Managing crisis:the role of primary care for people with serious mental illness

Background and Objectives: More than 30% of patients with serious mental illness in the United Kingdom now receive all their health care solely from primary care. This study explored the process of managing acute mental health crises from the dual perspective of patients and primary care health professionals. Methods: Eighteen focus groups involving 45 patients, 39 general practitioners, and eight practice nurses were held between May and November 2002 in six Primary Care Trusts across the British West Midlands. The topic guide explored perceptions of gold standard care, current issues and critical incidents in receiving/providing care, and ideas on improving services. Results: Themes relevant to the management of acute crisis included issues of process, such as access, advocacy, communication, continuity, and coordination of care; the development of more structured care that might reduce the need for crisis responses; and issues raised by the development of a more structured approach to care. Conclusions: Access to services is a complicated yet crucial feature of managing care in a crisis, with patients identifying barriers at the level of primary care and health professionals at the interface with secondary care. The development of more structured systems as a solution may generate its own ethical and pragmatic challenges.

Growing better brains? Pregnancy and neuroscience discourses in English social and welfare policies

In recent years, English welfare and health policy has started to include pregnancy within the foundation stage of child development. The foetus is also increasingly designated as ‘at risk’ from pregnant women. In this article, we draw on an analysis of a purposive sample of English social and welfare policies and closely related advocacy documents to trace the emergence of neuroscientific claims-making in relation to the family. In this article, we show that a specific deterministic understanding of the developing brain that only has a loose relationship with current scientific evidence is an important component in these changes. We examine the ways in which pregnancy is situated in these debates. In these debates, maternal stress is identified as a risk to the foetus; however, the selective concern with women living in disadvantage undermines biological claims. The policy claim of neurological ‘critical windows’ also seems to be influenced by social concerns. Hence, these emerging concerns over the foetus’ developing brain seem to be situated within the gendered history of policing women’s pregnant bodies rather than acting on new insights from scientific discoveries. By situating these developments within the broader framework of risk consciousness, we can link these changes to wider understandings of the ‘at risk’ child and intensified surveillance over family life.

Biologising parenting:neuroscience discourse, English social and public health policy and understandings of the child

In recent years, claims about children's developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However, what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this article illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children's brains, with its accompanying deterministic perspective on parenting, overlooks children's embodied lives and this has implications for the design of children's health and welfare services.

Neuroscience and family policy:what becomes of the parent?

This article discusses the findings of a study tracing the incorporation of claims about infant brain development into English family policy as part of the longer term development of a ‘parent training’, early intervention agenda. The main focus is on the ways in which the deployment of neuroscientific discourse in family policy creates the basis for a new governmental oversight of parents. We argue that advocacy of ‘early intervention’, in particular that which deploys the authority of ‘the neuroscience’, places parents at the centre of the policy stage but simultaneously demotes and marginalises them. So we ask, what becomes of the parent when politically and culturally, the child is spoken of as infinitely and permanently neurologically vulnerable to parental influence? In particular, the policy focus on parental emotions and their impact on infant brain development indicates that this represents a biologisation of ‘therapeutic’ governance.

Developing an intervention to equip nurses for acute life threatening events (ALTEs) in hospital:a phenomenological approach to healthcare research

Objectives: To understand staff's experiences of acute life threatening events (ALTEs) in a pediatric hospital setting. These data will inform an intervention to equip nurses with clinical and emotional skills for dealing with ALTEs. Method: A mixed design was used in the broader research program; this paper focuses on phenomenon-focused interviews analyzed using interpretative phenomenological analysis (IPA). Results: Emerging themes included staff's relationships with patients and the impact of personhood on their ability to perform competently in an emergency. More experienced nurses described "automatic" competence generated through increased exposure to ALTEs and were able to recognize "fumbling and shaking" as a normal stress response. Designating a role was significant to staff experience of effectiveness. Key to nurses' learning experience was reflection and identifying experiences as "teachable moments." Findings were considered alongside existing theories of self-efficacy, reflective thought, and advocacy inquiry to create an experiential learning intervention involving a series of clinical and role-related scenarios. Conclusion: The phenomenological work facilitated an in-depth reading of experience. It accentuated the importance of exposure to ALTEs giving nurses experiential knowledge to prepare them for the impact of these events. Challenges included bracketing the personhood of child patients, shifting focus to clinical tasks during the pressured demands of managing an ALTE, normalizing the physiological stress response, and the need for a forum and structure for reflection and learning. An intervention will be designed to provide experiential learning and encourage nurses to realize and benefit from their embodied knowledge.

