Practices for teaching moral values in the early years : a call for a pedagogy of participation

Schools have long been seen as institutions for preparing children for life, both academically and as moral agents in society. In order to become capable, moral citizens, children need to be provided with opportunities to learn moral values. However, little is known about how teachers enact social and moral values programs in the classroom. The aim of this paper is to investigate the practices that Australian early years teachers describe as important for teaching moral values. To investigate early years teachers’ understandings of moral pedagogy, 379 Australian teachers with experience teaching children in the early years were invited to participate in an on-line survey. This paper focuses on responses provided to an open-ended question relating to teaching practices for moral values. The responses were analysed using an interpretive methodology. The results indicate that the most prominent approaches to teaching moral values described by this group of Australian early years teachers were engaging children in moral activities. This was closely followed by teaching practices for transmitting moral values. Engaging children in building meaning and participatory learning for moral values were least often described.

Exploring health behaviour determinants of ageing Australians with chronic diseases

Background: Chronic disease presents overwhelming challenges to elderly patients, their families, health care providers and the health care system. The aim of this study was to explore a theoretical model for effective management of chronic diseases, especially type 2 diabetes mellitus and/or cardiovascular disease. The assumed theoretical model considered the connections between physical function, mental health, social support and health behaviours. The study effort was to improve the quality of life for people with chronic diseases, especially type 2 diabetes and/or cardiovascular disease and to reduce health costs. Methods: A cross-sectional post questionnaire survey was conducted in early 2009 from a randomised sample of Australians aged 50 to 80 years. A total of 732 subjects were eligible for analysis. Firstly, factors influencing respondents‘ quality of life were investigated through bivariate and multivariate regression analysis. Secondly, the Theory of Planned Behaviour (TPB) model for regular physical activity, healthy eating and medication adherence behaviours was tested for all relevant respondents using regression analysis. Thirdly, TPB variable differences between respondents who have diabetes and/or cardiovascular disease and those without these diseases were compared. Finally, the TPB model for three behaviours including regular physical activity, healthy eating and medication adherence were tested in respondents with diabetes and/or cardiovascular diseases using Structure Equation Modelling (SEM). Results: This was the first study combining the three behaviours using a TPB model, while testing the influence of extra variables on the TPB model in one study. The results of this study provided evidence that the ageing process was a cumulative effect of biological change, socio-economic environment and lifelong behaviours. Health behaviours, especially physical activity and healthy eating were important modifiable factors influencing respondents‘ quality of life. Since over 80% of the respondents had at least one chronic disease, it was important to consider supporting older people‘s chronic disease self-management skills such as healthy diet, regular physical activity and medication adherence to improve their quality of life. Direct measurement of the TPB model was helpful in understanding respondents‘ intention and behaviour toward physical activity, healthy eating and medication adherence. In respondents with diabetes and/or cardiovascular disease, the TPB model predicted different proportions of intention toward three different health behaviours with 39% intending to engage in physical activity, 49% intending to engage in healthy eating and 47% intending to comply with medication adherence. Perceived behavioural control, which was proven to be the same as self-efficacy in measurement in this study, played an important role in predicting intention towards the three health behaviours. Also social norms played a slightly more important role than attitude for physical activity and medication adherence, while attitude and social norms had similar effects on healthy eating in respondents with diabetes and/or cardiovascular disease. Both perceived behavioural control and intention directly predicted recent actual behaviours. Physical activity was more a volitional control behaviour than healthy eating and medication adherence. Step by step goal setting and motivation was more important for physical activity, while accessibility, resources and other social environmental factors were necessary for improving healthy eating and medication adherence. The extra variables of age, waist circumference, health related quality of life and depression indirectly influenced intention towards the three behaviours mainly mediated through attitude and perceived behavioural control. Depression was a serious health problem that reduced the three health behaviours‘ motivation, mediated through decreased self-efficacy and negative attitude. This research provided evidence that self-efficacy is similar to perceived behavioural control in the TPB model and intention is a proximal goal toward a particular behaviour. Combining four sources of information in the self-efficacy model with the TPB model would improve chronic disease patients‘ self management behaviour and reach an improved long-term treatment outcome. Conclusion: Health intervention programs that target chronic disease management should focus on patients‘ self-efficacy. A holistic approach which is patient-centred and involves a multidisciplinary collaboration strategy would be effective. Supporting the socio-economic environment and the mental/ emotional environment for older people needs to be considered within an integrated health care system.

