Biomedical subjects

Pam McGrath

Publications and source records attributed to Pam McGrath.

At least 19 recordsLinked to original sources

PubMed2006

'The biggest worry..': research findings on pain management for Aboriginal peoples in Northern Territory, Australia.

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.

Cultural Diversity↗

PubMed2006

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

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

Cross-Sectional Studies↗

PubMed2006

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

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

Hematologic Neoplasms↗

PubMed2006

Nursing advocacy in an Australian multidisciplinary context: findings on medico-centrism.

As a follow-up to a recent study which highlighted the existence of medical dominance in multi-disciplinary team (MDT) meetings, this paper presents research findings from an Australian study which shows that medico-centrism is a key cause of tension within MDTs. The findings are from a 1-year qualitative study in a regional hospital that explored the ethical decision-making of health professionals within an acute care medical unit. This exploration was conducted through an iterative, phenomenological, qualitative research methodology that consisted of open-ended interviews with a multi-disciplinary representation of health professionals and a sample of consumers for whom they care. The paper situates the notion of nursing advocacy within the context of medico-centrism and examines how the nursing profession interfaces with other disciplines. The findings indicate that the professional framework of nursing includes the language of advocacy, whilst the framework of doctors centres around the medical decision-making process. All professional groups made reference to the MDT as the modus operandi for patient-centred care. All participants noted that time and familiarity with patients and their families is essential for patient-centred care and this could be achieved through MDT collaboration. However, doctors who have scant time to spend with patients saw it as their responsibility to direct the decisions of the MDT and viewed the MDT as adding confusion to the decision-making process. Nurses reported that the limited amount of time spent by doctors in patient consultation translated into the need for advocacy. Professional and clinical confidence and experience are noted as necessary to successfully engage in the process of advocacy. The findings of this article indicate that the adoption of an advocacy role by nurses represents an important means through which MDT operation can be enhanced, medico-centrism limited and patient-centred care improved.

Cross-Sectional Studies↗

PubMed2006

Exploring Aboriginal people's experience of relocation for treatment during end-of-life care.

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.

Cross-Sectional Studies↗

PubMed2006

Collaborative voices: ongoing reflections on nursing competencies.

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 and 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.

Australia↗

PubMed2006

Insights on Aboriginal peoples' views of cancer in Australia.

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

Australia↗

PubMed2005

Another form to fill in! Clients' reflections on the hospice use of questionnaires.

GOALS OF WORK: The use of validated tools is increasingly accepted as an unqualified good that is viewed as best practice in supportive care. This article begins to explore the impact of standardized questionnaire use in supportive care by presenting findings from recent qualitative research on clients' perceptions of the use of standardized assessment tools during their hospice experience. PATIENTS AND METHODS: There were two arms to this phenomenological descriptive study: A. Interviews with hospice patients and their carers; B. Interviews with hospice staff. The results from arm A are reported in this article. This involved interviews with ten families (available patient and carer) who had hospice experience with questionnaires and ten families who were cared for without questionnaires. The interviews were audiorecorded, transcribed verbatim, and thematically analysed. MAIN RESULTS: The research presented in this article is seminal work in the area which affirms significant concerns about the use of questionnaires in hospice practice. The evidence indicates the majority of clients dislike the use of questionnaires and points to questionnaire use being a practice built around staff, rather than client, needs. The findings also provide insight into the process of collusion by which hospice workers who are enthusiastic about the use of questionnaires can be led to believe, because of client gratitude, that the process is positive. CONCLUSIONS: Questionnaires should not be seen as an unqualified good, and thus should not be automatically accepted as best practice within hospice or palliative care service provision.

Attitude to Death↗

PubMed2005

The "right story" to the "right person": communication issues in end-of-life care for Indigenous people.

OBJECTIVES: To explore communication issues faced by health care workers and Indigenous patients and their families in a palliative care setting. Effective communication with Aborigines is especially important because Aboriginal beliefs of health and sickness are so different from Western views. METHOD: Data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory with Indigenous patients and carers and the health professionals who care for them. RESULTS: Participants highlighted the struggle associated with effective communication when working in a cross-cultural setting at the interface of Indigenous and Western health care. The findings record the wisdom and insight from practitioners who have extensive experience dealing with communication difficulties.

Australia↗

PubMed2005

Developing a language for nonreligious spirituality in relation to serious illness through research: preliminary findings.

The preliminary findings presented in this article are part of a research program that is concerned with exploring the notion of spirituality for those dealing with serious illness. The aim of the program is not only to deepen our understanding of how individuals construct their spirituality in the face of life-threatening illness, but also to respond to such insights by beginning to develop a language reflective of the commonalities of experience. The development of such a language involves a three-phase process including the thematic development of qualitative data, comparative analysis of findings from disparate sample groups, and expert reflection of conceptual notions within the context of the richness of traditional philosophical/theological literature. This discussion focuses on the preliminary process of qualitative data development based on in-depth interviews with survivors of a hematological malignancy. The findings indicate that, for those who have a nonreligious framework, there is no shared language readily available to communicate their insights and experience with serious illness. However, the qualitative analysis also indicates that such survivors share a number of identifiable conceptual notions. These notions are articulated as a preliminary step in language development.

Adult↗

PubMed2004

Affirming the connection: comparative findings on communication issues from hospice patients and hematology survivors.

