ORCID Profile
0000-0001-9454-1059
Current Organisation
University of Sydney
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Human Bioethics | Applied Ethics | Law And Society | Health And Community Services | Language In Culture And Society (Sociolinguistics) | Developmental Psychology And Ageing | Public Policy | Sociology | Social Change
ANZSRC Socio-Economic Objective (SEO)
Public services management | The professions and professionalisation | Bioethics | Changing work patterns | Health education and promotion | Child health | Treatments (e.g. chemicals, antibiotics) | Social structure and health | Cancer and related disorders |
Related Links
Publications
Good Mothering or Good Citizenship?: Conflicting Values in Choosing Whether to Donate or Store Umbilical Cord Blood
Publisher: Springer Science and Business Media LLC
Date: 27-12-2012
DOI: 10.1007/S11673-011-9343-X
Abstract: Umbilical cord blood banking is one of many biomedical innovations that confront pregnant women with new choices about what they should do to secure their own and their child's best interests. Many mothers can now choose to donate their baby's umbilical cord blood (UCB) to a public cord blood bank or pay to store it in a private cord blood bank. Donation to a public bank is widely regarded as an altruistic act of civic responsibility. Paying to store UCB may be regarded as a "unique opportunity" to provide "insurance" for the child's future. This paper reports findings from a survey of Australian women that investigated the decision to either donate or store UCB. We conclude that mothers are faced with competing discourses that force them to choose between being a "good mother" and fulfilling their role as a "good citizen." We discuss this finding with reference to the concept of value pluralism.
Increasing diversity at the cost of decreasing equity? Issues raised by the establishment of Australia's first religiously affiliated medical school
Publisher: Wiley
Date: 07-2005
Decoration or communication? A qualitative study of images displayed around the bedsides of hospitalized children
Publisher: Equinox Publishing
Date: 13-07-2009
DOI: 10.1558/CAM.V6I1.61
Abstract: It is common to find images displayed around the bedsides of sick children who are hospitalized for extended periods. We report a qualitative study of bedside displays that is based on photographs taken at the bedside, and interviews with eight female patients and seven mothers of young children in an Australian paediatric hospital. We found that a variety of people contributed to the displays in different ways, and that the displays served a wide variety of purposes. We offer a general explanation of hospital bedside displays based on our analysis of the data collected for this study, and we differentiate three related domains for further research into hospital bedside displays. We conclude that bedside displays accomplish much more than decoration alone, and should be understood as aesthetic interventions that serve a wide range of communicative purposes.
Health Journalists' Perceptions of Their Professional Roles and Responsibilities for Ensuring the Veracity of Reports of Health Research
Publisher: Informa UK Limited
Date: 19-06-2012
Decision making in a crowded room: The relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation
Publisher: SAGE Publications
Date: 06-04-2011
Abstract: Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the ex le of allogeneic bone marrow transplant, in this article we identify decision making to be a relational process concurrently underpinned by patients’ engagement with health professionals, their families, and broader social networks. We argue that the person undergoing a transplant simultaneously reconciles numerous social roles throughout treatment decision making, each of which encompasses a system of mutuality, reciprocity, and obligation. As in iduals enter through the doorway of the consultation room and become “patients,” they do not leave their roles as parents, spouses, and citizens outside in the hallway. Rather, these roles and their relational counterpoints—family members, friends, and colleagues—continue to sit alongside the patient role during clinical interactions. As such, the places that doctors and patients discuss diagnosis and treatment become “crowded rooms” of decision making.
Standard of Prevention in the Real World: A Qualitative Study of Principal Investigators in HIV Biomedical Prevention Trials
Publisher: Informa UK Limited
Date: 10-2013
Informed consent and medical ordeal: a qualitative study
Publisher: Wiley
Date: 08-2201
DOI: 10.1111/J.1445-5994.2008.01700.X
Abstract: Informed consent is a mainstay of clinical practice, with both moral and legal forces. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such circumstances. The aims of this study were to compare expressed satisfaction with pretreatment information to satisfaction after experiencing autologous stem cell transplantation for recurrent lymphoma. A qualitative, narrative-based cohort study was conducted in a bone-marrow transplant unit of a teaching hospital at Westmead Hospital, Sydney, Australia. The cohort consisted of 10 transplant recipients and 9 of their nominated lay carers. The outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and 3 months later. We used discourse-analytic techniques to examine the narratives. Both patients and carers expressed high satisfaction with the information given by in idual clinicians and by speakers at a formal Information Day held before transplantation. At the first interview, neither patients nor carers commented much on the forthcoming ordeal of chemotherapy and bone marrow ablation, although all patients had undergone previous chemotherapy. At the second interview, the ordeal dominated the narratives and retrospective dissatisfaction with information was common. This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communication. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent.
Knowledge, Beliefs, and Decisions of Pregnant Australian Women Concerning Donation and Storage of Umbilical Cord Blood: A Population-Based Survey
Publisher: Wiley
Date: 02-07-2014
DOI: 10.1111/BIRT.12121
Abstract: Many women giving birth in Australian hospitals can choose to donate their child's umbilical cord blood to a public cord blood bank or pay to store it privately. We conducted a survey to determine the proportion and characteristics of pregnant women who are aware of umbilical cord blood (UCB) banking and who have considered and decided about this option. The survey also sought to ascertain information sources, knowledge, and beliefs about UCB banking, and the effect of basic information about UCB on decisions. Researchers and hospital maternity staff distributed a survey with basic information about UCB banking to 1,873 women of at least 24 weeks' gestation who were attending antenatal classes and hospital clinics in 14 public and private maternity hospitals in New South Wales. Most respondents (70.7%) were aware of UCB banking. Their main information sources were leaflets from hospital clinics, print media, antenatal classes, TV, radio, friends, and relatives. Knowledge about UCB banking was patchy, and respondents overestimated the likelihood their child would need or benefit from UCB. Women who were undecided about UCB banking were younger, less educated, or from ethnic or rural backgrounds. After providing basic information about UCB banking, the proportion of respondents who indicated they had decided whether or not to donate or store UCB more than doubled from 30.0 to 67.7 percent. Basic information for parents about UCB banking can affect planned decisions about UCB banking. Information should be accurate and balanced, should counter misconceptions, and should target specific groups.
Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer
Publisher: Springer Science and Business Media LLC
Date: 10-01-2015
Bioethics and the Myth of Neutrality
Publisher: Springer Science and Business Media LLC
Date: 28-11-2018
Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation
Publisher: Elsevier BV
Date: 04-2007
DOI: 10.1016/J.SOCSCIMED.2006.11.017
Abstract: High-dose chemotherapy and autologous stem cell transplantation (ASCT) is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and 'contested understandings' might interfere with patient adherence to the strict and demanding protocols required for successful ASCT. The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant. Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains--understandings of the transplant itself and its underlying theory, of the relationship between the components of the 'transplant', of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox information. Patients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur.
Psychedelic-assisted psychotherapy for the treatment of major depression: a synthesis of phenomenological explanations
Publisher: Springer Science and Business Media LLC
Date: 22-01-2022
DOI: 10.1007/S11019-022-10070-7
Abstract: Psychedelic-assisted Psychotherapy (PAP) combines the use of psychedelic compounds, such as psilocybin, with psychotherapy. PAP has shown some promise as a novel treatment for Major Depressive Disorder (MDD), and empirical research suggests that its efficacy turns on the altered states induced by psychedelic compounds. In this paper we draw on the literature of phenomenology to explain the therapeutic potential of psychedelic experiences. Svenaeus characterises mental illness as a form of suffering that entails three distinct but related experiences of alienation or "unhomelike being-in-the-world": (1) illness suffering, which relates to embodiment (2) existential suffering, which relates to self-narratives, and (3) political suffering, which relates to social relationships. Ratcliffe further characterises the experience of MDD in phenomenological terms as a loss of pre-intentional possibility that manifests as excessive noematic feeling in the experience of embodiment, restrictive narratives in the construction of self, and disconnectedness in experience of the social world. We contend that PAP ameliorates the suffering associated with MDD by inducing and consolidating a state of broadened pre-intentional possibility-one that entails sudden, profound and enduring changes in embodiment, self-narratives, and social experience. We argue further that this phenomenological account is consistent with a bio-psycho-social model of mental health and illness, and we frame it as an argument supporting the plausibility of recent claims about treatment success. This helps to justify ongoing future empirical research in this setting.
How Good Is “Good Enough”? The Case for Varying Standards of Evidence According to Need for New Interventions in HIV Prevention
Publisher: Informa UK Limited
Date: 06-2012
DOI: 10.1080/15265161.2012.671887
Abstract: In 2010, randomized controlled trials (RCTs) of two different biomedical strategies to prevent HIV infection had positive findings. However, despite ongoing very high levels of HIV infection in some countries and population groups, it has been made clear by regulatory authorities that the evidence remains insufficient to support either product being made available outside of research contexts in the developing world for at least two years. In addition, prevention trials in endemic areas will continue to test new interventions against placebo. But the judgments of evidentiary standards are never value-neutral. Using the recent trials and their contexts as case studies, we examine the basis for these decisions, which will potentially delay access to scientific innovation to the people who are most urgently in need of it.
Discourse Communities and the Discourse of Experience
Publisher: SAGE Publications
Date: 2003
DOI: 10.1177/1363459303007001619
Abstract: Discourse communities are groups of people who share common ideologies, and common ways of speaking about things. They can be sharply or loosely defined. We are each members of multiple discourse communities. Discourse can colonize the members of discourse communities, taking over domains of thought by means of ideology. The development of new discourse communities can serve positive ends, but discourse communities create risks as well. In our own work on the narratives of people with interests in health care, for ex le, we find that patients speak of their illness experiences as victims of circumstance policy makers construct adverse experiences and challenges as opportunities to be taken health care workers speak from a mixed perspective, seeing themselves as both victims and opportunists depending on context. To be trapped within the discourse of a particular community is to put at risk the ability to communicate across discourses. Membership of a discourse community can impair the habit of critique, and deny opportunities for heteroglossic discourse. Privileging critique as a mode of discourse perhaps might define the ethical community, suggesting that ethical community may be an antidote to the constraining effects of conventional discourse community.
The Best Bioethics Book You Read this Year Could Be a Documentary Film. A Review of Naked on the Inside
Publisher: Springer Science and Business Media LLC
Date: 28-08-2008
Life disruption and generic complexity: a social linguistic analysis of narratives of cancer illness
Publisher: Elsevier BV
Date: 11-2001
DOI: 10.1016/S0277-9536(00)00422-6
Abstract: This paper draws on social linguistics to inquire into the meaning and function of complexity in illness narratives. According to social linguists, five different story-type genres occur in spoken English. These are illustrated and differentiated using ex les drawn from 10 interviews with people who have undergone colectomy for colorectal cancer. In order to test a hypothesis that complexity in illness narratives is related to life disruption, the 10 accounts were ranked in terms of their generic complexity. Measures of life disruption were based on rankings furnished independently by two readers from different disciplines who were blind to the hypothesis being tested. These two rankings showed a high level of agreement (r(s) = 0.85, p<0.01). When the two life disruption rankings and the generic complexity ranking were compared, a high degree of concordance between the three rankings was observed (W = 0.91, p 0.05), age (p>0.7) nor time since diagnosis (p>0.1). We conclude that in this study, generic complexity was strongly and significantly related to life disruption. To explain the function of complexity in interaction, we characterise the illness narrative as a genre in its own right, and argue that illness narratives need to be considered both in terms of the work they do both on the listener and for the narrator. In the former case, complexity opens up a discursive space for the dynamic positioning of the interlocutor. In the latter case, we propose that complexity reflects the degree to which the process of re-ordering life by assigning meaning is occurring as the interaction unfolds. In both cases, complex narratives can thus be understood as "hard working" narratives.