Determinants of civil society influence:the case of international development and humanitarian NGOs in the Czech Republic and Hungary

Accession to the EU has had ambiguous effects on civil society organizations (CSOs) in the East Central European countries. A general observation is that accession has not led to the systematic empowerment of CSOs in terms of growing influence on national policy making. This article investigates the determinants of successful CSO advocacy by looking at international development and humanitarian NGOs (NGDOs) in the Czech Republic and Hungary. Reforms in the past decade in the Czech Republic have created an international development policy largely in line with NGDO interests, while Hungary’s ministry of foreign affairs seems to have been unresponsive to reform demands from civil society. The article argues that there is clear evidence of NGDO influence in the Czech Republic on international development policy, which is because of the fact that Czech NGDOs have been able solve problems of collective actions, while the Hungarian NGDO sector remains fragmented. They also have relatively stronger capacities, can rely on greater public support and can thus present more legitimate demands towards their government.

Corporate coalitions and policy making in the European Union:how and why British American tobacco promoted "better regulation"

Over the past fifteen years, an interconnected set of regulatory reforms, knownas Better Regulation, has been adopted across Europe, marking a significant shift in theway that European Union policies are developed. There has been little exploration of the origins of these reforms, which include mandatory ex ante impact assessment. Drawing on documentary and interview data, this article discusses how and why large corporations, notably British American Tobacco (BAT), worked to influence and promote these reforms. Our analysis highlights (1) howpolicy entrepreneurs with sufficient resources (such as large corporations) can shape the membership and direction of advocacy coalitions; (2) the extent to which "think tanks" may be prepared to lobby on behalf of commercial clients; and (3) why regulated industries (including tobacco) may favor the use of "evidence tools," such as impact assessments, in policy making. We argue that a key aspect of BAT's ability to shape regulatory reform involved the deliberate construction of a vaguely defined idea that could be strategically adapted to appeal to diverse constituencies.We discuss the theoretical implications of this finding for the Advocacy Coalition Framework, as well as the practical implications of the findings for efforts to promote transparency and public health in the European Union.

Policy ideas through the prism of knowledge regimes and framing

Policymakers are often confronted with problems that involve ambiguity and uncertainty (Zahariadis, 2003). In order to make sense of such problems and to identify possible solutions, they are on the lookout for policy ideas.

Identifying frames:a comparison of research methods

Framing plays an important role in public policy. Interest groups strategically highlight some aspects of a policy proposal while downplaying others in order to steer the policy debate in a favorable direction. Despite the importance of framing, we still know relatively little about the framing strategies of interest groups due to methodological difficulties that have prevented scholars from systematically studying interest group framing across a large number of interest groups and multiple policy debates. This article therefore provides an overview of three novel research methods that allow researchers to systematically measure interest group frames. More specifically, this article introduces a word-based quantitative text analysis technique, a manual, computer-assisted content analysis approach and face-to-face interviews designed to systematically identify interest group frames. The results generated by all three techniques are compared on the basis of a case study of interest group framing in an environmental policy debate in the European Union.