The following discussion presents comparative findings from hospice patients and hematology survivors on the topic of talking about dying to significant others within their network of family and friends. The insights have been gathered from an Australian research program that is exploring the notion of spirituality in relation to serious illness. The findings document the participants' awareness, acceptance, and fear of dying. It documents the difficulty associated with talking about dying, which creates voids in relationships and deprives seriously ill individuals of their sense of normality, at a time when they have a strong need to talk and share experiences. Six specific blocks to communication are explored, along with as emphasis on the importance of communicating with others who have a similar life experience.

Australia↗

PubMed2004

Positive outcomes for survivors of haematological malignancies from a spiritual perspective.

The findings indicate that there are many potentially positive outcomes, couched in terms of a spiritual journey, to be gained from the experience of serious illness for survivors who are well supported and obtain successful results from treatment. The work is from a qualitative programme exploring the notion of spirituality. The data are from the thematic analysis of verbatim transcriptions of audio-taped, in-depth, open-ended interviews with 12 survivors of haematological malignancies. The results indicate increased confidence and assertiveness, less dependence on the approval of others, greater ability to assert personal needs, increased awareness of body needs, being less judgmental and more compassionate. The positive outcomes also included the gift of extra life, the desire to live life to the fullest, a stronger sense of family togetherness, an awareness of reliable friends and family members, increased respect from others, changes in work values and an overall improvement in quality of life.

Adaptation, Psychological↗

PubMed2004

Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience.

Despite the plethora of clinical literature on the medical treatment for paediatric acute myeloid leukaemia (AML), there is a dearth of psycho-social literature on how families cope with either the disease or its treatments. The present article seeks to make a contribution by placing psychosocial aspects of childhood AML on the agenda. The findings are from a 5-year longitudinal, qualitative study on the psychosocial aspects of paediatric leukaemia. Qualitative data is gathered from open-ended interviews at three points in time on the experience of illness. The holistic findings from T1 present the impact of diagnosis and early treatment for childhood AML from the perspective of mothers, father, sibling and child patients. The study is also following up families with related disorders, thus it is possible to assess difference to other haematological groups. The findings indicate that the families bring scant prior understanding of the illness, and experience the diagnosis with fear and seriousness as a confrontation with death. At the point of entering treatment they are in a profound sense of shock and grief, which is exacerbated by a distressing, all pervading, sense of uncertainty. Families can be overwhelmed by the exhaustion of attending to the escalating practical demands of the situation combined with fatigue, worry and poor nutrition. All families find dealing with the invasive procedures and aggressive drug protocols emotionally challenging. However, in spite of the difficulties, parents have a strong desire to be with their child and find any separation painful. Families come to view the ward as a comfort zone where they have the support of the health and allied health team and the camaraderie of others experiencing a similar situation. However, even this support has to be qualified by the need for personal space, the difficulty of handling complex emotions, and the fear of being overwhelmed by difficulties other families face. The insights argue strongly for sensitive support for all individuals coping with childhood AML.

Acute Disease↗

PubMed2003

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

GOALS: This 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 METHODS: Open-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 RESULTS: Although 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. CONCLUSIONS: The 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.

Adaptation, Psychological↗

PubMed2003

Benefits of participation in longitudinal qualitative research study.

Although mainstream research institutions and health care organisations are now starting to acknowledge the important contribution of qualitative research, there are still many obstacles to obtaining funding. Consequently, at all points along the continuum of obtaining funds, enrolling participants and conducting the research, qualitative researchers will benefit from being able to refer to, or reference, a body of empirical knowledge that addresses ethical issues raised by those who have responsibility for decision-making about the implementation of research proposals. This article has been written with this strategy in mind. One such ethical issue is a concern about the impact on participants of being involved in qualitative studies when they are in a vulnerable state from a distressing life experience. This article provides empirical data that describes the benefits associated with qualitative research process for parents enrolled in a longitudinal study looking at the issues associated with diagnosis and treatment for paediatric haematological malignancies. The empirical findings affirm the significant beneficial contribution that qualitative research can make to the lives of those coping with an extremely challenging health care situation.

Adult↗

PubMed2003

Creating the space for spiritual talk: insights from survivors of haematological malignancies.

The findings presented in this article are from a recently established research program that aims to make a contribution to health care by using qualitative methodologies to deepen our understanding of the notion of spirituality and to document appropriate ways of responding to the spiritual issues experienced by those coping with serious illness. The discussion focuses predominantly on the insights provided by survivors of haematological malignancies about factors impacting on their need to talk about spiritual issues. The aim of presenting the findings is to highlight the importance of providing the opportunity for patients to talk about spiritual issues and to provide health and allied health professionals with insights on how to deal with this aspect of patient care. The insights provided by the participants go a substantial way in outlining the who, what, where and when of providing supportive communication on spiritual issues.

Adaptation, Psychological↗

PubMed2003

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.

Humans↗

PubMed2003

Including the fathers' perspective in holistic care. Part 1: Findings on the fathers' experience with childhood acute lymphoblastic leukaemia.

There is scant work completed on the fathers' experience with the treatment for childhood cancer. The present discussion seeks to make a contribution to deepening our holistic understanding of paediatric treatment for leukaemia by presenting findings on the paternal involvement in, and experience of, treatment for paediatric acute lymphoblastic leukaemia (ALL). The understanding will be extended in Part 2 by a detailed examination of specific issues associated with the fathers' hospital experience and in particular, the difficulties they face with restraining their child-patient for treatment.

Adaptation, Psychological↗