Financial Assistance for Patients Who Relocate for Specialist Care in Hematology: Practical Findings to Inform Nursing Supportive Care.

AIMS: This article examines findings on the need for, awareness of, and critical time for referral to financial assistance for patients who have to relocate for specialist care for hematological malignancies. DESIGN: The study involved descriptive qualitative research based on in-depth interviews that were audio-recorded, transcribed verbatim, coded, and thematically analyzed. PARTICIPANTS: Forty-five hematology patients purposively selected from the client database of the Leukaemia Foundation of Queensland were interviewed for the study. RESULTS AND CONCLUSION: The findings indicate that there is a critical period at the initial point of diagnosis and start of treatment when patients are experiencing shock, confusion, and a sense of being overwhelmed by stress, fear, and uncertainty about the future. The stress can be exacerbated by the loss of work and a period of waiting to access income (e.g., from superannuation or approval to receive a pension). For some patients, this is a critical period when individuals need support and advice to avoid long-term financial problems. However, at this point in time, many individuals do not know how to access financial advice or assistance from leading cancer supportive care organizations. The findings have practical implications to inform the work by many nurses who provide psychosocial care to hematology patients.

Experience of clinical supervisors of international medical graduates in an Australian district hospital.

Objective Herein we record the experience of clinical supervisors of international medical graduates (IMGs) working as junior staff in a district hospital by examining supervisor perspectives on IMG performance, the factors affecting their performance and the requirements of supervision under these circumstances. Methods The present study had an open-ended exploratory qualitative design. Thirteen 13 open-ended, in-depth interviews were undertaken with supervisors of IMGs employed in a public district hospital in Queensland, Australia. Results The supervisors reported that, although performance was an individual and variable characteristic, IMGs tended to perform less well than Australian graduates and required more intensive supervision. Factors that affected performance were motivation and experience, and specifically lack of familiarity with the Australian healthcare system, lack of recent of practice, education, language, communication and cultural factors. English language proficiency was regarded as crucial to performance. Conclusions The additional work required to supervise IMGs in order to enable them to perform at a satisfactory level and successfully integrate into the Australian healthcare system needs to be recognised and resourced. Assistance with attaining proficiency in English and with communication skills over and above the standard required to pass the International English Language Testing System examination should be seriously considered as a means of improving performance. What is known about the topic? To date, there is little research available about the experience of supervisors of IMGs in Australia. What does this paper add? The findings of the present study make an important contribution to the literature by examining the critical role clinical supervisors of IMGs have in helping IMGs adapt to the Australian healthcare system and ensuring that they are able to provide quality health care. It identifies current challenges and highlights areas in need of attention to ensure a strong healthcare system for Australia. What are the implications for practitioners? Supervisors of IMGs need recognition of the extra time and expertise required in their role if they are to be effectively supported in their endeavours to integrate IMGs into the Australian health workforce. More attention needs to be given to the development of English language proficiency of IMGs, including colloquial usage, and communication in medical practice.

Financial distress during relocation for treatment of a hematological malignancy: Findings for social work.

The findings presented in this article are from qualitative research, funded by the Leukaemia Foundation of Queensland, which explored the financial impact of relocation for specialist treatment for hematology patients living in Queensland, Australia. The findings describe the factors that contribute to the lack of, or erosion of, a buffer to the financial distress created by diagnosis and relocation for treatment for a hematological malignancy. Individuals vulnerable to financial distress are those who lose or reduce employment, have restricted or no access to work cover or leave (sick, recreation or long service), have limited savings, and who have major repayments (e.g., home and car repayments). A combination of these factors can facilitate a spiral to acute and irreversible financial distress. The implications of the findings to social work are explored.

'The bills that were coming in ': out of pocket costs during relocation for specialist treatment for haematological malignancies.

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.

Haematology patients' desire to access metropolitan hospital expertise.

