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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., (© The Author(s) 2015.)

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., (© The Author(s) 2015.)

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.

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.

This article aims to assist remote communities to develop their own palliative care services by providing findings on successful strategies identified through a 2-year research project which developed an innovative model for Indigenous palliative care. The discussion is set in the context of an understanding of the notion of cultural safety and discusses the positive experiences of the benefits of palliative care from the perspectives of both consumers and health professionals. The findings show that successful outcomes are derived from generic factors associated with palliative care philosophy and practice and from more specific factors, including the provision of pragmatic support to overcome practical problems, and community visits by health professionals. Factors specific to cultural respect are important, including familiarity and continuity of health care providers, cultural respect for grieving practices, provision of comfort food and bush tucker, development of culturally appropriate built environments, use of traditional healers and respect for spiritual practices.

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.

Historically palliative care research has focused on issues associated within the hospice and palliative care system. The findings presented in this manuscript reverse this assumption to argue that significant palliative care issues can only be understood if the focus is on the acute care system. Although a major proportion of deaths happen in the acute hospital setting, the acute care clinicians are the gate keepers to the palliative system. In short, understanding the ethical decision making of acute care professionals in relation to end-of-life care can illuminate many important palliative care practice development issues. The findings indicate that all professional groups in this study of an acute medical ward find end-of-life issues the most challenging of all the ethical challenges.

The ceremonies surrounding death are extremely important to Aboriginal peoples and take precedence over all other activities. This article presents research findings on Aboriginal mortuary ceremonies in the hope that it will be useful for non-indigenous nurses working with Aboriginal peoples. A qualitative research methodology was used, whereby data were collected by conducting 72 open-ended interviews with patients, carers, Aboriginal health care workers, health care workers and interpreters in four geographical areas in the Northern Territory. A descriptive phenomenological approach was taken to the recording and analysis of the data. The findings reveal that traditional practices including the smoking ceremony (a spiritual ritual conducted in the deceased's living space with the rationale of driving the deceased's spirit away), painting ochre on all living spaces inhabited by the deceased, or alternatively of putting up "flags" (which is considered to drive away the deceased's spirit and also to notify to the community that this is the house of a deceased) and the death ceremony (which includes practices such as keeping the deceased's body in the home, painting the bodies of the mourners and bringing kinship communities together to share food, song and dance) are of great significance in many Aboriginal cultures. It is the authors' hope and expectation that an understanding of these rituals, and their significance for different cultural groups, will assist nurses by increasing their knowledge of Aboriginal cultural and ceremonial practices associated with caring for the deceased and so aid their important work in this area.

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.

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.

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.

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.

Introduction: Effective pain management is considered essential during end-of-life care, and is core work for the discipline of hospice and palliative care. However, although there is extensive literature on pain relief during end-of-life care for Caucasians, there are few articles that focus specifically on issues associated with pain management for Australian Aboriginal peoples. In order to address this dearth, the present article provides findings from a National Health and Medical Research Council two-year study on Aboriginal palliative care, conducted in the Northern Territory, that explored and documented issues associated with pain management for rural and remote Aboriginal peoples., Methods: The data were collected through open-ended, qualitative interviews conducted with a cross-section of participants (consumers and health professionals) throughout the Northern Territory, Australia. There were a total of seventy-two interviews completed with a wide range of participants including patients (n = 10), carers (n = 19), Aboriginal health care workers (n = 11), healthcare professionals (n = 30) and interpreters (n = 2). The interviews were transcribed verbatim, coded and thematically analysed within a descriptive phenomenological framework., Findings: To understand the problems of pain management it is important to appreciate many of the cultural practices and beliefs of Aboriginal peoples. A complexity of cultural relationship rules determine who should and should not be directly involved in providing physical care. Findings from the study show that Aboriginal peoples may have a higher threshold of pain and are less likely to complain - this is particularly so for men, who do not want to appear weak by expressing their pain. Key factors impacting on pain management are cultural concerns about 'blame' and 'pay back'. There is also a fear of Western medicine, stemming from a lack of understanding of clinical notions of pain relief, fear of the administration, side effects and ramifications of medications, and fear that Western pain medications will speed up the dying process and inhibit the passing on of traditional knowledge and secrets that occurs during end-of-life. Strategies posited for ensuring effective pain management include developing trust, timely involvement of the doctor for administering pain medication, provision of emotional support, information giving to decrease fear, provision of the 'right' information to the 'right' person and strengthening of health service provision., Conclusions: The insights provided by a diversity of Aboriginal peoples and the health professionals who care for them provide valuable wisdom with respect to the best way to ensure effective pain management is made available to Australia's first peoples. At the core of this information is the need for cultural sensitivity and respect.