Mapping the language of science and science teaching practices : a case study of early childhood school science

Concerns raised in educational reports about school science in terms of students. outcomes and attitudes, as well as science teaching practices prompted investigation into science learning and teaching practices at the foundational level of school science. Without science content and process knowledge, understanding issues of modern society and active participation in decision-making is difficult. This study contended that a focus on the development of the language of science could enable learners to engage more effectively in learning science and enhance their interest and attitudes towards science. Furthermore, it argued that explicit teaching practices where science language is modelled and scaffolded would facilitate the learning of science by young children at the beginning of their formal schooling. This study aimed to investigate science language development at the foundational level of school science learning in the preparatory-school with students aged five and six years. It focussed on the language of science and science teaching practices in early childhood. In particular, the study focussed on the capacity for young students to engage with and understand science language. Previous research suggests that students have difficulty with the language of science most likely because of the complexities and ambiguities of science language. Furthermore, literature indicates that tensions transpire between traditional science teaching practices and accepted early childhood teaching practices. This contention prompted investigation into means and models of pedagogy for learning foundational science language, knowledge and processes in early childhood. This study was positioned within qualitative assumptions of research and reported via descriptive case study. It was located in a preparatory-school classroom with the class teacher, teacher-aide, and nineteen students aged four and five years who participated with the researcher in the study. Basil Bernstein.s pedagogical theory coupled with Halliday.s Systemic Functional Linguistics (SFL) framed an examination of science pedagogical practices for early childhood science learning. Students. science learning outcomes were gauged by focussing a Hallydayan lens on their oral and reflective language during 12 science-focussed episodes of teaching. Data were collected throughout the 12 episodes. Data included video and audio-taped science activities, student artefacts, journal and anecdotal records, semi-structured interviews and photographs. Data were analysed according to Bernstein.s visible and invisible pedagogies and performance and competence models. Additionally, Halliday.s SFL provided the resource to examine teacher and student language to determine teacher/student interpersonal relationships as well as specialised science and everyday language used in teacher and student science talk. Their analysis established the socio-linguistic characteristics that promoted science competencies in young children. An analysis of the data identified those teaching practices that facilitate young children.s acquisition of science meanings. Positive indications for modelling science language and science text types to young children have emerged. Teaching within the studied setting diverged from perceived notions of common early childhood practices and the benefits of dynamic shifting pedagogies were validated. Significantly, young students demonstrated use of particular specialised components of school-science language in terms of science language features and vocabulary. As well, their use of language demonstrated the students. knowledge of science concepts, processes and text types. The young students made sense of science phenomena through their incorporation of a variety of science language and text-types in explanations during both teacher-directed and independent situations. The study informs early childhood science practices as well as practices for foundational school science teaching and learning. It has exposed implications for science education policy, curriculum and practices. It supports other findings in relation to the capabilities of young students. The study contributes to Systemic Functional Linguistic theory through the development of a specific resource to determine the technicality of teacher language used in teaching young students. Furthermore, the study contributes to methodology practices relating to Bernsteinian theoretical perspectives and has demonstrated new ways of depicting and reporting teaching practices. It provides an analytical tool which couples Bernsteinian and Hallidayan theoretical perspectives. Ultimately, it defines directions for further research in terms of foundation science language learning, ongoing learning of the language of science and learning science, science teaching and learning practices, specifically in foundational school science, and relationships between home and school science language experiences.

