Towards beneficence for young children in research : challenges for bioethics committees

Bioethics committees are the focus of international scrutiny,particularly in relation to their application of the principle of beneficence,ensuring that risks incurred in research are outweighed by benefits to those involved directly and to the broader society. Beneficence, in turn, has become an international focus in research with young children, who hitherto had been rarely seen or heard in their own right in research.Twenty years ago, The United Nations Convention on the Rights of the Child 1989 raised global awareness of children’s human rights to both participation and protection, and articulation of children’s rights came to inform understandings of young children’s rights in research. In the intervening period, countries such as Australia came to favour child protection and risk minimisation in research over the notion of children’s bone fide participation in research. A key element of the protection regime was the theoretical understanding of young children as developmentally unable and, therefore, unfit to understand, consent to and fully participate as research participants. This understanding has been challenged in recent decades by new theoretical understandings of children’s competence, where children can be seen to demonstrate competence, even at an early age, in consenting to, participating in and withdrawing from research. The paper draws on these understandings to provide insights for human research gatekeepers, such as bioethics committees, to deal with the challenges of research with young children and to realize the benefits that may accrue to children in research.

A research opportunity : “3D-ROSE” : virtual reality preparation for children having radiotherapy or imaging procedures

Professor Christian Langton is a medical physicist at Queensland University of Technology in Brisbane. He has developed a way of preparing children who are about to have either radiotherapy or MRI imaging procedures and is seeking research partners to develop and test these further. This is a great opportunity for nurses interested in research, and who have access to a children’s hospital, to work with Professor Langton on some truly innovative, multidisciplinary research.

Paediatric spinal deformity research at the Mater Children's Hospital, Brisbane, Australia.

The Paediatric Spine Research group was formed in 2002 to perform high quality research into the prevention and management of spinal deformity, with an emphasis on scoliosis. The group has successfully built collaborative bridges between the scientific and research expertise at QUT, and the clinical skills and experience of the spinal orthopaedic surgeons at the Mater Children’s Hospital in Brisbane. Clinical and biomechanical research is now possible as a result of the development of detailed databases of patients who have innovative and unique surgical interventions for spinal deformity such as thoracoscopic scoliosis correction, thoracoscopic staple insertion for juvenile idiopathic scoliosis and minimally invasive growing rods. The Mater in Brisbane provides these unique datasets of spinal deformity surgery patients, whose procedures are not being performed anywhere else in the Southern Hemisphere. The most detailed is a database of thoracoscopic scoliosis correction surgery which now contains 180 patients with electronic collections of X-Rays, photographs and patient questionnaires. With ethics approval, a subset of these patients has had CT scans, and a further subset have had MRI scans with and without a compressive load to simulate the erect standing position. This database has to date contributed to 17 international refereed journal papers, a further 7 journal papers either under review or in final preparation, 53 national conference presentations and 35 international conference presentations. Major findings from selected journal publications will be presented. It is anticipated that as the surgical databases grow they will continue to provide invaluable clinical data which will feed into clinically relevant projects driven by both medical and engineering researchers whose findings will benefit spinal deformity patients and scientific knowledge worldwide.

Urban renewal from the inside out: Spatial and critical literacies in a low socioeconomic school community

This article focuses on how teachers worked to build a meaningful curriculum around changes to a neighborhood and school grounds in a precinct listed for urban renewal. Drawing on a long-term relationship with the principal and one teacher, the researchers planned and designed a collaborative project to involve children as active participants in the redevelopment process, negotiating and redesigning an area between the preschool and the school. The research investigated spatial literacies, that is, ways of thinking about and representing the production of spaces, and critical literacies, in this instance how young people might have a say in remaking part of their school grounds. Data included videotapes of key events, interviews, and an archive of the elementary students' artifacts experimenting with spatial literacies. The project builds on the insights of community members and researchers working for social justice in high-poverty areas internationally that indicate the importance of education, local action, family, and youth involvement in building sustainable and equitable communities.

Identifying key belief-based targets for promoting regular physical activity among mothers and fathers with young children

We investigated the key beliefs to target in interventions aimed at increasing physical activity (PA) among mothers and fathers of young children. Parents (288 mothers and 292 fathers) completed a Theory of Planned Behaviour belief-based questionnaire and a 1-week follow-up of PA behaviour. We found that a range of behavioural, normative, and control beliefs were significantly correlated with parents’ PA intentions and behaviour, with only a few differences observed in correlations between PA beliefs and intention and behaviour by gender. A range of key beliefs was identified as making independent contributions to parents’ PA intentions; however, the behavioural beliefs about improving parenting practices (β = 0.13), interfering with other commitments (β = −0.29); normative beliefs about people I exercise with (β = 0.20); and control beliefs about lack of time (β = −0.24), inconvenience (β = −0.14), lack of motivation (β = −0.34), were revealed as significant independent predictors of actual PA behaviour. Furthermore, we found that a limited amount of parents already hold these beliefs, suggesting that these key beliefs warrant changing and, therefore, are appropriate targets for subsequent intervention. The current study fills an empirical gap in the PA literature by investigating an at-risk group and using a well established theoretical framework to identify key beliefs that guide parents’ PA decision-making. Overall, we found support for parents being a unique group who hold distinctive behavioural, normative, and control beliefs toward PA. Attention to these key underlying beliefs will assist intervention work aimed at combating inactivity among this at-risk population.