Direct-to-consumer personal genome testing: Ethical and regulatory issues that arise from wanting to 'know' your DNA
Publisher: Wiley
Date: 03-2010
DOI: 10.1111/J.1445-5994.2010.02190.X
Abstract: Direct-to-consumer personal genome testing (DTC-PGT) screens a customer's genome for the presence of single nucleotide polymorphisms that are reported to be associated with various diseases, disease risk factors and personal characteristics. The range of health risks covered by personal genome testing (PGT) includes cancer, heart disease, obesity, diabetes mellitus and osteoporosis. PGT also detects a range of other characteristics, such as alcohol 'flush reaction', eye colour, ear wax type and bitter taste perception. Information about ancestry and family history is also available. Although DTC-PGT is still a relatively new enterprise, the technology has the potential for rapid expansion as it becomes more accessible to consumers who wish to obtain information about their genetic profile. This review provides an overview of the broader ethical and regulatory issues raised by personal genome tests that are marketed directly to the public, and that purport to provide information about health risks. We discuss the emergence of DTC-PGT in Australia, and the possible regulatory responses that may be taken to manage it.
Use of systematic reviews of randomised trials by Australian neonatologists and obstetricians
Publisher: AMPCo
Date: 10-1998
It's Time to Reframe the Savior Sibling Debate
Publisher: Informa UK Limited
Date: 07-2011
Growing Up With Cancer: Accommodating the Effects of Cancer Into Young People's Social Lives
Publisher: SAGE Publications
Date: 11-2013
Abstract: Adolescence and young adulthood are transitional periods of rapid and dramatic personal change. Few events can cause as unpredictable and challenging alterations to this process as the onset of a serious illness, such as cancer. Although we know much about the physical and psychological consequences of having cancer at this time, we know little about the effect of cancer on young people’s relationships. We conducted interviews with 15 women and 12 men aged between 16 and 29 years, who had survived cancer. Our findings demonstrate that the experience of cancer and how it affects relationships is complex. It arrests young people’s development by increasing their dependence on parents, giving them life experiences unavailable to peers, and complicating the process of establishing new relationships. However, it also accelerates development by facilitating closer and more mature relationships with parents and giving young people wisdom and insight not shared by peers. Cancer profoundly shapes how young people conduct their relationships. These changes require ongoing accommodation by young people with cancer, their parents, peers, and new acquaintances.
Religious Perspectives on Abortion and a Secular Response
Publisher: Springer Science and Business Media LLC
Date: 30-07-2010
DOI: 10.1007/S10943-009-9273-7
Abstract: This paper concerns the medical, religious, and social discourse around abortion. The primary goal of this paper is to better understand how seven of the world's major religious traditions (Roman Catholic, Lutheran, Jewish, Islamic, Buddhist, Confucian, and Hindu) address abortion 'in the clinic'. We do not aim to critique these commentaries but to draw out some of the themes that resonate through the commentaries and place these within complex social contexts. We consider the intersection of ontology and morality the construction of women's selfhood the integration of religious beliefs and practices in a secular world. We suggest that for many women, religious doctrine may be balanced with secular logic as both are important and inextricably linked determinants of decision making about the termination of pregnancy.
Creating space: Hospital bedside displays as facilitators of communication between children and nurses
Publisher: SAGE Publications
Date: 20-05-2009
Abstract: Over the past decades there has been a marked change in the physical environment of children's hospitals and the configuration of in idual bed spaces. No longer the stark, clinical spaces typical of years gone by, the modern hospital bed space hosts a variety of visual displays reflecting different aspects of the child's life. Building upon ideas introduced by Lewis and informed by a recent qualitative study into hospital bedside displays, this article discusses the role that displays can play in developing, deepening and enriching relationships between nurses, patients and their families in the paediatric hospital environment. It discusses the links between hospital and home, the specific function of the display of photographs and the nurse's role in `knowing' the patient and facilitating links between hospital and home. It concludes that nurses' conscious observations of a visually rich environment may make a positive contribution to the care that they deliver for the benefit of their patients and themselves.
From advance directives to advance care planning: Current legal status, ethical rationales and a new research agenda
Publisher: Wiley
Date: 15-08-2005
DOI: 10.1111/J.1445-5994.2005.00915.X
Abstract: This paper uses a case ex le to review the current legal status of advance directives, as well as their ethical rationale. We draw attention to ongoing efforts to institutionalize advance directives, and to some of the tractable and intractable reasons why advance directives are ineffective. We then introduce the concept of advance care planning, and argue that we should not assume that advance care directives have a place in this process. We conclude by offering three reasons why this assumption may operate, and by suggesting that contingency and uncertainty may sometimes overwhelm all rational approaches to medical care.
Hail and Farewell
Publisher: Springer Science and Business Media LLC
Date: 23-06-2007
Direct-to-consumer personal genome testing: The problem is not ignorance - It is market failure
Publisher: Informa UK Limited
Date: 22-06-2009
On surviving cancer
Publisher: SAGE Publications
Date: 10-2000
How Vulnerability and Trust Interact During Extreme Events
Publisher: SAGE Publications
Date: 29-07-2008
Abstract: The article discusses a theoretical model developed to predict the motivational dynamics of in iduals facing extreme events. The model demonstrates how the imposed vulnerability of unexpected harmful events (e.g., natural disasters, accidents, serious illness) creates a second form of vulnerability for needy in iduals when they rely on and cooperate with little-known others offering rescue and care. Trust in the relationship between a care provider and a care receiver is used as the link between two types of vulnerability to articulate the process through which in iduals assess their care provider's trustworthiness. This article outlines an approach for future tests of the model's hypotheses and discusses practical implications of the model for improving public services that depend on cooperation from in iduals in extreme need as well as its theoretical contributions.
Vulnerability in the Narratives of Patients and their Carers: Studies of Colorectal Cancer
Publisher: SAGE Publications
Date: 10-2000
DOI: 10.1177/136345930000400405
Abstract: Vulnerability is susceptibility to any kind of harm, whether physical, moral or spiritual, at the hands of an agent or agency. It is related to disempowerment and loss of autonomy. It is also a relational category that appears repeatedly in the narratives of colorectal cancer patients and their carers. Although one conventionally associates vulnerability with being ill and needing health care, the practice of health care has its own vulnerabilities that emerge as important in the biographies of health care workers. Vulnerability needs to be recognized and negotiated in health care transactions. This article examines a process of ‘reading-for’ vulnerability, and suggests a classification of vulnerability, at least as it appears in the narratives of cancer patients and their carers. Methods of managing vulnerability are also examined and categorized. Reading for vulnerability brings insight into an important aspect of the health care process. Recognition of its importance should translate into changes in medical education and patient information.
