Using our criteria, approximately 10% of an unselected group of heart failure admitted to a typical U.K. district general hospital over a calendar year would be appropriate for biventricular pacing. This represents a large number of patients who might derive benefit from this new therapy.
The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in the use of visual methodologies, and rapid escalation in the numbers of digital images posted on the World Wide Web. Concern is raised about the possibility that tighter ethical regulation of social research, combined with the multitude of ethical issues raised by the use of image-based approaches may be discouraging the use of creative visual approaches in intellectual disability research. Inclusion in research through the use of accessible research methods is also an ethical issue, particularly in relation to those people who have hitherto been underrepresented in research. Visual approaches which have the potential to include people with profound and multiple intellectual disabilities are also discussed.
Accessible summary• People with learning disabilities who do not use speech are often left out of research.• Ways of doing research which do not use words (for example, using photographs) might make it easier for them to join in. • Ethics committees decide if plans for research projects are good enough.• It is important for ethics committees to stop people from being hurt by research.But they also need to know about the positive things that can happen for people with learning disabilities who get involved in research. • This article explains what happened when Martha (not her real name), a woman with learning disabilities who did not use speech, got involved in a research project at the hostel where she lived. • We hope this article will help researchers and ethics committees think about the positive things that can happen when people with learning disabilities get involved in research. SummaryAlthough there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however, tighter regulation of the UK Research Governance Framework and the requirements of the Mental Capacity Act 2005 have increased the complexity of ethical approval processes. In reaching decisions about whether or not to grant approval, ethics committees are obliged to consider the potential harm to research participants and also the potential benefits. This article documents the benefits of involvement for 'Martha', who participated in a research project using photographic methods at the hostel where she lived. We hope the article will stimulate debate about ethical approval and the use of creative methodologies in research with people with profound and multiple learning disabilities.Keywords Profound and multiple learning disabilities, research ethics, research methods, visual methods ª
W hen considering the impacts of educational change and teaching on teachers, there is encountered a vast, often vaguely defined and overlapping literature on such matters as teacher stress, teacher burnout , teacher morale, teacher satisfaction and teacher motivation; a literature which has expanded commensurately with educational innovation and change in the period since the 1960s. Frequently these matters are also the subject of debate and discussion in the public arena, the media, in election campaigns and in teachers' salary disputes. Stress and its effective management are high on the agenda of many primary and secondary schools in Britain today. It has been identified as a major problem in nine out of ten workplaces (Warren and Towl, 1995), leading to rising absenteeism and low morale among staff. This is particularly true of schools. A raft of legislation, resulting from the Education Reform Act 1988, has advocated a locally managed approach to school governanance as part of reform strategies intended to lead to improved student learning outcomes. Subsequent legislation (the Education Acts of 1992, 1993 and 1994) and amendments of the National Curriculum have meant that schools have been going through a period of continual governmentally imposed change. As a result of the 1992 Act all schools are also subject to inspection once every six years. The consequence of all this change is best summed up by the head teacher of an infants' school in the study: My post as head teacher of an infant school has changed dramatically since the passing of the 1988 Education Act. Political legislation has transformed the nature and scale of my work, minimising my training experience whilst thrusting me rapidly forward into budgeting, computing, site management, risk management, etc,-untrained and inexperienced. Perspective on stress In many countries teaching has been identified as one of the most stressful occupations. Studies in the United Kingdom have found typical rates of approximately one-third of teachers surveyed who have reported their job as stressful or extremely stressful (Kyriacou, 1987; Gold and Roth, 1993).
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