Ethics guidelines for international multi-centre research involving people with intellectual disabilities

This position statement endorsed by the International Association for the Scientific Study of Intellectual Disabilities is designed to promote and facilitate research projects affecting and involving people with intellectual disabilities. The paucity of dedicated research infrastructure and expert ethical review processes to oversee research in this field, especially in developing countries, is asserted as a major issue to be addressed by both the scientific community and governments. International multicenter collaboration has been proposed as a means of addressing these problems. The statement draws on internationally recognized documents outlining the ethical considerations involved in human research activities. It interprets these documents in light of the particular needs and interests of people with intellectual disabilities and incorporates international consultation involving researchers from a variety of disciplines. It affirms the importance of ethical decision making in local communities. Specific recommendations are made concerning ethical review processes, research design considerations, consent processes and the conduct of research involving and affecting people with intellectual disabilities, their families and communities. Research proposals, especially those for international, multicenter projects, need to take into account cultural diversity among participants and differing legal requirements across jurisdictions, while at the same time maintaining the scientific rigor of the research protocol. Promoting partnerships between researchers and people with intellectual disability, together with their families, advocates and local communities are important considerations when developing research projects. Similarly, the development of strategies to both communicate findings to participants and their communities, and to promote their community's access to the benefits of these findings are all important ethical considerations.

Positioning people with intellectual disabilities as the experts : enhancing pre-service teachers’ competencies in teaching for diversity

The need for graduate teachers to own their professional responsibilities to engage successfully with students with special educational needs (SENs) in mainstream classrooms has been recognised in educational policies and programmes in many countries for well over two decades. Despite wide-ranging research, questions remain as to how pre-service education courses can help beginning teachers to develop the required commitment, knowledge and pedagogies to feel confident in teaching students with disabilities. Challenges to find new ways to enhance pre-service teachers’ familiarity with special needs children, overcome resistance from some towards including SEN students in mainstream classrooms and develop a sense of efficacy in teaching are common to many programmes. In this paper, we report on a pilot study where adults with intellectual disabilities, as members of a community theatre, were positioned as the experts and explored their schooling experiences and personal biographies with soon-to-be graduate teachers in a 3 h workshop. Taking the lead and working collaboratively with the workshop participants, members of Fusion Theatre used drama activities to develop understandings of strategies that helped them to learn. By challenging the traditional power relationships between those labelled as ‘disabled’ and those who would be teachers, the workshop helped the participants to engage on many levels. Here, we report on the data, analyse the findings and discuss implications for other pre-service programmes.

Sport in the lives of young people with intellectual disabilities: negotiating disability, identity and belonging

Whilst there is now a growing body of sociological research on the role of sport in the social, gender and identity rehabilitation of people with physical impairments, research on the role of sport in the lives of people with intellectual disabilities primarily focuses on improving fitness, health and social interactions. Yet sport is not only a form of physical exercise, competition or leisure—it is also a powerful social institution within which social structures and power relations are reproduced and, less frequently, challenged. This paper provides insights into the role of sport and physical activity in the lives of four young Australians with intellectual disabilities or cognitive limitations from their own perspectives. Data from life history interviews elicits rich and in-depth insights, revealing that the meanings these young people give to their sporting experiences include—but also go beyond—concerns with fitness, health and social interactions. Though by no means representative of the role of sport for all young people with intellectual disabilities, it is evident that these four young people use sport to negotiate complex emotional worlds around disability, identity, and belonging—much like their physically impaired counterparts.

Attitudes towards people with intellectual disability : an Australian perspective

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported "social desirability" were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended.

The measurement of subjective wellbeing in people with intellectual disability in Australia

The importance of measuring quality of life, and most particularly the personal wellbeing of people with intellectual disabilities (ID), is now recognized. The measurement of wellbeing is an important component of program evaluation and can assist in the identification and planning of individualized support needs. There remains, however, a need for further research in this area. This paper describes a new scale, the Personal Wellbeing Index Intellectual Disability Scales (PWI-ID), which has been shown to be valid and reliable. Data is presented regarding its use in the measurement of wellbeing in people with ID and the focus of discussion is on its advantages and limitations.

Knowledge and perceptions of newly graduated medical practitioners in Malaysia of their role in medical care of people with developmental disabilities

Improving content and consistency on developmental disabilities in undergraduate medical curricula has been recommended as a means of improving health outcomes for people with developmental disabilities. Although often the subject of studies in Western countries, little is known about content on developmental disabilities in undergraduate curricula in developing countries. A study was undertaken to: (1) explore content and experience with developmental disabilities received in undergraduate training by medical practitioners in Malaysia; and (2) explore perceptions of their role in the identification and management of developmental disabilities in practice. Comparisons were made according to location of training. Data were collected using a 107-item questionnaire that was administered to 230 newly graduated house officers on their first rotations in seven public hospitals in Peninsula Malaysia. Deficits and inconsistencies were indicated in both content and experience of developmental disabilities during training. Uncertainty about their role in the identification and management of developmental disabilities was evident. Greater inconsistencies and deficits were evident for respondents trained in Eastern and Middle Eastern countries compared with those trained in Malaysia and Western countries. Results suggest a need for increased content, consistency, and intentional exposure in relation to developmental disabilities during undergraduate training across all training settings.

Police perceptions of interviews involving children with intellectual disabilities: a qualitative inquiry

This study employed a qualitative method to explore the experiences of 20 police officers when interviewing children with intellectual disabilities. Three main themes were interpreted as representing challenges to the officers when interviewing special-needs children: police organizational culture, participants' perceptions of these children as interviewees, and prior information. Participants in this inquiry mentioned poor organizational priority within the police force for child abuse cases and children with intellectual disabilities, as well as inadequate support for interviewing skills development and maintenance. Participants also attempted to equalize these children by interviewing them in the same way as their mainstream peers. Finally, participants viewed interview preparation as influential in determining an interview's successful outcome, but recognized that preparedness could bias their interviewing techniques. Increased attention towards these issues will provide a basis for developing strategies to minimize such challenges and thus improve the quality of interviews with children with intellectual disabilities.

Bad, mad and sad : developing a methodology of inclusion and a pedagogy for researching students with intellectual disabilities

A critical question for me as a teacher/researcher in the field of inclusive education is how to reposition children with moderate and severe intellectual disabilities as participants rather than subjects in the debate. In this paper, I develop a methodology of inclusion that comprises an ethics of consent and a pedagogy for research participation that is an opportunity not only to teach, but also to create a new discursive space for six children to speak. The discussion explores a range of methodological and interpretive strategies for including children with significant intellectual disabilities in research: issues of informed consent, the negotiation of power relations and the ways in which this innovative pedagogy can be empowering beyond the research situation. The use of this methodology has provocative implications concerning what might be learned about forging a link between the struggle for change and educational policy/practice if other researchers worked towards creating spaces for these most marginalized children to speak.