Implementation of European standards of care for cystic fibrosis - provision of care

Background: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking.

Implementation of European standards of care for cystic fibrosis - Control and treatment of infection

Background: Several guidelines oil infection control and treatment of infection exist for cystic fibrosis (CF) caregivers, although the extent of implementation is variable.

Upholding the convention on the rights of the child: a quandary in cyberspace

Put in place to protect the rights of the child, the Convention on the Rights of the Child is a set of non-negotiable standards. A core principle underpinning the Convention is the child's right to participate fully in social arenas and to access sources of social support without excessive interference. Juxtaposing this is the right of the child to be shielded from harm, abuse and exploitation. Over the past several decades the Internet has emerged as a fast and easily accessible medium for people to connect and communicate. While the Internet provides children with a source of support through chat rooms, online communities and social networking sites, just as equally it can expose vulnerable children to predatory and deviant individuals exacerbating the potential for harm. Upholding the Convention in cyberspace is a challenge. The Internet is not owned or regulated by any governing body and accountability is difficult to enforce. This article discusses some of the difficulties of upholding the Convention online and provides recommendations for policy-makers to protect children as they participate in cyberspace.

'Like walking on eggshells': Service user views and expectations of the child protection system

This paper reports on a study of service users' views on Irish child protection services. Qualitative interviews were conducted with 67 service users, including young people between 13 and 23. The findings showed that despite refocusing and public service management reforms, service users still experience involvement with the services as intimidating and stressful and while they acknowledged opportunities to participate in the child protection process, they found the experience to be very difficult. Their definition of ‘needs’ was somewhat at odds with that suggested in official documentation, and they viewed the execution of a child protection plan more as a coercive requirement to comply with ‘tasks’ set by workers than a conjoint effort to enhance their children's welfare. As in previous studies, the data showed how the development of good relationships between workers and service users could compensate for the harsher aspects of involvement with child protection. In addition, this study demonstrated a high level of discernment on the part of service users, highlighting their expectation of quality standards in respect of courtesy, respect, accountability, transparency and practitioner expertise.

Scientific standards for human intervention trials evaluating health benefits of foods, and their application to infants, children and adolescents

Associations between the consumption of particular foods and health outcomes may be indicated by observational studies. However, intervention trials that evaluate the health benefits of foods provide the strongest evidence to support dietary recommendations for health. Thus, it is important that these trials are carried out safely, and to high scientific standards. Accepted standards for the reporting of the health benefits of pharmaceutical and other medical interventions have been provided by the Consolidated Standards of Reporting Trials (CONSORT) statement. However, there are no generally accepted standards for trials to evaluate the health benefits of foods. Trials with foods differ from medical trials in issues related to safety, ethics, research governance and practical implementation. Furthermore, these important issues can deter the conduct of both medical and nutrition trials in infants, children and adolescents. This paper provides standards for the planning, design, conduct, statistical analysis and interpretation of human intervention trials to evaluate the health benefits of foods that are based on the CONSORT guidelines, and outlines the key issues that need to be addressed in trials in participants in the paediatric age range.

European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis

Since the earliest days of cystic fibrosis (CF) treatment, patient data have been recorded and reviewed in order to identify the factors that lead to more favourable outcomes. Large data repositories, such as the US Cystic Fibrosis Registry, which was established in the 1960s, enabled successful treatments and patient outcomes to be recognized and improvement programmes to be implemented in specialist CF centres. Over the past decades, the greater volumes of data becoming available through Centre databases and patient registries led to the possibility of making comparisons between different therapies, approaches to care and indeed data recording. The quality of care for individuals with CF has become a focus at several levels: patient, centre, regional, national and international. This paper reviews the quality management and improvement issues at each of these levels with particular reference to indicators of health, the role of CF Centres, regional networks, national health policy, and international data registration and comparisons. 

Selection of the most appropriate roadside vehicle restraint system – the SAVeRS project

Run Off Road (ROR) crashes are road accidents that often result in severe injuries or fatalities. To reduce the severity of ROR crashes, “forgiving roadsides” need to be designed and this includes identifying situations where there is a need for a Vehicle Restraint System (VRS) and what appropriate VRS should be selected for a specific location and traffic condition. Whilst there are standards covering testing, evaluation and classification of VRS within Europe (EN1317 parts 1 to 8), their selection, location and installation requirements are typically based upon national guidelines and standards, often produced by National Road Authorities (NRA) and/or overseeing organisations. Due to local conditions, these national guidelines vary across Europe.
The European SAVeRS project funded by CEDR has developed a practical and readily understandable VRS guidance document and a user-friendly software tool which allow designers and road administrations to select the most appropriate solution in different road and traffic conditions.
This paper describes the main outcomes of the project, the process to select the most appropriate roadside barrier, and the user friendly SAVeRS tool.

Joining the `Crusade against the Giants': Keir Hardie's Fairy Tales and The Socialist Child Reader

This article focuses on Keir Hardie's forgotten fiction and journalism for children, published in his paper The Labour Leader during the 1890s. It argues that Hardie's dialogue with child correspondents was shaped by a socialist periodical culture that redefined reading as a communal, political activity. Relating Hardie's appropriation of fantasy to that of a fellow socialist editor, John Trevor, the article examines the fairy tale as a propaganda tool in the process of `making socialists', but also questions the model of child readers as passive consumers, arguing that young readers were both empowered and controlled by Hardie's journalistic strategies.