Imagining and Preparing for the Aftermath of the COVID-19 Pandemic: A Justification for Taking Caring Responsibilities into Consideration when Allocating Scarce Resources
Publisher: Springer Science and Business Media LLC
Date: 09-11-2020
Beyond rhetoric in debates about the Ethics of marketing prescription medicines to consumers: The importance of Vulnerability in people, situations, and relationships
Publisher: Informa UK Limited
Date: 06-05-2010
Managing ethical issues in patient care and the need for clinical ethics support
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14034
Abstract: Objective To investigate the range, frequency and management of ethical issues encountered by clinicians working in hospitals in New South Wales (NSW), Australia. Methods A cross-sectional survey was conducted of a convenience s le of 104 medical, nursing and allied health professionals in two NSW hospitals. Results Some respondents did not provide data for some questions, therefore the denominator is less than 105 for some items. Sixty-two (62/104 60%) respondents reported occasionally to often having ethical concerns. Forty-six (46/105 44%) reported often to occasionally having legal concerns. The three most common responses to concerns were: talking to colleagues (96/105 91%) raising the issue in a group forum (68/105 65%) and consulting a relevant guideline (64/105 61%). Most respondents were highly (65/99 66%) or moderately (33/99 33%) satisfied with the ethical environment of the hospital. Twenty-two (22/98 22%) were highly satisfied with the ethical environment of their department and 74 (74/98 76%) were moderately satisfied. Most (72/105 69%) respondents indicated that additional support in dealing with ethical issues would be helpful. Conclusion Clinicians reported frequently experiencing ethical and legal uncertainty and concern. They usually managed this by talking with colleagues. Although this approach was considered adequate, and the ethics of their hospital was reported to be satisfactory, most respondents indicated that additional assistance with ethical and legal concerns would be helpful. Clinical ethics support should be a priority of public hospitals in NSW and elsewhere in Australia. What is known about the topic? Clinicians working in hospitals in the US, Canada and UK have access to ethics expertise to help them manage ethical issues that arise in patient care. How Australian clinicians currently manage the ethical issues they face has not been investigated. What does this paper add? This paper describes the types of ethical issues faced by Australian clinicians, how they manage these issues and whether they think ethics support would be helpful. What are the implications for practitioners? Clinicians frequently encounter ethically and legally difficult decisions and want additional ethics support. Helping clinicians to provide ethically sound patient care should be a priority of public hospitals in NSW and elsewhere in Australia.
The quality of Australian health journalism is important for public health
Publisher: AMPCo
Date: 10-2013
DOI: 10.5694/MJA12.11426
You Have to Make Something of All That Rubbish, Do You? An Empirical Investigation of the Social Process of Qualitative Research
Publisher: SAGE Publications
Date: 09-2008
Abstract: In this article, we examine participants' talk about qualitative research. We provide empirical support for post-structural theorizations of the interview and propose three distinct but related dimensions of qualitative research: emotional, purposive/relational, and epistemic/ontological. In this study, participants often became upset but constructed participation as enjoyable and cathartic. The purpose of participation was to assist the communities to which one belonged. Participation was an active, reflexive practice that reconstructed the self and changed knowledge about one's self. This latter epistemic/ontological dimension of participation appeared to be the most compelling for participants, but it is also the hardest to observe, with implications for how we consider the costs and benefits of participation. We suggest two practical measures for researchers and institutional review boards to consider in light of our findings: routinely asking questions about the research experience in qualitative studies and reformulating patient information statements to particularize them to qualitative research.
Australia's first religiously affiliated medical school
Publisher: AMPCo
Date: 09-2005
DOI: 10.5694/J.1326-5377.2005.TB07069.X
Abstract: Recently, we published an outline of concerns about the opening of Australia's first religiously affiliated medical school. A litany of spirited responses followed.
The work of living with a rare cancer: multiple myeloma
Publisher: Wiley
Date: 13-04-2014
DOI: 10.1111/JAN.12430
Abstract: To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma. Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal. Although it remains incurable, people diagnosed with it are living longer on average, largely due to new treatments, some of which have onerous side effects. Prospective descriptive study. A series of 47 in-depth interviews were conducted at 6-12 month intervals over 18 months in 2008-2010 with 10 long-term survivors of myeloma and their primary support person. Interviews were analysed using the constant comparative method (Grounded Theory). To adapt to the effects of both the disease and ongoing medical treatments, participants undertook extensive 'illness work'. Most of this work fell into two broad categories. Risk work aimed to mitigate risks to the well-being of both the person with myeloma and his/her carer. Emotion work aimed to manage the feelings of self and others in a protracted cycle of remission and relapse. The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.
Discourse in different voices: reconciling N=1 and N=many
Publisher: Elsevier BV
Date: 10-2002
DOI: 10.1016/S0277-9536(01)00264-7
Abstract: When groups are convened to discuss the making of policy, people are chosen to represent particular interests because they have relevant experience. Different stakeholders, however, may use differing discourses, and particular discourses may be privileged in particular contexts. This means that important contributions to the discussion may not be reflected in final reports. Discursive incommensurability is particularly seen when in idual, personal experience is presented in meetings where quantification or "numbers talk" is privileged. While pooled personal experience may carry some weight in such a context, in idual anecdote does not. The inclusion of 'consumers' in policy making groups may result in their dysempowerment. Their presence promises that they will have influence, but their voices disappear from the final document. The promise of empowerment is not realised. Dysempowerment may translate into empowerment with time, as it has done with feminism and the HIV/AIDS lobby. In order to speed the process, we suggest some practical means whereby mixed discourses may be generated and monitored. For constructive interchange, each party to the discourse needs to express the interests and arguments relevant to the group he or she represents. Supporting this principle of representation are principles of implicature and radical respect. Implicature is the act of implying what is relevant to others involved in the discourse. Radical respect is a fundamental and foundational respect for others in their roles as representatives of stakeholders with legitimate interests in the topic of the discourse.
