Postdiagnosis personal growth in an Australian population of parents raising children with developmental disability

Background Parenting a child with a developmental disability presents a variety of long-term physical and emotional challenges. When exploring parent wellbeing, the disability field is dominated by a deficit model despite parents reportedly demonstrating coping and resilience. The current study is embedded in a salutogenic theory (Antonovsky, 1979) and explores the potential for parents of children diagnosed with a developmental disability to undergo positive changes. Method Participants were 6 fathers and 27 mothers who completed measures of distress and posttraumatic growth. Results Compared with a number of other Australian samples, participants reported significantly higher levels of posttraumatic growth. Reports of growth did not negate reports of distress. Results also indicated that constructs of distress and growth were independent. Conclusions The research has important implications for disability support services, reminding providers to be cognisant of the potential for growth, as well as distress, thereby permitting an atmosphere conducive to exploring such outcomes.

Promoting self-determination for better health and wellbeing for adolescents who have an intellectual disability

The focus of this paper is on an Australian research project that evaluated the effectiveness of a resource called the Ask Health Diary, which is used in the school curriculum to promote self-determination for better health and wellbeing for adolescents who have an intellectual disability. Education and health researchers used questionnaires and interviews to gather data from adolescents attending special schools and special education units located in secondary schools in south-east Queensland, their teachers and their parents/carers. This paper reports on two research questions: First, ‘How did the teachers use the Ask Health Diary to promote self-determination in health?’, and second, ‘How did teachers, parents/carers and students perceive the benefits and value of the Ask Health Diary?’ The findings indicate that the Ask Health Diary provides a sound curriculum framework for teachers, adolescents and parents/carers to work together to promote self-determination and better health outcomes for young people who have an intellectual disability.

Use of a photographic food diary method to document dietary intake in people with Parkinson's Disease

Cognitive impairment and physical disability are common in Parkinson’s disease (PD). As a result diet can be difficult to measure. This study aimed to evaluate the use of a photographic dietary record (PhDR) in people with PD. During a 12-week nutrition intervention study, 19 individuals with PD kept 3-day PhDRs on three occasions using point-and-shoot digital cameras. Details on food items present in the PhDRs and those not photographed were collected retrospectively during an interview. Following the first use of the PhDR method, the photographer completed a questionnaire (n=18). In addition, the quality of the PhDRs was evaluated at each time point. The person with PD was the sole photographer in 56% of the cases, with the remainder by the carer or combination of person with PD and the carer. The camera was rated as easy to use by 89%, keeping a PhDR was considered acceptable by 94% and none would rather use a “pen and paper” method. Eighty-three percent felt confident to use the camera again to record intake. Of the photos captured (n=730), 89% were of adequate quality (items visible, in-focus), while only 21% could be used alone (without interview information) to assess intake. Over the study, 22% of eating/drinking occasions were not photographed. PhDRs were considered an easy and acceptable method to measure intake among individuals with PD and their carers. The majority of PhDRs were of adequate quality, however in order to quantify intake the interview was necessary to obtain sufficient detail and capture missing items.

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.

Motivation in children with intellectual disabilities

This article addresses the questions of whether there are motivational deficits in children with intellectual disabilities, whether those with Down syndrome are more likely to display motivational deficits, and how motivation might be supported. The available literature that has examined motivation in children with intellectual disabilities was considered and integrated to address the questions outlined above. There is little published research on this vital topic. Reports on motivational problems differ depending upon the method of data collection. Observational studies using structured tasks generally reveal no differences between children with intellectual disabilities and typically developing children matched for mental age. When reports of parents or teachers are used, children with intellectual disabilities appear to have deficits in motivation. No evidence was found for a particular deficit in children with Down syndrome. The results of this review challenge the perception that children with intellectual disabilities will generally have motivational problems, although it is clear that motivation is a complex construct, not easily examined in those with intellectual disabilities. Strategies for addressing problems and for maintaining motivation, based on theory and evidence, are provided. These strategies are applicable across a range of settings including the home, school, and more adult-oriented services.

