Biomedical subjects

Pam McGrath

Publications and source records attributed to Pam McGrath.

32 records · Page 2Linked to original sources

PubMed2002

Creating a language for 'spiritual pain' through research: a beginning.

The findings presented in this discussion seek to make a contribution to fostering an appreciation of the importance of research on spirituality, a previously neglected dimension of health care. Qualitative research methodology based on open-ended interviews with 12 survivors of haematological malignancies was used. The interviews were transcribed verbatim and thematically analysed using the NUD*IST computer package. The preliminary findings from the study indicate a need for the development of a new language for articulating spirituality. The present discussion is an introductory attempt to begin to explore the notion of, and language for, the idea of 'spiritual pain'. The findings indicate that individuals need a strong sense of meaning-making and connection with life to be able to deal with the demands of aggressive, invasive treatments. Such a connection can be threatened by a break with the normal or expected relationships and satisfaction with life through physical, identity, relational and existential challenges and losses. When the disconnection is acutely painful (a subjective phenomenon depending on the individual) it then is experienced as spiritual pain, creating a void that challenges the individual's ability to derive any meaning from their existence. This study is seen as preliminary work, the first step in a series of articles aimed at beginning to develop, through research, a language of spiritual care.

Adult↗

PubMed2002

Palliative care and haematological malignancy: a case study.

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.

Adaptation, Psychological↗

PubMed2002

Beginning treatment for childhood acute lymphoblastic leukemia: insights from the parents' perspective.

PURPOSE/OBJECTIVES: To report the perspective of parents during the initial stages of diagnosis and treatment for their children's acute lymphoblastic leukemia (ALL). DESIGN: Descriptive and phenomenologic. SETTING: Royal Children's Hospital, Brisbane, Australia. SAMPLE: Parents (mothers, n = 12; fathers, n = 4) of 12 children (ages 0-10) undergoing treatment for ALL. METHODS: Open-ended, audiotaped interviews were transcribed verbatim and analyzed. MAIN RESEARCH VARIABLES: Parents' experiences of their children's initial diagnosis and treatment of ALL. FINDINGS: The parents' insights provided a clear indication that the initial stage of treatment is highly stressful and parents may be overwhelmed by the experience. The situational stress translated into three potentially overwhelming emotional states: the stress of uncertainty, the shock of diagnosis, and a feeling of being trapped in an unpleasant emotional roller-coaster ride. Honesty from healthcare professionals, the opportunity to share feelings, and an affirmation of the harshness of the situation were reported as helpful in dealing with the sense of being overwhelmed. CONCLUSION: Parents need honest information and sensitive emotional support to come to terms with the stresses associated with their children's diagnosis and initial treatment of ALL. Parents must have access to a safe environment where they can express their feelings and have the harsh reality of the initial stage of treatment affirmed. IMPLICATIONS FOR NURSING: Parents need considerable emotional support to negotiate the initial stage of treatment for ALL. Parents of children diagnosed with ALL must have honest information about diagnosis and treatment, as much information as possible for planning their daily lives, an opportunity to express real feelings, access to moments of personal space where feelings can be processed, and compassionate understanding of the emotional difficulties associated with this difficult life journey.

Adaptation, Psychological↗

PubMed2002

Are we making progress? Not in haematology!

It will be shown, through the presentation of recent research findings, that haematology is a neglected area in terms of sensitive care of the dying. The Australian evidence indicates that scant progress has been made in relation to even the most basic palliative care practices such as sensitive, honest information giving or appropriate referral to the palliative system. Rather, the data show that during terminal trajectory, patients from these diagnostic groups and their families remain trapped in processes within the high-tech, curative system that are not responsive to the needs of the dying.

Adolescent↗

PubMed2002

Allied health professional services for oncology outpatients: an Australian comparative study.

Psychosocial interventions used by the allied health team are now seen as making an important contribution to improving the psychological and functional statues of the increasing numbers of patients coping with cancer. However, there is a call from within the Allied Health Professionals (AHP) literature for empirical research to ensure that service delivery is supported by a reliable understanding of the needs of consumers. The present discussion responds to such a call by presenting the comparative findings from two independent studies looking at the needs of oncology out-patients for AHP services in Australia. The first study was completed at the Oncology Day Care Ward at the Mater Hospital, Brisbane, Queensland. The Brisbane research was subsequently repeated at the Mater Hospital, Newcastle, New South Wales. It is the comparative findings from the two projects that are presented here. The impetus for both studies came from a keen desire by the AHP teams of both hospitals to better understand quality of life issues in relation to their oncology outpatients in order to be able to provide appropriate and effective services. The same research instrument was used for both studies so the data are directly comparable. It is the hope and expectation that these findings will be useful to inform the work of other AHP teams who are engaging in the challenging but rewarding task of understanding and meeting the needs of oncology patients and their families for holistic care.

Allied Health Personnel↗

PubMed2002

End-of-life care for hematological malignancies: the 'technological imperative' and palliative care.

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.

Adolescent↗

PubMed2002

Dying in the curative system: the haematology/oncology dilemma. Part 2.