Objective To date, there is limited research to inform an understanding of cancer patients' choice as to location of treatment. This paper makes a contribution by providing findings on a group of regional, rural and remote cancer patients, namely those diagnosed with a haematological malignancy, who have to relocate for specialist care in Queensland, Australia. Methods A descriptive qualitative method was used based on 45 in-depth interviews with haematology patients living in Queensland who were supported by the Leukaemia Foundation of Queensland. Results Four key factors were found to affect the decision making of patients who prefer to travel to metropolitan hospitals for specialist haematology treatments, namely access to own doctor, bonds and familiarity with metropolitan staff, desire for 'quality' specialist care and a distrust of local clinical care and, for some, the absence of usual barriers to visiting the metropolitan area. Conclusions There are a group of patients who have experiences that lead them to distrust non-metropolitan hospitals and motivate them to travel long distances to attend specialist treating centres for 'quality' care. The literature affirms the concerns of this group. It is the hope and expectation in publishing this article that these patients' concerns will be taken into consideration in the development of health services and policy so that eventually all regional, rural and remote patients will be provided with equitable choice with regard to the location of accessing specialist care. What is known about the topic? The literature on haematology patients' experiences with and preferences for local verses metropolitan hospital treatment is limited. What does this paper add? To date, research on relocation for specialist treatment has documented the hardships for both patients and their families associated with distance from major treating hospitals. Although affirming the difficulties associated with travel and the desire of most haematology patients to be treated locally, this article completes the picture with detailed findings on a subset of patients who would prefer to travel to a metropolitan centre for treatment. What are the implications for practitioners? The issues with regard to relocation for specialist treatment are complex and associated with a range of 'trade-offs', both positive and negative, for haematology patients. Thus, with regard to both service delivery and health policy decision making, the full range of factors needs to be taken into consideration. This paper indicates that, for a subgroup of haematology patients, their experience and beliefs about issues of quality of care are paramount.

Looking Through the Lens of Receptivity and Its Role in Bereavement Support: A Review of the Literature.

Receptivity is a new concept within the area of scholarship on bereavement. There is a dearth of research that specifically focuses on individuals' receptivity in relation to bereavement support. This is particularly the case within the context of rural, regional, and remote locations. There is also a noticeable absence in the literature on bereavement support to Aboriginal families. Understanding receptivity in relation to bereavement in rural areas is important, particularly as bereavement support is an important area of service to the community by palliative care services. Receptivity to bereavement services has been identified as a critical factor in participation in bereavement support programs. This review provides a starting point by outlining the present literature on receptivity and bereavement.

Informal Caregivers of Palliative Oncohematologic Patients: The Invisible Guests: An Exhaustive Review of the Literature Available.

Informal caregivers are crucial members of the teams that care for palliative patients with cancer, including those with oncohematological malignancies. Publications concerning specific aspects of this latter group of carers are limited. This literature review indicates that palliative oncohematologic patients' caregivers do not differ from those of patients with solid tumors in ethical and related problems. However, there are specific problems for the former group with regard to negotiating the curative system, which are experienced as distressing, often without support from the health system and without offers of the possibility of being referred to palliative teams that they would have valued as very positive. Although this tendency seems to be changing, there is still considerable work to be done to improve the role of these carers.

Informal Financial Assistance for Patients With a Hematological Malignancy: Implications for Oncology Social Work Practice.

The article presents original research findings on informal financial assistance for hematological patients; that is, the gifts from family, friends, and communities that help patients cope with the financial hardship associated with cancer. The qualitative study involved interviews with 45 hematology patients that were audio-recorded, transcribed, coded, and then thematically analyzed. The findings examine the differing perspectives that individuals and families bring to the notion of informal financial aid, provide examples of individuals who require and receive informal financial assistance, and conclude with descriptions of those who require informal financial assistance but it is not available. The implications of the findings for oncology social work practice are explored.

'You never leave work when you live on a cattle property': Special problems for rural property owners who have to relocate for specialist treatment.

OBJECTIVE: This paper contributes to the literature on relocation for specialist care by providing findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. DESIGN AND SETTING: This paper uses descriptive qualitative research based on 45 interviews with patients with haematology in Queensland. The interviews were audio-recorded, transcribed verbatim, coded and thematically analysed. RESULTS: In addition to issues of distance, farmers and rural property owners who have to relocate for specialist care must deal with problems associated with the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. Further concerns include the cost of relocation in the context of continuing drought, serious problems sustaining the travel and time away required, and the lack of choice for some but to deal with treatment alone. CONCLUSION: In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology and telemedicine. However, there has been limited uptake of such models for patients with haematology. The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded.