Against camps
Publisher: Springer Science and Business Media LLC
Date: 27-05-2019
Face, honor and dignity in the context of colon cancer
Publisher: Springer Science and Business Media LLC
Date: 2000
Use of systematic reviews of randomised trials by Australian neonatologists and obstetricians
Publisher: Wiley
Date: 03-1998
DOI: 10.5694/J.1326-5377.1998.TB140159.X
Abstract: To determine what proportion of Australian neonatologists and obstetricians report using systematic reviews of randomised trials. Cross-sectional survey using structured telephone interviews. Australian clinical practice in 1995. 103 of the 104 neonatologists in Australia (defined as clinicians holding a position in a neonatal intensive care unit) a random s le of 145 members of the Royal Australian College of Obstetricians and Gynaecologists currently practising in Australia. Information sources used in clinical practice reported awareness of, access to and use of systematic reviews, and consequent practice changes. Response rates were 95% (neonatologists) and 87% (obstetricians) 71 neonatologists (72%) and 55 obstetricians (44%) reported using systematic reviews, primarily for in idual patient care. Databases of systematic reviews were used with a median frequency of once per month. Among neonatologists, systematic reviews were used more commonly by those who were familiar with computers, attended professional meetings, and had authored research papers. Among obstetricians, they were used more commonly by those who were familiar with computers, had less than 10 years' clinical experience, attended more deliveries, and were full-time staff specialists in public hospitals. Of neonatologists who reported using systematic reviews, 58% attributed some practice change to this use. For obstetricians, the corresponding figure was 80%. There is evidence that Australian neonatologists and obstetricians use systematic reviews and modify their practice accordingly. Dissemination efforts can benefit from knowledge of factors that predict use of systematic reviews.
Mind the gap: An empirical study of post‐trial access in HIV biomedical prevention trials
Publisher: Wiley
Date: 08-11-2013
DOI: 10.1111/DEWB.12039
Abstract: The principle of providing post-trial access for research participants to successful products of that research is widely accepted and has been enshrined in various declarations and guidelines. While recent ethical guidelines recognise that the responsibility to provide post-trial access extends to sponsors, regulators and government bodies as well as to researchers, it is the researchers who have the direct duty of care to participants. Researchers may thus need to act as advocates for trial participants, especially where government bodies, sponsors, and regulatory bodies have complex interests vested in decisions about whether or not new interventions are made available, how, and to whom. This paper provides an empirical account of post-trial access in the context of HIV prevention research. It describes both access to the successful products of research and the provision antiretroviral drugs for trial participants who acquire HIV. First, we provide evidence that, in the current system, there is considerable variation in the duration and timeliness of access. We then argue that by analysing the difficulties faced by researchers to this point, and their efforts to meet this obligation, much can be learned about how to secure post-trial access in HIV biomedical preventions trials. While researchers alone have a limited obligation, their advocacy on behalf of trial participants may be necessary to call the other parties to account.
Survey of practices and policies relating to the use of complementary and alternative medicines and therapies in New South Wales cancer services
Publisher: Wiley
Date: 2013
DOI: 10.1111/IMJ.12010
Abstract: To examine policies and practices relating to the provision, prescription and monitoring of complementary and alternative medicine and therapies (CAM) in conventional cancer services in NSW. Self-administered questionnaire sent to directors of all 65 eligible cancer services in NSW in 2009. Forty-three services responded to the survey (response rate 66%). Only six (14%) services reported having formal policies about CAM. Most (n = 33, 77%) expected that patients would be asked about CAM use during their initial assessment. Eight services (19%) provided and/or prescribed CAM for patients, and most of these (n = 7) recorded details of CAM use in patients' records. Only four (9%) services permitted CAM practitioners from the community to attend inpatients, whereas 24 (56%) permitted inpatients to bring in their own CAM. Most of these services (n = 17) required medical approval for the use of CAM. Of the latter, most (n = 13) recorded the use of approved CAM, but only seven recorded use of unapproved CAM and only three refused permission to continue use of unapproved CAM. Most cancer services in NSW recognise potential CAM use by patients and expect medical staff to ask patients about their use of CAM. While few cancer services provided or prescribed CAM, over half permitted inpatients to bring their own CAM into hospital. There was little control over the use of CAM, however, and monitoring was lax. Given the wide usage of CAM by patients with cancer, this lack of control may compromise clinical outcomes, with potentially dangerous consequences.
Religious Perspectives on the Use of Psychopharmaceuticals as an Enhancement Technology
Publisher: Springer Science and Business Media LLC
Date: 20-08-2014
DOI: 10.1007/S10943-013-9761-7
Abstract: The use of psychopharmaceuticals as an enhancement technology has been the focus of attention in the bioethics literature. However, there has been little examination of the challenges that this practice creates for religious traditions that place importance on questions of being, authenticity, and identity. We asked expert commentators from six major world religions to consider the issues raised by psychopharmaceuticals as an enhancement technology. These commentaries reveal that in assessing the appropriate place of medical therapies, religious traditions, like secular perspectives, rely upon ideas about health and disease and about normal human behavior. But unlike secular perspectives, faith traditions explicitly concern themselves with ways in which medicine should or should not be used to live a "good life".
Establishing the role of pre-implantation genetic diagnosis with human leucocyte antigen typing: what place do ''saviour siblings'' have in paediatric transplantation?
Publisher: BMJ
Date: 06-08-2009
Abstract: Not all children in need of a haematopoietic stem cell transplant have a suitable relative or unrelated donor available. Recently, in vitro fertilisation (IVF) with pre-implantation genetic diagnosis (PGD) for human leucocyte antigen (HLA) tissue typing has been used to selectively transfer an IVF embryo in order to produce a child who may provide umbilical cord blood for transplantation to an ill sibling. Such children are sometimes called "saviour siblings". To examine the published clinical and epidemiological evidence relevant to the use of this technology, with the aim of clarifying those situations where IVF and PGD for HLA typing should be discussed with parents of an ill child. A critical analysis of published literature on comparative studies of umbilical cord blood versus other sources of stem cells for transplantation comparative studies of matched unrelated donor versus matched related donor transplantation and the likelihood of finding an unrelated stem cell donor. IVF and PGD for HLA typing is only applicable when transplantation is non-urgent and parents are of reproductive age. Discussions regarding this technology may be appropriate where no suitable related or unrelated donor is available for a child requiring a transplant, or where no suitable related donor is available and transplantation is only likely to be entertained with a matched sibling donor. Discussion may also be considered in the management of any child lacking a matched related donor who requires a non-urgent transplant or may require a transplant in the future.
