Suchergebnisse

Looked after children (LAC) continue to be one of the most vulnerable groups in society with numbers and rates in care increasing year-on-year. The aim of this study was to explore the unique perspectives, perceptions and opinions of experienced social workers on the little explored subject of neurodevelopmental disorders (NDDs) in this population. Using purposeful sampling, 10 social work professionals with extensive experience of working with these children were interviewed using a semi-structured interview. A thematic analysis using NVivo software was utilised to analyse, code and identify themes that contributed to the aims of the study. Four overarching themes and sub-themes emerged from the findings: perceptions of NDDs, perceptions of diagnosis, access to service provision and the impact on care settings. Attention deficit hyperactivity disorder, autism spectrum disorder, dyslexia and dyspraxia were the more prominent conditions discussed. Even though these children are embedded in service provision, the findings raise important questions for both health and social care policy. There is a pressing need for research from a nationwide context to further explore areas of prevalence, training, resources, access to relevant specialist support services and the impacts on the already vulnerable LAC with an NDD.

BACKGROUND: Looked after children (LAC) that are placed in either a foster, kinship, residential care setting or transition to adoption continue to develop debilitating disorders that significantly impact their overall health and social well-being. The prevalence of these disorders is often depicted under broad categories such as mental, behavioural or neurodevelopmental disorders (NDDs). Limited in research is the prevalence of what specific disorders fall under these broad categories. NDDs such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) which fall under an umbrella group in the expert field of genetics and neuropsychiatry will be explored. Unsupported, these disorders can lead to suboptimal health and social outcomes for both the child and family. In the general population, the prevalence of these NDDs and impacts on health and social well-being are relatively well documented, but for minority groups such as LAC, research is extremely limited. This review aims to estimate the prevalence of NDDs among LAC and explore how they might impact the health and social well-being of these vulnerable children. If feasible, the review will compare the prevalence rates to those children who are not looked after, to illuminate any differences or similarities between populations. METHODS: PubMed, ASSIA, IBSS, Web of Science, PsychINFO, Scopus, Psych articles, Social Care Online, secondary, grey literature and government publications will be searched to identify any eligible studies. No restrictions will be placed on country, design or year of publication. Studies must provide primary data on the prevalence or incidence of NDDs for individuals < 25 years of age, supported by either a diagnostic code, standardised diagnostic assessment tool or survey response. The Joanna Briggs Institute (JBI) critical appraisal tools will be utilised to assess the quality and bias and the random-effects model used to estimate a pooled prevalence of NDDs. DISCUSSION: Attaining an estimated ...

ABSTRACTObjectives

To present an efficient privacy-protecting model (PRIDAL) for linking routine and identifiable patient-reported research data.
To describe the application of the PRIDAL model with within a major portfolio trial linking a range of health and demographic datasets pertaining to >230,000 patients, alongside >2,300 questionnaires.
To summarise the lessons learned from the application of the PRIDAL model.

ApproachThe rise in availability, quality and use of routine health data has resulted in well-developed methods for anonymised linkage of data from multiple sources. However methods for combining identifiable data (e.g. patient-reported questionnaires) with routine anonymised data are not yet tried and tested. Linking these data presents opportunities to improve the feasibility and effectiveness of observational and experimental studies, but emerging data linkage processes must address the appropriate balance between data security and usability. The Process for Routine and Identifiable Data Linkage (PRIDAL) was devised to efficiently link routine hospital data and patient-reported quality of life and quality of care questionnaire data as part of the PRISMATIC trial (http://www.trialsjournal.com/content/14/1/301). This is a mixed methods progressive cluster randomised trial of the efficacy of an emergency admission risk prediction tool in primary care, funded by the NIHR HS&DR programme. PRIDAL was conceived by a group of specialists in e-trials, health informatics, information governance and process mapping who reviewed data sources, flows, owners, and security to develop a practical and intuitive process model.
ResultsWe will present the PRIDAL process model and describe its application in relation to the PRISMATIC study. We will demonstrate that the model achieves high data matching rates (>99%), and consider the lessons learnt from its application.
ConclusionsThe linking of routine health and patient self-reported data presents a valuable opportunity in health research, but clear, replicable models, are needed to support ethical and practical data linkage. We present the fully tested PRIDAL model as a potential solution.

