A sense of control : virtual communities for people with mobility impairments

The purpose of this book is to show why we should be concerned about virtual communities for people with physical, or more particularly mobility, impairments. The well-being model through a virtual community introduced here goes towards advancing the work begun by others, by adding for example a socio-political component. The model presented here provides practical insights into how strategic community investment can support people with disabilities and their families. Virtual communities are about engagement, quality of life and support, not just about information. The role of information technology in building and raising community capacity and social capital in socially and economically disadvantaged communities is also examined. Practical insights are offered into community support for people with chronic illness.

Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

The role of physical activity in the lives of people with lymphoedema following cancer treatment : a social constructionist study

Lymphoedema is a chronic condition predominantly affecting the limbs, although it can involve the trunk and other areas of the body. It is characterised by swelling due to excess accumulation of fluid in body tissues. Secondary lymphoedema, which arises following cancer treatment, is the more common form of lymphoedema in developed countries. At least 20% of those diagnosed with the most common cancers will develop lymphoedema. This is a concern in Australia as incidence of these cancers is increasing. Cancer survival rates are also increasing. Currently, this equates to 9 300 new cases of secondary lymphoedema diagnosed each year. Considerable physical and psychosocial impacts of lymphoedema have been reported and its subsequent impact on health-related quality of life can exacerbate other side effects of cancer treatment. Exercise following cancer treatment has been shown to significantly reduce the impact of treatment side effects, improve quality of life and physical status. While participating in exercise does not increase risk nor exacerbate existing lymphoedema, reductions in incidence of lymphoedema exacerbations and associated symptoms have been observed in women participating in regular weight lifting following breast cancer treatment. Despite these benefits, lymphoedema prevention and management advice cautions people with lymphoedema against „repetitive use. or „overuse. of their affected arm. It is possible that this advice creates a barrier to participation in physical activity; however, little is known about the relationship between physical activity and lymphoedema. In addition, the majority of studies examining the experiences of people living with lymphoedema and the impact of the condition have been predominantly conducted internationally and have focused on women following breast cancer. This study sought to explore firstly, how men and women construct their experience of living with lymphoedema following treatment for a range of cancers in the context of everyday life in Australia; and secondly, to analyse the role of physical activity in the lives of those living with lymphoedema following cancer treatment. A social constructivist grounded theory approach was taken to explore these objectives as it is acknowledged that human actions and the meanings associated with these actions are influenced by the interaction between the self and the social world. It is also acknowledged that the research process itself is a social construction between the researcher and participant. Purposive sampling techniques were used to recruit a total of 29 participants from a variety of sources. Telephone interviews and focus groups were conducted to collect data. Data were concurrently collected and analysed and analysis was conducted using the constant comparative method. The core category that developed in objective one was „sense of self‟. The self was defined by perceptions participants held of themselves and their identity prior to a lymphoedema diagnosis and changes to their perceptions and identity since diagnosis. Three conceptual categories which related to each other and to „sense of self‟ were developed through the process of coding that represented the process of how participants constructed their experiences living with secondary lymphoedema in the context of everyday life. Firstly, altered normalcy reflected the physical and psychosocial changes experienced and the effect it had on their lives. Secondly, „accidental journey‟ reflected participants‟ journey with the heath care system prior to diagnosis through to longer term management. Thirdly, renegotiating control revealed participants perceived control over lymphoedema and their ability to participate in daily activities previously enjoyed. These findings revealed the failure of the broader health system to recognise the significant and chronic nature of a lymphoedema diagnosis following cancer treatment with greater understanding, knowledge and support from health professionals being needed. The findings also reveal access to health professionals trained in lymphoedema management, a comprehensive approach encompassing both physical and psychosocial needs and provision of practical and meaningful guidelines supported by scientific evidence would contribute to improved treatment and management of the condition. The key findings for objective two were that people with lymphoedema define physical activity in different ways. Physical activity post-diagnosis was perceived as important by most for a variety of reasons ranging from everyday functioning, to physical and psychosocial health benefits. Issues relating to the impact of lymphoedema on physical activity related to the impact on peoples‟ ability to be physically active, confusion about acceptable forms of physical activity and barriers that lymphoedema presented to being physically active. A relationship between how people construct their experiences with lymphoedema and the role of physical activity was also established. The contribution of physical activity to the lives of people living with lymphoedema following cancer treatment appeared to be influenced by their sense of self as socially constructed through their experiences prior to diagnosis and following diagnosis with lymphoedema. The influence of pre-lymphoedema habits, norms and beliefs suggests the importance of effective health promotion messages to encourage physical activity among the general population and specific messages and guidelines particular to the needs of those diagnosed with lymphoedema following cancer treatment. The influence of participant.s social constructions on the lymphoedema experience highlights the importance of improving interactions between the overall health care system and patients, providing a clear treatment plan, providing evidence-based and clear advice about participation in appropriate physical activity, which in doing so will limit the physical and psychosocial effect of lymphoedema and providing comprehensive physical and psychosocial support to those living with the condition and their families. This study has contributed to a deep understanding of people.s experiences with lymphoedema following cancer treatment and the role of physical activity in the context of daily life in Australia. Findings from this study lead to recommendations for advocacy, a comprehensive approach to diagnosis, treatment and management, and specific areas for future research.

People with ID as active participants in nursing research : a literature review.

Aim: The movement from a medical model of disability to a more social model implies an imperative to include the views of people with ID in research regarding their care. Contemporary quality processes in improving care require consumer involvement at many levels and in doing so have shown better outcomes. A New Zealand research study is being undertaken utilizing focus groups with people with ID to understand their experiences during a psychiatric inpatient admission. The primary focus of this presentation will concern the literature review, undertaken as part of the study, of research in which people with ID have participated. Method: The literature review was conducted using a variety of electronic databases and search terms to identify studies with people with ID as active participants. Results: Only a few studies have been undertaken with people with ID as participants. While these studies demonstrate numerous benefits in including the voice of the person with ID this still remains absent from much of the research discourse. Conclusion: It is accepted and indeed advocated that people with ID have the same rights as others in regard to choosing whether or not they wish to participate in research. High response rates in the few identified studies indicated that people with ID are eager to be consulted. It is recommended that the unique needs of people with ID be taken into account in the research evidence base for future services.

The effect of education programs on paratransit demand of people with disabilities

We describe a passenger education program to encourage responsible use of paratransit by people with disabilities. We use state-of-the-art econometric techniques to evaluate its success. We find that it has moderate effects on demand for transportation but large effects on how passengers use the transportation. In particular, passengers are more responsible about meeting the transportation at the curb rather than waiting for help inside their home. Cost-benefit analysis of the program suggests that it is a long-term worthwhile activity.

Vulnerability to loneliness in people with intellectual disability: an explanatory model

Research with typically developing groups has identified loneliness as a significant predictor of a range of physical and mental health problems. This paper reviews research about loneliness in children and adults with intellectual disability. Although a considerable body of evidence has highlighted the difficulties individuals with intellectual disability have with friendships, there is a relative scarcity of research focused explicitly on loneliness. The available evidence suggests that up to half of those with intellectual disability are chronically lonely, compared with around 15-30% of people in the general population. The cognitive, physical and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness. We argue that people with intellectual disability are highly vulnerable to loneliness and present a theoretical model of vulnerability that comprises three reciprocally influencing domains: social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. We propose that societal views which have traditionally devalued and stigmatised those with intellectual disability limit their opportunities for experiencing social and emotional connectedness with others. Individual skill deficits in areas such as communication, self-regulation and social understanding, as well as functional difficulties associated with intellectual disability, also potentially influence the opportunities and experiences of people with intellectual disability, both directly and via multiple layers of the social context. In turn, limited opportunities will entrench particular skill deficits and reinforce negative attitudes towards intellectual disability. Future research about loneliness and intellectual disability needs to address the difficulties of measuring emotional isolation in this population, as well as the possibility that people with intellectual disability may understand, experience and interpret loneliness somewhat differently from others. The model proposed in this paper provides a starting point for developing a more sophisticated understanding of the experience of loneliness for individuals with intellectual disability.

Experiences of leaving prison for people with intellectual disability

Purpose – The support given to prisoners when they leave prison has a bearing on their success in starting a new life and on community safety. This paper aims to examine the community re-entry experiences of ten people with an intellectual disability in Queensland, Australia. Design/methodology/approach – The findings in this paper are part of a wider study on the life stories of ex-prisoners with an intellectual disability. Seven male and three female participants with intellectual disability were interviewed using a semi-structured life story method. Interviews were respectful of the communication styles of participants and involved multiple interview sessions, ranging from two to nine interviews per person. Data were analysed using narrative and thematic analysis with the assistance of NVivo 8 software. Findings – Participants found the process of leaving prison an emotional event, often clouded with both confusion about when release was to occur, and uncertainly as to what they could expect on the outside. The need for concrete information and coordinated hands-on assistance in negotiating supports in the community have significant implications for correctional and community services. Originality/value – This study captures the perspectives of people with intellectual disability on community re-entry. These perspectives are often overlooked in policy and practice developments in the field of corrections. Yet without understanding this group, the field is unable to address their particular needs.