Do children and adolescents with Down syndrome have deficits in motivation?

There appears to be a general acceptance that individuals with intellectual disability (ID) have deficits in motivation. Yet research with infants and young children has usually identified few differences in motivation for children with ID compared with those of the same mental age who are developing typically. Studies of motivation in children with ID in the middle years of childhood or adolescence are almost non-existent. However, research conducted more than 30 years ago (Harter & Zigler, 1974) continues to be cited as evidence of motivational deficits in those with ID even though the life experiences of people with ID have changed dramatically since that time.

The quik fix study : a randomised controlled trial of brief interventions for young people with alcohol-related injuries and illnesses accessing emergency department and crisis support care

Background: Alcohol is a major preventable cause of injury, disability and death in young people. Large numbers of young people with alcohol-related injuries and medical conditions present to hospital emergency departments (EDs). Access to brief, efficacious, accessible and cost effective treatment is an international health priority within this age group. While there is growing evidence for the efficacy of brief motivational interviewing (MI) for reducing alcohol use in young people, there is significant scope to increase its impact, and determine if it is the most efficacious and cost effective type of brief intervention available. The efficacy of personality-targeted interventions (PIs) for alcohol misuse delivered individually to young people is yet to be determined or compared to MI, despite growing evidence for school-based PIs. This study protocol describes a randomized controlled trial comparing the efficacy and cost-effectiveness of telephone-delivered MI, PI and an Assessment Feedback/Information (AF/I) only control for reducing alcohol use and related harm in young people. Methods/design: Participants will be 390 young people aged 16 to 25 years presenting to a crisis support service or ED with alcohol-related injuries and illnesses (including severe alcohol intoxication). This single blinded superiority trial randomized young people to (i) 2 sessions of MI; (ii) 2 sessions of a new PI or (iii) a 1 session AF/I only control. Participants are reassessed at 1, 3, 6 and 12 months on the primary outcomes of alcohol use and related problems and secondary outcomes of mental health symptoms, functioning, severity of problematic alcohol use, alcohol injuries, alcohol-related knowledge, coping self-efficacy to resist using alcohol, and cost effectiveness. Discussion: This study will identify the most efficacious and cost-effective telephone-delivered brief intervention for reducing alcohol misuse and related problems in young people presenting to crisis support services or EDs. We expect efficacy will be greatest for PI, followed by MI, and then AF/I at 1, 3, 6 and 12 months on the primary and secondary outcome variables. Telephone-delivered brief interventions could provide a youth-friendly, accessible, efficacious, cost-effective and easily disseminated treatment for addressing the significant public health issue of alcohol misuse and related harm in young people. Trial registration: This trial is registered with the Australian and New Zealand Clinical Trials Registry ACTRN12613000108718.

Disability Standards For Education 2005 (Cth): sword or shield for Australian students with disability?

This article explains the scope and effect of the Disability Standards for Education 2005 (Cth) (the ‘Standards’) and considers whether they operate as a legislative sword or shield in respect of the battle to protect the education rights of people with disabilities in Australia. Evidence suggests that the Standards would be a more effective weapon if there were greater understanding of how they oblige education providers to make reasonable adjustments to their policies and practices to support access for and participation by students with disabilities.

Better health outcomes for people with physical disabilities in China through audits of mobility related access : a research and implementation need

