The Context and Contextual Constructs of Research

This paper presents the Contextual Constructs Model (CCM) and the theory which underpins it, Contextual Constructs Theory (CCT). Developed as part of a complex project designed to investigate user perceptions of Information Quality (IQ) in the context of Web-based Information Retrieval (IR), the CCM is not a single research method per se. Instead, CCT/CCM is a modelled research framework providing an over-arching approach to scientific investigation, by which a researcher is able to identify multiple possible methods of study and analysis according to the identified research constructs and their contexts. Central to CCT is that all research involves the fusion of two key component parts; that of (1) context; and (2) cognitively-driven constructs; and that the co-dependent nature of the relationship between these components inform the research process, development and eventual outcomes. The resulting CCM framework is one which scaffolds research as a contextual process of phases, identifying the conceptual; philosophical, implementation, and evaluation tasks associated with a complex research investigation. The underlying epistemology of such a contextual approach to research is said to be a blend of a critical-real world view within a systems-science approach to investigation

Technology in nephrology

Early nephrological referral allows for uncomplicated transition to dialysis and improves long-term survival. Peripheral veins require careful preservation for future vascular access in patients with renal disease. Improved biocompatibility of modern polysulphone and other membranes reduces the inflammatory response to dialysis. The increased permeability of these modern membranes improves the clearance of solutes but does require volumetrically controlled machines. Volumetric dialysis equipment allows the patient’s fluid balance to be very precisely controlled. Continuous dialysis therapies for acute renal failure allow for dialysis for acutely ill patients who would not tolerate standard intermittent haemodialysis. Continuous dialysis for acute renal failure allows for intensive nutritional support and improved and more stable metabolic and volume control than standard dialysis. Continuous dialysis is the treatment of choice for patients with raised intracranial pressure. Bicarbonate-buffered dialysis fluid provides better acid-base control than standard acetate dialysis. Advances in technology are expensive and cost control is of increasing importance

Researching Memory in Early Modern Studies

This essay pursues the study of early modern memory across a chronologically, conceptually and thematically broad canvas in order to address key questions about the historicity of memory and the methodologies of memory studies. First, what is the value for our understanding of early modern memory practices of transporting the methodologies of contemporary memory studies backwards, using them to study the memorial culture of a time before living memory? Second, what happens to the cross-disciplinary project of memory studies when it is taken to a distant period, one that had its own highly self-conscious and much debated cultures of remembering? Drawing on evidence and debates from a range of disciplinary locations, but primarily focusing on literary and historical studies, the essay interrogates crucial differences and commonalities between memory studies and early modern studies

"It's Always Been a Second Class Cancer": An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma.

Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1-2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients' high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member

Supporting patients with low health literacy: what role do radiation therapists play?

Purpose: Health literacy plays a key role in a patient’s ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists’ perspectives on how they support people with lower health literacy who are undergoing radiotherapy. Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient’s health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient’s health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population

‘Beyond Cancer’: a study protocol of a multimodal occupational rehabilitation programme to support breast cancer survivors to return work

Introduction: With more women working and surviving breast cancer, issues concerning sustainable employment must be addressed. Support to transition back to work is a gap in survivorship care. This paper describes the feasibility trial protocol for a 'Beyond Cancer', a multimodal occupational rehabilitation programme to support breast cancer survivors' return to work. Breast cancer survivors are hypothesised to show improved work status, work capacity and perceived support at work at 6 months postintervention relative to baseline and a historical usual care group. Methods and analysis: The prospective feasibility design allows determination of change in primary (work status) as well as secondary outcome measures work capacity and perceived support at work. Participants: breast cancer survivors of working age, unable to work in their prediagnosis capacity for >3 months, their employers and a historical usual care group. Key intervention elements: an evidence-based biopsychosocial assessment and health coaching programme, employer education and support, and return to work (RTW) planning and monitoring. Health coaching empowers survivors to return to social function, including work. Employer education and support facilitates communication and improves workplace support. For employers, we predict change in confidence in effectively supporting employees' RTW. Multilevel regression modelling will provide indications of efficacy for primary and secondary outcomes, and thematic analysis will examine perceived efficacy and acceptability. Ethics and dissemination: Ethics approval has been granted by Monash and Curtin University Human Research Ethics Committees (HREC: 13300, HRE2019-0280, respectively). The evaluation of this innovative programme will provide the foundation for an Randomised Controlled Trial (RCT) and national roll-out, thus improving the quality of life of those who have been directly affected by breast cancer across Australia. Results will be published in peer-reviewed journals, presented at relevant conferences and disseminated to survivorship-focused organisations. Trial registration number: Registered trial with the Australian New Zealand Clinical Trials Registry (ANZCTR) (ACTRN12618001985279); Pre-results

“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan

Background: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. Method: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). Results: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. Conclusions: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways