25 April 1905 and mailed from Hannover to Hildesheim, most likely while Therese was visiting her Meyerhof grandparents