Investigating the cost-effectiveness of video telephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

Background Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancer Methods/design We will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families. Discussion This investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families.

Sing & Grow : the co-existence of evaluation research and clinical practice in an early intervention music therapy project

Sing & Grow is a short term early intervention music therapy program for at risk families. Sing & Grow uses music to strengthen parent-child relationships by increasing positive parent-child interactions, assisting parents to bond with their children, and extending the repertoire of parents’ skills in relating to their child through interactive . Both the Australian and New Zealand governments are looking for evidence based research to highlight the effectiveness of funded programs in early childhood. As a government funded program, independent evaluation is a requirement of the delivery of the service. This paper explains the process involved in setting up and managing this large scale evaluation from engaging the evaluators and designing the project, to the data gathering stage. It describes the various challenges encountered and concludes that a highly collaborative and communicative partnership bet en researchers and clinicians is essential to ensure data can be gathered with minimal disturbance to clinical music therapy practice.

Assessing the concordance of health and child protection data for 'maltreated' and 'unintentionally injured' children

Objectives: To quantify the concordance of hospital child maltreatment data with child protection service (CPS) records and identify factors associated with linkage. Methods: Multivariable logistic regression analysis was conducted following retrospective medical record review and database linkage of 884 child records from 20 hospitals and the CPS in Queensland, Australia. Results: Nearly all children with hospital assigned maltreatment codes (93.1%) had a CPS record. Of these, 85.1% had a recent notification. 29% of the linked maltreatment group (n=113) were not known to CPS prior to the hospital presentation. Almost 1/3 of children with unintentional injury hospital codes were known to CPS. Just over 24% of the linked unintentional injury group (n=34) were not known to CPS prior to the hospital presentation but became known during or after discharge from hospital. These estimates are higher than the 2006/07 annual rate of 2.39% of children being notified to CPS. Rural children were more likely to link to CPS, and children were over 3 times more likely to link if the index injury documentation included additional diagnoses or factors affecting their health. Conclusions: The system for referring maltreatment cases to CPS is generally efficient, although up to 1 in 15 children had codes for maltreatment but could not be linked to CPS data. The high proportion of children with unintentional injury codes who linked to CPS suggests clinicians and hospital-based child protection staff should be supported by further education and training to ensure children at risk are being detected by the child protection system.

Teachers’ and parents’ perspectives of digital technology in the lives of young children

The pervasiveness of technology in the 21st Century has meant that adults and children live in a society where digital devices are integral to their everyday lives and participation in society. How we communicate, learn, work, entertain ourselves, and even shop is influenced by technology. Therefore, before children begin school they are potentially exposed to a range of learning opportunities mediated by digital devices. These devices include microwaves, mobile phones, computers, and console games such as Playstations® and iPods®. In Queensland preparatory classrooms and in the homes of these children, teachers and parents support and scaffold young children’s experiences, providing them with access to a range of tools that promote learning and provide entertainment. This paper examines teachers’ and parents’ perspectives and considers whether they are techno-optimists who advocate for and promote the inclusion of digital technology, or whether they are they techno-pessimists, who prefer to exclude digital devices from young children’s everyday experiences. An exploratory, single case study design was utilised to gather data from three teachers and ten parents of children in the preparatory year. Teacher data was collected through interviews and email correspondence. Parent data was collected from questionnaires and focus groups. All parents who responded to the research invitation were mothers. The results of data analysis identified a misalignment among adults’ perspectives. Teachers were identified as techno-optimists and parents were identified as techno-pessimists with further emergent themes particular to each category being established. This is concerning because both teachers and mothers influence young children’s experiences and numeracy knowledge, thus, a shared understanding and a common commitment to supporting young children’s use of technology would be beneficial. Further research must investigate fathers’ perspectives of digital devices and the beneficial and detrimental roles that a range of digital devices, tools, and entertainment gadgets play in 21st Century children’s lives.