Early years teachers’ attitudes towards mathematics

Worldwide, there is considerable attention to providing a supportive mathematics learning environment for young children because attitude formation and achievement in these early years of schooling have a lifelong impact. Key influences on young children during these early years are their teachers. Practising early years teachers‟ attitudes towards mathematics influence the teaching methods they employ, which in turn, affects young students‟ attitudes towards mathematics, and ultimately, their achievement. However, little is known about practising early years teachers‟ attitudes to mathematics or how these attitudes form, which is the focus of this study. The research questions were: 1. What attitudes do practising early years teachers hold towards mathematics? 2. How did the teachers‟ mathematics attitudes form? This study adopted an explanatory case study design (Yin, 2003) to investigate practising early years teachers‟ attitudes towards mathematics and the formation of these attitudes. The research took place in a Brisbane southside school situated in a middle socio-economic area. The site was chosen due to its accessibility to the researcher. The participant group consisted of 20 early years teachers. They each completed the Attitude Towards Mathematics Inventory (ATMI) (Schackow, 2005), which is a 40 item instrument that measures attitudes across the four dimensions of attitude, namely value, enjoyment, self-confidence and motivation. The teachers‟ total ATMI scores were classified according to five quintiles: strongly negative, negative, neutral, positive and strongly positive. The results of the survey revealed that these teachers‟ attitudes ranged across only three categories with one teacher classified as strongly positive, twelve teachers classified as positive and seven teachers classified as neutral. No teachers were identified as having negative or strongly negative attitudes. Subsequent to the surveys, six teachers with a breadth of attitudes were selected from the original cohort to participate in open-ended interviews to investigate the formation of their attitudes. The interview data were analysed according to the four dimensions of attitudes (value, enjoyment, self-confidence, motivation) and three stages of education (primary, secondary, tertiary). Highlighted in the findings is the critical impact of schooling experiences on the formation of student attitudes towards mathematics. Findings suggest that primary school experiences are a critical influence on the attitudes of adults who become early years teachers. These findings also indicate the vital role tertiary institutions play in altering the attitudes of preservice teachers who have had negative schooling experiences. Experiences that teachers indicated contributed to the formation of positive attitudes in their own education were games, group work, hands-on activities, positive feedback and perceived relevance. In contrast, negative experiences that teachers stated influenced their attitudes were insufficient help, rushed teaching, negative feedback and a lack of relevance of the content. These findings together with the literature on teachers‟ attitudes and mathematics education were synthesized in a model titled a Cycle of Early Years Teachers’ Attitudes Towards Mathematics. This model explains positive and negative influences on attitudes towards mathematics and how the attitudes of adults are passed on to children, who then as adults themselves, repeat the cycle by passing on attitudes to a new generation. The model can provide guidance for practising teachers and for preservice and inservice education about ways to foster positive influences to attitude formation in mathematics and inhibit negative influences. Two avenues for future research arise from the findings of this study both relating to attitudes and secondary school experiences. The first question relates to the resilience of attitudes, in particular, how an individual can maintain positive attitudes towards mathematics developed in primary school, despite secondary school experiences that typically have a negative influence on attitude. The second question relates to the relationship between attitudes and achievement, specifically, why secondary students achieve good grades in mathematics despite a lack of enjoyment, which is one of the dimensions of attitude.

