Genetic sex: “a symbolic struggle against reality?” Exploring genetic and genomic knowledge in sex discourses

Genetic sex -the apparent fundamental biological cause of the two male and female human varieties- is a 20th century construct. Looking down the microscope, the stained chromosomes are concrete countable entities and lend themselves easily to genetic determinism. As the chromosome composition of a person is generally fixed at the time of conception, when a Y- or X-bearing sperm is united with the X-bearing egg, a person’s genetic sex is taken as permanent and unchanging throughout their life. Drawing upon gender theory as well as science and technology studies this thesis explores how our particular construction of the concept of ‘genetic sex’ relies on four features of biological sex (binary, fixed, spanning nature, and found throughout the body) and in addition proposes one unique feature, inheritance. The empirical research is based on an analysis of popular science books as well as two case studies of how genes relate to sex determination and development. The analysis of the metaphors used in these books and journal articles reveals how now, with genomic efforts to explore gene expression profiles, there is a shift away from seeing genes as having ‘responsibilities’ for determining phenotypes towards seeing them play a role along with other genes in genetic cascades where other factors such as timing can be incorporated. The analysis of genomic features such as imprinting and X-chromosome inactivation also provide evidence that such a change should be recognised. Rather than seeing sex in terms of fixed and static differences and similarities, current research offers new ways of conceptualising similarities and differences as dynamic and responsive to environment. This supports wider understandings of ‘biology’ as relying on the interactions between genetic processes, cellular environment, and tissue environment – in which the social physicality of bodies is important in forming and maintaining a person’s biology and genetic processes. Yet as the historical analysis of the shift between the one sex to two sex model indicates, it remains to be seen whether the social sphere will respond by incorporating this new evidence into the tacit, everyday understandings of sex or seek to maintain the binary and fixed relationship(s) between men and women by governing them as males and females

Turning 18 in mental health services: a multicountry qualitative study of service user experiences and views

Background: Worldwide, the division between Child and Adolescent Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS) has frequently resulted in fragmented care with an unprepared, non-gradual transition. To improve continuity of care and other service transition experiences, service user input is essential. However, such previous qualitative studies are from a decade ago or focused on one mental disorder or country. The aim of the present study was to learn from service users’ transition experiences and suggested improvements. Methods: Semi-structured interviews were held with young people aged 18–24 and/or parents/caregivers in the United Kingdom, Ireland, the Netherlands and Croatia. Inclusion was based on the experience of specialist mental health care before and after turning 18. Thematic analysis of transcribed and translated interview transcripts was performed using ATLAS.ti 9. Results: Main themes of service user experiences included abrupt changes in responsibilities, various barriers and a lack of preparation, communication and ongoing care. Young people expressed a great need for continuity of care. Their suggestions to improve transitional care included early and adequate preparation, joint working, improved communication from and between services, overlapping services, staying at CAMHS for longer and designated youth mental health teams. Conclusions: Young people who experienced care before and after turning 18 suggested either altering the age limits of services or ensuring early preparation and communication regarding the transition and finding AHMS. This communication should include general changes when turning 18. Further considerations include increasing collaboration and overlap between CAMHS and AMHS

Leaving child and adolescent mental health services (CAMHS): the impact of diagnosis and medication management on optimal discharge or transition

PURPOSE: This study aims to explore how young people in child and adolescent mental health services (CAMHS) in the UK, Ireland, The Netherlands and Croatia, experienced leaving CAMHS and identified a range of factors impeding optimal discharge or transition to adult mental health services (AMHS). DESIGN/METHODOLOGY/APPROACH: Interviews about discharge or transition planning, including what information was provided about their ongoing mental health needs, undertaken with 34 young people aged 17–24, all previous or current attendees of CAMHS. Some interviews included accounts by parents or carers. Data were thematically analysed. FINDINGS: A number of previously well-documented barriers to a well-delivered discharge or transition were noted. Two issues less frequently reported on were identified and further discussed; they are the provision of an adequately explained, timely and appropriately used diagnosis and post-CAMHS medication management. Overall, planning processes for discharging or transitioning young people from CAMHS are often sub-optimal. Practice with regard to how and when young people are given a diagnosis and arrangements for the continuation of prescribed medication appear to be areas requiring improvement. ORIGINALITY/VALUE: Study participants came from a large cohort involving a wide range of different services and health systems in the first pan-European study exploring the CAMHS to adult service interface. Two novel and infrequently discussed issues in the literature about young people’s mental health transitions, diagnosis and medication management were identified in this cohort and worthy of further study

“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered

Public policies, law and bioethics: : a framework for producing public health policy across the European Union

Unlike the duties of clinicians to patients, professional standards for ethical practice are not well defined in public health. This is mainly due to public health practice having to reconcile tensions between public and private interest(s). This involves at times being paternalistic, while recognising the importance of privacy and autonomy, and at the same time balancing the interests of some against those of others. The Public Health specialist operates at the macro level, frequently having to infer the wishes and needs of individuals that make up a population and may have to make decisions where the interests of people conflict. This is problematic when devising policy for small populations; however, it becomes even more difficult when there is responsibility for many communities or nation states. Under the Treaty on European Union, the European Commission was given a competence in public health. Different cultures will give different moral weight to protecting individual interests versus action for collective benefit. However, even subtle differences in moral preferences may cause problems in deriving public health policy within the European Union. Understanding the extent to which different communities perceive issues such as social cohesion by facilitating cultural dialogues will be vital if European institutions are to work towards new forms of citizenship. The aim of EuroPHEN was to derive a framework for producing common approaches to public health policy across Europe. Little work has been done on integrating ethical analysis with empirical research, especially on trade-offs between private and public interests. The disciplines of philosophy and public policy have been weakly connected. Much of the thinking on public health ethics has hitherto been conducted in the United States of America, and an ethical framework for public health within Europe would need to reflect the greater respect for values such as solidarity and integrity which are more highly valued in Europe. Towards this aim EuroPHEN compared the organisation of public health structures and public policy responses to selected public health problems in Member States to examine how public policy in different countries weighs competing claims of private and public interest. Ethical analysis was performed of tensions between the private and public interest in the context of various ethical theories, principles and traditions. During autumn 2003, 96 focus groups were held across 16 European Union Member States exploring public attitudes and values to public versus private interests. The groups were constructed to allow examination of differences in attitudes between countries and demographic groups (age, gender, smoking status, educational level and parental and marital status). Focus group participants discussed issues such as attitudes to community; funding of public services; rights and responsibilities of citizens; rules and regulations; compulsory car seat belts; policies to reduce tobacco consumption; Not-In-My-Back-Yard arguments; banning of smacking of children; legalising cannabis and parental choice with regards to immunisation. This project proposes a preliminary framework and stresses that a European policy of Public Health will have to adopt a complex, pluralistic and dynamic goal structure, capable of accommodating variations in what specific goals should be prioritised in the specific socio-economic settings of individual countries

How can frontline expertise and new models of care best contribute to safely reducing avoidable acute admissions? A mixed-methods study of four acute hospitals

BackgroundHospital emergency admissions have risen annually, exacerbating pressures on emergency departments (EDs) and acute medical units. These pressures have an adverse impact on patient experience and potentially lead to suboptimal clinical decision-making. In response, a variety of innovations have been developed, but whether or not these reduce inappropriate admissions or improve patient and clinician experience is largely unknown.AimsTo investigate the interplay of service factors influencing decision-making about emergency admissions, and to understand how the medical assessment process is experienced by patients, carers and practitioners.MethodsThe project used a multiple case study design for a mixed-methods analysis of decision-making about admissions in four acute hospitals. The primary research comprised two parts: value stream mapping to measure time spent by practitioners on key activities in 108 patient pathways, including an embedded study of cost; and an ethnographic study incorporating data from 65 patients, 30 carers and 282 practitioners of different specialties and levels. Additional data were collected through a clinical panel, learning sets, stakeholder workshops, reading groups and review of site data and documentation. We used a realist synthesis approach to integrate findings from all sources.FindingsPatients’ experiences of emergency care were positive and they often did not raise concerns, whereas carers were more vocal. Staff’s focus on patient flow sometimes limited time for basic care, optimal communication and shared decision-making. Practitioners admitted or discharged few patients during the first hour, but decision-making increased rapidly towards the 4-hour target. Overall, patients’ journey times were similar, although waiting before being seen, for tests or after admission decisions, varied considerably. The meaning of what constituted an ‘admission’ varied across sites and sometimes within a site. Medical and social complexity, targets and ‘bed pressure’, patient safety and risk, each influenced admission/discharge decision-making. Each site responded to these pressures with different initiatives designed to expedite appropriate decision-making. New ways of using hospital ‘space’ were identified. Clinical decision units and observation wards allow potentially dischargeable patients with medical and/or social complexity to be ‘off the clock’, allowing time for tests, observation or safe discharge. New teams supported admission avoidance: an acute general practitioner service filtered patients prior to arrival; discharge teams linked with community services; specialist teams for the elderly facilitated outpatient treatment. Senior doctors had a range of roles: evaluating complex patients, advising and training juniors, and overseeing ED activity.ConclusionsThis research shows how hospitals under pressure manage complexity, safety and risk in emergency care by developing ‘ground-up’ initiatives that facilitate timely, appropriate and safe decision-making, and alternative care pathways for lower-risk, ambulatory patients. New teams and ‘off the clock’ spaces contribute to safely reducing avoidable admissions; frontline expertise brings value not only by placing senior experienced practitioners at the front door of EDs, but also by using seniors in advisory roles. Although the principal limitation of this research is its observational design, so that causation cannot be inferred, its strength is hypothesis generation. Further research should test whether or not the service and care innovations identified here can improve patient experience of acute care and safely reduce avoidable admissions.FundingThe National Institute for Health Research (NIHR) Health Services and Delivery Research programme (project number 10/1010/06). This research was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula

Leaving child and adolescent mental health services (CAMHS) : the impact of diagnosis and medication management on optimal discharge or transition

Purpose This study aims to explore how young people in child and adolescent mental health services (CAMHS) in the UK, Ireland, The Netherlands and Croatia, experienced leaving CAMHS and identified a range of factors impeding optimal discharge or transition to adult mental health services (AMHS). Design/methodology/approach Interviews about discharge or transition planning, including what information was provided about their ongoing mental health needs, undertaken with 34 young people aged 17–24, all previous or current attendees of CAMHS. Some interviews included accounts by parents or carers. Data were thematically analysed. Findings A number of previously well-documented barriers to a well-delivered discharge or transition were noted. Two issues less frequently reported on were identified and further discussed; they are the provision of an adequately explained, timely and appropriately used diagnosis and post-CAMHS medication management. Overall, planning processes for discharging or transitioning young people from CAMHS are often sub-optimal. Practice with regard to how and when young people are given a diagnosis and arrangements for the continuation of prescribed medication appear to be areas requiring improvement. Originality/value Study participants came from a large cohort involving a wide range of different services and health systems in the first pan-European study exploring the CAMHS to adult service interface. Two novel and infrequently discussed issues in the literature about young people’s mental health transitions, diagnosis and medication management were identified in this cohort and worthy of further stud

How can frontline expertise and new models of care best contribute to safely reducing avoidable acute admissions? A mixed-methods study of four acute hospitals

Background Hospital emergency admissions have risen annually, exacerbating pressures on emergency departments (EDs) and acute medical units. These pressures have an adverse impact on patient experience and potentially lead to suboptimal clinical decision-making. In response, a variety of innovations have been developed, but whether or not these reduce inappropriate admissions or improve patient and clinician experience is largely unknown. Aims To investigate the interplay of service factors influencing decision-making about emergency admissions, and to understand how the medical assessment process is experienced by patients, carers and practitioners. Methods The project used a multiple case study design for a mixed-methods analysis of decision-making about admissions in four acute hospitals. The primary research comprised two parts: value stream mapping to measure time spent by practitioners on key activities in 108 patient pathways, including an embedded study of cost; and an ethnographic study incorporating data from 65 patients, 30 carers and 282 practitioners of different specialties and levels. Additional data were collected through a clinical panel, learning sets, stakeholder workshops, reading groups and review of site data and documentation. We used a realist synthesis approach to integrate findings from all sources. Findings Patients’ experiences of emergency care were positive and they often did not raise concerns, whereas carers were more vocal. Staff’s focus on patient flow sometimes limited time for basic care, optimal communication and shared decision-making. Practitioners admitted or discharged few patients during the first hour, but decision-making increased rapidly towards the 4-hour target. Overall, patients’ journey times were similar, although waiting before being seen, for tests or after admission decisions, varied considerably. The meaning of what constituted an ‘admission’ varied across sites and sometimes within a site. Medical and social complexity, targets and ‘bed pressure’, patient safety and risk, each influenced admission/discharge decision-making. Each site responded to these pressures with different initiatives designed to expedite appropriate decision-making. New ways of using hospital ‘space’ were identified. Clinical decision units and observation wards allow potentially dischargeable patients with medical and/or social complexity to be ‘off the clock’, allowing time for tests, observation or safe discharge. New teams supported admission avoidance: an acute general practitioner service filtered patients prior to arrival; discharge teams linked with community services; specialist teams for the elderly facilitated outpatient treatment. Senior doctors had a range of roles: evaluating complex patients, advising and training juniors, and overseeing ED activity. Conclusions This research shows how hospitals under pressure manage complexity, safety and risk in emergency care by developing ‘ground-up’ initiatives that facilitate timely, appropriate and safe decision-making, and alternative care pathways for lower-risk, ambulatory patients. New teams and ‘off the clock’ spaces contribute to safely reducing avoidable admissions; frontline expertise brings value not only by placing senior experienced practitioners at the front door of EDs, but also by using seniors in advisory roles. Although the principal limitation of this research is its observational design, so that causation cannot be inferred, its strength is hypothesis generation. Further research should test whether or not the service and care innovations identified here can improve patient experience of acute care and safely reduce avoidable admissions