Getting it right: participatory information research with people with disabilities

Over the past two decades there has been a growing understanding of consumer requirements and advances in the design and development of accessible technology. However, research over the past decade confirms that significant barriers still exist for people with disabilities. These individuals constitute a diverse group of consumers who experience physical, cognitive, literacy, financial and attitudinal barriers to the use of technology or information. They regard themselves as experts on their access issues yet have been provided with few opportunities to participate in technology research that seeks to explore issues and provide consumer-focused solutions.

In this paper, the benefits of collaborative research and the use of participatory methods in a funded research project on accessible telecommunications information are described. The target consumer group for the project was people with significant communication difficulties, a group who are particularly disadvantaged due to speech, literacy and physical access issues with technology and information. The strategies used to facilitate participation are discussed and criteria from Zarb (1992) and Barnes (2003) are used to evaluate the participatory aspect of the project.

Inclusion and accountability: communications research with consumers with disabilities

Over the past two decades there has been an increasing focus on doing research with and for consumers rather than on consumers. Research that is collaborative and inclusive has been called for by people with disabilities. People with disabilities are a group of telecommunications consumers who are disadvantaged because of social barriers and access issues with equipment, services and information. In this paper, the benefits and challenges of collaborative (e.g. participatory, participatory action, emancipatory) research with these consumers and the processes that can facilitate inclusive and accountable research outcomes are addressed. Throughout the paper, four questions will be explored: Who determines which research issues are explored and the methods that are used? What is the level of consumer involvement in the research process? How can academics and government ensure that consumer-focused research is inclusive and participatory? How, and to whom, should research results be made available?

In the first part of the paper, the perspectives on consumer research by people with disabilities are presented. Respect for and appreciation of consumers' views underpins the philosophical stance needed by researchers and funding bodies before serious engagement in empowering, person-centred research can be successful.

In the second part of the paper, there is a focus on defining the features of collaborative research approaches. Participatory research, participatory action research, and emancipatory research are variations that incorporate differing levels of consumer involvement. Each of these, however, embrace shifts in philosophy and methods away from more traditional 'scientific' research. Such changes result in a greater sense of inclusion and project ownership by consumers.

The third part of the paper addresses some of the issues associated with collaborative research for consumers with disabilities, for academic researchers, and for government funding bodies. Differing understandings of the social nature of disablement influence attitudes toward consumer involvement and are demonstrated in the choice of research questions, project aims, and the methodologies used. Differing agendas are reflected in reactions to the traditional project requirements and processes of government, the preferred research methodologies of researchers, and the perceived accountability of researchers or government for the dissemination and sharing of research results. The challenges to successful engagement with consumers in collaborative research have been identified in the literature and a number of strategies recommended (Barnes, 2003; Clear, 1999; Mercer, 2002; Oliver, 1992, 1997; Zarb, 1997). Application of inclusive strategies by researchers and funding bodies is essential for positive change and inclusive, empowering outcomes.

The paper concludes with a case study of a DCITA-funded research project. The project is evaluated using participatory/emancipatory research criteria modified from Zarb (1992) and addresses consumer, researcher, and funding body participation. The four questions used in the discussion of the paper are applied to this particular project. In addition, the benefits and learnings from the project will be compared with the outcomes desired by consumers who espouse collaborative research approaches.

Dealing constructively with negatively evaluated emotional situations: the key to understanding the different reactions of teachers with high and low levels of emotional intelligence

Recent work on the distinctive features of emotions appraised as either negative or positive has links to the investigation of differences in levels of emotional intelligence. In a study with experienced teachers as participants, it was found that emotional reactions to positive or negative situations was moderated by level of emotional intelligence. The reactions to positively charged emotional situations involving students and peers were similar for teachers with high and low levels of emotional intelligence, although the low level group showed somewhat lower likelihood of making an “emotionally intelligent” response compared to the high level group. A much sharper contrast in response likelihood was found for negatively charged emotional situations involving students and peers. Teachers with high levels of emotional intelligence responded quite differently to those with low levels of emotional intelligence. The results indicate the prospect of clarifying a neglected area of exploration of differences in the likely behaviour of teachers differing in levels of emotional intelligence.