Rove n Rave™ development : a partnership between the university and the disability service provider to build a social website for people with an intellectual disability

Rove n Rave ™ is a website designed and created for, and with, people with an intellectual disability. Its aim is to provide them with a user-friendly online platform where they can share opinions and experiences, and where they can find reviews which will help them to choose a place to visit themselves. During the development process, input on design requirements was gathered from a group of people with an intellectual disability and the disability service provider. This group then tested the product and provided further feedback on improving the website. It was found that the choice of wording, icons, pictures, colours and some functions significantly affected the users' ability to understand the content of the website. This demonstrated that a partnership between the developer and the user is essential when designing and delivering products or services for people with an intellectual disability.

Designing with people with disabilities : adapting best practices of DIY and organizational approaches

Individualization of design is often necessary particularly when designing with people with disabilities. Maker communities, with their flexible Do-It-Yourself (DIY) practices, offer potential to support individualized and cost-effective product design. However, efforts to adapt DIY practices in designing with people with disabilities tend to face difficulties with regard to continuous commitment, infrastructure provision and proper guidance. We carried out interviews with diverse stakeholders in the disability services sector and carried out observations of local makerspaces to understand their current practices and potential for future collaborations. We found that makerspace participants face difficulties in terms of infrastructure provision and proper guidance whereas Disability Service Organizations face difficulties in continuous expertise. We suggest that artful infrastructuring to blend the best of both approaches offers potential to create a sustainable community that can design individualized technologies to support people with disabilities.

Designing a digital experience for young children with developmental disabilities

This paper reports on the development of a playful digital experience, Anim-action, designed for young children with developmental disabilities. This experience was built using the Stomp platform, a technology designed specifically to meet the needs of people with intellectual disability through facilitating whole body interaction. We provide detail on how knowledge gained from key stakeholders informed the design of the application and describe the design guidelines used in the development process. A study involving 13 young children with developmental disabilities was conducted to evaluate the extent to which Anim-action facilitates cognitive, social and physical activity. Results demonstrated that Anim-action effectively supports cognitive and physical activity. In particular, it promoted autonomy and encouraged problem solving and motor planning. Conversely, there were limitations in the system’s ability to support social interaction, in particular, cooperation. Results have been analyzed to determine how design guidelines might be refined to address these limitations.

The effectiveness of communication interventions in providing older people with information on access to in-home health and social care services: A systematic review protocol

The objective of this review is to locate, critically appraise and synthesize evidence on the effectiveness of communication strategies for providing older people access to information regarding in-home health and social care services. The review question is: What is the effectiveness of communication interventions in providing older people with information about in-home health and social care services?

The transition to school of children with developmental disabilities : views of parents and teachers

The transition from early intervention programs to inclusive school settings presents children with developmental disabilities with a range of social challenges. In Queensland, in the year of transition to school, many children with developmental disabilities attend an Early Childhood Development Program for 2 to 3 days each week and also begin attendance in a mainstream program with the latter increasing to full-time attendance during the year. Quantitative and qualitative data were collected by parent interviews and teacher questionnaires for 62 children participating in the Transition to School Project regarding their perceptions of the success of the transition process and the benefits and challenges of inclusion. Both parents and teachers saw a range of benefits to children from their inclusion in ‘regular’ classrooms, with parents noting the helpfulness of teachers and their support for inclusion. Challenges noted by parents included the school’s lack of preparation for their child’s particular developmental needs especially in terms of the physical environment while teachers reported challenges meeting the needs of these children within the context and resources of the classroom. Parents were more likely than teachers to view the transition as easy. Correlational analyses indicated that teachers were more likely to view the transition as easy when they felt that the child was appropriately placed in a ‘regular’ classroom. Findings from this project can inform the development of effective transition-to-school programs in the early school years for children with developmental disabilities.

Ageing of people with an intellectual disability: Effective training for frontline workers

While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribute to improved quality of life for people with an intellectual disability. The study identifies training needs analyses and 'ready-to-deliver' training programs for frontline disability services staff working with adults with an intellectual disability who are ageing, assesses whether the training programs contribute to improved quality of life outcomes for service users, and makes recommendations for future research and development of training for disability services staff who work with older people with intellectual disability.