Stories as findings in collaborative research: making meaning through fictional writing with disadvantaged young people

Working in a participatory research project with young people who are disabled, care-experienced or otherwise disadvantaged, collaborative fiction writing was a core method of hearing and amplifying their voices. We discuss how meanings were made in this iterative process of capturing resonances in the different stages of the research, resulting in the creation of stories filtered through many different participants. Through individual and joint reflections on the complex processes of constructing the 48 short stories, we demonstrate how collective storytelling can address criticisms of fictional research outputs as (in)valid social science, and argue instead that the resulting stories can be considered rigorous and faithful research findings. We suggest that these research outputs preserve and proliferate the meanings of marginalised young people, and challenge the absence or distortion of existing narratives about their lives as experienced by themselves

Working back to the future: strengthening radical social work with children and young people and their perspectives on resilience, capabilities and overcoming adversity

Using data from participatory story-telling research with 65 young people this paper provides a co-created theoretical grounding for radical social work with children and young people. The problems and solutions social work should be seeking are explored in the light of resilience theories and the Capability Approach. The young people’s perspectives echo but extend existing resilience interventions and definitions of Capability Approach, highlighting structural and historical patterns of inequality. They call for a collective response to adverse experiences, which become obvious in one zone of experience but have consequences and roots in other places. Social work could usefully employ expanded understandings of socio-ecological resilience and the Capability Approach (CA) to focus interventions more clearly on the root causes of adversities and shape interventions which highlight capability sustainability and co-created solutions. This would involve professionals working alongside children and young people, their families and allies, to confront enduring patterns of disadvantage

Recognition of early mortality in multiple myeloma by a prediction matrix

Early mortality (EM; death ≤ 6 months from diagnosis) has been reported in several newly diagnosed multiple myeloma (NDMM) trials. Before the era of novel agents, the incidence was 10%-14%. Causes of death included infections/pneumonia, renal failure, refractory disease, and cardiac events. Staging systems, such as the revised International Staging System (r-ISS), and prognostic factors including cytogenetics, lactate dehydrogenase levels, and myeloma-specific factors, are useful to assess overall prognosis; however, they cannot predict EM. We evaluated patients treated with novel agents in the Connect MM® Registry and identified risk factors of the EM cohort. Eligible patients were enrolled in the registry within 60 days of diagnosis. Univariate and multivariate analyses were conducted to evaluate associations between baseline characteristics and EM. Prediction matrices for EM were constructed from a logistic model. Between September 2009 and December 2011, 1493 patients were enrolled in the registry and had adequate follow-up. Of these patients, 102 (6.8%) had EM and 1391 (93.2%) survived for > 180 days. Baseline factors significantly associated with increased EM risk included age > 75 years, higher Eastern Cooperative Oncology Group performance status, lower EQ-5D mobility score, higher ISS stage, lower platelet count, and prior hypertension. Renal insufficiency trended toward increased EM risk. These risk factors were incorporated into a prediction matrix for EM. The EM prediction matrix uses differential weighting of risk factors to calculate EM risk in patients with NDMM. Identifying patients at risk for EM may provide new opportunities to implement patient-specific treatment strategies to improve outcomes

Collaborative Fiction Writing with Community Groups: A Practitioner Guide

This guide aims to provide some insight into the ways two projects have approached writing with community groups, and a starting-point for others who may want to engage in similar projects. One project, Life Chances, produced a co-written fictional novel, and the other project, Stories2Connect, produced 48 short stories. Both projects also produced a range of other outputs, but the focus here is on the co-production of fictional stories. These were seen as a means of conveying research findings to a wider audience than might normally be reached through more conventional academic outlets. In addition, both projects aimed to encompass and amplify voices that are usually talked over or distorted by those in more powerful positions. The use of fiction allowed freedom and creativity in the process, while also enhancing accessibility and longevity of the product. Both projects endeavour to address issues of inequality, inaccessibility, and lack of understanding around social issues. Both have used fiction to convey different perspectives, particularly the voices of marginalised groups and individuals, in an attempt to highlight the need for social change

Long-term out of pocket expenditure of people with cancer: comparing health service cost and use for indigenous and non-indigenous people with cancer in Australia