Determinants of skin self-examination (SSE) in men aged 50 years or older

Background: Queensland men aged 50 years and older are at high risk for melanoma. Early detection via skin self examination (SSE) (particularly whole-body SSE) followed by presentation to a doctor with suspicious lesions, may decrease morbidity and mortality from melanoma. Prevalence of whole-body SSE (wbSSE) is lower in Queensland older men compared to other population subgroups. With the exception of the present study no previous research has investigated the determinants of wbSSE in older men, or interventions to increase the behaviour in this population. Furthermore, although past SSE intervention studies for other populations have cited health behaviour models in the development of interventions, no study has tested these models in full. The Skin Awareness Study: A recent randomised trial, called the Skin Awareness Study, tested the impact of a video-delivered intervention compared to written materials alone on wbSSE in men aged 50 years or older (n=930). Men were recruited from the general population and interviewed over the telephone at baseline and 13 months. The proportion of men who reported wbSSE rose from 10% to 31% in the control group, and from 11% to 36% in the intervention group. Current research: The current research was a secondary analysis of data collected for the Skin Awareness Study. The objectives were as follows: • To describe how men who did not take up any SSE during the study period differed from those who did take up examining their skin. • To determine whether the intervention program was successful in affecting the constructs of the Health Belief Model it was aimed at (self-efficacy, perceived threat, and outcome expectations); and whether this in turn influenced wbSSE. • To determine whether the Health Action Process Approach (HAPA) was a better predictor of wbSSE behaviour compared to the Health Belief Model (HBM). Methods: For objective 1, men who did not report any past SSE at baseline (n=308) were categorised as having ‘taken up SSE’ (reported SSE at study end) or ‘resisted SSE’ (reported no SSE at study end). Bivariate logistic regression, followed by multivariable regression, investigated the association between participant characteristics measured at baseline and resisting SSE. For objective 2 proxy measures of self-efficacy, perceived threat, and outcome expectations were selected. To determine whether these mediated the effect of the intervention on the outcome, a mediator analysis was performed with all participants who completed interviews at both time points (n=830) following the Baron and Kenny approach, modified for use with structural equation modelling (SEM). For objective 3, control group participants only were included (n=410). Proxy measures of all HBM and HAPA constructs were selected and SEM was used to build up models and test the significance of each hypothesised pathway. A likelihood ratio test compared the HAPA to the HBM. Results: Amongst men who did not report any SSE at baseline, 27% did not take up any SSE by the end of the study. In multivariable analyses, resisting SSE was associated with having more freckly skin (p=0.027); being unsure about the statement ‘if I saw something suspicious on my skin, I’d go to the doctor straight away’ (p=0.028); not intending to perform SSE (p=0.015), having lower SSE self-efficacy (p<0.001), and having no recommendation for SSE from a doctor (p=0.002). In the mediator analysis none of the tested variables mediated the relationship between the intervention and wbSSE. In regards to health behaviour models, the HBM did not predict wbSSE well overall. Only the construct of self-efficacy was a significant predictor of future wbSSE (p=0.001), while neither perceived threat (p=0.584) nor outcome expectations (p=0.220) were. By contrast, when the HAPA constructs were added, all three HBM variables predicted intention to perform SSE, which in turn predicted future behaviour (p=0.015). The HAPA construct of volitional self-efficacy was also associated with wbSSE (p=0.046). The HAPA was a significantly better model compared to the HBM (p<0.001). Limitations: Items selected to measure HBM and HAPA model constructs for objectives 2 and 3 may not have accurately reflected each construct. Conclusions: This research added to the evidence base on how best to target interventions to older men; and on the appropriateness of particular health behaviour models to guide interventions. Findings indicate that to overcome resistance those men with more negative pre-existing attitudes to SSE (not intending to do it, lower initial self-efficacy) may need to be targeted with more intensive interventions in the future. Involving general practitioners in recommending SSE to their patients in this population, alongside disseminating an intervention, may increase its success. Comparison of the HBM and HAPA showed that while two of the three HBM variables examined did not directly predict future wbSSE, all three were associated with intention to self-examine skin. This suggests that in this population, intervening on these variables may increase intention to examine skin, but not necessarily the behaviour itself. Future interventions could potentially focus on increasing both the motivational variables of perceived threat and outcome expectations as well as a combination of both action and volitional self-efficacy; with the aim of increasing intention as well as its translation to taking up and maintaining regular wbSSE.