"In diesem Beitrag beschäftigen wir uns mit einem innovativen Mixed-Methods-Ansatz zur Bewertung der positiven und problematischen Effekte eines Rehabilitationsprogramms, das eine verbesserte Lebensqualität von Patient/innen mit chronisch obstruktiver Lungenerkrankung zum Ziel hatte. Hierzu führten wir 2012 drei Konsultationsworkshops in West-Wales durch mit Patient/innen, die an einem solchen Programm teilgenommen hatten, deren Angehörigen und mit Professionellen, die in dem Programm tätig gewesen waren. Die Resonanz war vergleichsweise enthusiastisch, sowohl was Inhalte und was den Impact des Programms angeht, und zwar vor allem mit Blick auf eine vermehrte Aktivität der Patient/innen, auf deren Kontrollgefühl, Zuversicht und Bereitschaft einer verbesserten Selbstfürsorge sowie ein erhöhtes Zusammengehörigkeitsgefühl. Sieben Schlüsselthemen konnten als besonders relevant für die Untersuchungsteilnehmer/innen herausgearbeitet werden: die Patient/innen, physische Gesundheit, psychische Gesundheit, das Programm, Professionale und Angehörige, Wissen und Bildung sowie die Zukunft. Ausgehend hiervon entwickelten wir einen Best-Practice-Vorschlag für die Konzeption und Durchführung von Folgeprogrammen und -Dienstleistungen." (Autorenreferat)

Abstract Background Recent developments aiming to standardise and streamline processes of gaining the necessary approvals to carry out research in the National Health Service (NHS) in the United Kingdom (UK), have resulted in lengthy and costly delays. The national UK governmental Department of Health's Research Governance Framework (RGF) for Health and Social Care requires that appropriate checks be conducted before research involving human participants, their organs, tissues or data can commence in the NHS. As a result, medical research has been subjected to increased regulation and governance, with the requirement for approvals from numerous regulatory and monitoring bodies. In addition, the processes and outcomes of the attribution of costs in NHS research have caused additional difficulties for researchers. The purpose of this paper is to illustrate, through three trial case studies, the difficulties encountered during the set-up and recruitment phases of these trials, related to gaining the necessary ethical and governance approvals and applying for NHS costs to undertake and deliver the research. Methods Empirical evidence about delays and difficulties related to regulation and governance of medical research was gathered during the period 2009–2010 from three UK randomised controlled trials with sites in England, Wales and Scotland (1. SAFER 2- an emergency care based trial of a protocol for paramedics to refer patients directly to community based falls services; 2. COnStRUCT- a trial of two drugs for acute ulcerative colitis; and 3. Family Links - a trial of a public health intervention, a 10 week community based parenting programme). Findings and recommendations were reported in response to a call for evidence from The Academy of Medical Sciences regarding difficulties encountered in conducting medical research arising from R&D governance and regulation, to inform national policy. Results Difficulties and delays in navigating and gaining the appropriate approvals and NHS costs required to undertake the research were encountered in all three trials, at various points in the bureaucratic processes of ethical and research and information governance approvals. Conduct of each of the three trials was delayed by at least 12 months, with costs increasing by 30 – 40%. Conclusions Whilst the three trials encountered a variety of challenges, there were common issues. The processes for gaining approvals were overly complex and differed between sites and UK countries; guidance about processes was unclear; and information regarding how to define and claim NHS costs for undertaking the research was inconsistent. The competitive advantage of a publicly funded, open access health system for undertaking health services research and clinical trials within the UK has been outweighed in recent years by stifling bureaucratic structures .

This paper presents five consultation workshops with 29 community pharmacists, stakeholders and patients that examined "patient-centred professionalism" in terms of pharmacists' working day and environment. The concept is ill-defined in both medical and pharmacy literature and the study aimed to clarify the situated nature of the term for patients and health professionals across settings. Workshops were supported by bio-photographic datasets of "in-situ" practice and Nominal Group Work.
The thematic content analyses led to the following aspects: building caring relationships; managing external forces; the effects of space and environment, and different roles and expectations. The study reveals how patient-centred professionalism cannot be defined in any singular or stationary sense, but should be seen as a "moveable feast", best understood through everyday examples of practice and interaction, in relation to whose experience is being expressed, and whose needs considered. The phrase is being mobilised by a whole set of interests and stakeholders to reshape practice, the effect of which remains both uncertain and contested. Whilst patients prioritise a quick and efficient dispensing service from knowledgeable pharmacists, pharmacists rail against increasing public demands and overtly formalised consultations that take them away from the dispensary where the defining aspects of their professionalism lie.

This study examined university gym use by staff and students using mixed methods: participant observation and an e-survey. Research in three UK universities entailed 16 observation sessions and an e-survey that reached 3396 students and staff. The research focused on gym use, the gym environment, the presentation of the self, and social interaction within gym spaces. The gyms were found to have a difficult role to play in providing functionality for some, while helping others to be active and minimize feelings of isolation and lack of control. This led to these gyms developing spaces of exercise rather than therapeutic spaces, and divisions in use of space, with some areas rarely used and often highly gendered, resulting in contested meanings produced within Healthy University discourses and physical activities.

AbstractIntroductionThe measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers.MethodInformal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place.ResultsRelative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2–3 times greater than reported in earlier pre‐pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources.ConclusionsThe greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.