Religious Perspectives on Human Suffering: Implications for Medicine and Bioethics
Publisher: Springer Science and Business Media LLC
Date: 14-02-2016
DOI: 10.1007/S10943-015-0014-9
Abstract: The prevention and relief of suffering has long been a core medical concern. But while this is a laudable goal, some question whether medicine can, or should, aim for a world without pain, sadness, anxiety, despair or uncertainty. To explore these issues, we invited experts from six of the world's major faith traditions to address the following question. Is there value in suffering? And is something lost in the prevention and/or relief of suffering? While each of the perspectives provided maintains that suffering should be alleviated and that medicine's proper role is to prevent and relieve suffering by ethical means, it is also apparent that questions regarding the meaning and value of suffering are beyond the realm of medicine. These perspectives suggest that medicine and bioethics have much to gain from respectful consideration of religious discourse surrounding suffering.
Approval and Disapproval in the Narratives of Colorectal Cancer Patients and Their Carers
Publisher: SAGE Publications
Date: 10-1999
DOI: 10.1177/136345939900300406
Abstract: In examining the narratives of colorectal cancer patients and their carers, we have noted that approval and disapproval are expressed in many ways that reflect their importance in the process of medical care. When people construct free narratives that trace important segments of their biographies, they emphasize the approval and disapproval which others express for their choices, actions and moral qualities. They also want their own approval or disapproval for others to count in significant ways. Approval is widely recognized for its importance in human development, and it is generally a positive force. The seeking of inappropriate approval, however, may have unfortunate consequences. For health professionals, for ex le, conflicts may arise when they come to seek peer approval ahead of client approval, and when a career comes to matter more than the real social purposes for which the career is intended. Identification of the conflicts that this ided loyalty may induce helps in understanding some of the underlying issues which narratives raise. It is possible to construct a formal structure that can be used to examine the part which the seeking and receiving of approval play in the values expressed in medical narratives generally. Similar and equally powerful meanings attach to disapproval.
The perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer
Publisher: Wiley
Date: 04-02-2011
DOI: 10.1002/PON.1909
Abstract: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of 'normal' others, for normalising information and information that facilitated upward identifications. We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis-in particular, their status as a member of a 'vanishing cohort'-and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease.
Narrative Research in Health and Illness
Publisher: BMJ
Date: 02-06-2005
An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19
Publisher: Springer Science and Business Media LLC
Date: 25-08-2020
Patient and family education in HSCT: improving awareness of respiratory virus infection and influenza vaccination. A descriptive study and brief intervention
Publisher: Springer Science and Business Media LLC
Date: 17-08-2009
DOI: 10.1038/BMT.2009.209
Abstract: To prevent respiratory virus (RV) infection after hematopoietic SCT (HSCT), patient and household members are advised to have annual influenza vaccinations and avoid symptomatic contacts. The object of this study was to measure and increase patient/household awareness of RV infection and preventive measures. We used a self-administered questionnaire before/after a 5-min educational module (2006-2007) and interviews with HSCT patients (2005-2007). The subjects were patients and their households attending pre-HSCT education in an Australian HSCT Unit. Outcome measures were awareness of RV infection post-HSCT and effective prevention strategies household influenza vaccination on admission for HSCT. In all, 139 out of 205 (68%) participants completed both questionnaires. Baseline knowledge of RV infection risk was high knowledge of prevention was low. Intervention increased awareness that influenza post-HSCT could be fatal or require intensive care (68-87%, P=0.003), knowledge of effective prevention strategies (41-78%, P<0.0001) including vaccination (11-58%, P<0.0001), and belief among family/friends (but not patients) that household vaccination reduces influenza risk post-HSCT (57-97%, P<0.0001 and 76-81%, P=0.2, respectively). Household vaccination at HSCT admission was 71% for attenders and 30% for non-participants (RR 2.38, 95% confidence interval (CI) 1.49-3.80, P<0.0001). We concluded that patient and family pre-HSCT education increases awareness of RV prevention strategies and household influenza vaccination.
Part of the fabric and mostly right: an ethnography of ethics in clinical practice
Publisher: Wiley
Date: 06-2015
DOI: 10.5694/MJA14.00208
Abstract: To describe how ethics is practised in a health care setting, and to ascertain whether there was interest in establishing clinical ethics support services. Observations and interviews undertaken between April and November 2012 in a large NSW urban hospital with newborn care, maternity and oncology departments and analysed by coding and categorising the data. Key themes in the participants' attitudes to professional ethics were identified. Ethics is not typically an explicit feature of clinical deliberations, and clinicians tend to apply basic ethical principles when ethical problems are identified. They also discuss difficult decisions with colleagues, and try to resolve ethical differences by discussion. Participants judged the ethics of clinical practice to be "mostly right", primarily because ethics is "part of the fabric" of everyday clinical work that aspires to "optimising care". Nevertheless, most clinicians would welcome ethics support because ethics is integral to health care practice, is not always "done well", and may be the source of conflict. Ethics is very much a part of the fabric of clinical practice, and the ethical challenges that arise in patient care in this particular setting are generally managed adequately. However, many clinicians have concerns about the ethical aspects of some practices and decisions, and believe that access to expert ethics support would be useful. Helping clinicians to provide ethically sound patient care should be a priority for health care providers across Australia.
Liminality: a major category of the experience of cancer illness
Publisher: Elsevier BV
Date: 11-1998
DOI: 10.1016/S0277-9536(98)00248-2
Abstract: Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. In idual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call "liminality". We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient's life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer (and other serious illnesses) seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.
Beyond evidence: reappraising use of CA‐125 as post‐therapy surveillance for ovarian cancer
Publisher: AMPCo
Date: 04-2012
DOI: 10.5694/MJA11.10889
Clinical Ethics Support in Contemporary Health Care
Publisher: Oxford University Press
Date: 02-06-2016
DOI: 10.1093/OXFORDHB/9780198705109.013.13
Abstract: This chapter discusses clinical ethics support services (CES Services), the development of which has arisen to help respond to ethical issues arising in health care settings. CES services are comprised of an in idual or group, usually in an organization, who can provide a suite of services to support all stakeholders in identifying and managing ethical issues they face. While there is a degree of consensus about the potential value of such services, they are also the focus of ongoing theoretical, methodological and political debates. The aim of this chapter is to provide health care managers with an account of how and why CES services are becoming a part of the contemporary organizational landscape of health care, and describe the concerns that bioethicists and others have raised regarding their role, function and dissemination.