Exploring the process of implementing a smoking cessation intervention in pregnancy training program for midwives

The question of how to implement evidence effectively reveals a deficiency in our knowledge and understanding of the compound factors involved in such a process (Kitson, Rycroft-Malone et al. 2008). Although there is some awareness of the complexities of the process, there has been little exploration of the effectiveness of implementing evidence-based programs in health care. Despite public awareness of the dangers of smoking in pregnancy, and widespread public health measures to prevent smoking-related disease, women still continue to smoke in pregnancy (Ananth, Savitz et al. 1997; Laws and Hilder 2008). Evaluation of public health measures concludes that smoking cessation interventions during pregnancy increase quit rates among pregnant women (Melvin, Dolan-Mullen et al. 2000; Albrecht, Maloni et al. 2004; Lumley, Oliver et al. 2007). Notwithstanding the potential for improvement in health outcomes for pregnant women and their unborn babies, smoking interventions are often conducted poorly or not at all. Although midwives understand why women smoke in pregnancy and parenthood and are aware of the risks of smoking to both the pregnancy and the unborn child, they require specific knowledge and skills in the provision of support and advice on smoking for pregnant women (Bull and Whitehead 2006) . Organisational-change research demonstrates the complexity of the process of planned change in professionalised institutions such as health care (Greenhalgh, Robert et al. 2005). Some innovations and interventions are never accepted, and others are poorly supported (Greenhalgh, Robert et al. 2004). Comprehension of the change process around health promotion is crucial to the implementation of new health promotion interventions within health care (Riley, Taylor et al. 2003). This study utilised a case study approach to explore the process of implementing a smoking cessation training program for midwives in Queensland metropolitan and regional clinical areas, who attended a ‘Train-the-Trainer program’. The study draws on the organisational change work of Greenhalgh et al (2004) as the theoretical framework through which situational and structural factors are explored and examined as they inform the implementation of smoking cessation programs. The research data constituted staged interviews with midwives who instituted training programs for midwives, as well as organisational and policy documentation. Analysis of the data identified some areas that were not fully addressed in the theoretical model; these formed the basis of the Discussion and Implications for Future Research.

Integrating treatment for mental and physical disorders and substance misuse in Indigenous primary care settings

Objective: Australian Indigenous peoples in remote and rural settings continue to have limited access to treatment for mental illness. Comorbid disorders complicate presentations in primary care where Indigenous youths and perinatal women are at particular risk. Despite this high comorbidity there are few examples of successful models of integrated treatment. This paper outlines these challenges and provides recommendations for practice that derive from recent developments in the Northern Territory. Conclusions: There is a strong need to develop evidence for the effectiveness of integrated and culturally informed individual and service level interventions. We describe the Best practice in Early intervention Assessment and Treatment of depression and substance misuse study which seeks to address this need.

Children’s strategies for making friends when starting school

Starting school is a critical and potentially stressful time for many young children, and having supportive relationships with parents, teachers and peers and friends offer better outcomes for school adjustment and social relationships. This paper explores matters of friendship when young children are starting school, and how they initiate friendships. In audio-recorded conversations with a researcher and their peers, the children proposed a number of strategies, including making requests, initiating clubs and teams, and peer intervention to support a friend. Their accounts drew on social knowledge and relational understandings, and showed that having someone, a friend, to play with was important for starting school. Children gave serious attention to developing strategies to initiate friendships.

International law and the regulation of violence : shifting perceptions of the legitimacy of the jus ad bellum?

