Hamish Holewa

Insights on Aboriginal peoples views of cancer in Australia

Abstract Although the incidence of cancer in Indigenous peoples is similar to its incidence in the overall Australian population, Indigenous peoples are less likely to access early detection and medical interventions resulting in higher mortality and morbidity rates. To explore and address this discrepancy, the National Health and Medical Research Council funded a research study to examine Indigenous peoples’ views of cancer and cancer treatments with an end goal of developing an innovative model of Indigenous Palliative Care. Seventy-two participants were interviewed from four geographical areas within the Northern Territory (Australia) including patients, caregivers, Indigenous and non-Indigenous health care workers, and interpreters. Indigenous peoples’ views of cancer have to be examined within a historical, socio-political, and cultural context. There is no Indigenous word for cancer and the Western biomedical language that semantically constructs the notion of cancer is not widely understood. Additionally, for many Indigenous people, the aetiology of cancer is embedded in beliefs about the spiritual world of curses and payback from perceived misdeeds. The paper advocates for cross-cultural education initiatives, stressing the importance of a two way education strategy incorporating a process whereby medical and nursing personnel would improve their understanding of Indigenous peoples’ view of cancer and Indigenous peoples would learn more about prevention and treatment of cancer from a biomedical perspective.

“They Should Come Out Here ...”: Research Findings on Lack of Local Palliative Care Services for Australian Aboriginal People

Although Aboriginal Australians experience morbidity and mortality rates far greater than that of the wider Australian population, to date, their access to culturally appropriate palliative care services has remained unexplored. This article provides findings from an Australian National Health and Medical Research funded study that documents the availability of palliative care services to Aboriginal peoples of the Northern Territory, Australia. The data were collected through a series of open-ended, qualitative interviews with a cross section of Aboriginal peoples and health professionals conducted during a 2-year period. The findings provide an overview of the palliative care services that are presently available and reflect a serious lack of local, culturally appropriate palliative care services. This research shows the similarities in the struggles and difficulties faced by Australian Aboriginals and Indigenous peoples worldwide. The hope is that the suggestions put forward for improvement will one day be useful for the worlds Indigenous peoples.

What does the term 'survivor' mean to individuals diagnosed with a haematological malignancy? Findings from Australia

PurposeThe 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.MethodsThe qualitative study involved in-depth interviews with 50 individuals diagnosed with a haematological malignancy. The interviews were transcribed verbatim, coded and then analysed thematically.ResultsThe 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.ConclusionThe word survivor had a multiplicity of meanings depending on the individual interpretation of the term.Relevance of manuscript to inform research, policies and/or programmesThe 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.

Practical Problems for Aboriginal Palliative Care Service Provision in Rural and Remote Areas: Equipment, Power and Travel Issues

With regards to end-of-life care, there is scant published research that looks specifically at the provision of palliative care services for Indigenous people. In addition, for Indigenous people in the rural and remote areas there is only limited literature that focuses on the problems associated with geography. To address the hiatus in the literature on Aboriginal, rural and remote palliative care, the following article provides findings from a two-year research project, funded by Australias National Health and Medical Research Council (NH&MRC), which developed an innovative model for Indigenous palliative care. The data was collected through a qualitative methodology (descriptive phenomenology) which involved open-ended in-depth interviews, audio-recorded, transcribed verbatim and thematically analysed. The sub-set of findings from the study presented in this paper examine issues in relation to the many practical obstacles in relation to palliative care service provision to Indigenous people in the rural and remote areas. The findings are a testament to the ingenuity and dedication of those who provide end-of-life care for Aboriginal peoples in rural and remote locations. The information about the many obstacles associated with equipment, power, transport, distance and telephone access provide important insights to inform the development of health policy planning and funding. The topic is specifically relevant to nurses as further findings from the study indicate that clinic and community nurses are key health professionals providing care to Indigenous people in the rural and remote areas.

Description of an Australian Model for End-of-Life Care in Patients With Hematologic Malignancies

PURPOSE/OBJECTIVES To present a model for end-of-life care in adult hematology that has been developed from nursing insights. DATA SOURCES Insights obtained from 25 nursing interviews during a two-year, qualitative, Australian National Health and Medical Research Council research study. DATA SYNTHESIS The nursing insights indicate that an understanding of end-of-life care in hematology needs to be set in a trilogy of overlapping models (labeled functional, evolving, and refractory) that address the complexity of issues associated with professional and hospital culture. CONCLUSIONS The authors have used the findings of their national research study to develop a useful, working model to assist with the integration of palliative care into adult hematology. IMPLICATIONS FOR NURSING The model develops a new language for understanding and fostering the integration of palliative care and hematology.

