Lost in translation: Public policies, evidence-based practice, and Autism Spectrum Disorder

Prevalence rates of autism spectrum disorder have risen dramatically over the past few decades (now estimated at 1:50 children). The estimated total annual cost to the public purse in the United States is US$137 billion, with an individual lifetime cost in the United Kingdom estimated at between £0.8 million and £1.23 million depending on the level of functioning. The United Nations Convention for the Rights of Persons with Disabilities has enshrined full and equal human rights—for example, for inclusion, education and employment—and there is ample evidence that much can be achieved through adequate support and early intensive behavioural interventions. Not surprisingly, most governments worldwide have devised laws, policies, and strategies to improve services related to autism spectrum disorder, yet intriguingly the approaches differ considerably across the globe. Using Northern Ireland as a case in point, we look at relevant governmental documents and offer international comparisons that illustrate inconsistencies akin to a “postcode lottery” of services.

Reimagining rights-based accountability: Community use of economic and social rights

This article explores the ways in which marginalised groups in Northern Ireland have employed and translated for practical use human rights standards, principles and mechanisms to campaign for the implementation of economic and social rights obligations. With the support of Participation and Practice of Rights, a regional nongovernmental organisation, marginalised groups have drawn upon human rights in their local context to campaign on issues related to mental health, housing, work and play. Based on case studies from four such campaigns, this article reviews the practical steps groups took to engage directly or indirectly with economic and social rights tools and mechanisms. The article reflects on the usefulness of these frameworks and mechanisms for achieving change in the case studies discussed, as well as the value of a human rights framework for empowering marginalised communities to make rights-based demands for change. It is argued that although the realisation of economic and social rights is limited in part by the lack of traditional enforcement mechanisms, community driven campaigns offer an opportunity for reimagining mechanisms for rights-based accountability.

Gaining ethical approvals to undertake sexual health research with young people in the UK: Applying a 'Children's Rights Based Approach'

This paper (co-written with Dr Maria Lohan, Dr Carmel Kelly & Professor Laura Lundy) will describe the ethical review process to undertake health research in the UK, and explain an approach that can help researchers deal with ethical and methodological dilemmas in their research. Ethical review is necessary to ensure researchers and participants are protected, yet the requirement to ‘pass’ numerous committees may be challenging particularly for health researchers who work with vulnerable groups and sensitive topics. The inclusion of these groups/topics is crucial if health researchers are to understand health disparities and implement appropriate interventions with health benefits for vulnerable populations. It is proposed that to overcome ethical and methodological challenges and pitfalls, researchers must implement strategies that advocate for, and increase the participation of, vulnerable populations in health research. A ‘children’s rights based approach’ using participatory methodology will be described that draws on the jurisprudence of international law, (United Nations Convention on the Rights of the Child, 1989) and provides a framework that may empower ethics committees to carry out their function confidently. The role of the researcher, framed within the context of doctoral level study, will be reviewed in terms of the investment required and benefits of utilising this approach. It will be argued that adopting this approach with vulnerable groups, not only guarantees their meaningful participation in the research process and permits their voices to be heard, but also offers ethics committees an internationally agreed upon legal framework, ratified by their governing States, from which to fulfil their obligations and resolve their ethical dilemmas. Increasing the representation and participation of vulnerable groups in health research can inform the development of health policy and practice based on ‘insider knowledge’ that better engages with and more adequately reflects their specific needs. This is likely to yield numerous health, social and economic benefits for all of society through the delivery of more equitable, effective and sustainable services.

Post-trauma: Is evidence based practice a fantasy?

Trauma, bereavement, and loss are universal human experiences. Much has been written about the process that the bereaved go through following the loss of a loved one. Recent events such as 9/11, earthquakes in Turkey, genocides in Rwanda, community conflict in Northern Ireland, and the Asian Tsunami Disaster have drawn unprecedented public attention to the subject of traumatic bereavement. Increasingly, it is recognised that while most people are able to cope with loss generally by eventually restructuring their lives, those bereaved in traumatic circumstance often find it extremely difficult. As a consequence, a plethora of interventions have emerged, however, to-date, little is know about their actual effectiveness in helping the bereaved. With the emphasis of health and welfare professions on evidencebased practice (EBP) greater than ever and a raising awareness of accountability as key element of ethical practice, the call for EBP in traumatic bereavement is compelling. Using examples from work carried out in Northern Ireland, we look at the backdrop of the issues involved, describe some of the most commonly used therapeutic interventions, and explore the possibility of evidence-based practice.

The postmodernist war on evidence-based practice

In this paper, we examine the war of words between those who contend that health care practice, including nursing, should primarily be informed by research (the evidence-based practice movement), and those who argue that there should be no restrictions on the sources of knowledge used by practitioners (the postmodernists). We review the postmodernist interventions of Dave Holmes and his colleagues, observing that the postmodernist style to which they adhere, which includes the use of continental philosophy, metaphors, and acerbic delivery, tends to obscure their substantive arguments. The heated nature of some responses to them has tended to have the same effect. However, the substantive arguments are important. Five main postmodernist charges are identified and discussed. The first argument, that the notion of ‘best evidence’ implies a hierarchical and exclusivist approach to knowledge, is persuasive. However, the contention that this hierarchy is maintained by the combined pressures of capitalism and vested interests within academia and the health services, is less well founded. Nevertheless, postmodernist contentions that the hierarchy embraced by the evidence-based practice movement damages health care because it excludes other forms of evidence that are needed to understand the complexity of care, it marginalizes important aspects of clinical knowledge, and it fails to take account of individuals or their experience, are all seen to be of some merit. However, we do not share the postmodernist conclusion that this adds up to a fascist order. Instead, we characterize evidence-based practice as a necessary but not sufficient component of health care knowledge.

Fundamental patterns of knowing in nursing: The challenge of evidence-based practice

This article reconsiders the fundamental patterns of knowing in nursing in light of the challenge of narrowempirics in the formof evidence-based practice. Objections to the dominance of evidence-based practice are reviewed, and the reasons for it are examined. It is argued that it is partially the result of weaknesses in the alternative patterns of ethical, personal, and esthetic knowing, the ineffability of which compromises accountability. This ineffability can be countered only by introducing a wider form of empirics than countenanced by evidencebased practice into all patterns of knowing, to demonstrate their salience and to make their use in practice transparent.

Developing outcomes for educational services: a children's rights-based approach

This article provides a rationale for and insight into an explicit children's rights-based approach to the identification of outcomes for proposed educational interventions. It presents a critical reflection on a research project which sought to integrate international children's rights standards into the design of services through a children's rights audit of potential outcomes and the meaningful engagement of children in the research and service design processes. While children are involved increasingly as co-researchers in qualitative studies, it is less common for this to occur in quantitative studies. This article offers some additional insight into children's participation in the interpretation of data from a large-scale baseline survey. The article concludes with an argument that international children's rights law provides not just a legal imperative but also a comprehensive framework with which to assert the case for increased recognition of children as salient stakeholders in all aspects of service design.