Collections of human tissue (biobanks) are thought to be an essential resource for biomedical res... more Collections of human tissue (biobanks) are thought to be an essential resource for biomedical research. Biobanks have, however, been a source of debate in both bioethics and sociology. In recent years this theorising has been supplemented with empirical research, including a significant body of qualitative research, into donors' experiences and attitudes. To date, this literature has not been synthesised. We report the findings of a review of qualitative literature regarding the ways in which lay people construct and experience the process of donation to biobanks. Our aim was to determine what the qualitative research literature tells us about the process of donating to biobanks, and how this can enrich existing insights from quantitative research and from theoretical sociology and bioethics. Qualitative research shows that donation to biobanks is a complex process shaped by donors' embeddedness in a number of social contexts; by complex relations of trust in biomedicine; and by the ambiguous status of human tissue. While these findings are theoretically and practically useful, current sociological theorising is very general. A more detailed and nuanced 'sociology of biobanking' is needed, and this might be best achieved by exploring specific theoretical questions in a variety of biobanking settings.
Researchers studying health care decision making generally focus on the interaction that unfolds ... more Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the example 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 individuals 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.
The phone-hacking scandal that led to the closure of the News of the World newspaper in Britain h... more 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 individuals 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.
Bioethicists and policymakers are increasingly concerned about the effects on health journalism o... more 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.
Health industries attempt to influence the public through the news media and through their relati... more Health industries attempt to influence the public through the news media and through their relationships with expert academics and opinion leaders. This study reports journalists' perceptions of their professional roles and responsibilities regarding the relationships between industry and academia and research results. Journalists believe that responsibility for the scientific validity of their reports rests with academics and systems of peer review. However, this approach fails to account for the extent of industry-academy interactions ...
Concerns are frequently raised about the extent to which formal consent procedures actually lead ... more 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.
International Journal of Health Care Quality Assurance, 2007
The purpose of this study is to evaluate the effects of a health system-wide safety improvement p... more The purpose of this study is to evaluate the effects of a health system-wide safety improvement program (SIP) three to four years after initial implementation. The study employs multi-methods studies involving questionnaire surveys, focus groups, in-depth interviews, observational work, ethnographic studies, documentary analysis and literature reviews with regard to the state of New South Wales, Australia, where 90,000 health professionals, under the auspices of the Health Department, provide healthcare to a seven-million population. After enrolling many participants from various groups, the measurements included: numbers of staff trained and training quality; support for SIP; clinicians' reports of safety skills acquired, work practices changed and barriers to progress; RCAs undertaken; observation of functioning of teams; committees initiated and staff appointed to deal with adverse events; documentation and computer records of reports; and peak-level responses to adverse events. A cohort of 4 per cent of the state's health professionals has been trained and now applies safety skills and conducts RCAs. These and other senior professionals strongly support SIP, though many think further culture change is required if its benefits are to be more fully achieved and sustained. Improved information-handling systems have been adopted. Systems for reporting adverse incidents and conducting RCAs have been instituted, which are co-ordinated by NSW Health. When the appropriate structures, educational activities and systems are made available in the form of an SIP, measurable systems change might be introduced, as suggested by observations of the attitudes and behaviours of health practitioners and the increased reporting of, and action about, adverse events. Few studies into health systems change employ wide-ranging research methods and metrics. This study helps to fill this gap.
... Claire [nurse]: The last meeting was quite amazing, because to start with, there were no doct... more ... Claire [nurse]: The last meeting was quite amazing, because to start with, there were no doctors there, and no one had any idea what to do. I just sat back. ... Claire [nurse]: It may not be something that is intentional, but I would think yes, you do lead. ...