Findings on Family Issues During Relocation for Hematology Care.

PURPOSE/OBJECTIVES: To present the findings from recent research on the experience of relocation for specialist treatment for patients in the hematology/oncology population. RESEARCH APPROACH: Descriptive, qualitative study based on exploratory, in-depth interviews that were recorded, transcribed, coded, and thematically analyzed. SETTING: Leukaemia Foundation of Queensland, Australia. PARTICIPANTS: A purposive sample of 45 individuals with hematologic cancer who had to relocate for specialist treatment. METHODOLOGIC APPROACH: A descriptive, qualitative methodology actioned through open-ended, in-depth interviews with 45 participants who relocated for specialist treatment. FINDINGS: The findings indicate that relocation happens at a time when patients are particularly emotionally vulnerable from the shock of their diagnosis or relapse and the confrontation with a potentially life-threatening condition. During this time, when the need for the comfort and support of home and family is heightened, patients have to separate from their family and travel to metropolitan specialist centers. For patients from regional, rural, and remote locations, which are lengthy distances from metropolitan hospitals, the choice to return home during treatment is not a realistic option. Distance also can be a barrier that prevents family from visiting the hospital to provide support. CONCLUSIONS: Individuals who have to relocate require psychosocial support. Because of the stresses associated with relocation for specialist care, many patients from regional, rural, and remote areas would prefer to be treated locally. INTERPRETATION: Understanding and responding to family issues associated with relocation for specialist treatment is an important aspect of oncology nursing care for patients who have to relocate from regional, rural, and remote areas. Because centralization of specialist hematology treatment is a worldwide trend, the findings have relevance to an international nursing audience.

Overcoming the distance barrier in relation to treatment for haematology patients: Queensland findings.

OBJECTIVE: The aim of the present study was to document the financial and psychosocial impact of relocation for specialist haematology treatment in Queensland. METHODS: This study was a qualitative exploratory study comprising 45 in-depth interviews with haematology patients supported by the Leukaemia Foundation of Queensland. RESULTS: The findings indicate that decentralisation of treatment is assisting haematology patients to overcome the profound difficulties associated with travelling to the metropolitan area for treatment. CONCLUSION: Fostering specialist outreach and building capacity in regional cancer centres are service delivery strategies that are greatly appreciated by regional, rural and remote haematology patients who are stressed by the many challenges associated with leaving home to travel distances for specialist treatment. It is the hope and expectation that these findings will make a contribution to informing future health policy and service delivery planning.

Diagnosis and treatment for vulvar cancer for indigenous women from East Arnhem Land, Northern Territory: bioethical reflections.

This paper explores the bioethical issues associated with the diagnosis and treatment of vulvar cancer for Indigenous women in East Arnhem Land, Northern Territory, Australia. Based on a qualitative study of a vulvar cancer cluster of Indigenous women, the article highlights four main topics of bioethical concern drawn from the findings: informed consent, removal of body parts, pain management, and issues at the interface of Indigenous and Western health care. The article seeks to make a contribution towards Indigenous health and bioethics and bring to light areas of further research.

Technology-based patient consultations: research findings from haematology patients in regional, rural and remote queensland.

BACKGROUND: Many haematology patients living outside the metropolitan centres are stressed by the demands of travel for treatment and are seeking alternatives. OBJECTIVE: This article provides the findings on the use of technology-based patient consultations for haematology patients in Queensland, Australia, from the perspective of the patients receiving the service. METHOD: The research was based on a descriptive qualitative approach involving open-ended interviews with a purposive sample of 45 haematology patients living in Queensland. RESULTS: The findings indicate that the use of technology for patient consultations is still in its infancy, involving few haematologists and limited to landline and mobile telephone, texting and Skype. These strategies are described as being used for follow-up and review rather than active treatment. CONCLUSION: The strategies are not replacing face-to-face contact between the haematologist and patient, but rather extending the length of time between such contacts. Whilst patients have expressed enthusiasm for technology-assisted patient consultations, there are still obstacles to overcome as many who would like access to such a service delivery do not presently have these options available.

