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Purpose: This paper responds to the call for more research to fully understand out of pocket (OOP) costs for cancer patients by providing a detailed discussion of such costs for adult haematology patients from Queensland, Australia.Methods: The descriptive qualitative research was based on in-depth interviews with 45 (n = 45) haematology patients from regional, rural and remote areas.Results: The discussion itemises the OOP costs under four categories including the costs associated with travel and accommodation, the costs associated with family and friends during relocation, the costs associated with diagnosis and treatment, and the costs of parking.Conclusions: The paper provides evidence of the categories of financial burden experienced by haematology patients who have to relocate for specialist treatment by detailing the extensive range of OOP costs. The expectation is that the itemisation of OOP cost variables will contribute to future efforts of quantification. [ABSTRACT FROM AUTHOR]

Purpose: To date, there has been limited research on the topic of vulvar cancer. This paper provides findings from a qualitative study conducted with Indigenous women in East Arnhem Land, Northern Territory, Australia on the psychosocial impact of diagnosis and treatment for vulvar cancer. The insights from the study outlined in this paper not only make a contribution to deepening our understanding of the experience of vulvar cancer for Indigenous women, but provide practical recommendations to ensure effective and early engagement for diagnosis and treatment. Methods: A qualitative research method was employed through in-depth, open-ended interviews. The participants of the study were a purposive sample of Indigenous women with the condition, health professionals, and Aboriginal health workers. There were a total of 40 participants; with twelve ( n = 12) Indigenous women affected with the condition, fourteen ( n = 14) Aboriginal Health Workers, ten ( n = 10) nurses, three ( n = 3) doctors, and one ( n = 1) community member. Results: This paper addresses three key issues highlighted by the participants which include the fact that the private nature of the disease makes the condition 'women's business', that there is a sense of shame associated with the condition, and that there is fear and worry generated by the seriousness of the condition. Conclusion: The private nature of the disease and the sense of shame associated with the condition impact upon the diagnosis and treatment for many Indigenous women. In addition, the limitation of resources for health service delivery for East Arnhem Land exacerbates the problems faced by these communities. This paper puts forward suggestions to facilitate early diagnosis and treatment for women affected with the condition. [ABSTRACT FROM AUTHOR]

Purpose: The use of the word 'survivor' is now widely accepted in academic and clinical oncology culture. However, despite such prevalence, there is limited research exploring the meaning of the term survivor for the very individuals to which the term is applied. The article provides insights on the term survivor from a sub-set of findings taken from a Queensland study exploring the experience of survivorship for individuals diagnosed with a haematological malignancy. Methods: The qualitative study involved in-depth interviews with 50 individuals diagnosed with a haematological malignancy. The interviews were transcribed verbatim, coded and then analysed thematically. Results: The results indicated that the majority of participants actively disliked the term and did not embrace the notion of survivor in their post-diagnosis identity. Only a small number actively embraced the term. Conclusion: The word survivor had a multiplicity of meanings depending on the individual interpretation of the term. Relevance of manuscript to inform research, policies and/or programmes: The clear message from the research is that the term survivor needs to be used with care and sensitivity. The strong recommendation is that caution should be used when applying the term to individuals diagnosed with a haematological malignancy. The naming of support groups and newsletters should be sensitive to the wide range of meanings that individuals bring to this term. Indeed, the findings indicate that many do not identify with the term and require a more appropriate language to respond to their supportive care needs. [ABSTRACT FROM AUTHOR]

Purpose: Despite the personal and economic importance of the issue of returning to work after cancer treatment, there are major limitations in the research literature on the topic. Indeed, in relation to the focus of the present article, the experience of return to work for Australian haematology patients, there is little research available. Methods: The return-to-work findings are a sub-set from a study examining survivorship issues conducted through in-depth, qualitative interviews with a state-wide sample ( n = 50) of individuals who were at least 1 year post-treatment for haematological malignancy. Results: There were three groups identified in relation to employment: (1) those who were retired and work was not an issue, (2) those who had successfully re-entered the workforce and (3) those who wanted to work but were finding the process of return-to-work difficult. It is the third group that is the major focus for this paper. Conclusions: The clear indications are that group 3 requires assistance with return-to-work and were vulnerable to a range of psychosocial distress caused by inability to return to employment. Supportive care strategies to assist return to employment are provided. Relevance of manuscript to inform research, policies and/or programs Current improvements in cancer treatments have not only increased the number of cancer survivors but also peoples' ability to work during and following treatment. Maximising opportunities for cancer patients to return to work is a significant concern not only for individuals and employers but also economically for society. The findings reported in this article explored the individual story of a range of individuals with haematological malignancies in relation to their desire and efforts to return to work. Importantly, the findings not only provide insights on the work re-entry challenges faced by such individuals but also posit supportive care service delivery solutions to assist those who are vulnerable and frustrated in their efforts to find employment. [ABSTRACT FROM AUTHOR]