Reconceptualising relocation for specialist treatment: insights from New Zealand

PurposeTo 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.MethodsThe 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.ResultsThe 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.ConclusionsAny 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 programsThe 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.

'All these allied health professionals and you're not really sure when you use them': insights from Australian international medical graduates on working with allied health

OBJECTIVE This paper presents the findings of research which explored how International Medical Graduates (IMGs) understand and integrate with the allied health system in relation to multidisciplinary care. METHODS An open-ended, exploratory qualitative design comprised of thirty (n=30) open-ended, in-depth interviews with IMGs employed in a public hospital in Queensland, Australia. RESULTS; Many IMGs have no experience with allied health support in their country of origin. Multidisciplinary collaboration is a new concept for IMGs integrating into the Australia healthcare system. Learning about the allied health system, including how to work effectively within the context of the multidisciplinary team, is an important topic that needs to be addressed as a matter of priority. CONCLUSIONS; There is a strong need to focus on improving strategies for integrating IMGs into the allied health system. In particular, IMGs require information to help them understand the roles and referral processes associated with interfacing with the allied health system.

Procedural Care for Adult Bone Marrow Aspiration and Biopsy: Qualitative Research Findings From Australia

BACKGROUND This article presents a subset of findings on the experience of bone marrow aspiration and biopsy (BMAB) from an Australian hematology survivorship study. OBJECTIVE The aim of the larger research was to document and explore issues associated with the experience of survivorship for hematology patients supported by Leukaemia Foundation of Queensland. The experience with BMABs was one of the issues explored. METHODS The qualitative study involved in-depth interviews with 50 individuals with a diagnosis of a hematologic malignancy from a range of locations throughout Queensland, Australia. The interviews were transcribed verbatim, coded, and then analyzed thematically. RESULTS The findings demonstrate that, for many of the hematology patients in the study, BMABs were a painful experience. The findings indicate that a major contributing factor to the pain and discomfort is the lack of effective procedural care. CONCLUSIONS The findings emphasized the importance of the provision of choice with regard to anesthesia or sedation as part of the procedural care for BMABs. IMPLICATIONS FOR PRACTICE The insights provide urgency to the call for further research to improve clinical practice and procedural care in relation to BMABs. The strong recommendation from the study is that procedural pain in relation to BMABs for hematology patients be managed from the initial procedure as the consequences of a traumatic experience can be far reaching, particularly in light of the need for repeated BMABs over the treatment trajectory. As specialist nurses are now increasingly taking responsibility for carrying out such procedures, the findings have implications for the nursing profession.

Decision-making for living kidney donors: an instinctual response to suffering and death

Abstract This paper presents a sub-set of findings from the first interview (T1) of an Australian longitudinal study that documents the living donors experience with renal transplant. There has been limited Australian research on this topic to date. A qualitative methodological approach was used, involving open-ended interviews with prospective living kidney donors (n = 20) from the Renal Transplantation Unit at the Princess Alexandra Hospital in Brisbane, Queensland, Australia. The interviews were analysed using qualitative research methods of coding and thematic analysis. A significant majority of participants reported that the decision to become a living kidney donor was a positive, easy and spontaneous decision. It was driven by their natural instincts and they offered to be a donor at the earlier opportunity, rather than waiting to be asked. The offer was based on their desire to relieve the recipients suffering and possible death associated with dialysis and kidney failure. While concerns associated with the medical operation for donation (nephrectomy) were a consideration, this was significantly overshadowed by their desire to improve the recipients quality of life and avoid their possible death. In the face of such suffering and death, the donation of a kidney was considered ‘no big deal’. Such findings can be used to inform the assessment process for live donor screening.

The Emotional Consequences of Corticosteroid Use in Hematology: Preliminary Findings

This article presents the findings from a pilot study conducted as a first step in understanding the myriad psychological and psychiatric sequelae stemming from the use of steroids for hematology patients. Descriptions of the side effects experienced by 10 hematology patients undergoing steroid treatment are documented and discussed. Steroid usage can have a range of physical and emotional side effects on patients, including hematology patients. The insights are a serious reminder to all who care for hematology patients that the psychological and psychiatric side effects of steroids need to be taken seriously.