International law’s capacity to influence state behaviour by regulating recourse to violence has been a longstanding source of debate among international lawyers and political scientists. On the one hand, sceptics assert that frequent violations of the prohibition on the use of force have rendered article 2(4) of the UN Charter redundant. They contend that national self-interest, rather than international law, is the key determinant of state behaviour regarding the use of force. On the other hand, defenders of article 2(4) argue first, that most states comply with the Charter framework, and second, that state rhetoric continues to acknowledge the existence of the jus ad bellum. In particular, the fact that violators go to considerable lengths to offer legal or factual justifications for their conduct – typically by relying on the right of self-defence – is advanced as evidence that the prohibition on the use of force retains legitimacy in the eyes of states. This paper identifies two potentially significant features of state practice since 2006 which may signal a shift in states’ perceptions of the normative authority of article 2(4). The first aspect is the recent failure by several states to offer explicit legal justifications for their use or force, or to report action taken in self-defence to the Security Council in accordance with Article 51. Four incidents linked to the global “war on terror” are examined here: Israeli airstrikes in Syria in 2007 and in Sudan in 2009, Turkey’s 2006-2008 incursions into northern Iraq, and Ethiopia’s 2006 intervention in Somalia. The second, more troubling feature is the international community’s apparent lack of concern over the legality of these incidents. Each use of force is difficult to reconcile with the strict requirements of the jus ad bellum; yet none attracted genuine legal scrutiny or debate among other states. While it is too early to conclude that these relatively minor incidents presage long term shifts in state practice, viewed together the two developments identified here suggest a possible downgrading of the role of international law in discussions over the use of force, at least in conflicts linked to the “war on terror”. This, in turn, may represent a declining perception of the normative authority of the jus ad bellum, and a concomitant admission of the limits of international law in regulating violence.

Psychotic symptom and cannabis relapse in recent-onset sychosis

Background Cannabis use appears to exacerbate psychotic symptoms and increase risk of psychotic relapse. However, the relative contribution of cannabis use compared with other risk factors is unclear. The influence of psychotic symptoms on cannabis use has received little attention. Aims To examine the influence of cannabis use on psychotic symptom relapse and the influence of psychotic symptom severity on relapse in cannabis use in the 6 months following hospital admission. Method At baseline, 84 participants with recent-onset psychosis were assessed and 81 were followed up weekly for 6 months, using telephone and face-to-face interviews. Results A higher frequency of cannabis use was predictive of psychotic relapse, after controlling for medication adherence, other substance use and duration of untreated psychosis. An increase in psychotic symptoms was predictive of relapse to cannabis use, and medication adherence reduced cannabis relapse risk. Conclusions The relationship between cannabis use and psychosis may be bidirectional, highlighting the need for early intervention programmes to target cannabis use and psychotic symptom severity in this population.

Objectifying early-number : a visual nomenclature to express mathematical domain knowledge

To address issues of divisive ideologies in the Mathematics Education community and to subsequently advance educational practice, an alternative theoretical framework and operational model is proposed which represents a consilience of constructivist learning theories whilst acknowledging the objective but improvable nature of domain knowledge. Based upon Popper’s three-world model of knowledge, the proposed theory supports the differentiation and explicit modelling of both shared domain knowledge and idiosyncratic personal understanding using a visual nomenclature. The visual nomenclature embodies Piaget’s notion of reflective abstraction and so may support an individual’s experience-based transformation of personal understanding with regards to shared domain knowledge. Using the operational model and visual nomenclature, seminal literature regarding early-number counting and addition was analysed and described. Exemplars of the resultant visual artefacts demonstrate the proposed theory’s viability as a tool with which to characterise the reflective abstraction-based organisation of a domain’s shared knowledge. Utilising such a description of knowledge, future research needs to consider the refinement of the operational model and visual nomenclature to include the analysis, description and scaffolded transformation of personal understanding. A detailed model of knowledge and understanding may then underpin the future development of educational software tools such as computer-mediated teaching and learning environments.

A visual description of early-number counting, addition and subtraction knowledge

Early-number is a rich fabric of interconnected ideas that is often misunderstood and thus taught in ways that do not lead to rich understanding. In this presentation, a visual language is used to describe the organisation of this domain of knowledge. This visual language is based upon Piaget’s notion of reflective abstraction (Dubinsky, 1991; Piaget, 1977/2001), and thus captures the epistemological associations that link the problems, concepts and representations of the domain. The constructs of this visual language are introduced and then applied to the early-number domain. The introduction to this visual language may prompt reflection upon its suitability and significance to the description of other domains of knowledge. Through such a process of analysis and description, the visual language may serve as a scaffold for enhancing pedagogical content knowledge and thus ultimately improve learning outcomes.