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.

Patient perspectives on the usefulness of routine telephone follow-up as psychosocial support for hematologic malignancies: Australian findings.

PURPOSE/OBJECTIVES: To explore the use of routine telephone follow-up as a supportive care strategy for patients with hematologic malignancies from the patients' perspectives. RESEARCH APPROACH: A qualitative design based on a series of open-ended interviews and one focus group. SETTING: Leukaemia Foundation of Queensland, Australia. PARTICIPANTS: 50 participants recruited from the Leukaemia Foundation of Queensland database that represented a sample of major diagnostic groups, age, gender, and geographic location of patients with hematologic malignancies. METHODOLOGIC APPROACH: Interviews and focus groups were open-ended and were recorded, transcribed verbatim, coded, and thematically analyzed to form the basis of the findings. FINDINGS: The majority of participants in the study saw a perceived benefit in regular telephone follow-up as a supportive care service. Benefits included the positive aspects of individualized attention, potential support created for those not open to conventional types of support, and the positive effects of allowing support organizations to keep track of patient progress. However, some participants did not want to receive regular telephone follow-up support because of a desire to move on and access to other support through friends, family, or healthcare professionals. CONCLUSIONS: The results from the current study affirm previous research. Attitudes toward a telephone follow-up support service vary from patient to patient. Research demonstrates that patients with cancer responded with attitudes that range from favorable to unfavorable toward the benefits and usefulness of telephone support. INTERPRETATION: Oncology nurses provide supportive care for patients with hematologic malignancies, and they serve as a key professional group to provide follow-up telephone supportive care. Based on the findings from the current article, oncology nurses who provide supportive care should be aware of differing attitudes among patients with hematologic malignancies toward telephone follow-up support. Nurses participating in support initiatives should recognize the notion of patient receptivity and how it affects telephone support strategies.

Haematology and palliative medicine: moving forward.

The documentation of details on the provision of medical care for haematology patients in the palliative care setting not only provides useful baseline information for clinical consideration and debate, but signals that the scholarship in this area has come of age. Previously the research literature predominantly centred on the question of whether palliative medicine could or should be integrated into the care of haematology patients. The assumption is now in the affirmative and the concern becomes how best to effectively achieve this end.

The experience of relocation for specialist treatment for Indigenous women diagnosed with vulvar cancer in East Arnhem Land.

Vulvar cancer is a serious condition that requires a range of specialist treatments including surgery, chemotherapy, and radiation. In Australia, such treatments are only available in major metropolitan hospitals. Thus, women diagnosed with this condition in rural and remote areas must relocate to the metropolitan specialist centers for treatment. The focus of this article is on the experience of relocation for specialist care for Indigenous women diagnosed with vulvar cancer from East Arnhem Land, Northern Territory, Australia. The findings presented in this article explore a range of issues that affect the experience of relocation such as community concerns, cultural distress, loneliness, fear, worry, and physical concerns associated with the condition.

Considering Aboriginal palliative care models: the challenges for mainstream services.

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The 'living model' coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government's National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples' community values, beliefs, cultural/ spiritual rituals, heritage and place.

Key factors impacting on diagnosis and treatment for vulvar cancer for Indigenous women: findings from Australia.

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.

End-of-life care in hematology: update from Australia.

The purpose of this article is to provide recent findings on the perceptions and experiences about end-of-life care for individuals with a hematological malignancy. A qualitative design based on a series of open-ended interviews and one focus group was utilized to explore and document the experience of survivorship from the perspective of adult patients diagnosed with a hematological malignancy. Fifty participants (n = 26 male; n = 24 female) were interviewed representing the major hematological diagnostic groups: Multiple Myeloma, Lymphoma, and Leukemia. The interviews and focus group were recorded, transcribed verbatim, coded, and thematically analyzed. The findings presented are from the participants' experiences with end-of-life care. The findings indicated that those fortunate enough to know about the benefits of palliative care are more likely to access palliative care during end-of-life care. However, for many hematology patients there are still problems with timely referrals to the palliative system. Within the context of an Australian research program, the findings provide a useful "snapshot" of current issues for Australian hematology patients and their families.