Panning for Gold: The Standardizing Work of Filling “Autistic” Shells – Using institutional ethnography to explore textually mediated health relations in the diagnostic process of autism.

Health reform practices in Canada and elsewhere have restructured the purpose and use of diagnostic labels and the processes of naming such labels. Diagnoses are no longer only a means to tell doctors and patients what may be wrong and indicate potential courses of treatment; some diagnoses activate specialized services and supports for persons with a disability and those who provide care for them. In British Columbia, a standardized process of diagnosis with the outcome of an autism spectrum disorder gives access to government provided health care and educational services and supports. Such processes enter individuals into a complex of text mediated relations, regulated by the principles of evidence-based medicine. However, the diagnosis of autism in children is notoriously uncertain. Because of this ambiguity, standardizing the diagnostic process creates a hurdle in gaining help and support for parents who have children with problems that could lead to a diagnosis on the autism spectrum. Such processes and their organizing relations are problematized, explored and explicated below. Grounded in the epistemological and ontological shift offered by Dorothy E. Smith (1987; 1990a; 1999; 2005), this article reports on the findings of an institutional ethnographic study that explored the diagnostic process of autism in British Columbia. More specifically, this article focuses on the processes involved in going from mothers talking from their experience about their childrens problems to the formalized and standardized, and thus “virtually” produced, diagnoses that may or may not give access to services and supports in different systems of care. Two psychologists, a developmental pediatrician, a social worker – members of a specialized multidisciplinary assessment team – and several mothers of children with a diagnosis on the autism spectrum were interviewed. The implications of standardizing the diagnosis process of a disability that is not clear-cut and has funding attached are discussed. This ethnography also provides a glimpse of the implications of current and ongoing reforms in the state-supported health care system in British Columbia, and more generally in Canada, for people’s everyday doings.

An Unkind Cut: Circumcision, Death and the Impact of Irish Health Policy on Asylum Seekers

Healthcare and the wider social determinants of health are the keystone of a number of complex progressive social justice issues that evoke complex emotions. As the demography of Ireland rapidly changes, the practices and expectations of some asylum seekers presents new opportunities for the providers of health service provision and reform. This paper looks at some of the emotions evoked in health care issues and draws on observations and interviews from empirical fieldwork carried out for the Health Research Board. The research was conducted both in the Adelaide and Meath Hospital, incorporating the National Children’s Hospital, Tallaght and in a number of refugee reception centres in Ireland. At one level honouring faith choices within a healthcare setting is a societal acknowledgement made to people at their most vulnerable, that the potent and cathartic transformative rituals they value are significant in mediating and managing their emotions - at another level, it is a practical and a symbolic communication of a statutory commitment to inter-culturalism and community cohesion..

Choice and Welfare Reform: Lone Parents’ Decision Making around Paid Work and Family Life

Welfare-to-work policy in the UK sees ‘choice’ regarding lone parents’ employment decisions increasingly defined in terms of powers of selection between options within active labour market programmes, with constraints on the option of non-market activity progressively tightened. In this paper, we examine the wider choice agenda in public services in relation to lone-parent employment, focusing on the period of welfare reform following the 2007 Freud review of welfare provision. Survey data is used to estimate the extent to which recent policies promoting compulsory job search by youngest dependent child age map onto lone parents' own stated decision-making regarding if and when to enter the labour market. The findings indicate a substantial proportion of lone parents targeted by policy reform currently do not want a job and that their main reported reason is that they are looking after their children. Economically inactive lone mothers also remain more likely to have other chronic employment barriers, which traverse dependent child age categories. Some problems, such as poor health, sickness or disability, are particularly acute among those with older dependent children who are the target of recent activation policy.

Rethinking prenatal care within a social model of health: an exploratory study in Northern Ireland

Implementation of maternity reform agendas remains limited by the dominance of a medical rather than social model of health. This article considers group prenatal care as a complex health intervention and explores its potential in the socially divided, postconflict communities of Northern Ireland. Using qualitative inquiry strategies, we sought key informants’ views on existing prenatal care provision and on an innovative group care model (CenteringPregnancy®) as a social health initiative. We argue that taking account of the locally specific context is critical to introducing maternity care interventions to improve the health of women and their families and to contribute to community development.

