Children as partners with adults in their medical care

Aims: To investigate the seldom published views of children with type 1 diabetes about their condition and ways in which they share in managing their medical and health care with adults. Methods: Semi-structured, tape recorded interviews, during 2003, with a purposive sample of 24 children aged 3–12 years who have type I diabetes and who attend two inner London hospitals and one hospital in a commuter town. Results: The children reported high levels of understanding, knowledge, and skill gained from their experience of living with diabetes and constantly having to take account of the condition and their paediatrician’s guidance. Their key goals were to be “normal” and “just get on with their lives”. Discussion: The interviews showed that children’s experiences of diabetes tended to enable them to make informed, “wise” decisions in their own best interests, even at a young age. They achieved a complicated balance between the sometimes competing goals of social health “being normal” and physiological health in controlling glycaemia. Their competence supports approaches in children’s rights and in policy makers’ aims that people with diabetes—including children—gain more knowledge, skills, and responsibility for their own care in partnership with healthcare professionals. Consent is usually considered in relation to surgery; however the children showed how they constantly dealt with decisions about consent or refusal, compliance with, or resistance to their prescribed treatment. Their health depends on their informed commitment to medical guidance; more research is needed about the daily realities of children’s committed and responsible co-management of their chronic illness

Research in Queensland

Listing of researchers active in Queenslan

Automated Reasoning and Presentation Support for Formalizing Mathematics in Mizar

This paper presents a combination of several automated reasoning and proof presentation tools with the Mizar system for formalization of mathematics. The combination forms an online service called MizAR, similar to the SystemOnTPTP service for first-order automated reasoning. The main differences to SystemOnTPTP are the use of the Mizar language that is oriented towards human mathematicians (rather than the pure first-order logic used in SystemOnTPTP), and setting the service in the context of the large Mizar Mathematical Library of previous theorems,definitions, and proofs (rather than the isolated problems that are solved in SystemOnTPTP). These differences poses new challenges and new opportunities for automated reasoning and for proof presentation tools. This paper describes the overall structure of MizAR, and presents the automated reasoning systems and proof presentation tools that are combined to make MizAR a useful mathematical service.Comment: To appear in 10th International Conference on. Artificial Intelligence and Symbolic Computation AISC 201

Partial duplication of the APBA2 gene in chromosome 15q13 corresponds to duplicon structures.

BackgroundChromosomal abnormalities affecting human chromosome 15q11-q13 underlie multiple genomic disorders caused by deletion, duplication and triplication of intervals in this region. These events are mediated by highly homologous segments of DNA, or duplicons, that facilitate mispairing and unequal cross-over in meiosis. The gene encoding an amyloid precursor protein-binding protein (APBA2) was previously mapped to the distal portion of the interval commonly deleted in Prader-Willi and Angelman syndromes and duplicated in cases of autism.ResultsWe show that this gene actually maps to a more telomeric location and is partially duplicated within the broader region. Two highly homologous copies of an interval containing a large 5' exon and downstream sequence are located approximately 5 Mb distal to the intact locus. The duplicated copies, containing the first coding exon of APBA2, can be distinguished by single nucleotide sequence differences and are transcriptionally inactive. Adjacent to APBA2 maps a gene termed KIAA0574. The protein encoded by this gene is weakly homologous to a protein termed X123 that in turn maps adjacent to APBA1 on 9q21.12; APBA1 is highly homologous to APBA2 in the C-terminal region and is distinguished from APBA2 by the N-terminal region encoded by this duplicated exon.ConclusionThe duplication of APBA2 sequences in this region adds to a complex picture of different low copy repeats present across this region and elsewhere on the chromosome

Parents' and children's informed and voluntary consent to heart surgery: Protocol

This research is intended to increase understanding of the views and experiences of children aged 6-15 years having heart surgery, their needs, hopes and fears, in order that parents and practitioners may provide children with more research-based information and support. The aim is to contribute to ways of involving children in the decision making process before heart surgery, so that their acceptance or consent, as well as their parents’ consent, are well informed and voluntary. The research will also examine children’s, parents and staff views about the age of consent, and when children become competent to give consent to heart surgery ‘as well as their parents can’

Gaps in the evidence on improving social care outcomes: findings from a meta-review of systematic reviews

