Conference Presentations
“This archaic medical system we currently live in, needs to stop living in a tunnel”: Challenges of cancer survivorship in Aotearoa New Zealand
In December 2024 we gave this conference presentation at the Sociological Association of Aotearoa New Zealand Annual Conference at the University of Otago.
Long term cancer survival is increasingly prevalent, and this raises survivorship issues, not just about the quantity of time but also the quality of life. In this paper we consider a range of survivorship issues in what can be an unwelcoming environment for survivors. From 2020 to 2022, 81 interviews were conducted with Māori and non-Māori throughout Aotearoa New Zealand identified as exceptional cancer survivors, living with a diagnosis of cancer from four to 37 years. This presentation will cover concerns about unnecessary delays in diagnosis, arbitrary levels of assistance, differential treatments, private and public healthcare, and the incommensurability of worlds. Findings raise concerns about the potential for the healthcare system to foster iniquitous outcomes and marginalise those who explore alternative understandings of cancer and its treatment. To better support survivorship the healthcare system needs to both be more expansive in its approach, improve its performance in the capacity to detect cancer signals particularly in patients with a prior history of disease, and take a more tailored approach to cancer survivorship.
Trust, blame, and life limiting cancer diagnoses
In November 2024 we gave this conference presentation at The Australian Sociological Association Annual Conference at Curtin University, Perth.
Receiving a life-limiting cancer diagnosis requires decisions from those who have been diagnosed about the course of action they will take. In what can be an overwhelming event most people will follow the socially prescribed path of using conventional biomedicine. However, there are those who reject this path with many others who supplement it with other approaches. In this presentation we explore this issue through a ‘trust’ lens, considering the ways in which people ascribe to a blind or unqualified trust approach or a qualified critical approach. Based on our research with 81 participants who had been diagnosed with life-limiting cancer and 25 people supporting them, this presentation considers the various levels of trust that participants called upon - trust in self, trust in individuals, trust in organisations, and trust in systems, and how these levels relate to matters of cancer causation and blame, patient sense of control and culpability, and experiences that might challenge their capacity to trust themselves, health practitioners, public and private health systems of care and medical science.
Cancer diagnosis and a license to breach social norms
In November 2023 we gave this conference presentation at The Australian Sociological Association Annual Conference at the University of Sydney.
Abstract: A cancer diagnosis can arouse panic and fear, but for some it provides an opportunity to live life differently. This paper is based on research undertaken in Aotearoa New Zealand on the topic of exceptional cancer trajectories. Eighty-one participants who had been identified as living with a cancer diagnosis longer than expected were interviewed. For many participants the experience of having a cancer diagnosis was not all negative, with some participants suggesting that “it’s a privilege” and that it provided opportunities for them to live life differently. The diagnosis provided, for some, the opportunity to undertake lifestyle and consumption changes, to change attitudes, to take up new skills, to quit work, to change their ways of relating to others. The concepts of biographical disruption and posttraumatic growth are considered in relation to these accounts, and it is argued that the event of a cancer diagnosis can give license for people to breach social norms.
Access to diagnosis and treatment: the experience of cancer as wrangling with the system
In December 2022 we gave this conference presentation at The Sociological Association of Aotearoa New Zealand Annual Conference at Massey University in Auckland.
Abstract: This presentation is based on interviews with 81 people who have survived cancer longer than expected. Participants were identified through the cancer registry, networks, and were respondents to media publicity. As participants had long periods of living with cancer their voyage has required navigating the complexities of healthcare delivery in Aotearoa New Zealand.
There were differences in participants’ access to treatments, to diagnostic services, and in getting onto clinical trials. Access could be determined by a wide range of factors. For access to treatment this included participants’ level of citizenship, PHARMAC subsidisation, the stage of disease, waiting times in the public system, and the availability of oncology support over the holiday season. For non-conventional therapeutics access was determined mostly by affordability and knowledge of what was available, but also the legal situation related to some therapeutic practices. Access to diagnostics could be determined by what DHBs had available, what health insurance would cover, and issues of urgency. Getting access to clinical trials could be an outcome of oncologists ‘bending the rules’, lobbying from specialists, and ‘knowing the ropes’ to get onto trials. The presentation considers what hindered and facilitated accessing healthcare resources in life challenging situations.