Patient stories: an innovative direction for nurses providing support to hematology patients in rural areas.

AIMS: This study set out to explore the attitudes toward a "Patient Stories" DVD as a psychosocial support initiative for patients diagnosed with a hematological malignancy. DESIGN: A qualitative research design was employed through a series of open-ended interviews and one focus group. PARTICIPANTS: Participants were purposively sampled from a database of patients maintained by the Leukaemia Foundation of Queensland. In total, there were 50 participants (n=26 male, n=24 female), which represented the following major hematological diagnostic groups: multiple myeloma (n=15), lymphoma (n=14), leukemia (n=17), and other (n=4). Of the overall cohort, 11 participants had undergone a bone marrow transplant, and 15 had undergone a stem cell transplant (allogeneic and autologous transplants). RESULTS AND CONCLUSION: Most participants believed that a "Patient Stories" DVD would be a beneficial and effective way for nurses delivering psychosocial support to hematology patients. Such benefits included a sense of normalization from hearing similar stories and providing convenient support that did not require travel or potentially uncomfortable social situations. However, some participants did not show interest in the idea for reasons such as already having a local support system and not wanting to watch potentially frightening stories.

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.

'It's a regional thing': financial impact of renal transplantation on live donors.

INTRODUCTION: There has been no research exploring the financial impact on the live renal donor in terms of testing, hospitalisation and surgery for kidney removal (known as nephrectomy). The only mention of financial issues in relation to live renal transplantation is the recipients' concerns in relation to monetary payment for the gift of a kidney and the recipients' desire to pay for the costs associated with the nephrectomy. The discussion in this article posits a new direction in live renal donor research; that of understanding the financial impact of live renal donation on the donor to inform health policy and supportive care service delivery. The findings have specific relevance for live renal donors living in rural and remote locations of Australia. METHODS: The findings are presented from the first interview (time 1: T1) of a set of four times (time 1 to time 4: T1-T4) from a longitudinal study that explored the experience of live renal donors who were undergoing kidney removal (nephrectomy) at the Renal Transplantation Unit at the Princess Alexandra Hospital, Brisbane, Australia. A qualitative methodological approach was used that involved semi-structured interviews with prospective living kidney donors (n=20). The resulting data were analysed using the qualitative research methods of coding and thematic analysis. RESULTS: The findings indicate that live renal donors in non-metropolitan areas report significant financial concerns in relation to testing, hospitalisation and surgery for nephrectomy. These include the fact that bulk billing (no cost to the patient for practitioner's service) is not always available, that individuals have to pay up-front and that free testing at local public hospitals is not available in some areas. In addition, non-metropolitan donors have to fund the extra cost of travel and accommodation when relocating for the nephrectomy to the specialist metropolitan hospital. CONCLUSION: Live renal transplantation is an important new direction in medical care that has excellent long-term results for individuals diagnosed with end-stage renal disease. An essential element of the transplantation procedure is the voluntary donation of a healthy kidney by the live renal donor. Such an altruistic gift, which has no personal health benefit for the donor, is to be applauded and supported. The present research demonstrates that for some donors, particularly those living outside the metropolitan area, the gift may also include a range of financial costs to the donor. There is no prior research available on the financial impact of live renal donation for individuals living in non-metropolitan areas. Thus, this article is a seminal work in the area. The findings affirm 'rural disadvantage' by demonstrating that it is the live renal donors in non-metropolitan areas who are reporting financial concerns in relation to testing, hospitalisation and surgery for nephrectomy. It is the hope and expectation that the reporting on these costs will encourage further work in this area and the findings will be used for health policy and service delivery considerations.

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

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.

Reconceptualising relocation for specialist treatment: insights from New Zealand.

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.

Returning to work after treatment for haematological cancer: findings from Australia.

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.

'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.

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.

Learning from each other: cross-cultural insights on palliative care in Indian and Australian regions.

This article presents the findings of a cross-cultural research project that explored similarities and differences between palliative care service provision in Kerala, India and South-East Queensland, Australia, to inform a process of mutual learning for service development. Three major points of difference that can inform this process of mutual learning were identified: 1) an understanding of the significance of honesty in information-giving to the patient, 2) recognition of the importance of palliative care specialists providing education to mainstream health professionals, and 3) appreciation of the need for palliative care to be cognizant of the socio-economic impact of dying-especially for families experiencing poverty-by embracing strategies for financial and material support. The findings highlight the effectiveness of a cross-cultural collaboration between health professionals and researchers in South-East Queensland, Australia and Kerala, India.

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 Australia's 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.

The case for Aboriginal Health Workers in palliative care.

OBJECTIVES: The findings are drawn from a 2-year research project, funded by the National Health and Medical Research Council (NHMRC), which aimed to develop an innovative model for Indigenous palliative care. The findings presented in this article explore one important strategy for putting Aboriginal families and their communities at the centre of the model: that is, the employment of Aboriginal Health Workers (AHWs) in relation to the provision of palliative care in the Northern Territory. METHODS: The data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory with Indigenous patients and carers in the Northern Territory and the health professionals who care for them. RESULTS: While highlighting the valuable role of AHWs, the findings emphasise that the current lack of availability of such workers for palliative care provision for Indigenous peoples needs serious consideration.

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.

"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 world's Indigenous peoples.

Insights on Aboriginal peoples' views of cancer in Australia.

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.

Missed opportunities: nursing insights on end-of-life care for haematology patients.

There is now extensive consumer research to indicate that patients with haematological malignancies are not receiving appropriate or timely referrals to the palliative system. This paper begins to explore the issue from the professional perspective by presenting findings from haematology nurses on their experience with terminal care. The nursing insights have been gathered through open-ended interviews with a national sample of nurses with extensive experience in haematology in both public and private hospitals throughout Australia. The findings resonate with the previous consumer research in that all the acute care nurses affirmed that it is their belief, based on their professional experience, that patients from these diagnostic groups typically die in the acute ward dealing with escalating technology and invasive treatments. For some, the statements could be qualified by the satisfaction that they worked in a haematology unit, aware of the death-denying issues, trying to address the problem. Others, caught in a 'refractory' subculture (i.e. a subculture with a negative perception of palliative care), outlined the factors driving the lack of integration for their specific hospital. The focus of the discussion of findings is on the latter.

'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for Indigenous people.

Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients' and carers' wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live.