Survivorship and discourses of identity
Publisher: Wiley
Date: 03-2002
DOI: 10.1002/PON.549
Abstract: Personal identity is self-evidently important to us all. Identity is a philosophically complex subject, but there is some agreement that memory, embodiment and continuity are essential components. The sense of memory includes 'future memory', the kind of memory we would like to construct for ourselves as our lives proceed. While the sense of personal identity is internal to the in idual, a sense of that person's identity exists in the minds of others. Extreme experiences threaten the element of continuity, because they may bring bodily changes as well as cognitive changes that challenge central values. Restoring or preserving continuity is a major task for survivors. The ways in which people experience discontinuity because of cancer illness, and the ways in which they manage this experience emerges from the narratives of the survivors of cancer and in the narratives of health care workers who look after them. People manage discontinuity by reference to stable 'anchor points' in their beliefs and values by re-constructing versions of their pre-experience identities, drawing on past memory and finding ways to preserve a continuity between past memory, present experience and constructions of the future by using the experience to develop established facets of identity and by imbuing the experience with meaning and recognising the enlarged identity made possible by survival. Those who cannot achieve a sense of continuity may feel alienated from themselves, their friends and family. All these methods of management may be used by one person to negotiate the post-experience identity in its different social interactions. The experience of the survivor can be further understood by recognising the challenge posed by extreme experience to the sense of continuity of both embodied self and memory. A satisfactory discourse of survival has yet to enter the public domain. This lack adds to the burdens of survivors, including those who have survived cancer.
What Makes a Journal an International Journal?
Publisher: Springer Science and Business Media LLC
Date: 27-02-2007
Power and Control in Interactions Between Journalists and Health-Related Industries: The View From Industry
Publisher: Springer Science and Business Media LLC
Date: 06-05-2014
DOI: 10.1007/S11673-014-9518-3
Abstract: The mass media is a major source of health information for the public, and as such the quality and independence of health news reporting is an important concern. Concerns have been expressed that journalists reporting on health are increasingly dependent on their sources--including representatives of industries responsible for manufacturing health-related products--for story ideas and content. Many critics perceive an imbalance of power between journalists and industry sources, with industry being in a position of relative power, however the empirical evidence to support this view is limited. The analysis presented here--which is part of a larger study of industry-journalist relationships--draws on in-depth, semi-structured interviews with representatives of health-related industries in Australia to inductively examine their perceptions of power relations between industry and journalists. Participants painted a picture in which journalists, rather than themselves, were in a position to control the nature, extent, and outcome of their interactions with industry sources. Our results resonate with the concept of "mediatisation" as it has been applied in the domain of political reporting. It appears that, from the perspective of industry representatives, the imposition of media logic on health-related industries may inappropriately influence the information that the public receives about health-related products.
Widening the debate about conflict of interest: Addressing relationships between journalists and the pharmaceutical industry
Publisher: BMJ
Date: 19-03-2012
DOI: 10.1136/MEDETHICS-2011-100264
Abstract: The phone-hacking scandal that led to the closure of the News of the World newspaper in Britain has prompted international debate about media practices and regulation. It is timely to broaden the discussion about journalistic ethics and conduct to include consideration of the impact of media practices upon the population's health. Many commercial organisations cultivate relationships with journalists and news organisations with the aim of influencing the content of health-related news and information communicated through the media. Given the significant influence of the media on the health of in iduals and populations, we should be alert to the potential impact of industry-journalist relationships on health care, health policy and public health. The approach taken by the medical profession to its interactions with the pharmaceutical industry provides a useful model for management of industry influence.
Direct-to-consumer advertising under the radar: The need for realistic drugs policy in Australia
Publisher: Wiley
Date: 27-03-2007
DOI: 10.1111/J.1445-5994.2006.01298.X
Abstract: Direct-to-consumer advertising of prescription medicines (DTCA-PM) is currently banned in Australia. DTCA-PM is thought to increase health-care costs by increasing demand for drugs that are both expensive and potentially harmful. However, DTCA-PM is occurring in Australia despite the current prohibition. We argue that successful regulation of the practice has been undermined as a result of changes brought about by the ongoing communications revolution, the increasing centrality of patient choice in medical decision-making and the impossibility of drawing and maintaining a sharp distinction between information and advertising. The prohibition is further threatened by recent international trade agreements. These factors make DTCA-PM inevitable and legislative and professional bodies need to acknowledge this to create a more effective health-care policy.
Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer
Publisher: Elsevier BV
Date: 11-2010
DOI: 10.1016/J.SOCSCIMED.2010.07.033
Abstract: Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that--once it has relapsed--will certainly kill them in the near future.
Should we be concerned about direct-to-consumer advertising of prescription drugs?
Publisher: Springer Science and Business Media LLC
Date: 08-2005
DOI: 10.1007/BF02448842
Multiplying Health Gains: the critical role of capacity-building within health promotion programs
Publisher: Elsevier BV
Date: 1997
DOI: 10.1016/S0168-8510(96)00847-0
Abstract: Health outcomes in populations are the product of three factors: (1) the size of effect of the intervention (2) the reach or penetration of an intervention into a population and (3) the sustainability of the effect. The last factor is crucial. In recent years, many health promotion workers have moved the focus of their efforts away from the immediate population group or environment of interest towards making other health workers and other organisations responsible for, and more capable of, conducting health promotion programs, maintaining those programs and initiating others. 'Capacity-building' by health promotion workers to enhance the capacity of the system to prolong and multiply health effects thus represents a 'value added' dimension to the health outcomes offered by any particular health promotion program. The value of this activity will become apparent in the long term, with methods to detect multiple types of health outcomes. But in the short term its value will be difficult to assess unless we devise specific measures to detect it. At present the term 'capacity-building' is conceptualised and assessed in different ways in the health promotion literature. Development of reliable indicators of capacity-building which could be used both in program planning and in program evaluation will need to take this into account. Such work will provide health-decision makers with information about program potential at the conclusion of the funding period, which could be factored into resource allocation decisions, in addition to the usual information about a program's impact on health outcomes. By program potential, we mean ability to reap greater and wider health gains.