The transition to school of children with developmental disabilities : views of parents and teachers

The transition from early intervention programs to inclusive school settings presents children with developmental disabilities with a range of social challenges. In Queensland, in the year of transition to school, many children with developmental disabilities attend an Early Childhood Development Program for 2 to 3 days each week and also begin attendance in a mainstream program with the latter increasing to full-time attendance during the year. Quantitative and qualitative data were collected by parent interviews and teacher questionnaires for 62 children participating in the Transition to School Project regarding their perceptions of the success of the transition process and the benefits and challenges of inclusion. Both parents and teachers saw a range of benefits to children from their inclusion in ‘regular’ classrooms, with parents noting the helpfulness of teachers and their support for inclusion. Challenges noted by parents included the school’s lack of preparation for their child’s particular developmental needs especially in terms of the physical environment while teachers reported challenges meeting the needs of these children within the context and resources of the classroom. Parents were more likely than teachers to view the transition as easy. Correlational analyses indicated that teachers were more likely to view the transition as easy when they felt that the child was appropriately placed in a ‘regular’ classroom. Findings from this project can inform the development of effective transition-to-school programs in the early school years for children with developmental disabilities.

The association between playgroup participation, learning competence and social-emotional wellbeing for children aged 4-5 years in Australia

Data from Growing Up in Australia: The Longitudinal Study of Australian Children is used to examine the associations between playgroup participation and the outcomes for children aged 4 to 5 years. Controlling for a range of socio-economic and family characteristics, playgroup participation across the ages of 0-3 years was used to predict learning competence and social-emotional functioning outcomes at age 4-5 years. For learning competence, both boys and girls from disadvantaged families scored 3-4% higher if they attended playgroup when aged 0-1 and 2-3 years compared to boys and girls from disadvantaged families who did not attend playgroup. For social and emotional functioning, girls from disadvantaged families who attended playgroup when they were aged 0-1 and 2-3 years scored nearly 5% higher than those who did not attend. Demographic characteristics also showed that disadvantaged families were the families least likely to access these services. Despite data limitations, this study provides evidence that continued participation in playgroups is associated with better outcomes for children from disadvantaged families.

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.

Surrogacy and IVF

While in the past surrogacy was illegal in Queensland, since June 2010 the Surrogacy Act 2010 (Qld) (“the Act”) has made altruistic surrogacy arrangements lawful in Queensland. In addition, it provides a mechanism for transfer of legal parentage from the surrogate to the person(s) wishing to have a child (the intended parent(s)). Commercial surrogacy – where a payment, reward or other material benefit of advantage (other than the reimbursement of the “birth mother’s surrogacy costs” (s11 of the Act) is made for entering into a surrogacy arrangement – remains unlawful. The paramount guiding principle underpinning the Act is that of the wellbeing and best interests of a child born as a result of surrogacy. The Surrogacy Act 2010 (Qld) allows a single person or a couple (heterosexual or same sex couples) to enter into an agreement with a woman, and her partner (if she has one), to become pregnant with the intention that the child will be relinquished to the intended parent(s). The Act also provides a mechanism for the intended parent(s) to be legally recognised as the parent(s) of the child. In order for the intended parent(s) to be legally recognised (via a parentage order, discussed below) it must be shown that the surrogacy arrangement was entered into when all the parties were over 25 years of age and the intended parent(s) are male or, in a heterosexual or lesbian couple the female(s) are not likely to conceive or give birth to a healthy child due to medical reasons. The arrangement must be entered into before the surrogate becomes pregnant and all parties must have obtained independent legal advice and counselling about the proposed arrangement, and evidence of this is required at the time a parentage order is applied for. For the purposes of the Act it does not matter how the surrogate conceives the child or if the child is genetically related to the parties. During the period of the pregnancy, the surrogate has the right to manage her pregnancy in the way she wishes. Although she cannot profit from acting as a surrogate, section 11 states that she is entitled to surrogacy costs. These include, for example, reasonable medical costs related to pregnancy and the birth of the child; counselling and legal costs associated with the surrogacy arrangement; actual lost earnings because of leave taken during pregnancy or following birth and any reasonable travel expenses incurred. The surrogacy arrangement itself is not legally enforceable; however, obligations to pay a surrogate’s surrogacy costs are enforceable unless she chooses not to relinquish the child to the intending parents. While the Act does not specifically deal with the situation where the surrogate decides she is unprepared to relinquish the child to the intended parents, there have been examples where parties have entered into these kinds of arrangements, and the arrangements have become difficult. For example, the Family Court case of Re Evelyn (1998) FLC 92–807 involved a child born to a surrogate mother who decided not to surrender her. The child was the genetic child of the surrogate mother and the husband of the couple who had contracted with the surrogate mother. Both sets of parents brought proceedings in the court, seeking that the child live with them. In hearing the application, the court applied the paramount principle of the ‘best interests of the child’. The court made clear that there is no presumption in favour of the birth mother, although in this case the court found that the child may be better placed with the surrogate mother’s family.