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 home lands; the fear of dis-empowerment 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.

It is now beginning to be understood that a particularly problematic area in oncology in relation to palliative care is that of haematology. Family members and carers who have experienced the institutional deaths of loved ones speak of their experiences with concern indicating a dire need for changes to present practice. Recommendations arising from this comparative research are included.

Recent research indicates that hospice/palliative care practices have not yet been integrated into the care of patients with hematological malignancies. As research in relation to palliative care and hematological malignancies is in its infancy, many of the end-of-life care practices with these diagnostic groups are based on unexamined ideas. The findings presented in this article, which are taken from recent post-doctoral research on hematological malignancies and palliative care, make a contribution to documenting information on what is happening to patients and their families in this area. In particular, the findings provide insights on issues associated with the patient and carer awareness that the patient is dying, understanding of prognosis, and the desire to die at home. Such insights are placed in the context of descriptions of the patients' experience with treatment during the terminal stage.

There is now substantial evidence that patients with haematological malignancies are not referred to the palliative system. Findings from the in-depth qualitative analysis of a successful case study are presented as a paradigmatic example of creative solutions that are available to begin to address this issue of inequity of access. The data provides important insights on the factors that facilitated timely referral to the palliative system, factors that facilitated the opportunity to die at home, a description of important elements of the dying experience, and the outcome of the palliative care experience for the carer. The opportunity for a satisfying dying experience can be afforded to haematology patients. This case study highlights some aspects that need to be considered during the development of palliative services for these diagnostic groups.

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]

The following article presents findings from a study conducted in the Northern Territory of Australia that explores Indigenous peoples' understanding of the Western notion of palliative care and hospice. The findings provide practical insights into the problems occurring at the interface of Western palliative care and traditional Indigenous care of the dying. In so doing, the findings can inform the development of service provision for all involved in end-of-life care for Aboriginal people. If palliative care is to be introduced to Aboriginal people, it is imperative that it be done in a culturally appropriate way. [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]

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]

This paper utilizes a case study of a woman in the final stage of Frederick's Ataxia, who, together with her carer, participated in an interview just days before she died. As a consequence of impairment associated with the later stage of the disease, the participant's verbal communication was limited. There are various ways in which individuals who are confronting the end of life experience spirituality. For this woman, spirituality was expressed as a connection with significant others, rather than as religiosity. Key findings are expressed in terms of the importance of insights offered by people with non-verbal communication, spirituality rather than religiousness, and the importance of domiciliary palliative care. The most important gift that pastoral carers, and carers in general, have to offer is the gift of relationship. [ABSTRACT FROM PUBLISHER]

There is a loud silence in the literature on the issues related to palliative care for hematological malignancies. This article presents information that begins to address that silence. The limited research that is available indicates that, to date, patients with a hematological malignancy and their families received scant attention with regards to the provision of palliative care. The findings presented in this article demonstrates that families are enduring considerable hardship and are left with much emotional pain and many unresolved issues when such care is not offered. It is hoped that the findings presented in this article will be used for developing effective strategies to ensure that patients with hematological malignancies and their families, no less than any others, can be afforded the dignity and respect that the appropriate provision of palliative services ensures. [ABSTRACT FROM PUBLISHER]

There is increasing evidence that, in practice, hospice care is predominantly accessed by white, middle-class patients, who live in stable home environments with available caregivers and other supports. The present challenge for researchers, administrators, and clinicians is to identify populations of terminally ill patients most in need of hospice care and to direct services to these patients. As a contribution to the development of this area, this paper presents the findings from a recent Australian hospice study that examines the needs and experiences of families from non-English-speaking backgrounds. The findings indicate that it is as important to focus on similarities as it is to highlight differences. [ABSTRACT FROM PUBLISHER]