Precompetitive data sharing as a catalyst to address unmet needs in Parkinson's disease

Parkinson's disease is a complex heterogeneous disorder with urgent need for disease-modifying therapies. Progress in successful therapeutic approaches for PD will require an unprecedented level of collaboration. At a workshop hosted by Parkinson's UK and co-organized by Critical Path Institute's (C-Path) Coalition Against Major Diseases (CAMD) Consortiums, investigators from industry, academia, government and regulatory agencies agreed on the need for sharing of data to enable future success. Government agencies included EMA, FDA, NINDS/NIH and IMI (Innovative Medicines Initiative). Emerging discoveries in new biomarkers and genetic endophenotypes are contributing to our understanding of the underlying pathophysiology of PD. In parallel there is growing recognition that early intervention will be key for successful treatments aimed at disease modification. At present, there is a lack of a comprehensive understanding of disease progression and the many factors that contribute to disease progression heterogeneity. Novel therapeutic targets and trial designs that incorporate existing and new biomarkers to evaluate drug effects independently and in combination are required. The integration of robust clinical data sets is viewed as a powerful approach to hasten medical discovery and therapies, as is being realized across diverse disease conditions employing big data analytics for healthcare. The application of lessons learned from parallel efforts is critical to identify barriers and enable a viable path forward. A roadmap is presented for a regulatory, academic, industry and advocacy driven integrated initiative that aims to facilitate and streamline new drug trials and registrations in Parkinson's disease.

Importance and Benefits of OPEN SCIENCE for Ubiquitous Sharing, Dissemination and Impact

While openness is well applied to software development and exploitation (open sources), and successfully applied to new business models (open innovation), fundamental and applied research seems to lag behind. Even after decades of advocacy, in 2011 only 50% of the public-funded research was freely available and accessible (Archambault et al., 2013). The current research workflows, stemming from a pre-internet age, result in loss of opportunity not only for the researchers themselves (cf. extensive literature on topic at Open Access citation project, http://opcit.eprints.org/), but also slows down innovation and application of research results (Houghton & Swan, 2011). Recent studies continue to suggest that lack of awareness among researchers, rather than lack of e-infrastructure and methodology, is a key reason for this loss of opportunity (Graziotin 2014). The session will focus on why Open Science is ideally suited to achieving tenure-relevant researcher impact in a “Publish or Perish” reality. Open Science encapsulates tools and approaches for each step along the research cycle: from Open Notebook Science to Open Data, Open Access, all setting up researchers for capitalising on social media in order to promote and discuss, and establish unexpected collaborations. Incorporating these new approaches into a updated personal research workflow is of strategic beneficial for young researchers, and will prepare them for expected long term funder trends towards greater openness and demand for greater return on investment (ROI) for public funds.

Biologising parenting:neuroscience discourse, English social and public health policy and understandings of the child

In recent years, claims about children's developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this chapter illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children's brains, with its accompanying deterministic perspective on parenting, overlooks children's embodied lives and this has implications for the design of children's health and welfare services.

Organizational response to employment under the ADA of workers with psychiatric disabilities: Four case studies

Title 1 of the Americans with Disabilities Act (ADA) requires all employers, public and private, with more than fifteen employees to provide reasonable accommodation to qualified individuals with disabilities if the accommodation would, within limits, allow the individual to perform the essential functions of the job. Seven years after Congress enacted the law and five years after the initial provisions became effective, little information is available about the experience of organizations faced with requests for workplace accommodation.^ The question addressed in this study is: How are organizations responding to the ADA mandate to fit individuals with psychiatric disabilities in the workplace? The data sources are three organizations that allowed access to this sensitive information, and a fourth that had two disability discrimination charges filed against it.^ A brute-force case method approach applied to the four organizations yields the following information: Attorneys are hesitant to allow inquiry into company policy owing to fear of litigation; workers are not disclosing and requesting accommodation; tacit accommodation of long-standing employees appears to be a regular practice; knowledge of the intent of the ADA makes a difference in terms of equality of treatment; and insensitivity to employee privacy results in an adversarial situation.^ Implications are relevant to the need to improve lines of communication between human resource, EEO, supervisory, and legal staff; consequences of failure to address accommodations on an explicit level; need for better understanding of the availability and use of outside resources for achieving accommodation; and improvement of self-advocacy and disclosure by the employees with disabilities. ^

