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.

Why business academics remain in Australian universities despite deteriorating working conditions and reduced job satisfaction : an intellectual puzzle

In the last two decades, Australia's 38 universities have been subjected to profound changes affecting the working lives of their academic staff. That the working conditions of staff have deteriorated cannot be denied, while many studies have shown that job satisfaction has been affected adversely. Paradoxically, there is little evidence that academics are seeking employment outside the university system. In this article, the authors report the findings from their survey of over 3000 academics employed in business disciplines in Australian universities, which aimed to find explanations for this phenomenon.

Making intellectual room for persona studies: a new consciousness and a shifted perspective

It is an enormously difficult—and perhaps impossible, but ultimately important—task to comprehensively define the contemporary moment through a particular concept. This introduction and this journal make the claim that both in a pervasive way and to a pandemic extent, there is enormous activity and energy in the production, construction, and exhibition of personas. Something quite extraordinary has shifted over the last twenty years that has led to this intensive focus on constructing strategic masks of identity. The catalyst is the development of online culture and its invocation to personalize the expression of a public self—essentially a persona—regularly and incessantly. This culture of producing and monitoring our public selves is the focus of this journal as online culture blends with everyday culture and leads to an insistent proliferation of personas for both presentation and for strategic purposes in order to manage very new notions of value and reputation. The task of investigating persona is complex, and is dependent on connections and intersections across an array of disciplines. This journal and the field of Persona Studies is designed to serve as a site for this essential work of comprehending, analysing, and critiquing persona, and to allow disciplines to intersect, exchange ideas, and debate the play of persona historically and in contemporary culture.

Scientists and the cultural politics of academic disciplines in late 19th-century Germany: Emil Du Bois-Reymond and the controversy over the role of the cultural sciences

This article is concerned with interactions between the natural and the human sciences. It examines a specific late 19th-century episode in their relationship and argues that the schism between the two branches of knowledge was due to cognitive factors, but consolidated through the social dynamics of institutionalized disciplines. It contends that the assignment of a social function to the human sciences to compensate for the self-destructive tendencies inherent in the technological society was expressed even by those, at the end of the 19th century, who were fervent advocates of a science- and technology-driven modernization.

Substance abuse by offenders with mild intellectual disability

This study compared the rate of self-reported alcohol and other drug use in a sample of 30 young adults with mild intellectual disability whose offending behaviour had resulted in involvement in the criminal justice system, with a matched comparison group of 30 non-offenders. Performance on an alcohol and other drug knowledge test was also compared. The results indicated that many individuals with mild intellectual disability regularly consumed alcohol and used illicit drugs. Furthermore, the data suggest a possible link between substance abuse and offending behaviour in this population. Individuals who had offended reported greater use of both legal and illicit drugs than their non-offending counterparts and many reported that they had been under the influence of alcohol or illicit drugs at the time of committing the offence that had resulted in their current placement within the criminal justice system. Although deficits in knowledge were apparent in both groups, the offenders demonstrated greater overall knowledge about alcohol and other drugs.

Universities in crisis? Knowledge economies, emancipatory pedagogies, and the critical intellectual

Discrimination against women in public sector organisations has been the focus of considerable research in recent years. While much of this literature acknowledges the structural basis of gender inequality, strategies for change are often focused on anti-discrimination policies, equal employment opportunities and diversity management.Discriminatory behaviour is often individualised in these interventions and the larger systems of dominance and subordination are ignored. The flipside of gender discrimination, we argue, is the privileging of men. The lack of critical interrogation of men’s privilege allows men to reinforce their dominance. In this paper we offer an account of gender inequalities and injustices in public sector institutions in terms of privilege. The paper draws on critical scholarship on men and masculinities and an emergent scholarship on men’s involvement in the gender relations of workplaces and organisations, to offer both a general account of privilege and an application of this framework to the arena of public sector institutions and workplaces in general.

Knowledge and attitudes of lawyers regarding offenders with intellectual disability

People with an intellectual disability appear to be over represented in the criminal justice system and have characteristics that may render them particularly vulnerable. Hypotheses concerning different treatment have been investigated by others through analysis of the attitudes of various criminal justice personnel. The current study extends this work by examining the knowledge and attitudes of Victorian criminal lawyers towards offenders with an intellectual disability. Criminal lawyers (n = 96) responded anonymously to a questionnaire concerning their knowledge of the characteristics of people with intellectual disability and their attitudes regarding the exposure and disposition of this population within the criminal justice system, In addition, respondents were asked to indicate their level of social and professional experience with people with intellectual disability. Results revealed that although the majority of criminal lawyers generally had some understanding of the problems encountered by people with an intellectual disability when they come into contact with the criminal justice system, some deficits that may contribute to vulnerability were evident.

