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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. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

The rich data drawn from a study to develop an innovative model for Indigenous palliative care are presented to help address the paucity of authentic Indigenous voices describing their grief practices. Interviews with patients, carers, Aboriginal health care workers, health care workers and interpreters were conducted in four geographical areas of the Northern Territory in Australia. Insights and descriptions of the cultural processes and beliefs that follow the death of an Aboriginal person led to the identification of a number of key themes. These included: the emotional pain of grief; traditionalist ways of dealing with grief; the importance of viewing the body; the sharing of grief among large family and community networks, with crying, wailing, ceremonial singing, telling stories and dealing with blame all playing a part in the bereavement processes. Ways for Westerners to offer assistance in culturally sensitive ways were also identified by the participants, and are reported here to enable health workers to begin to understand and respond appropriately to traditionalist ways of experiencing and reacting to grief. [ABSTRACT FROM AUTHOR]

The cultural differences between the dominant Anglo-Australian and the Aboriginal Australian groups are significant, particularly in the way death is dealt with. It is thus extremely important for health care professionals caring for Aboriginal people with a terminal illness to be informed as fully as possible on Indigenous spiritual beliefs associated with death and dying. This article shares findings on Aboriginal spiritual perspectives relevant to the care of individuals coping with a terminal illness from a study in the Northern Territory. The findings emphasize the multiplicity of Aboriginal spiritual perspectives on serious illness and dying, which can juxtapose both Christian and traditional beliefs, as well as the importance for the well-being of Aboriginal persons of respecting these beliefs. The role and importance of traditional healing, the medicine man, and the preferred place of death are also discussed. [ABSTRACT FROM AUTHOR]

There is a significant cultural gap between westernized Australian and Aboriginal cultures, especially in regards to care of the dying. Thus, cultural sensitivity and respect, coupled with knowledge of the traditions and practices in respect of the death and dying, are of utmost importance in communicating with Aboriginal peoples. In order to make a contribution to furthering cultural safety in nursing practice, this article provides important insights on a wide range of Aboriginal cultural practices in relation to the clothing, hair, possessions and name of deceased persons that impact on the nursing care of the dying Aboriginal person. [ABSTRACT FROM AUTHOR]

Aim: To describe Aboriginal peoples' post-death cultural practices 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, Australia, with Aboriginal patients and carers, and the health professionals who cared for them. Results: The findings indicated the importance to Aboriginal peoples of viewing the body, and post-death bereavement practices of group wailing, which can be coupled with physical expressions of self-mutilation and removal of clothing. Special ceremonies are reported for times when the body is returned home and there are strong relationship-based practices about which persons are able to handle the body. Conclusion: The findings provide useful information for palliative care nurses working with Aboriginal peoples to ensure appropriate cultural understanding and an informed response to practice. [ABSTRACT FROM AUTHOR]

Objective: The present article provides findings from a two-year study on Indigenous palliative care conducted in the Northern Territory that explored and documented wishes in relation to place of death for rural and remote Aboriginal people. Design: Qualitative, open-ended interviews, audio-recorded, transcribed verbatim, and thematically analysed. Participants: There were a total of 72 interviews completed with Indigenous patients (n = 10), Indigenous caregivers (n = 19), Indigenous and non-Indigenous health care workers (n = 41), and interpreters (n = 2). Results: The findings provide a clear articulation of the wish of Aboriginal people from rural and remote areas to die at home connected to land and family. Strong cultural reasons were given for this preference, including the strong connection with land and community, a belief in ‘death country’, the importance of passing on sacred knowledge to the appropriate family member, the significance of ensuring that the dying individual's ‘animal spirit’ is able to return to the land, and the imperative that the ‘right person’ in the family network is available to provide the care. Conclusion: The strong wish to die at home informs the importance of building up local health and palliative care services and avoiding, where possible, the need for relocation for health care to the major metropolitan hospitals during end-of-life care. [ABSTRACT FROM AUTHOR]

To date, there is scant research literature that explores the provision of end-of-life care to Aboriginal peoples in Australia. In particular, there is a lack of published research available on issues at the interface of Aboriginal languages and English during palliative care. The complexity and importance of the issue for palliative care provision, however, is demonstrated by the fact that in Australia, Aboriginality is itself a very broad category, containing many distinct language groups and subcultures. Thus, although to date there is some mention of the problems associated with language in the literature, there is scant research on the topic of the provision of palliative care to Aboriginal peoples in remote areas. The following findings from a recent two-year National Health and Medical Research Council (NHMRC) study are provided to address this hiatus. The findings provide insights on the impact of language difference on palliative care practice for Aboriginal peoples in the Northern Territory of Australia. [ABSTRACT FROM AUTHOR]

TOPIC. Nursing insights on the experience of using standardized questionnaires during hospice care. PURPOSE. To explore and describe the experience of hospice staff using questionnaires on hospice clients: whether such instruments help or hinder the holistic, compassionate hospice practice and to set this topic on the research agenda in the hope of generating critical reflection on this important aspect of hospice care. SOURCES. A cross-section of hospice staff interviewed about their experience with administering the questionnaires. (Findings from research conducted with hospice clients on their experience of questionnaires are published separately.) CONCLUSIONS. The initial findings indicate that staff perceive questionnaires as negatively impacting on their efforts to engage in holistic and compassionate hospice practice and point to a major irony that questionnaires, designed for the supportive care of the vulnerable, actually make the vulnerable more vulnerable. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The following discussion presents findings from a National Health and Medical Research Council (NHMRC) study that documents the importance to Indigenous people of including the network of extended family and community in health care communication. In particular the discussion explores the data relating to the importance of communicating through family meetings with Aboriginal people during end-of-life care. The data was collected through a series of open-ended, qualitative interviews (n=72) conducted with a cross-section of members of the Aboriginal community and health professionals within the Northern Territory, Australia. Acknowledging Aboriginal peoples' relationship rules and communicating through family meetings are practices that demonstrate respect for Indigenous cultural processes of information sharing. Anger on the part of Aboriginal people about lack of information can be the outcome when such processes are ignored or not understood. Respecting the need to ‘share the story’ broadly with appropriate people in the extended family and community network through family meetings is noted as vitally important in health care, especially during the dying trajectory. The discussion explores the practical issues associated with, the different reasons for, and the positive outcomes from, incorporating family meetings for Indigenous people along the illness trajectory. [ABSTRACT FROM AUTHOR]

Aim: To explore indigenous peoples' experience of relocation for medical treatment during end-of-life care. Methods: The data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory, Australia, with Aboriginal patients and carers and the health professionals who cared for them. Results: Relocation for indigenous peoples is a frightening experience. There are a myriad of fears including: the fear of leaving home, especially for people who had never been away from their homelands; the fear of disempowerment associated with leaving the support of family networks; fears about hospital environments and 'high-tech' treatments; fear of cultural alienation for familiar foods and ways of being; fear of travel; fear of loneliness; fear of language and communication barriers; financial fears; and fear of dying away from the homeland. Conclusion: The findings demonstrate the strong need for building up local palliative care services and raise significant questions about the cultural appropriateness of the Western biomedical rationale for relocation during end-of-life care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]