The literature on paediatric acute-onset movement disorders is scattered. In a prospective cohort... more The literature on paediatric acute-onset movement disorders is scattered. In a prospective cohort of 52 children (21 male; age range 2mo-15y), the commonest were chorea, dystonia, tremor, myoclonus, and Parkinsonism in descending order of frequency. In this series of mainly previously well children with cryptogenic acute movement disorders, three groups were recognised: (1) Psychogenic disorders (n = 12), typically >10 years of age, more likely to be female and to have tremor and myoclonus (2) Inflammatory or autoimmune disorders (n = 22), including N-methyl-d-aspartate receptor encephalitis, opsoclonus-myoclonus, Sydenham chorea, systemic lupus erythematosus, acute necrotizing encephalopathy (which may be autosomal dominant), and other encephalitides and (3) Non-inflammatory disorders (n = 18), including drug-induced movement disorder, post-pump chorea, metabolic, e.g. glutaric aciduria, and vascular disease, e.g. moyamoya. Other important non-inflammatory movement disorders, typically seen in symptomatic children with underlying aetiologies such as trauma, severe cerebral palsy, epileptic encephalopathy, Down syndrome and Rett syndrome, include dystonic posturing secondary to gastro-oesophageal reflux (Sandifer syndrome) and Paroxysmal Autonomic Instability with Dystonia (PAID) or autonomic 'storming'. Status dystonicus may present in children with known extrapyramidal disorders, such as cerebral palsy or during changes in management e.g. introduction or withdrawal of neuroleptic drugs or failure of intrathecal baclofen infusion; the main risk in terms of mortality is renal failure from rhabdomyolysis. Although the evidence base is weak, as many of the inflammatory/autoimmune conditions are treatable with steroids, immunoglobulin, plasmapheresis, or cyclophosphamide, it is important to make an early diagnosis where possible. Outcome in survivors is variable. Using illustrative case histories, this review draws attention to the practical difficulties in diagnosis and management of this important group of patients.
Communication <symbol unicode="0026" ascii=""/> Medicine, 2007
In this paper we argue that whiteboards in clinical settings play a hybrid role: communicating in... more In this paper we argue that whiteboards in clinical settings play a hybrid role: communicating inter- and intraprofessional directives, mediating professional tensions, and mitigating potentially face-threatening acts. The data upon which this paper is based emanate from two independently conducted ethnographic studies: the first explored a range of nurse-nurse and nurse-doctor communication practices in operating rooms, while the second explored work routines and communication methods in oncology wards. Data collection included fieldwork using observations, interviews assisted by photographic methods, and in the first study, a personal diary. A deconstructive analysis was independently undertaken. As a communication method, the use of whiteboards in clinical settings provided a focal point for the coordination of clinical work activities and for the dissemination of information to large groups of people. Whiteboards were a conduit for potentially face-threatening information in that they facilitated the policing and disciplining of staff, while distancing communicators from one another. We conclude that whiteboards are &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;pseudo-synchronous&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; in nature, enabling &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;communication at a distance&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;. In doing so, whiteboards may facilitate and economize clinical communication but they also perpetuate the invisibility of nurses&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; contribution to ensuring safe care, and they mask the symbolic violence that is committed within and between health professionals.
Researchers studying health care decision making generally focus on the interaction that unfolds ... more Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the example 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 ...
Clinical directorate service structures (CDs) have been widely implemented in acute settings in t... more Clinical directorate service structures (CDs) have been widely implemented in acute settings in the belief that they will enhance efficiency and patient care by bringing teams together and involving clinicians in management. We argue that the achievement of such goals depends not only on changing its formalized structural arrangements but also the culture of the organisation concerned. We conducted comparative observational studies and questionnaire surveys of two large Australian teaching hospitals similar in size, role and CD structure. Martin&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s conceptualization of culture in terms of integration, differentiation and fragmentation was applied in the analysis of the data. The ethnographic work revealed that compared to Metropolitan Hospital, Royal Hospital was better supported and more favourably viewed by its staff across six categories identified in both settings: leadership, structure, communication, change, finance and human resource management. Royal staff were more optimistic about their organisation&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s ability to meet future challenges. The surveys revealed that both staff groups preferred CD to traditional structures and shared some favourable and critical views of them. However Royal staff were significantly more positive, reporting many more benefits from CDs e.g. improved working relations, greater accountability and efficiency, better cost management, more devolvement of management to clinicians and a hospital more strategically placed and patient focused. Metropolitan staff were more likely to claim that CDs failed to solve problems and created a range of others including disunity and poor working relationships. There was greater consensus of views among Royal staff and more fragmentation at Metropolitan where both intensely held and uncertain attitudes were more common. The outcomes of implementing CDs in these two similar organisations differed considerably indicating the need to address cultural issues when introducing structural change. Martin&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s framework provides a useful antidote to researchers&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; tendency to focus at only one level of culture.
Collections of human tissue (biobanks) are thought to be an essential resource for biomedical res... more Collections of human tissue (biobanks) are thought to be an essential resource for biomedical research. Biobanks have, however, been a source of debate in both bioethics and sociology. In recent years this theorising has been supplemented with empirical research, including a significant body of qualitative research, into donors&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; experiences and attitudes. To date, this literature has not been synthesised. We report the findings of a review of qualitative literature regarding the ways in which lay people construct and experience the process of donation to biobanks. Our aim was to determine what the qualitative research literature tells us about the process of donating to biobanks, and how this can enrich existing insights from quantitative research and from theoretical sociology and bioethics. Qualitative research shows that donation to biobanks is a complex process shaped by donors&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; embeddedness in a number of social contexts; by complex relations of trust in biomedicine; and by the ambiguous status of human tissue. While these findings are theoretically and practically useful, current sociological theorising is very general. A more detailed and nuanced &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;sociology of biobanking&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; is needed, and this might be best achieved by exploring specific theoretical questions in a variety of biobanking settings.
Researchers studying health care decision making generally focus on the interaction that unfolds ... more Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the example of allogeneic bone marrow transplant, in this article we identify decision making to be a relational process concurrently underpinned by patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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 individuals enter through the doorway of the consultation room and become &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;patients,&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; 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 &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;crowded rooms&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; of decision making.
The phone-hacking scandal that led to the closure of the News of the World newspaper in Britain h... more 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;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 individuals 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.
Bioethicists and policymakers are increasingly concerned about the effects on health journalism o... more 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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.
Health industries attempt to influence the public through the news media and through their relati... more Health industries attempt to influence the public through the news media and through their relationships with expert academics and opinion leaders. This study reports journalists&amp;amp;amp;#x27; perceptions of their professional roles and responsibilities regarding the relationships between industry and academia and research results. Journalists believe that responsibility for the scientific validity of their reports rests with academics and systems of peer review. However, this approach fails to account for the extent of industry-academy interactions ...
Concerns are frequently raised about the extent to which formal consent procedures actually lead ... more Concerns are frequently raised about the extent to which formal consent procedures actually lead to &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;informed&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; 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 &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;informed&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness.
International Journal of Health Care Quality Assurance, 2007
The purpose of this study is to evaluate the effects of a health system-wide safety improvement p... more The purpose of this study is to evaluate the effects of a health system-wide safety improvement program (SIP) three to four years after initial implementation. The study employs multi-methods studies involving questionnaire surveys, focus groups, in-depth interviews, observational work, ethnographic studies, documentary analysis and literature reviews with regard to the state of New South Wales, Australia, where 90,000 health professionals, under the auspices of the Health Department, provide healthcare to a seven-million population. After enrolling many participants from various groups, the measurements included: numbers of staff trained and training quality; support for SIP; clinicians&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; reports of safety skills acquired, work practices changed and barriers to progress; RCAs undertaken; observation of functioning of teams; committees initiated and staff appointed to deal with adverse events; documentation and computer records of reports; and peak-level responses to adverse events. A cohort of 4 per cent of the state&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s health professionals has been trained and now applies safety skills and conducts RCAs. These and other senior professionals strongly support SIP, though many think further culture change is required if its benefits are to be more fully achieved and sustained. Improved information-handling systems have been adopted. Systems for reporting adverse incidents and conducting RCAs have been instituted, which are co-ordinated by NSW Health. When the appropriate structures, educational activities and systems are made available in the form of an SIP, measurable systems change might be introduced, as suggested by observations of the attitudes and behaviours of health practitioners and the increased reporting of, and action about, adverse events. Few studies into health systems change employ wide-ranging research methods and metrics. This study helps to fill this gap.
... Claire [nurse]: The last meeting was quite amazing, because to start with, there were no doct... more ... Claire [nurse]: The last meeting was quite amazing, because to start with, there were no doctors there, and no one had any idea what to do. I just sat back. ... Claire [nurse]: It may not be something that is intentional, but I would think yes, you do lead. ...
The literature on paediatric acute-onset movement disorders is scattered. In a prospective cohort... more The literature on paediatric acute-onset movement disorders is scattered. In a prospective cohort of 52 children (21 male; age range 2mo-15y), the commonest were chorea, dystonia, tremor, myoclonus, and Parkinsonism in descending order of frequency. In this series of mainly previously well children with cryptogenic acute movement disorders, three groups were recognised: (1) Psychogenic disorders (n = 12), typically &gt;10 years of age, more likely to be female and to have tremor and myoclonus (2) Inflammatory or autoimmune disorders (n = 22), including N-methyl-d-aspartate receptor encephalitis, opsoclonus-myoclonus, Sydenham chorea, systemic lupus erythematosus, acute necrotizing encephalopathy (which may be autosomal dominant), and other encephalitides and (3) Non-inflammatory disorders (n = 18), including drug-induced movement disorder, post-pump chorea, metabolic, e.g. glutaric aciduria, and vascular disease, e.g. moyamoya. Other important non-inflammatory movement disorders, typically seen in symptomatic children with underlying aetiologies such as trauma, severe cerebral palsy, epileptic encephalopathy, Down syndrome and Rett syndrome, include dystonic posturing secondary to gastro-oesophageal reflux (Sandifer syndrome) and Paroxysmal Autonomic Instability with Dystonia (PAID) or autonomic &#39;storming&#39;. Status dystonicus may present in children with known extrapyramidal disorders, such as cerebral palsy or during changes in management e.g. introduction or withdrawal of neuroleptic drugs or failure of intrathecal baclofen infusion; the main risk in terms of mortality is renal failure from rhabdomyolysis. Although the evidence base is weak, as many of the inflammatory/autoimmune conditions are treatable with steroids, immunoglobulin, plasmapheresis, or cyclophosphamide, it is important to make an early diagnosis where possible. Outcome in survivors is variable. Using illustrative case histories, this review draws attention to the practical difficulties in diagnosis and management of this important group of patients.
Communication <symbol unicode="0026" ascii=""/> Medicine, 2007
In this paper we argue that whiteboards in clinical settings play a hybrid role: communicating in... more In this paper we argue that whiteboards in clinical settings play a hybrid role: communicating inter- and intraprofessional directives, mediating professional tensions, and mitigating potentially face-threatening acts. The data upon which this paper is based emanate from two independently conducted ethnographic studies: the first explored a range of nurse-nurse and nurse-doctor communication practices in operating rooms, while the second explored work routines and communication methods in oncology wards. Data collection included fieldwork using observations, interviews assisted by photographic methods, and in the first study, a personal diary. A deconstructive analysis was independently undertaken. As a communication method, the use of whiteboards in clinical settings provided a focal point for the coordination of clinical work activities and for the dissemination of information to large groups of people. Whiteboards were a conduit for potentially face-threatening information in that they facilitated the policing and disciplining of staff, while distancing communicators from one another. We conclude that whiteboards are &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;pseudo-synchronous&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; in nature, enabling &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;communication at a distance&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;. In doing so, whiteboards may facilitate and economize clinical communication but they also perpetuate the invisibility of nurses&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; contribution to ensuring safe care, and they mask the symbolic violence that is committed within and between health professionals.
Researchers studying health care decision making generally focus on the interaction that unfolds ... more Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the example 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 ...
Clinical directorate service structures (CDs) have been widely implemented in acute settings in t... more Clinical directorate service structures (CDs) have been widely implemented in acute settings in the belief that they will enhance efficiency and patient care by bringing teams together and involving clinicians in management. We argue that the achievement of such goals depends not only on changing its formalized structural arrangements but also the culture of the organisation concerned. We conducted comparative observational studies and questionnaire surveys of two large Australian teaching hospitals similar in size, role and CD structure. Martin&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s conceptualization of culture in terms of integration, differentiation and fragmentation was applied in the analysis of the data. The ethnographic work revealed that compared to Metropolitan Hospital, Royal Hospital was better supported and more favourably viewed by its staff across six categories identified in both settings: leadership, structure, communication, change, finance and human resource management. Royal staff were more optimistic about their organisation&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s ability to meet future challenges. The surveys revealed that both staff groups preferred CD to traditional structures and shared some favourable and critical views of them. However Royal staff were significantly more positive, reporting many more benefits from CDs e.g. improved working relations, greater accountability and efficiency, better cost management, more devolvement of management to clinicians and a hospital more strategically placed and patient focused. Metropolitan staff were more likely to claim that CDs failed to solve problems and created a range of others including disunity and poor working relationships. There was greater consensus of views among Royal staff and more fragmentation at Metropolitan where both intensely held and uncertain attitudes were more common. The outcomes of implementing CDs in these two similar organisations differed considerably indicating the need to address cultural issues when introducing structural change. Martin&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s framework provides a useful antidote to researchers&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; tendency to focus at only one level of culture.
Uploads
Papers by Rowena Forsyth