Empowerment in early childhood intervention : perspectives of parents of children with disabilities

There have been various changes to the manner in which early intervention services for children with disabilities have been provided in recent decades. One of the most significant paradigm shifts that has accoured pertains to a change in the level of family involvement in early intervention, so that families are now required to be equal partners with professionals in the service provision process. It is now policy in Victoria that early intervention services follow a family-centred model of practice. Services adopting this model aim to empower parents, so that they may have impact on their lives, and the lives of their family members, both during and beyond the years of direct service participation. Much of what is known about empowerment to date is based on theory, author opinion, and research that is largely survey-based. There has been little interview-based research, particulary involving parents of children with disabilities, as well as little Australian research conducted regarding empowerment. To the researcher's knowledge, there has been no interview-based research that specifically asked parents of children with disabilities about their perspectives on empowerment and disempowerment. Parents of children with disabilities are not invited to contribute their opinions in services and research. Empowerment is an individual concept and this research provided parents with an opportunity to express their views on this topic. Parent's perspectives on empowerment are vital for service providers who aim to follow the intervention model required by policy. This research, which was guided by the principles of ecological theory and critical theory, involved to individual semi-structured interviews with 37 Victorian families of children with disabilities. Twenty-one of these families had children currently participating in early intervention services, and 16 families had children of mid-primary school age, who had previously participated in early intervention experiences; the factors that they believe influence empowerment and disempowerment; and helpful and unhelpful experiences with early intervention staff and other people in their lives. Data were analysed primarily inductively, in the context of grounded theory. Responses from the two groups of parents were then compared, as were different emergent themes according to helpfulness and empowerment. The nature of enduring empowerment, one of the key objectives of early childhood intervention, was also considered. From the analysis of data, several themes emerged as influential in the empowerment process for both groups of parents including: information, education and knowledge; meeting and talking with other families of children with disabilities; decision-making and choice; having confidence; participation, involvement and input; meeting or addressing families' practical needs; and having a child with a disability. The results of this research provide valuable information for parents, professionals, agencies, organisations, and the wider community, regarding how families can be supported more effectively and how power can be more equitably balanced.

Constructing a Malaysian early intervention programme for children with disabilities

This case study of a parent-initiated community project called Wings Melaka has helped improve provision of early intervention services to Malaysian children with disabilities, and their families, by making contributions specifically to the workplace at Wings Melaka, and more generally, to the much-neglected field of early intervention in Malaysia.

People with disabilities, their rights and sense of citizenship in post-war Iraq

A one day videoconference comprising live interviews

Time trends in socio-economic inequalities for women and men with disabilities in Australia: evidence of persisting inequalities

Introduction The socio-economic circumstances and health of people with disabilities has been relatively ignored in public health research, policy and practice in Australia and internationally. This is despite emerging evidence that the socio-economic circumstances that people with disabilities live in contributes to their poorer health. Compared to other developed countries, Australians with disabilities are more likely to live in disadvantaged circumstances, despite being an economically prosperous country; it is therefore likely that the socio-economic disadvantage experienced by Australians with disabilities makes a significant contribution to their health. Despite the importance of this issue Australia does not routinely monitor the socio-economic inequalities for people with disabilities. This paper addresses this gap by describing time trends in socio-economic conditions for Australians with and without disabilities according to the severity of the disability and sex. Methods Cross-sectional analyses of the Australian Bureau of Statistics Survey of Disability, Ageing and Carers were carried out at three time points (1998, 2003 and 2009) to estimate the proportions of women and men (aged between 25 and 64 years) who were living on low incomes, had not completed year 12, were not in paid work, living in private rental and experiencing multiple disadvantage (three or more of the indicators). Results People with disabilities are less likely to have completed year 12, be in paid work and are more likely to be living on low incomes and experiencing multiple disadvantage. These conditions worsened with increasing severity of disability and increased or persisted over time, with most of the increase between 1998 and 2003. While women with milder disabilities tended to fare worse than men, the proportions were similar for those with moderate and severe/profound disabilities. Conclusion People with disabilities experience high levels of socio-economic disadvantage which has increased or persisted over time and these are likely to translate into poorer health outcomes. A large proportion experience multiple forms of disadvantage, reinforcing the need to tackle disadvantage in a coordinated way across sectors. People with disabilities should be a priority population group for public health. Monitoring socio-economic conditions of people with disabilities is critical for informing policy and assessing the impact of disability reforms.