Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation

(Un)doing gender : ways of being in an age of uncertainty

Children’s literature has conventionally and historically been concerned with identity and the often tortuous journey to becoming a subject who is generally older and wiser, a journey typically characterised by mishap, adventure, and detours. Narrative closure in children’s and young adult novels and films typically provides a point of self-realisation or self-actualisation, whereby the struggles of finding one’s “true” identity have been overcome. In this familiar coming-of-age narrative, there is often an underlying premise of an essential self that will emerge or be uncovered. This kind of narrative resolution provides readers with a reassurance that things will work for the best in the end, which is an enduring feature of children’s literature, and part of liberal-humanism’s project of harmonious individuality. However, uncertainty is a constant that has always characterised the ways lives are lived, regardless of best-laid plans. Children’s literature provides a field of narrative knowledge whereby readers gain impressions of childhood and adolescence, or more specifically, knowledge of ways of being at a time in life, which is marked by uncertainty. Despite the prevalence of children’s texts which continue to offer normative ways of being, in particular, normative forms of gender behaviour, there are texts which resist the pull for characters to be “like everyone else” by exploring alternative subjectivities. Fiction, however, cannot be regarded as a source of evidence about the material realities of life, as its strength lies in its affective and imaginative dimensions, which nevertheless can offer readers moments of reflection, recognition, or, in some cases, reality lessons. As a form of cultural production, contemporary children’s literature is highly responsive to social change and political debates, and is crucially implicated in shaping the values, attitudes and behaviours of children and young people.

The right to choose an assisted death : time for legislation?

The legal framework that operates at the end of life in Australia needs to be reformed. • Voluntary euthanasia and assisted suicide are currently unlawful. • Both activities nevertheless occur not infrequently in Australia, in part because palliative care cannot relieve physical and psychological pain and suffering in all cases. • In this respect, the law is deficient. The law is also unfair because it doesn’t treat people equally. Some people can be helped to die on their own terms as a result of their knowledge and/or connections while some are able to hasten their death by the refusal of life-sustaining treatment. But others do not have access to the means for their life to end. • A very substantial majority of Australians have repeatedly expressed in public opinion polls their desire for law reform on these matters. Many are concerned at what they see is happening to their loved ones as they reach the end of their lives, and want the confidence that when their time comes they will be able to exercise choice in relation to assisted dying. • The most consistent reason advanced not to change the law is the need to protect the vulnerable. There is a concern that if the law allows voluntary euthanasia and assisted suicide for some people, it will be expanded and abused, including pressures being placed on highly dependent people and those with disabilities to agree to euthanasia. • But there is now a large body of experience in a number of international jurisdictions following the legalisation of voluntary euthanasia and/or assisted suicide. This shows that appropriate safeguards can be implemented to protect vulnerable people and prevent the abuse that opponents of assisted dying have feared. It reveals that assisted dying meets a real need among a small minority of people at the end of their lives. It also provides reassurance to people with terminal and incurable disease that they will not be left to suffer the indignities and discomfort of a nasty death. • Australia is an increasingly secular society. Strong opposition to assisted death by religious groups that is based on their belief in divine sanctity of all human life is not a justification for denying choice for those who do not share that belief. • It is now time for Australian legislators to respond to this concern and this experience by legislating to enhance the quality of death for those Australians who seek assisted dying.

When an eco-feedback system joins the family

The dynamic, chaotic, intimate and social nature of family life presents many challenges when designing interactive systems in the household space. This paper presents findings from a whole-of-family approach to studying the use of an energy awareness and management system called “Ecosphere”. Using a novel methodology of inviting 12 families to create their own self-authored videos documenting their energy use, we report on the family dynamics and nuances of family life that shape and affect this use. Our findings suggest that the momentum of existing family dynamics in many cases obstructs behaviour change and renders some family members unaware of energy consumption despite the presence of an energy monitor display in the house. The implication for eco-feedback design is that it needs to recognise and respond to the kinds of family relations into which the system is embedded. In response, we suggest alternative ways of sharing energy-related information among families and incentivising engagement among teenagers.

The problem of simplification: Think-tanks, recipes, equity and ‘Turning around low-performing schools’

Non-government actors such as think-tanks are playing an important role in Australian policy work. As governments increasingly outsource policy work previously done by education departments and academics to these new policy actors, more think-tanks have emerged that represent a wide range of political views and ideological positions. This paper looks at the emergence of the Grattan Institute as one significant player in Australian education policy with a particular emphasis on Grattan’s report ‘Turning around low-performing schools’. Grattan exemplifies many of the facets of Barber’s ‘deliverology’, as they produce reports designed to be easily digested, simply actioned and provide reassurance that there is an answer, often through focusing on ‘what works’ recipes. ‘Turning around low-performing schools’ is a perfect example of this deliverology. However, a close analysis of the Report suggests that it contains four major problems which seriously impact its usefulness for schools and policymakers: it ignores data that may be more important in explaining the turn-around of schools, the Report is overly reliant on NAPLAN data, there are reasons to be suspicious about the evidence assembled, and finally the Report falls into a classic trap of logic—the post hoc fallacy.