Self-narratives of children : using digital journals

This paper takes the position that children are at risk of being marginalised when research methods are not tailored to their requirements. In particular, children who are negotiating early adolescence are presented as an ideal group for involvement with narrative research approaches that attempt to be flexible and creative. With the premise that the need to juggle multiple realities within complex societal structures is challenging and isolating for such children, narrative methods offer a promising mode of access to their individual realities. Children's own self-narratives in the form of email journal entries are proposed as research tools that can help to minimise issues arising from resistance to adults and problems of shared vocabulary that may occur using more traditional methods. Digital journaling, as a means of capturing self-narratives, can provide a convenient space for young people to generate and share their own personal accounts of their lives and their experiences that can also serve to inform others. Guidelines are offered for how to manage a journaling project that is not reliant on children's physical presence within school settings. Digital journals are thus described as multi-function mechanisms that can support personal growth as well as promote shared understandings and social fairness between adults and children.

Anna Clark (2008) History’s Children: History Wars in the Classroom. UNSW Press, Sydney, 178 pages

“History’s Children” stems from Anna Clark’s 2004 postdoctoral research into the ways in which Australian students connect with the past, and aims at bringing some classroom perspectives into the public debates about Australian history education. Although the title makes reference to the “History Wars”, there is little evidence of contestation, engagement, passion or intellectual excitement in Clark’s conclusions about what happens in history classrooms. Rather, Clark’s small focus groups with 182 high school students in 34 high schools around Australia indicate that “it got a bit dismal hearing student after student being so dismissive of Australian history” (p. 143). Apart from some enthusiasm for the study of Australians at war, a sort of resigned boredom seems to characterise what students have to say about learning Australian history, despite their acknowledgement that it is important to “know about” it.

The Early Prevention of Obesity in CHildren (EPOCH) collaboration : an individual patient data prospective meta-analysis

Background: Efforts to prevent the development of overweight and obesity have increasingly focused early in the life course as we recognise that both metabolic and behavioural patterns are often established within the first few years of life. Randomised controlled trials (RCTs) of interventions are even more powerful when, with forethought, they are synthesised into an individual patient data (IPD) prospective meta-analysis (PMA). An IPD PMA is a unique research design where several trials are identified for inclusion in an analysis before any of the individual trial results become known and the data are provided for each randomised patient. This methodology minimises the publication and selection bias often associated with a retrospective meta-analysis by allowing hypotheses, analysis methods and selection criteria to be specified a priori. Methods/Design: The Early Prevention of Obesity in CHildren (EPOCH) Collaboration was formed in 2009. The main objective of the EPOCH Collaboration is to determine if early intervention for childhood obesity impacts on body mass index (BMI) z scores at age 18-24 months. Additional research questions will focus on whether early intervention has an impact on children’s dietary quality, TV viewing time, duration of breastfeeding and parenting styles. This protocol includes the hypotheses, inclusion criteria and outcome measures to be used in the IPD PMA. The sample size of the combined dataset at final outcome assessment (approximately 1800 infants) will allow greater precision when exploring differences in the effect of early intervention with respect to pre-specified participant- and intervention-level characteristics. Discussion: Finalisation of the data collection procedures and analysis plans will be complete by the end of 2010. Data collection and analysis will occur during 2011-2012 and results should be available by 2013. Trial registration number: ACTRN12610000789066

Interest from Tertiary Educated Persons in Fostering Children with Higher Care needs under a Professional (Paid) Model Compared with General Foster Care

The number of Australian children requiring foster care due to abuse and neglect is increasing at a faster rate than suitable carers can be recruited. Currently increased numbers of foster children are presenting with higher care needs. Evidence suggests carers with a higher education could contribute to placement stability and ultimately provide more positive outcomes for this group of children. This paper explores the level of interest by tertiary educated persons toward a model of fostering for children with higher needs. Using a descriptive survey methodology, a convenience sample of 644 university undergraduate and postgraduate students within faculties of health sciences, and education, arts and social sciences was employed. Psychology students in the 17-26 year old age group showed greatest interest in a professional foster care model and this was statistically significant (p=0.002 955 CI .000-.010) when compared to other health professionals and other age groups. Education students held the highest interest in general fostering although not statistically significant. When these survey results were extrapolated to the total number of health professionals in Australia there could be 8,385 potential recruits for a model professional foster care. Focused campaigns are required to source professional as recruits to fostering with the benefit of servicing the placement needs of higher care needs children and contributing to general foster care resources.

