The use of caffeine for apnoea associated with trisomy 13 and trisomy 18

Apnoea is a major complication and a leading cause of death for infants with trisomy 13 (Patau syndrome) and trisomy 18 (Edwards syndrome). In recent years,the question of safety and potential merits of caffeine use to mitigate apnoea associated with these conditions has been prompted by parents.</p

A citizens' jury on euthanasia/assisted dying: Does informed deliberation change people's views?

Euthanasia or assisted dying (EAD) remains a highly contentious issue internationally. Although polls report that a majority New Zealanders support EAD, there are concerns about the framing of the polling questions, and that those responding to the questions do not know enough about the situations described, the options available and the potential implications of EAD policy. One way to address these concerns is through a citizens' jury, which is a method of learning how a group of people view an issue following informed deliberation. This citizens' jury was conducted to learn whether a group of 15 New Zealanders thought the law should be changed to allow some form of EAD and the reasons for their view, having been informed about the issue, heard arguments for and against, and having deliberated together. The jury met for two and a half days. They did not reach a consensus, but become polarized in their positions, with several changing their positions to either strong opposition or strong support. The reasons why people support or oppose EAD were not reducible to particular principles or arguments, but reflected an integrated assessment of a range of considerations, informed by personal priorities and experiences. These results suggest that views on EAD may change in response to informed deliberation that the EAD debate involves a range of value judgments and is not likely to be resolved through deliberation alone. These results may inform international debate on EAD policy

Accessing diagnosis and treatment: The experience of cancer as wrangling with the system

Long term cancer survival is increasingly prevalent, and the consequences are of sociological and clinical interest. In this paper we deploy the concept of wrangling to emphasise the everyday tussle of survivorship and processes of navigating pathways through what can be an unwelcoming environment. From 2020 to 2022 81 interviews were conducted with people, Māori and non-Māori, throughout Aotearoa New Zealand identified as exceptional cancer survivors, living with a diagnosis of cancer from four to 37 years. Categories of wrangling discussed by participants included wrangling with the public drug-buying agency in Aotearoa New Zealand, wrangling between private and public healthcare systems, subaltern wrangling and wrangling across regions. Wrangling could be driven by the person with the cancer diagnosis, undertaken on behalf of that person by others including family and health professionals, and undertaken by the community. We argue that for most people with long-term cancer survival wrangling is a social practice, but the capacity to succeed in that practice is dependent on a range of factors, including levels of economic, cultural, and social capital. The concept of wrangling provides a contrast to an overemphasis in the survivorship literature on cancer as an individual experience; one largely disconnected from the art and practice of managing (often unwieldy and flawed) systems of care