Towards distributed citizen participation : lessons from WikiLeaks and the Queensland Floods

This paper examines the rapid and ad hoc development and interactions of participative citizen communities during acute events, using the examples of the 2011 floods in Queensland, Australia, and the global controversy surrounding Wikileaks and its spokesman, Julian Assange. The self-organising community responses to such events which can be observed in these cases bypass or leapfrog, at least temporarily, most organisational or administrative hurdles which may otherwise frustrate the establishment of online communities; they fast-track the processes of community development and structuration. By understanding them as a form of rapid prototyping, e-democracy initiatives can draw important lessons from observing the community activities around such acute events.

The development of an observation tool for use with parents with psychiatric disability and their preschool children

Community-based treatment and care of people with psychiatric disabilities has meant that they are now more likely to engage in the parenting role. This has led to the development of programs designed to enhance the parenting skills of people with psychiatric disabilities. Evaluation of these programs has been hampered by a paucity of evaluation tools. This study's aim was to develop and trial a tool that examined the parent-child interaction within a group setting, was functional and easy to use, required minimum training and equipment, and had acceptable levels of reliability and validity. The revised tool yielded a single scale with acceptable reliability. It had discriminative validity and concurrent validity with non-independent global ratings of parenting. Sensitivity to change was not investigated. The findings suggest that this method of evaluating parenting is likely to have both clinical and research utility and further investigation of the psychometric properties of the tool is warranted.

Sh-h-h-h : representations of perpetrators of sexual child abuse in picturebooks

Children’s picturebooks dealing with the topic of child sexual abuse first appeared in the early 1980s with the aim of addressing the need for age-appropriate texts to teach sexual abuse prevention concepts and to provide support for young children who may be at risk of or have already experienced sexual abuse. Despite the apparent potential of children’s picturebooks to convey child sexual abuse prevention concepts, very few studies have addressed the topic of child sexual abuse in children’s literature. Based on a larger study of 60 picturebooks about sexual child abuse published over the past 25 years, this paper critically examines eight picturebook representations of the perpetrators of sexual child abuse as a way to understand how potentially dangerous adults are explained to the young readers of these texts.

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.

Managing medical advice seeking in calls to Child Health Line

Child Health Line is a 24-hour Australian helpline that offers information and support for parents and families on child development and parenting. The helpline guidelines suggest that nurses should not offer medical advice, however they regularly receive calls seeking such advice. This paper examines how the service guidelines are talked into being through the nurses’ management of caller’s requests for medical advice and information, and shows how nurses orient to the boundaries of their professional role and institutionally regulated authority. Three ways in which the child health nurses manage medical advice and information seeking are discussed: using membership as a nurse to establish boundaries of expertise, privileging parental authority regarding decision making about seeking treatment for their child, and respecifying a ‘medical’ problem as a child development issue. The paper contributes to research on medical authority, and nurse authority in particular, by demonstrating the impact of institutional roles and guidelines on displays of knowledge and expertise. More generally, it contributes to an understanding of the interactional enactment and consequences of service guidelines for telehealth practice, with implications for training, policy and service delivery.