Adult social care continues to be a central policy concern in the UK. The Adult Social Care Outcomes Framework (ASCOF) is a range of measures nationally available to drive forward improvement on outcomes and quality in local councils. While there is an emphasis on improving transparency, quality and outcomes, drawing on research evidence to achieve these aims is often difficult because the evidence is not easily identifiable, is disparate or of variable quality. We conducted a meta-review to analyse and summarise systematic review-level evidence on the impact of interventions on the four outcomes set out in the ASCOF: quality of life, delaying and reducing the need for services, satisfaction with services and safeguarding of vulnerable adults. This paper focuses on the availability of review-level evidence and the presence of significant gaps in this evidence base. A range of health and social care databases were searched, including MEDLINE, ASSIA and The Cochrane Library in January and February 2012. All systematic reviews evaluating the efficacy of social care interventions for improving ASCOF outcomes for older people, people with long-term conditions, mental health problems or physical and/or learning disabilities were eligible. Two reviewers independently screened systematic reviews for quality and relevance and extracted data; 43 systematic reviews were included, the majority of which examined the impact of interventions on quality of life (n = 34) and delaying and reducing the need for support (n = 25). Limited systematic review-level evidence was found regarding satisfaction with services and safeguarding. There were also significant gaps in relation to key social care interventions and population groups. Research priorities include addressing these gaps and the collation of data on interventions, outcomes and populations more closely related to social care. Overall, a more relevant, comprehensive and robust evidence base is required to support improvement of outcomes for recipients of adult social care

User interface design for mobile-based sexual health interventions for young people: Design recommendations from a qualitative study on an online Chlamydia clinical care pathway

Background: The increasing pervasiveness of mobile technologies has given potential to transform healthcare by facilitating clinical management using software applications. These technologies may provide valuable tools in sexual health care and potentially overcome existing practical and cultural barriers to routine testing for sexually transmitted infections. In order to inform the design of a mobile health application for STIs that supports self-testing and self-management by linking diagnosis with online care pathways, we aimed to identify the dimensions and range of preferences for user interface design features among young people. Methods: Nine focus group discussions were conducted (n=49) with two age-stratified samples (16 to 18 and 19 to 24 year olds) of young people from Further Education colleges and Higher Education establishments. Discussions explored young people's views with regard to: the software interface; the presentation of information; and the ordering of interaction steps. Discussions were audio recorded and transcribed verbatim. Interview transcripts were analysed using thematic analysis. Results: Four over-arching themes emerged: privacy and security; credibility; user journey support; and the task-technology-context fit. From these themes, 20 user interface design recommendations for mobile health applications are proposed. For participants, although privacy was a major concern, security was not perceived as a major potential barrier as participants were generally unaware of potential security threats and inherently trusted new technology. Customisation also emerged as a key design preference to increase attractiveness and acceptability. Conclusions: Considerable effort should be focused on designing healthcare applications from the patient's perspective to maximise acceptability. The design recommendations proposed in this paper provide a valuable point of reference for the health design community to inform development of mobile-based health interventions for the diagnosis and treatment of a number of other conditions for this target group, while stimulating conversation across multidisciplinary communities

A critical realist analysis of consent to surgery for children, human nature and dialectic: the pulse of freedom

Consent can only be voluntary, freely given and uncoerced. Can this legal adult standard also apply to children? High-risk surgery is seldom a wanted choice, but compared with the dangers of the untreated problem, surgery can become the least unwanted option. Critical realism helps to reveal explicit and hidden levels of informed and voluntary consent at empirical, actual and real levels, on the four planes of social being and through the four-stage dialectic. Instead of starting with the rational-legal adult patient standard of consent, and assessing how young children fail this, understanding of consent could start at the other end of life. What does innate physical-social-moral-intuitive human nature in the emotional embodied person tell us about the meaning and purpose of consent/refusal for self-preservation, for avoiding suffering and promoting wellbeing? This discussion paper considers examples of life-giving treatment for children, and ethical dilemmas including one of conjoined twins, when only one child could survive separation

Dialectic and informed and voluntary consent: the pulse of freedom

The pulse in the title Dialectic: The Pulse of Freedom (Bhaskar, 2008) suggests a beating heart, and consent is at the heart of freedom. Its absence is at the heart of coercion. From personal to political, marriage to the vote, consent threads through daily interactions. Consent may be respected or not. A mouse click ‘consenting’ to cookies may join thousands of individuals’ clicks used by agencies for advertising or for fixing elections. The agencies may bypass consent when they rely not only on the first uninformed, unthinking click, but also on the half-attentive skimming of messages when readers may scarcely notice how these can alter their beliefs and behaviours. Consent to medical treatment or surgery is a major topic in bioethics, and the topic of our research. Yet we also aim to understand the meaning and purpose of consent more broadly in personal and political contexts. Our paper reviews how critical realism can help to deepen analysis, first of consent and second of why consent matters when it is more than a cerebral or arbitrary choice but expresses powerfully held values. This discussion paper is based on earlier research about parents’ consent to children’s heart surgery (Alderson, 1990) and related current research (Sutcliffe et al., 2019), children’ consent to orthopaedic surgery (Alderson 1993), children’s share in managing diabetes (Alderson et al., 2006; Sutcliffe, 2010) and parents’ decisions about neonatal care (Alderson et al., 2005; Mendizabal, 2017)