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.

Cardiovascular health behaviours and health needs among people with psychiatric disabilities

Recent research in Australia has found that people with a mental illness experience higher mortality rates from preventable illnesses, such as cardiovascular disease, respiratory disease and diabetes compared to the general population. Lifestyle and other behavioural factors contribute significantly to these illnesses. Lifestyle behaviours that affect these illnesses include lack of physical activity, consumption of a poor diet and cigarette smoking. Research on the influence of these factors has been mainly directed towards the mainstream population in Australia. Consequently, there remains limited understanding of health behaviours among individuals with psychiatric disabilities, their health needs, or factors influencing their participation in protective health behaviours. This thesis presents findings from two studies. Study 1 evaluated the utility of the main components of Roger’s (1983) Protection Motivation Theory (PMT) to explain health behaviours among people with a mental illness. A clinical population of individuals with schizophrenia (N=83), Major Depressive Disorder (MDD) (N=70) and individuals without a mental illness (N=147) participated in the study. Respondents provided information on intentions and self-reported behaviour of engaging in physical activity, following a low-fat diet, and stopping smoking. Study 2 investigated the health care service needs of people with psychiatric disabilities (N=20). Results indicated that the prevalence of overweight, cigarette smoking and a sedentary lifestyle were significantly greater among people with a mental illness compared to that reported for individuals without a mental illness. Major predictors of the lack of intentions to adopt health behaviours among individuals with schizophrenia and MDD were high levels of fear of cardiovascular disease, lack of knowledge of correct dietary principles, lower self-efficacy, a limited social support network and a high level of psychiatric symptoms. In addition, findings demonstrated that psychiatric patients are disproportionately higher users of medical services, but they are under-users of preventive medical care services. These differences are primarily due to a lack of focus on preventive health, feelings of disempowerment and lower satisfaction of patient-doctor relationships. Implications of these results are discussed in terms of designing education and preventive programs for individuals with schizophrenia and MDD.

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.

Iniatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review. A further 3 papers were obtained through scanning the reference lists of those articles included from the initial literature search. All 14 studies were single-subject designs focusing on initiatives to reduce physical or mechanical restraint. Between the baseline and intervention phases, there were mean reductions in the frequency and duration of restraint use of 79% (SD = 21%, n = 13 subjects from 7 studies) and 45% (SD = 58%, n = 10 subjects from 6 studies), respectively. For studies in which restraint use to manage agitation and aggression was targeted, there was a 79% (SD = 21%, n = 13 subjects from 7 studies) decrease in the frequency and a 28% (SD = 67%, n = 6 subjects from 3 studies) reduction in the duration of restraint. With respect to studies in which restraint use to prevent self-harm was targeted, there was a 71% (SD = 34%, n = 4 subjects from 3 studies) reduction in restraint use. Effect sizes were calculable, using non-overlap approaches, for 9 of the 14 studies. The magnitudes of the effect sizes suggest that, on average, the interventions were effective in reducing the use of restraints. The effects generated in studies where restraint use for self-harm was targeted were typically more pronounced than those in which restraint use for agitation and aggression was addressed. There were broad variations, however, in the percentage reductions in restraint use and in the magnitudes of the effect sizes. Although the findings of this review are encouraging, more research is needed, in which greater attention must be paid to rigorous research design, application, and analysis.

Tweet reach : a research protocol for using Twitter to increase information exchange in people with communication disabilities

Objective: To (a) outline the background to research evaluating Twitter use by people with severe physical and communication disabilities participating actively in online communication forums for increasing information exchange and (b) illustrate a range of potential methods that might be applied in furthering research on the use of social media by people with developmental and acquired communication disabilities. Methods: The literature on communication disabilities, augmentative and alternative communication, and social media research informed the rationale for and design of three studies investigating the use of Twitter by people with communication disabilities. Results: To date, there is little information in the literature about how people with a range of communication disabilities might use Twitter to increase their access to information and help them to feel knowledgeable and in control of their own lives. In this paper, three studies are proposed to investigate the use of Twitter by people with communication disabilities.

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.

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.

The impact of sexual esteem, body esteem, and sexual satisfaction on psychological well-being in people with physical disability

The current study investigated the association between sexuality and psychological well-being in people with physical disabilities. A total of 1,196 participants completed the study. There were 748 participants who had a physical disability and 448 participants who were able-bodied. The results demonstrated that sexual esteem, body esteem, and sexual satisfaction were strong predictors of self-esteem and depression among people with physical disability, and that this relationship was stronger among people with physical disability than able-bodied participants. It was also found that body esteem was more closely associated with self-esteem in disabled women, while sexual esteem was more closely associated with self-esteem in disabled men. The results of the study suggest that researchers and clinicians who are concerned with the psychological health of people with physical disability should consider strategies to improve the body esteem and sexual well-being of people with physical disabilities.

Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability

This study investigated the association between the severity and duration of physical disability and sexual esteem, sexual depression, sexual satisfaction, and the frequency of sexual behavior. A total of 1,196 participants completed the study. There were 748 participants (367 males, 381 females) who had a physical disability and 448 participants (171 males, 277 females) who were able-bodied. The age range of participants was 18–69 years, with a mean age of 36.39 years (SD = 10.41). The results demonstrated that people with more severe physical impairments experienced significantly lower levels of sexual esteem and sexual satisfaction and significantly higher levels of sexual depression than people who had mild impairments or who did not report having a physical impairment. The study also found that people with more severe physical disabilities engaged in mutual sexual activity significantly less frequently. Women with physical disabilities had significantly more positive feelings about their sexuality and significantly more frequent mutual sexual experiences than their male counterparts. For people with physical disabilities, the frequency of oral sex and nude cuddling were significant predictors of sexual satisfaction in men, while the frequency of deep kissing predicted sexual satisfaction in women. Furthermore, the viewing of erotica was significantly related to sexual dissatisfaction in men. Finally, it was found that people who had experienced their physical impairment for a longer period of time reported significantly more positive feelings about their sexuality. Implications of these findings are discussed and suggestions are made for future research.

Relationships, sexuality and adjustment among people with physical disability.

The current study investigated the association between relationship status and the psychological adjustment, sexual esteem and sexual behaviour of people with and without physical disability. A total of 1196 participants completed the study, 748 participants (367 men, 381 women) had a physical disability and 448 participants (171 men, 277 women) were able-bodied. The age range of participants was 18 to 69 years, with a mean age of 36.39 years (SD=10.41). The results demonstrated that physical disability and its severity were related to an increased likelihood of being single. Men with physical disabilities were more likely than women to be single. In terms of psychological adjustment, single people with physical disabilities were more depressed than those who had a partner they did not live with. However, they were not significantly disadvantaged in this area when compared to married people and those in de facto relationships. Relationship status was strongly related to sexual wellbeing in people with and without physical disability, with single people reporting lower levels of sexual satisfaction and sexual esteem as well as less frequent mutual sexual activity. However, married people with physical disabilities reported lower levels of sexual wellbeing than the people who had partners they did not live with. This suggests that among couples where a partner has a physical disability, marriage and live-in relationships may add burdens that do not exist in more casual relationships.