Purpose: To date, the research on relocation has been conducted in countries such as Australia where there are vast distances that need to be travelled by regional, rural and remote patients to access specialist metropolitan treatment. This research considers the issue of relocation for specialist treatment in a New Zealand context. Methods: The exploration of the experience of relocation from the consumers' perspective was conducted through an iterative, qualitative research methodology using open-ended interviews conducted by speaker-phone at the time and location of each participant's choice. Results: The three factors that underpin the phenomenon of 'travel-based' accommodation in New Zealand are the strong desire to return home, the small geographical distances that make this possible for many and the strong determination to endure hardship associated with travel when distances are long. Conclusions: Any understanding of relocation for specialist treatment needs to be informed by two concepts: 'travel-based' relocation and 'accommodation-based' relocation. Relevance of manuscript to inform research, policies and/or programs: The focus needs to be on providing supportive travel arrangements where possible. In New Zealand, as elsewhere, cancer supportive care organisations are increasingly providing volunteers to assist with travel. Such practical volunteer assistance is important, as is financial support through government subsidies to cover the cost of such travel. The insights from the study affirm the importance of health professionals who are supportive and creative in their efforts to assist people to return home. Supportive clinical care such as addressing issues in relation to nausea and pain management for those travelling must also be considered. [ABSTRACT FROM AUTHOR]

Goals Of Work: This article seeks to address the lack of information in the literature, by providing preliminary findings on the experience of managing catastrophic bleeds for haematology patients, from the perspective of health professionals involved in the care of such patients and their families.Materials and Methods: Insights from qualitative interviews with seventeen (n = 17) haematological nurses, four (n = 4) palliative care nurses and fifteen (n = 15) haematologists, conducted as part of a 2-year major national study on haematology and palliative care funded by the National Health and Medical Research Council, Australia. The interviews were audio-recorded and transcribed verbatim. The language texts were coded and analysed thematically.Main Results: The findings indicate that there is considerable controversy about the provision of clinical and supportive care to haematology patients who are vulnerable to catastrophic bleeds, including such issues as whether it is possible to identify individuals likely to be affected, the role of blood products, and whether it is wise to warn family or carers. The insights from the health professionals also highlight a number of practical suggestions including: the use of dark towels to reduce the distress of the visibility of the bleed; the importance of advance planning for care; accepting the limits of the situation; reassuring family that the patient is likely to lapse into lack of consciousness and will not be suffering, and the administration of sedation.Conclusions: The important recommendation from this research is the resounding need for further work on this topic in order to provide clear guideline for best practice in clinical and supportive care. [ABSTRACT FROM AUTHOR]

Goals Of Work: Corticosteroid treatments have been well documented to cause severe emotional and even psychiatric disturbances. Despite that corticosteroid use is at the core of most treatment protocols for haematological malignancies, there is a dearth of published research (and controversy in the existing research) on the emotional and psychiatric sequelae of corticosteroid use for haematology patients and its connection with pre-existing mental history. This paper aims to address this hiatus and confusion by examining the emotional and psychiatric side effects of corticosteroids on haematology patients in Australia.Materials and Methods: The findings are from a pilot study that explored the prior mental health history and effects of corticosteroid use of ten haematology patients in Australia. Data was collected through an iterative, phenomenological, qualitative research methodology using open-ended interviews conducted at the time and location of the participant's choice. The interviews were audio-recorded and transcribed verbatim. The language texts were then entered into the QSR NUD*IST computer program and analysed thematically.Main Results: The significant finding from the study was that corticosteroids used in haematology treatments have the potential to affect anyone and are not related to an individual's prior mental health history. No participant presented evidence of psychiatric history or counseling and many reported emotional stability during previous times of difficulty. All participants reported emotional distress directly related to corticosteroid use. Participants reported difficulties during the period of withdrawal from corticosteroids and relief during periods free from the administration of corticosteroids.Conclusions: The findings provide evidence that emotional disturbances associated with corticosteroid use in haematology are a direct result of the drugs used and not a symptom of the individual's prior emotional health. Recommendations are given which have important implications for the management, support and education of patients and their families in relation to the potential emotional side effects from steroid administration and withdrawal. [ABSTRACT FROM AUTHOR]