Community integration or community exposure? A review and discussion in relation to people with an intellectual disability

Background: This paper reviews the issue of integration as it applies to people with an intellectual disability. A compelling finding is the almost exclusive orientation of the literature to physical integration within the general community of non-disabled people. Moreover, it seems to be generally assumed that the more frequently people experience such integration the better their lives will be. Methods: We question the validity of this assumption on several grounds. It is social, not physical integration, that has a reliable positive influence on well-being. This is an important conclusion as some disabled people find effective social integration with the general community extremely difficult to achieve. Because of this, the consequences of an overly enthusiastic program of integration for such people has more potential to be more stressful than beneficial. Results: We further argue that, as integration is being pursued to benefit the individual, the essential goal of service provision should be to achieve a sense of community connectedness, rather than being concerned with physical integration within the general community.
Conclusion: It is proposed that such connectedness is more likely to be achieved within the community of people with an intellectual disability.

The development of the nutrition and activity knowledge scale for use with people with an intellectual disability

Background Obesity is an increasing health problem for many Australians, no less so among people with an intellectual disability. Behaviour change aimed at improving nutritional intake and increasing levels of physical activity is a requirement for the reduction of obesity. An essential part of this process is to first ascertain the level of knowledge and beliefs people with an intellectual disability have about these behaviours.

Methods The aim of this study was to develop and psychometrically evaluate a scale to assess levels of nutritional and physical activity knowledge among people with an intellectual disability.

Results Seventy-three people with an intellectual disability completed the interview-rated scale at time 1 and 66 of them completed it again at a 3-week re-test.

Conclusions The scale demonstrated strong factorial construct validity, high internal consistency and good temporal stability. The applications of this scale in future research and in intervention programmes are discussed.

Pharmacological management of challenging behavior of individuals with intellectual disability

In many Westernized countries, including Australia, concerns about the use of psychotropic drugs to manage the challenging behavior of individuals with intellectual disability have resulted in the development of legislative and procedural controls. Although these constraints may limit indiscriminate use, employing medication remains a common practice. This study examined information about 873 individuals (566 males, 307 females) who were the subjects of reports to the Intellectual Disability Review Panel in March 2000 concerning the use of chemical restraint. A high proportion of people with intellectual disability were reported to have received drugs for purposes of behavioral restraint. The range of drugs was extensive, although those from the antipsychotic class were the most frequently reported. Many individuals concurrently received more than one type of drug or more than one drug from the same drug class. More males than females and more older than younger individuals were administered medication. A relationship between gender and age was apparent, with younger males but older females dominating. The use of drugs to mange the behavior of people with intellectual disability may at times be warranted. However, it is important that the extent and type of drug use, as well as the characteristics of those who are medicated, be subject to ongoing scrutiny.

An investigation into the incidence of obesity and underweight among adults with an intellectual disability in an Australian sample

Reports suggest that 7% to 18% of Australian adults are obese and a further 16% to 55% are overweight. Studies from other countries have indicated that obesity among people with an intellectual disability may be at least, or even more, prevalent. Prevalence rates range from 28% to 59%. The aim of the current study was to investigate the weight distribution of an Australian sample of people with an intellectual disability using Body Mass Index (BMI) to classify males and females, and Kelly and Rimmer's (1987) Percentage of Body Fat (PBF) formula to also classify males. Forty-one females and 52 males with a mild to severe intellectual disability were assessed. The correlation between BMI and PBF for males was r=.89. BMI classifications revealed a higher percentage of females as overweight (41.4%) and obese (36.6%) compared to overweight males (30.8%) and obese males (30.8%). There were more underweight males (7.6%) than females (4.9%). There was no relationship between living environment and weight classifications on the BMI. The PBF formula indicated that 73% of the males were classified as obese. The possibility of misclassification using the BMI and the need for weight interventions are discussed.

The effect of intellectual disability on children's recall of an event across different question types

This research examined the performance of 80 children aged 9–12 years with either a mild and moderate intellectual disability when recalling an innocuous event that was staged in their school. The children actively participated in a 30-min magic show, which included 21 specific target items. The first interview (held 3 days after the magic show) provided false and true biasing information about these 21 items. The second interview (held the following day) was designed to elicit the children's recall of the target details using the least number of specific prompts possible. The children's performance was compared with that of 2 control groups; a group of mainstream children matched for mental age and a group of mainstream children matched for chronological age. Overall, this study showed that children with either a mild or moderate intellectual disability can provide accurate and highly specific event-related information. However, their recall is less complete and less clear in response to free-narrative prompts and less accurate in response to specific questions when compared to both the mainstream age-matched groups. The implications of the findings for legal professionals and researchers are discussed.

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.