Judicial Rehabilitation and the ‘Clean Bill of Health’ in Criminal Justice.

Drawing on an important survey of European and Australian policies toward ‘judicial rehabilitation,’ this article makes the following arguments. First, the rehabilitation movement should return to the origins of the word ‘rehabilitation’ and focus at least as much on efforts to remove and relieve ex-prisoner stigma as on treatment and reform efforts. There will be no ‘rehabilitation revolution’ without this. Second, these efforts should involve active, not passive redemption. Rehabilitation processes that require almost a decade or more of ‘crime-free’ behaviour before forgiving an individual for his or her crimes are just and fair, but they miss the point of rehabilitation. Policies should encourage, support and facilitate good behaviour and not just reward it in retrospect. Third, rehabilitation should not just be done, but be ‘seen to be done,’ ideally in a ritualised format. This sends an important message to the individual and wider society. Finally, I argue that it may be better to forgive than forget past crimes. That is, rather than burying past crimes as if they never happened, states should instead acknowledge and formally recognise that people can change, that good people can do bad things, and that all individuals should be able to move on from past convictions.

Capitalism, the state and health care in the age of austerity:A Marxist analysis

The capacity to provide satisfactory nursing care is being increasingly compromised by current trajectories of healthcare funding and governance. The purpose of this paper is to examine how well Marxist theories of the state and its relationship with capital can explain these trajectories in this period of ever-increasing austerity. Following a brief history of the current crisis, it examines empirically the effects of the crisis, and of the current trajectory of capitalism in general, upon the funding and organization of the UK and US healthcare systems. The deleterious effect of growing income inequalities to the health of the population are also addressed. Marx’s writings on the state and its relation to the capitalist class were fragmentary, and historically and geographically specific. From them, we can extract three theoretical variants: the instrumentalist theory of the state, where the state has no autonomy from capital; the abdication theory, whereby capital abstains from direct political power and relies on the state to serve its interests; and the class-balance theory of the state, whereby the struggle between two opposed classes allows the state to assert itself. Discussion of modern Marxist interpretations include Poulantzas’s structuralist abdication theory and Miliband’s instrumentalist theory. It is concluded that, despite the pluralism of electoral democracies, the bourgeoisie do have an overweening influence upon the state. The bourgeoisie’s ownership of the means of production provides the foundation for its influence because the state is obliged to rely on it to manage the supply of goods and services and the creation of wealth. That power is further reinforced by the infiltration of the bourgeoisie into the organs of state. The level of influence has accelerated rapidly over recent decades. One of the consequences of this has been that healthcare systems have become rich pickings for the evermore confident bourgeoisie.

Choice of contracts in the British National Health Service: An empirical study

Following major reforms of the British National Health Service (NHS) in 1990, the roles of purchasing and providing health services were separated, with the relationship between purchasers and providers governed by contracts. Using a mixed multinomial logit analysis, we show how this policy shift led to a selection of contracts that is consistent with the predictions of a simple model, based on contract theory, in which the characteristics of the health services being purchased and of the contracting parties influence the choice of contract form. The paper thus provides evidence in support of the practical relevance of theory in understanding health care market reform. © 2008 Elsevier B.V. All rights reserved.

'"These schemes will win for themselves the confidence of the people": Irish independence, poor law reform and hospital provision'

This article examines hospital provision in Ireland during the early twentieth century. It examines attempts by the newly independent Irish Free State to reform and de-stigmatise medical relief in former workhouse infirmaries. Such reforms were designed to move away from nineteenth century welfare regimes which were underpinned by principles of deterrence. The reform initiated in independent Ireland - the first attempted break-up of the New Poor Law in Great Britain or Ireland - was partly successful. Many of the newly named County and District Hospitals provided solely for medical cases and managed to dissociate such health care provision from the relief of poverty. However, some hospitals continued to act as multifunctional institutions and provided for various categories including the sick, the aged and infirm, 'unmarried mothers' and 'harmless lunatics'. Such institutions often remained associated with the relief of poverty. This article also examines patient fee-payment and outlines how fresh terms of entitlement and means-testing were established. Such developments were even more pronounced in voluntary hospitals where the majority of patients made a financial contribution to their treatment. The article argues that the ability to pay at times determined the type of provision, either voluntary or rate-aided, available to the sick. However, it concludes that the clinical condition of patients often determined whether they entered a more prestigious voluntary hospital or the former workhouse. Although this article concentrates on two Irish case studies, County Kerry and Cork City; it is conceptualised within wider developments with particular reference to the British context.