Neuropsychological development in children with early and continuously treated phenylketonuria : association with biochemical markers

PKU is a genetically inherited inborn error of metabolism caused by a deficiency of the enzyme phenylalanine hydroxylase. The failure of this enzyme causes incomplete metabolism of protein ingested in the diet, specifically the conversion of one amino acid, phenylalanine, to tyrosine, which is a precursor to the neurotransmitter dopamine. Rising levels of phenylalanine is toxic to the developing brain, disrupting the formation of white matter tracts. The impact of tyrosine deficiency is not as well understood, but is hypothesized to lead to a low dopamine environment for the developing brain. Detection in the newborn period and continuous treatment (a low protein phe-restricted diet supplemented with phenylalanine-free protein formulas) has resulted in children with early and continuously treated PKU now developing normal I.Q. However, deficits in executive function (EF) are common, leading to a rate of Attention Deficit Hyperactivity Disorder (ADHD) up to five times the norm. EF worsens with exposure to higher phenylalanine levels, however recent research has demonstrated that a high phenylalanine to tyrosine ratio (phenylalanine:tyrosine ratio), which is hypothesised to lead to poorer dopamine function, has a more negative impact on EF than phenylalanine levels alone. Research and treatment of PKU is currently phenylalanine-focused, with little investigation of the impact of tyrosine on neuropsychological development. There is no current consensus as to the veracity of tyrosine monitoring or treatment in this population. Further, the research agenda in this population has demonstrated a primary focus on EF impairment alone, even though there may be additional neuropsychological skills compromised (e.g., mood, visuospatial deficits). The aim of this PhD research was to identify residual neuropsychological deficits in a cohort of children with early and continuously treated phenylketonuria, at two time points in development (early childhood and early adolescence), separated by eight years. In addition, this research sought to determine which biochemical markers were associated with neuropsychological impairments. A clinical practice survey was also undertaken to ascertain the current level of monitoring/treatment of tyrosine in this population. Thirteen children with early and continuously treated PKU were tested at mean age 5.9 years and again at mean age 13.95 years on several neuropsychological measures. Four children with hyperphenylalaninemia (a milder version of PKU) were also tested at both time points and provide a comparison group in analyses. Associations between neuropsychological function and biochemical markers were analysed. A between groups analysis in adolescence was also conducted (children with PKU compared to their siblings) on parent report measures of EF and mood. Minor EF impairments were evident in the PKU group by age 6 years and these persisted into adolescence. Life-long exposure to high phenylalanine:tyrosine ratio and/or low tyrosine independent of phenylalanine were significantly associated with EF impairments at both time points. Over half the children with PKU showed severe impairment on a visuospatial task, and this was associated only with concurrent levels of tyrosine in adolescence. Children with PKU also showed a statistically significant decline in a language comprehension task from 6 years to adolescence (going from normal to subnormal), this deficit was associated with lifetime levels of phenylalanine. In comparison, the four children with hyperphenylalaninemia demonstrated normal function at both time points, across all measures. No statistically significant differences were detected between children with PKU and their siblings on the parent report of EF and mood. However, depressive symptoms were significantly correlated with: EF; long term high phe:tyr exposure; and low tyrosine levels independent of phenylalanine. The practice survey of metabolic clinics from 12 countries indicated a high level of variability in terms of monitoring/treatment of tyrosine in this population. Whilst over 80% of clinics surveyed routinely monitored tyrosine levels in their child patients, 25% reported treatment strategies to increase tyrosine (and thereby lower the phenylalanine:tyrosine ratio) under a variety of patient presentation conditions. Overall, these studies have shown that EF impairments associated with PKU provide support for the dopamine-deficiency model. A language comprehension task showed a different trajectory, serving a timely reminder that non-EF functions also remain vulnerable in this population; and that normal function in childhood does not guarantee normal function by adolescence. Mood impairments were associated with EF impairments as well as long term measures of phenylalanine:tyrosine and/or tyrosine. The implications of this research for enhanced clinical guidelines are discussed given varied current practice.

The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.