Response—The Road Less Travelled: Why did Miles Little Turn to Qualitative Research and Where Did This Lead?
Publisher: Springer Science and Business Media LLC
Date: 03-2022
Contextualising Professional Ethics: The Impact of the Prison Context on the Practices and Norms of Health Care Practitioners
Publisher: Springer Science and Business Media LLC
Date: 11-07-2014
DOI: 10.1007/S11673-014-9558-8
Abstract: Health care is provided in many contexts-not just hospitals, clinics, and community health settings. Different institutional settings may significantly influence the design and delivery of health care and the ethical obligations and practices of health care practitioners working within them. This is particularly true in institutions that are established to constrain freedom, ensure security and authority, and restrict movement and choice. We describe the results of a qualitative study of the experiences of doctors and nurses working within two women's prisons in the state of New South Wales (NSW), Australia. Their accounts make clear how the provision and ethics of health care may be compromised by the physical design of the prison, the institutional policies and practices restricting movement of prisoners and practitioners, the focus on maintaining control and security, and the very purpose of the prison and prison system itself. The results of this study make clear the impact that context has on professional practice and illustrate the importance of sociology and anthropology to bioethics and to the development of a more nuanced account of professional ethics.
Religious perspectives on withdrawal of treatment from patients with multiple organ failure
Publisher: AMPCo
Date: 12-2005
DOI: 10.5694/J.1326-5377.2005.TB00053.X
Abstract: Religious or spiritual values often influence health care decision-making by patients and their families, particularly in times of crisis. Though religious values might seem to be irrelevant where continuing treatment is judged to be "futile", such clinical assessments should instead serve to open a dialogue about values and beliefs. The six major religious traditions in Australia have some similar values and principles about death and provision of care for the dying, but differ in their processes of ethical reasoning, cosmologies, and key moral concepts. Engaging with religious traditions on the common ground of basic values (such as human dignity, care, the sacredness of human life, non-violence, compassion, and selflessness) promotes negotiation of the manner in which care is provided, even where conflicts exist.
What's in a name? Searching the web for information about ethically contentious and emerging healthcare technologies
Publisher: Informa UK Limited
Date: 05-2009
Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships: An empirical ethical study
Publisher: BMJ
Date: 06-03-2015
DOI: 10.1136/MEDETHICS-2013-101790
Abstract: Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public's health-related expectations and behaviour. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders' views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and 2 focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholders and have their intended effect on the quality of journalism and the actions of news consumers.
Rules of engagement: Journalists' attitudes to industry influence in health news reporting
Publisher: SAGE Publications
Date: 24-03-2015
Abstract: Health-related industries use a variety of methods to influence health news, including the formation and maintenance of direct relationships with journalists. These interactions have the potential to subvert news reporting such that it comes to serve the interests of industry in promoting their products, rather than the public interest in critical and accurate news and information. Here, we report the findings of qualitative interviews conducted in Sydney, Australia, in which we examined journalists’ experiences of, and attitudes towards, their relationships with health-related industries. Participants’ belief in their ability to manage industry influence and their perceptions of what it means to be unduly influenced by industry raise important concerns relating to the psychology of influence and the realities of power relationships between industry and journalists. The analysis also indicates ways in which concerned academics and working journalists might establish more fruitful dialogue regarding the role of industry in health-related news and the extent to which increased regulation of journalist–industry relationships might be needed.
Religious perspectives on embryo donation and research
Publisher: SAGE Publications
Date: 16-02-2010
Abstract: The success of assisted reproductive technologies (ARTs) worldwide has led to an accumulation of frozen embryos that are surplus to the reproductive needs of those for whom they were created. In these situations, couples must decide whether to discard them or donate them for scientific research or for use by other infertile couples. While legislation and regulation may limit the decisions that couples make, their decisions are often shaped by their religious beliefs. Unfortunately, health professionals, scientists and policy-makers are often unaware of the way in which faith traditions view ART and decisions concerning the ‘fate’ of surplus embryos. In this paper scholars representing six major religious traditions provide a commentary on a hypothetical case concerning the donation or destruction of excess ART embryos. These commentaries provide a rich account of religious perspectives on the status of the human embryo and an insight into the relevance of faith to health and policy decisions, particularly in reproductive medicine, ART and embryo research.
Introduction to J.R. Martin’s “Negotiating Values: Narrative and Exposition”
Publisher: Springer Science and Business Media LLC
Date: 12-02-2008
‘Right’ way to ‘do’ illness? Thinking critically about positive thinking
Publisher: Wiley
Date: 04-09-2006
DOI: 10.1111/J.1445-5994.2006.01194.X
Abstract: Exhortations to 'be positive' accompany many situations in life, either as a general injunction or in difficult situations where people are facing pressure or adversity. It is particularly evident in health care, where positive thinking has become an aspect of the way people are expected to 'do' illness in developed society. Positive thinking is framed both as a moral injunction and as a central belief system. It is thought to help patients cope emotionally with illness and to provide a biological benefit. Yet, the meanings, expectations and outcomes of positive thinking are infrequently questioned and the risks of positive thinking are rarely examined. We outline some of the latter and suggest that health professionals should exercise caution in both 'prescribing' positive thinking and in responding to patients and carers whose belief systems and feelings of obligation rest on it.
Trouble in the Gap: A Bioethical and Sociological Analysis of Informed Consent for High-Risk Medical Procedures
Publisher: Springer Science and Business Media LLC
Date: 04-01-2013
DOI: 10.1007/S11673-012-9414-7
Abstract: Concerns are frequently raised about the extent to which formal consent procedures actually lead to "informed" consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that "informed" consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness.
‘In this scenario, I do this, for these reasons’: narrative, genre and ethical reasoning in the clinic
Publisher: Elsevier BV
Date: 05-2004
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Special Research Initiatives - Grant ID: SR0354803
Start Date: 09-2004
End Date: 11-2004
Amount: $10,000.00
Funder: Australian Research Council
View Funded ActivityLinkage Projects - Grant ID: LP0883632
Start Date: 02-2009
End Date: 12-2014
Amount: $325,921.00
Funder: Australian Research Council
View Funded ActivitySpecial Research Initiatives - Grant ID: SR0354508
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End Date: 03-2005
Amount: $10,000.00
Funder: Australian Research Council
View Funded Activity