Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Aboriginal art market : intellectual property case studies

The Indigenous Art Market: Intellectual Property Case Studies project is a national study aiming to gain an overview of how intellectual property issues intersect with the Indiegenous artists and the Indigenous art market in Australia. The initiative comes from the Deakin University Centre for Leisure Research Management with funding from the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS

Survey commentaries and analysis on Singapore biotechnology venture capital, intellectual and property regulatory law

The article presents survey commentaries and analysis on biotechnology venture capital, intellectual and property regulatory law in Singapore as of April 2006. The survey revealed that the financial sector and venture capitalists lack the ability to evaluate and understand biotechnology. Some major concerns for stakeholders are the lack of experience in the litigation of cases by Singaporean law firms and the lack of strategic management of portfolios for biomedical and pharmaceutical companies and the government. Stakeholders cited the need for Singaporean laws to be amended to accommodate developments in medical devices, herbal medicine, some biological areas and pre-clinical and clinical trials.

Self-related quality of life scales for people with an intellectual disability : a reply to Ager & Hutton

An earlier publication by the present author concerning quality of life (QoL) measurement has been critiqued by A. Ager and C. Hatton. The present paper addresses the issues raised. It commences with a reappraisal of the Life Experiences Checklist and confirms the present author's view that this instrument is not adequate to measure QoL in accordance with contemporary understanding of the construct. It is argued that QoL scales should include both objective and subjective measurements across a minimum set of domains adequate to embrace the whole life experience. Finally, the usefulness of QoL measurement for people with intellectual disability is debated.

Tracking the nomadic life of the educational researcher :- what future for feminist public intellectual(s) and/in the performative postmodern university

Is the idea of the liberal university dead, has the post modern university any chance of being emancipatory, has the theory practice divide merely collapsed in an era of 'new knowledge work', or has the university just become one aspect of market state and global capitalism. Knowledge based economies simultaneously locate universities as central to the commodification and management of knowledge while the legitimacy of the university and the academic as knowledge producers is challenged by post modernist, feminist, postcolonial and indigenous claims within a wider trend towards the 'democratisation of knowledge' and a new educational instrumentalism and opportunism. What becomes of the educational researcher, and indeed for their professional organizations, in this changing socio political and economic scenario? Is our role one of policy service or policy critique, technical expert or public intellectual? In particular what place is there for feminist public intellectuals in a socalled era of post feminism and public-/private convergence? The paper draws on recent debates around the nature of knowledge based societies, trends in relations between policy and educational research, and draws upon feminist and critical perspectives to mount a case for the importance of the postmodern university and the public intellectual.

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.

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.

'I get by with a little help from my friends' : adults with intellectual disability discuss loneliness

Background This study explored 'loneliness' as experienced by adults with intellectual disability, with 'intermittent' to 'limited' support needs.

Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants' experience.

Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population.

Conclusions The findings demonstrate the effectiveness of combining quantitative and qualitative techniques to enhance understanding of people's perspective when developing support systems to promote their quality of life. Based on participant perspectives, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities on people's post-school social networks appears warranted.

The effect of intellectual disability on the adherence of child witnesses to a “story grammar” framework

BackgroundThis study examined the ability of 78 children (aged 9–12 years) with an intellectual disability (ID) to provide a narrative account of a staged event they had participated in four days earlier.
MethodThe children were interviewed using open‐ended questions. The quality of their responses (using a story grammar framework) was compared with that of two control groups: mainstream children matched for mental and chronological age.
ResultsWhile the children with an ID and those matched for mental age provided narratives of similar length and used similar proportions of each story grammar element, the ID group was less likely than both control groups to provide a narrative account at all. Among those children with an ID who did provide a narrative account, their accounts included proportionately fewer story grammar elements than those of both control groups.
ConclusionChildren with an ID are disadvantaged as witnesses with respect to their ability to provide a detailed and coherent narrative account of events under optimal investigative interviewing conditions.

The utility of the personal wellbeing index intellectual disability scale in an Australian sample

Background Subjective wellbeing (SWB) in people with intellectual disabilities has been the focus of increased interest in the identification of support needs and as an outcome measure for interventions and service delivery evaluations. It is therefore important to conduct further research in this area, and to develop appropriate scales to measure SWB.

Methods A new scale, the Personal Wellbeing Index-Intellectual Disability (PWI-ID) was administered to 114 adults with mild (n = 82) or moderate (n = 32) level ID in Victoria, Australia.

Results The PWI-ID demonstrated good reliability and validity. A comparison of the findings with previous research indicates that participants' SWB levels are within the normative range, and are similar to those reported by the general population.

Conclusions The results support the notion that individuals with ID do not experience life quality lower than normal, which can be explained theoretically by the Theory of Subjective Wellbeing Homeostasis. The use of the PWI-ID may ultimately assist in ensuring that the needs of people with ID are being met and inform the planning and delivery of congruent resources and services.

Depression in people with intellectual disability : an evaluation of a staff-administered treatment program

The prevalence of co-morbid depression in people with intellectual disability (ID) provides a strong rationale for the early identification and treatment of individuals at risk. The aim of this study was to evaluate a staff-administered group CBT program for the treatment of depression in people with mild ID. A sample of 13 staff employed at two community-based disability agencies were trained to deliver the program to 47 individuals with mild ID and symptoms of depression. A wait list control group comprised of 27 individuals subsequently completed the program. Compared to the control group, individuals who had participated in the treatment program showed lower depression scores, and fewer automatic negative thoughts. Furthermore, these changes were maintained at a 3-month follow-up. The results indicate that staff can be trained to deliver a CBT program within community settings that is effective in the reduction of depression symptomatology in people with mild ID.