China has 85 million people with disabilities, 30% of whom have a physical disability(1). Up to 2006, overall disability rates increased by 0.5% per year, more for males and in rural areas, and rates of physical disability increased by 11.2% per year(2). With population ageing the proportion of people with disability will increase even faster. In May 2014 the 67th World Health Assembly adopted a resolution endorsing the WHO Global Disability Action Plan 2014–2021. One of its three objectives is “to remove barriers and improve access to health services and programmes”. Access to transport contributes to positive health outcomes both directly and indirectly (e.g. access to economic opportunities, which is associated with better health)(3). However, once people with physical disabilities leave their dwellings they are confronted with physical barriers to their mobility, ranging from the condition/provision of paths to the cost/availability of transport and access to buildings. In addition, their mobility restrictions increase their vulnerability as road users, exposing them to a higher risk of injury through road crashes. QUT's School of Public Health and Social Work (PHSW) and and Centre for Accident Research and Road Safety-Queensland (CARRS-Q) CARRS-Q have been collaborating on development of a combined disability audit and road safety access tool that can identify transport barriers and safety issues along the routes taken by people with disabilities, to enable prioritisation of actions to address these issues. There are also spin-off benefits for other road users from addressing the rising toll of disability through road crashes in China(4). The tool has undergone initial proof-of-concept testing in India and Viet Nam, and is currently being assessed in Cambodia and Laos. Given the rapid development of China, increases in rates of physical disability and the impacts of an ageing population, it is proposed to establish collaborative research through the Australia-China Centre for Public Health to (1) tailor the combined road safety audit and disability access tool for use in China; (2) evaluate its use on a sample of routes; (3) develop plans for changes to the routes in consultation with local authorities; (4) evaluate the effectiveness of implemented changes in terms of access and health. 1. Zheng, Q, et al, 2014. Health and Quality of Life Outcomes, 12:25. 2. Zheng, X, et al, 2011. Bull World Health Org, 89:788–797. 3. Götschi, T & Kahlmeier, S, 2011. Integrated Transport, Health, and Sustainability Assessment (INTHESA): Final Report. Institute of Social and Preventive Medicine, University of Zurich. 4. Lin, T, et al, 2013. J Public Health, 35:541–547.

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.

Post-school needs of young people with high-functioning Autism Spectrum Disorder

This study describes the post-school circumstances and service needs of older teenagers and adults with high-functioning Autism Spectrum Disorder, living in Queensland, Australia. The respondents were 95 parents. Results indicated that the majority of the young people lived in the family home and were unemployed. Of those who worked, 56% had unskilled jobs. They were estimated to spend a significant proportion of their time engaged in solitary, technology-based activities, and comparatively little time in employment or socialising. Parents rated employment support as the greatest service priority for their sons and daughters, followed by specialised support to assist with completing post-school education and training, assistance to support the transition from high school to adulthood, and social skills training.

Seamless journeys : enhancing accessibility to work through digital technologies for people with mobility-related impairments

Numerous disruptions and barriers are encountered by persons with mobility-related disabilities in their daily’s experience of going to work and the pressure these exert on gaining and maintaining their employment. The nature and extent of their difficulties to workforce participation entails a requirement for extensive planning and also strategies to address problems of being stranded (for example, when the bus they are waiting for is not accessible). This paper presents the conceptualisation and methods of understanding workforce participation as a journey, and a discussion on the role digital technologies play in helping people with mobility-related disabilities in their journeys to work and mitigating disruptions when these occur. This is presented through an initial case study that helped identify the sequence of supports needed to be in place to make the work journey possible. Importantly, the paper also highlights points of intervention for the use of digital technologies and where design can potentially help to enhance accessibility to work for people with mobility-related impairments by making journeys to work seamless.

“Well this is it. Just get on with it”: Pain willingness and activity engagement in people with chronic pain

Pain is recognised as a problem of significant concern worldwide and in the latest Global Burden of Disease Study, low back pain was identified as the biggest contributor worldwide to Years Lived with Disability. There is evidence to suggest that people who accept their chronic pain have a higher quality of life, lower levels of disability and distress, and function better emotionally, socially and physically. Findings on the specific pathways linking pain acceptance to quality of life outcomes are less clear. the two widely accepted pain acceptance factors, pain willingness and activity engagement, have not been well explored in qualitative studies on acceptance of chronic pain. To address this deficit in the literature, the current study has two related aims: 1) to explore pain willingness and activity engagement in the lives of people with chronic pain, and ; 2) to find out what people believe helps them to successfully get on with life in spite of chronic pain.