Pamela Della McGrath

Religiosity and the challenge of terminal illness.

One of the assumptions that underpins the literature on spirituality is the belief that facing a terminal illness is a life crisis that intensifies the search for meaning, leaving individuals predisposed to embrace religion. To date, however, there is scant empirical research on the topic. This article seeks to make a contribution to this topic by reporting findings from a qualitative study that address the question of whether individuals embrace religious beliefs when faced with the challenge of a serious illness. The data were gathered from open-ended interviews with 14 hospice patients, audiotaped, transcribed verbatim, and thematically analyzed. The findings indicate the majority did not seek religious comfort or conversion as a response to the challenge of terminal illness, even when this was seen as desirable. Although participants were not actively inspired to be religious as a result of their illness, they did hold a number of spiritual perspectives that were actively at play.

Insights on Aboriginal peoples views of cancer in Australia

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

Collaborative voices: ongoing reflections on nursing competencies

Abstract In a rapidly changing Australian health care environment, providers of undergraduate nursing programs are continually upgrading their assessment methods to ensure that graduates are competent and safe to practice. Competence assessment is based on the existing Australian Nursing & Midwifery Council (ANMC) Competency Standards for Registered Nurses. It is acknowledged that there are issues surrounding the validity and reliability of current assessment methods, primarily due to organisational constraints both at the University and the service provider level.There are a number of highly reliable tools available that enable assessment of nursing students in the psychomotor domain. Assessment in other domains is less precise.This paper explores some of the issues relating to competence assessment processes in order to promote discussion and discourse between educators, facilities and policy makers. It is envisaged that increased debate will result in an enhanced level of academic and clinical preparation for the upcoming nursing workforce in this country.

Beginning Treatment for Pediatric Acute Myeloid Leukemia: The Family Connection

There is a loud silence on psycho-oncology research in relation to pediatric Acute Myeloid Leukemia (AML). This article is part of a series that begins to address the psycho-social hiatus. The present article documents the less obvious, often hidden, aspect of beginning treatment for pediatric AML—the “behind the scenes” experience of the home and family connection. The findings are from the first stage of a five year longitudinal study that examines through qualitative research the experience of childhood leukemia from the perspective of the child, siblings and parents. Open-ended interviews, audio-recorded and transcribed verbatim, were thematically analyzed with the assistance of the Non-numerical Unstructured Data by processes of Indexing Searching and Theory-building (NUD*IST) computer program. The findings emphasize the disruption to normalcy in relation to home life, school, and work, which is exacerbated for families who relocate for specialist treatment. The findings emphasise the need for support for families coping with childhood AML.

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

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

Australian findings on Aboriginal cultural practices associated with clothing, hair, possessions and use of name of deceased persons

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.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.

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

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

The burden of the 'RA RA' positive: survivors' and hospice patients' reflections on maintaining a positive attitude to serious illness

GoalsThis article seeks to make a contribution to fostering work on the neglected area of research about how individuals maintain a positive outlook during their confrontation with serious illness. Insights are presented from both haematology survivors and hospice patients about the factors that hinder and facilitate their capacity to ‘be positive’.Patients and methodsOpen-ended interviews with 14 hospice patients and 12 haematology survivors on their construction of meaning in the face of serious illness were audio-recorded, transcribed verbatim and thematically analysed. The findings on the topic of maintaining a positive outlook are presented in this article.Main resultsAlthough the participants affirmed the value of a positive perspective on their illness experience, they were critical of unwanted pressure from others to be positive: a phenomenon they called the ‘RA RA’ positive. Such pressure interfered with the natural process of continually having to re-negotiate a positive outlook through exploring the fullness of feeling, both positive and negative. The participants indicated that at times of relapse or worsening physical condition they had to cycle through a process of despair/negativity and re-adjustment before they were able to find the positive. The process could not be rushed and required freedom from an imposed pressure to be positive.ConclusionsThe essential message is that a positive outlook cannot be imposed but requires a nurturing orientation that allows the expression of a full range of feelings in a supportive environment.

CORTICOSTEROIDS DURING CONTINUATION THERAPY FOR ACUTE LYMPHOBLASTIC LEUKEMIA: THE PSYCHO-SOCIAL IMPACT

This article presents the findings of qualitative research exploring the psycho-social effects of corticosteroid use in pediatric hematology patients during continuation therapy for Acute Lymphoblastic Leukemia (ALL). The findings are from a 5-year longitudinal study that documented the experience of treatment for childhood leukemia and related disorders from the perspective of the child patient and their family from the point of diagnosis to 1 year post-treatment. To date, scant information on the serious emotional side-effects of corticosteroid administration for children with ALL during the continuation period is available. This is concerning in light of the many serious challenges corticosteroid use poses to families of children with ALL. For this group of parents, dealing with the impact of corticosteroids on their child was reported as the major and only treatment-related stress during the continuation period of treatment for ALL. The impact of these drugs, described in very negative terms, was considered exacerbated by the fact that during the continuation period they are repeatedly administered in 5-week cycles. Anger and aggression, both passive and in acts of physical violence, in combination with temper tantrums and uncontrollable behavior were major concerns. Under the influence of corticosteroids the children could be moody, grumpy, confused, emotionally labile, depressed, sullen and withdrawn. The children could quickly switch from one emotional state to another, such as from aggression to emotionality. They could experience trouble with sleeping and talk excessively. The parents outlined a range of positive strategies for coping with the difficult behavior. The authors make a number of recommendations aimed at assisting parents to deal with the impact of the administration of corticosteroids in continuation therapy, including increasing the awareness on the part of health care providers of the side-effects of these drugs and their impact on the child with ALL and their family; provision of information to families on the effects of corticosteroid use; and, ensuring that professional counseling assistance is available when required.

Catastrophic bleeds during end-of-life care in haematology: controversies from Australian research

Goals of workThis article seeks to address the lack of information in the literature, by providing preliminary findings on the experience of managing catastrophic bleeds for haematology patients, from the perspective of health professionals involved in the care of such patients and their families.Materials and methodsInsights from qualitative interviews with seventeen (n = 17) haematological nurses, four (n = 4) palliative care nurses and fifteen (n = 15) haematologists, conducted as part of a 2-year major national study on haematology and palliative care funded by the National Health and Medical Research Council, Australia. The interviews were audio-recorded and transcribed verbatim. The language texts were coded and analysed thematically.Main resultsThe findings indicate that there is considerable controversy about the provision of clinical and supportive care to haematology patients who are vulnerable to catastrophic bleeds, including such issues as whether it is possible to identify individuals likely to be affected, the role of blood products, and whether it is wise to warn family or carers. The insights from the health professionals also highlight a number of practical suggestions including: the use of dark towels to reduce the distress of the visibility of the bleed; the importance of advance planning for care; accepting the limits of the situation; reassuring family that the patient is likely to lapse into lack of consciousness and will not be suffering, and the administration of sedation.ConclusionsThe important recommendation from this research is the resounding need for further work on this topic in order to provide clear guideline for best practice in clinical and supportive care.