A quantitative application of symbolic interactionism to advance directive completion by older adults

This study examined contextual and situational influences on older adults' decision to complete advance directives by means of a conceptual framework derived from symbolic interactionist theory and a cross-sectional, correlational research design. It was hypothesized that completion of advance directives among older adults would be associated with visiting or participating in the care of a terminally ill or permanently incompetent individual sustained by technology. Using a 53-item questionnaire, computer assisted telephone interviews (CATI) were conducted with 398 community dwelling adults between September and October 2003. Respondents were contacted using random-select dialing from a listed sample of 99% of household telephone numbers in one South Florida census tract. Over 90% of households in this tract include an individual age 65 or older. ^ The results revealed that contrary to most reports in the literature a substantial proportion of older adults (82%) had completed advance directives and that the link between older adults and document completion was mainly through attorneys and not mandated agents, health care professionals. Further, more than one third of older adults reported that religion/spirituality was not an important part of their life, suggesting that the recommended practice of offering religious/spiritual counseling to all those approaching death be reexamined. The hypothesis was not supported (p > .05) and is explained by the situational emphasis on the variables rather than on structural influences. In logistic regression analysis, only increasing age (p = .001) and higher education (p = < .001) were significant but explained only 10% of the variance in document completion. ^ Based on the findings, increased interdisciplinary collaboration is suggested with regard to the advance directive agenda. Since attorneys play a key role in document completion, other professions should seek their expertise and collaboration. In addition, the inclusion of a religious/spiritual preference section in all living wills should be considered as an essential part of a holistic and individually appropriate document. Implications for social work education, practice, and advocacy are discussed as well as suggestions for further research. ^

Alternative service organizations: Funding environment, strategies, and patterns of adaptation

This study explored the strategies that community-based, consumer-focused advocacy, alternative service organizations (ASOs), implemented to adapt to the changes in the nonprofit funding environment (Oliver & McShane, 1979; Perlmutter, 1988a, 1994). It is not clear as to the extent to which current funding trends have influenced ASOs as little empirical research has been conducted in this area (Magnus, 2001; Marquez, 2003; Powell, 1986). ^ This study used a qualitative research design to investigate strategies implemented by these organizations to adapt to changes such as decreasing government, foundation, and corporate funding and an increasing number of nonprofit organizations. More than 20 community informants helped to identify, locate, and provide information about ASOs. Semi-structured interviews were conducted with a sample of 30 ASO executive directors from diverse organizations in Miami-bade and Broward Counties, in South Florida. ^ Data analysis was facilitated by the use of ATLAS.ti, version 5, a qualitative data analysis computer software program designed for grounded theory research. This process generated five major themes: Funding Environment; Internal Structure; Strategies for Survival; Sustainability; and Committing to the Cause, Mission, and Vision. ^ The results indicate that ASOs are struggling to survive financially by cutting programs, decreasing staff, and limiting service to consumers. They are also exploring ways to develop fundraising strategies; for example, increasing the number of proposals written for grants, focusing on fund development, and establishing for-profit ventures. Even organizations that state that they are currently financially stable are concerned about their financial vulnerability. There is little flexibility or cushioning to adjust to "funding jolts." The fear of losing current funding levels and being placed in a tenuous financial situation is a constant concern for these ASOs. ^ Further data collected from the self-administered Funding Checklist and demographic forms were coded and analyzed using Statistical Package for the Social Sciences (SPSS). Descriptive information and frequencies generated findings regarding the revenue, staff compliment, use of volunteers and fundraising consultants, and fundraising practices. The study proposes a model of funding relationships and presents implications for social work practice, and policy, along with recommendations for future research. ^