Abstract Background Indigenous Australians diagnosed with cancer have poorer survival compared to non-Indigenous Australians. We aim to: 1) identify differences by Indigenous status in out-of-pocket expenditure for the first three-years post-diagnosis; 2) identify differences in the quantity and cost of healthcare services accessed; and 3) estimate the number of additional services required if access was equal between Indigenous and non-Indigenous people with cancer. Methods We used CancerCostMod, a model using linked administrative data. The base population was all persons diagnosed with cancer in Queensland, Australia (01JUL2011 to 30JUN2012) (n = 25,553). Each individual record was then linked to their Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Scheme (PBS) records (01JUL2011 to 30JUN2015). We then weighted the population to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). The patient co-payment charged for each MBS service and PBS prescription was summed for each month from date of diagnosis to 36-months post-diagnosis. We then limited our model to MBS items to identify the quantity and type of healthcare services accessed during the first three-years. Results On average Indigenous people with cancer had less than half the out-of-pocket expenditure for each 12-month period (0–12 months: mean $401 Indigenous vs$1074 non-Indigenous; 13–24 months: mean $200 vs$484; and 25–36 months: mean $181 vs$441). A stepwise generalised linear model of out-of-pocket expenditure found that Indigenous status was a significant predictor of out of pocket expenditure. We found that Indigenous people with cancer on average accessed 236 services per person, however, this would increase to 309 services per person if Indigenous people had the same rate of service use as non-Indigenous people. Conclusions Indigenous people with cancer had lower out-of-pocket expenditure, but also accessed fewer Medicare services compared to their non-Indigenous counterparts. Indigenous people with cancer were less likely to access specialist attendances, pathology tests, and diagnostic imaging through MBS, and more likely to access primary health care, such as services provided by general practitioners

The patient co-payment and opportunity costs of accessing healthcare for Indigenous Australians with cancer: A whole of population data linkage study

Preston, RG ORCiD: 0000-0003-4700-1521Aim: To quantify the direct out-of-pocket patient co-payments and time opportunity costs (length of hospital stay) incurred by Indigenous and non-Indigenous persons diagnosed with cancer during the first year postdiagnosis. Methods: CancerCostMod was used, which is a model of cancer costs based upon a whole-of-population data linkage. The base population was a census of all persons diagnosed with cancer in Queensland, Australia between 1 July 2011 and 30 June 2012 (n = 25,553). Individual records were linked to corresponding Queensland Health Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme records between 1 July 2011 and 30 June 2015. Queensland data were weighted to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). Results: After adjusting for age, sex, rurality, area-based deprivation, and cancer group, Indigenous Australians accrued significantly less in postdiagnosis patient co-payments at 0–6 months (61% less) and 7–12 months (63% less). Indigenous Australians also had significantly fewer postdiagnosis hospitalizations at 0–6 months (21% fewer) and 7–12 months (27% fewer). Conclusion: There is growing concern regarding the financial burden of cancer to the patient. The time spent away from family and their community may also have an important time opportunity cost, which may affect a person's decision to undertake or continue treatment. This is the first study in Australia to identify the financial cost of co-payments for Indigenous people with cancer, as well as the number and length of hospitalizations as drivers of time opportunity costs

The Indigenous Australian Human Papillomavirus (HPV) Cohort Study 2, Continuation for 5 to 10 Years: Protocol for a Longitudinal Study

BackgroundHuman papillomavirus (HPV) infection, a common sexually transmitted disease, is associated with cancers of the cervix, vulva, vagina, penis, anus, and head and neck. Oropharyngeal squamous cell carcinoma (OPSCC; throat cancer) is a type of cancer involving the head and neck area that is rapidly increasing across the globe. There are higher rates of OPSCC among Indigenous populations relative to non–Indigenous Australian populations, although the HPV-attributable fraction remains unknown. For the first time at a global level, we plan to extend an Indigenous Australian adult cohort to monitor, screen, and ultimately prevent HPV-associated OPSCC and to undertake extensive cost-effectiveness modelling around HPV vaccination. ObjectiveThis study aims to (1) extend follow-up to a minimum of 7 years post recruitment to describe the prevalence, incidence, clearance, and persistence of oral HPV infection; and (2) conduct clinical examinations of the head and neck, oral cavity, and oropharynx and collect saliva samples for early-stage OPSCC testing. MethodsWe will continue to implement a longitudinal design for the next study phase, where we will ascertain the prevalence, incidence, clearance, and persistence of oral HPV infection at 48, 60, and 72 months; undertake clinical examinations/saliva assessments to detect early-stage OPSCC; and refer for treatment. The primary outcome measures are changes in oral HPV infection status, biomarker measures of early HPV-related cancer, and clinical evidence of early-stage OPSCC. ResultsParticipant 48-month follow-up will commence in January 2023. The first results are expected to be submitted for publication 1 year after 48-month follow-up begins. ConclusionsOur findings have potential to change the way in which OPSCC among Australian Indigenous adults is managed, with desired impacts including cost-savings on expensive cancer treatments; improved nutritional, social, and emotional outcomes; and improved quality of life for both Indigenous adults and the Indigenous community more broadly. Continuing a large, representative Indigenous adult cohort to track oral HPV infection and monitor early OPSCC is essential to yield critical information to include in the management armamentarium of health and well-being recommendations for Australia’s First Nations. International Registered Report Identifier (IRRID)PRR1-10.2196/4459