An international comparison of legal frameworks for supported and substitute decision-making in mental health services

There have been important recent developments in law, research, policy and practice relating to supporting people with decision-making impairments, in particular when a person’s wishes and preferences are unclear or inaccessible. A driver in this respect is the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the implications of the CRPD for policy and professional practices are currently debated. This article reviews and compares four legal frameworks for supported and substitute decision-making for people whose decision-making ability is impaired. In particular, it explores how these frameworks may apply to people with mental health problems. The four jurisdictions are: Ontario, Canada; Victoria, Australia; England and Wales, United Kingdom (UK); and Northern Ireland, UK. Comparisons and contrasts are made in the key areas of: the legal framework for supported and substitute decision-making; the criteria for intervention; the assessment process; the safeguards; and issues in practice. Thus Ontario has developed a relatively comprehensive, progressive and influential legal framework over the past thirty years but there remain concerns about the standardisation of decision-making ability assessments and how the laws work together. In Australia, the Victorian Law Reform Commission (2012) has recommended that the six different types of substitute decision-making under the three laws in that jurisdiction, need to be simplified, and integrated into a spectrum that includes supported decision-making. In England and Wales the Mental Capacity Act 2005 has a complex interface with mental health law. In Northern Ireland it is proposed to introduce a new Mental Capacity (Health, Welfare and Finance) Bill that will provide a unified structure for all substitute decision-making. The discussion will consider the key strengths and limitations of the approaches in each jurisdiction and identify possible ways that further progress can be made in law, policy and practice.

Assessment Work of Paramedics on the Front lines of Emergency Health Services

This article draws on an institutional ethnographic inquiry into the work of paramedics and the institutional setting that organizes and coordinates their work processes. Drawing on over 200 hours of observations and over 100 interviews with paramedics (average length of 18 minutes) and other emergency medical personnel, this article explores the standard and not so standard work of paramedics as they assess and care for their patients on the front lines of emergency health services. More specifically, I focus on the multiplicity of interfacing social, demographic, locational, situational, and institutional factors that shape and organize the work of paramedics. In doing so, this article provides insights into how paramedics orient to the social context in which their work occurs and contrasts this actual work with how their work is institutionally reported and made visible; what gets counted institutionally is not necessarily the same as what counts for the paramedics. This article problematizes this demarcation between what is known institutionally and “systematic practices of ‘not knowing’” (DeVault, 2008, p. 290).

Personal and Public Involvement and its impact - Monitoring, measuring and evaluating the impact of Personal and Public Involvement (PPI) in Health and Social Care in Northern Ireland.

Introduction
This report details the findings from research conducted across Northern Ireland’s Health and Social Care Trusts during 2015 which examines the current state of Personal and Public Involvement (PPI). This is about how service users, carers and patients engage with staff, management and directors of statutory health and social care organisations. Most statutory health and social care organisations must, under legislation, meet the requirements of PPI. PPI has been part of health and social care policy in Northern Ireland since 2007 and became law two years later with the introduction of the Health and Social Care Reform Act (2009). It is, therefore, timely that PPI is now assessed in this systematic way in order to both examine the aspects which are working well and to highlight those areas where improvements need to be made. As far as possible, this Summary Report is written in an accessible way, avoiding jargon and explaining key research terms, so as to ensure it is widely understood. This is in keeping with established good practice in service user involvement research. This summary, therefore, gives a picture of PPI in Northern Ireland currently. There is also a fuller report which gives a lot more details about the research and findings. Information on this is available from the Public Health Agency and/or the Patient and Client Council.