Tyrosine monitoring in children with early and continuously treated phenylketonuria: Results of an international practice survey

Investigations into the biochemical markers associated with executive function (EF) impairment in children with early and continuously treated phenylketonuria (ECT-PKU) remain largely phenylalanine-only focused, despite experimental data showing that a high phenylalanine:tyrosine (phe:tyr) ratio is more strongly associated with EF deficit than phe alone. A high phe:tyr ratio is hypothesized to lead to a reduction in dopamine synthesis within the brain, which in turn results in the development of EF impairment. This paper provides a snapshot of current practice in the monitoring and/or treatment of tyrosine levels in children with PKU, across 12 countries from Australasia, North America and Europe. Tyrosine monitoring in this population has increased over the last 5 years, with over 80% of clinics surveyed reporting routine monitoring of tyrosine levels in infancy alongside phe levels. Twenty-five percent of clinics surveyed reported actively treating/managing tyrosine levels (with supplemental tyrosine above that contained in PKU formulas) to ensure tyrosine levels remain within normal ranges. Anecdotally, supplemental tyrosine has been reported to ameliorate symptoms of both attention deficit hyperactivity disorder and depression in this population. EF assessment of children with ECT-PKU was likewise highly variable, with 50% of clinics surveyed reporting routine assessments of intellectual function. However when function was assessed, test instruments chosen tended towards global measures of IQ prior to school entry, rather than specific assessment of EF development. Further investigation of the role of tyrosine and its relationship with phe and EF development is needed to establish whether routine tyrosine monitoring and increased supplementation is recommended.

Lost children and imaginary mothers in Sonya Hartnett's Of A Boy

In Powers of Horror, Julia Kristeva writes about lost children. These are what she calls “dejects,” who, in the psychodrama of subject formation, fail to fully absent the body of the mother, to accept the Law of the Father and the Symbolic, and subsequently to establish “clear boundaries which constitute the object-world for normal subjects.” Dejects are “strays” looking for a place to belong, a place that is bound up with the Imaginary mother of the pre-Oedipal period. Kristeva’s sketch of the deject as one who is unable to negotiate a proper path to the Symbolicis useful to a reading of Hartnett’s Of A Boy (2002),a novel that also deals with lost children and imaginary mothers. However, in its portrayal of children who are doomed to never achieve adulthood, Of A Boy enacts a haunting retrieval of the pre-Oedipal from the dark side of phallocentric representation, privileging the semiotic (Kristeva’s concept) and the maternal as necessary disruptive checks on a patriarchal Symbolic Order.

Immigration distress and associated factors among Vietnamese momen in transnational marriages in Taiwan

The purpose of this study was to explore the types and predictors of immigration distress among Vietnamese women in transnational marriages in Taiwan. A cross-sectional survey with face-toface interviews was conducted for data collection. A convenient sample of 203 Vietnamese women in transnational marriages in southern Taiwan was recruited. The Demographic Inventory measured the participants’ age, education, employment status, religion, length of residency and number of children, as well as their spouse’s age, education, employment status and religion. The Demand of Immigration Specific Distress scale measured the level of distress and had six subscales: loss, novelty, occupational adjustment, language accommodation, discrimination and alienation. Among the 203 participants, 6.4% had a high level of immigration distress; 91.1% had moderate distress; and 2.5% had minor distress. Higher mean scores were found for the loss, novelty and language accommodation subscales of the Demand of Immigration specific Distress scale. Participant’s (r = 0.321, p < 0.01) and spouse’s (r = 0.375, p < 0.01) unemployment, and more children (r = 0.129, p < 0.05) led to greater immigration distress. Length of residency in Taiwan (r = 0.576, p < 0.001) was an effective predictor of immigration distress. It indicated that the participants who had stayed fewer years in Taiwan had a higher level of immigrant distress. Health care professionals need to be aware that the female newcomers in transnational marriages are highly susceptible to immigration distress. The study suggests that healthcare professionals need to provide a comprehensive assessment of immigration distress to detect health problems early and administer culturally appropriate healthcare for immigrant women in transnational marriages.

Executive function effects and numerical development in children : behavioural and ERP evidence from a numerical Stroop paradigm

Most research on numerical development in children is behavioural, focusing on accuracy and response time in different problem formats. However, Temple and Posner (1998) used ERPs and the numerical distance task with 5-year-olds to show that the development of numerical representations is difficult to disentangle from the development of the executive components of response organization and execution. Here we use the numerical Stroop paradigm (NSP) and ERPs to study possible executive interference in numerical processing tasks in 6–8-year-old children. In the NSP, the numerical magnitude of the digits is task-relevant and the physical size of the digits is task-irrelevant. We show that younger children are highly susceptible to interference from irrelevant physical information such as digit size, but that access to the numerical representation is almost as fast in young children as in adults. We argue that the developmental trajectories for executive function and numerical processing may act together to determine numerical development in young children.