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.

Attitude of Health Personnel↗

PubMed2002

"Holding the child down" for treatment in paediatric haematology: the ethical, legal and practice implications.

Very little has been written about involuntary treatment for adult patients and even less about such treatment for paediatric patients. Ethical dilemmas for nurses in such situations have not been clearly articulated and there are no clear guidelines available in this area. The following findings from a qualitative, longitudinal study on the psycho-social aspects of treatment for childhood leukaemia and related diseases are offered as preliminary work on this important professional issue. The feelings of parents when confronted with the necessity of holding their child down so that they may receive probably curative treatments for acute lymphoblastic leukaemia are described and some of the ethical and legal issues confronting nurses who provide these treatments are explored.

Adult↗

PubMed2001

'Enough is enough': qualitative findings on the impact of dexamethasone during reinduction/consolidation for paediatric acute lymphoblastic leukaemia.

The results of a longitudinal study conducted with children undergoing treatment for acute lymphoblastic leukaemia (ALL) and their families in Brisbane, Australia, indicate that the emotional impact of one of the protocol drugs, dexamethasone, is acutely distressing. The findings presented cover the second interviews with the parents and children of the first 11 ALL families to have completed the re-consolidation stage of treatment. The results indicate that the negative impact of this drug is particularly severe during the reconsolidation stage, when families are exhausted with coping with the intensity of treatment. Thus, the administration of dexamethasone is a critical point in the pathway of care for children with ALL. The emotional consequences of the drug are profoundly disturbing, not only for the child, but for the whole family. The findings indicate that the period when dexamethasone is being administered is an important time for providing families with emotional support and information about likely sequelae of treatment. Because of guilt and self-doubt parents will not necessarily seek help, even if it is greatly needed. Recommendations are provided as to possible ways of reducing the distressing impact of the administration of this pharmaceutical intervention.

Adaptation, Psychological↗

PubMedDate not supplied

Reflections on nutritional issues associated with cancer therapy.

PURPOSE: It is now recognized that dietitians have a significant role to play in the care of oncology patients, many of whom have problems with nutrition. However, it is increasingly understood that there are important obstacles to assisting patients with nutritional problems in the oncology setting. The purpose of this article is to discuss the incidental findings of two recent studies, highlighting the importance of and problems associated with nutritional issues in patients with a hematologic malignancy. OVERVIEW: This article presents findings from two recent studies with a subset of patients who have hematologic malignancies. This diagnostic subgroup has specific challenges associated with nutrition and eating because of the intensive and aggressive treatments that patients endure. An explorative, descriptive, iterative, qualitative methodology was used for both studies. The focus was on exploring the lived experience of treatment in oncology/hematology for patients (prospective) and caregivers (retrospective). CLINICAL IMPLICATIONS: The findings indicate that the issues surrounding food and eating are considered to be of great significance both to patients who are undergoing intensive treatment for a hematologic malignancy and to their caregivers. The significance of food is not seen purely in relation to its nutritional value, but as an important quality-of-life issue. Eating problems during intensive chemotherapy are perceived as highly stressful and can be, in the case of treatment-related anorexia, life threatening. Recommendations are made for interventions that could reduce the stress and nutritional difficulties for both patients and caregivers.

Adaptation, Psychological↗

PubMedDate not supplied

Fathers' perspectives on the treatment for pediatric hematology: extending the findings.

There is scant research available about how fathers cope with their children receiving difficult treatment protocols for diseases such as childhood acute lymphoblastic leukemia (ALL). The present discussion contributes to this area with findings on the paternal experience of treatment for pediatric ALL collected from the families in a longitudinal study conducted at Royal Children's Hospital and the Mater Children's Hospital, Brisbane, Queensland. These findings emphasize the emotional shock and pain fathers experience in the early stages of the treatment process for children with leukemia. Their emotional responses run the gamut from engagement in the treatment process to withdrawal, from crying to taking "time out" to experiencing and expressing anger at their (and their child's) fate. In dealing with their child's illness over time fathers struggle with accepting the situation and attempting to restore some semblance of normality to their own and their families' lives.

Adaptation, Psychological↗

PubMedDate not supplied

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.

Acute Disease↗

PubMedDate not supplied

Qualitative findings on the experience of end-of-life care for hematological malignancies.

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.

Adolescent↗

PubMedDate not supplied

Spiritual pain: a comparison of findings from survivors and hospice patients.

The article presents comparative research findings on the notion of "spiritual pain." The findings from interviews with hospice patients affirm the previously published, preliminary conceptualization of spiritual pain from interviews with survivors. However, while the survivor findings highlight the potential for spiritual pain associated with life after high-tech curative treatment, the hospice patient data emphasize the protectiveness of the hospice experience for deflecting the possibility of spiritual pain. It is anticipated the discussion of comparative findings will affirm the importance of researching this "ignored dimension" and, in so doing, will enrich our understanding of the spiritual dimension of healthcare. The work is part of a program presently developing a language of spirituality through research.

Adaptation, Psychological↗