Erin Wilson

Comparative effectiveness report: online survey tools

Purpose. A group of Australian researchers seeking an accessible online survey tool discovered to their concern that most commercially available survey tools are not actually ‘useable’ by a significant number of assistive technology users. Method. Comparative effectiveness analysis of 11 popular survey tools. A bespoke survey tool was subsequently created to meet all accessibility guidelines and useability criteria as determined by the wide range of assistive technology users with whom the research team was working. Results. Many survey tools claim accessibility status but this does not reflect the actual situation. Only one survey met all compliance points; however, it was limited by inflexible layout and few options for question types; some surveys proved unusable by screen reader. All surveys reviewed represented a compromise between accessibility and breadth of functionality. Conclusion. It would appear the voices of a proportion of people living with disability are absent from the data collected by surveys, and that current accessibility guidelines, even where implemented, still fall short of assuring useable survey tools. This article describes one online solution created to successfully survey a broad population, and outlines a design approach to encompass user diversity.

Re-conceptualizing disability and assistive technology: Australian consumers driving policy change

For people living with a disability, enablers such as assistive technologies, environmental modifications and personal care can make the difference between living fully and merely existing. This article is written from the standpoints of people with disabilities and professionals in one Australian State who found their government and service system to be a constraining rather than an enabling force. It presents two key components of policy and practice change in the area of assistive technology: challenging understandings of disability, assistive technology, and the desired life outcomes that assistive technology contributes to; and building a public evidence base through consumer-focussed research. In short, government funding of assistive technology needs to move beyond a limited focus on functional needs and take responsibility for fully equipping people to live the lives they aspire to.

Assessing behaviour support plans for people with intellectual disability before and after the Victorian Disability Act 2006

Abstract Background This study sought to elucidate the extent to which behaviour support plans for people with intellectual disability are inclusive of best practice criteria, with a comparison made prior to and following proclamation of the Disability Act (2006) in Victoria, Australia. Method This study used a data collection instrument developed by the researchers incorporating best practice criteria as identified in the review of literature and Victorian legislative requirements. The instrument was used to assess a sample of behaviour support plans. Results Best practice criteria are inadequately included in behaviour support plans with little difference between pre- and post-Act plans. Conclusion The results of this study indicate that disability support staff are ill equipped to undertake the complex assessments, planning, and implementation associated with behaviour support strategies, despite the legislative framework that guides and directs this intervention.

Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability

BACKGROUND The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions. METHODS Five people with severe or profound intellectual disabilitys experiences of supported decision making were examined. This article is particularly focused on one participants experiences at the end of his life. RESULTS All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the persons life story, particularly in relation to events that demonstrated preference. CONCLUSIONS Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.

It's More Than the Money: The Relationship between Social Values and Demographic Change in Sustaining a Rural General Practitioner Workforce.

Abstract Historically, rural General Practitioners (GPs) in Australia tended to be male, Anglo, middle-class and in nuclear family structures, whereas the contemporary workforce demographic is increasingly female and of diverse ethnicity. Demographic trends and changing social values of university-educated professionals directly affect services in rural communities. GPs are key providers of primary health care in rural Australia. Despite the dedication of significant resources to recruiting and retaining rural GPs, a significant problem remains. This research project focused on identifying and addressing the family and personal support needs of two cohorts of rural female GPs and rural registrars, as a means of increasing retention in rural areas. In response to the complex and diverse needs articulated by rural GPs and their spouses during the project, the research team worked collaboratively with the participants to implement and evaluate a number of strategies. The project found that the strategies to address family and personal needs could be grouped into three areas: individualised strategies; strategies to do with practice restructure (predominantly aimed at achieving increased family time); and rural development strategies aimed at broader level change in the community. We argue that strategies addressing wider rural community needs (for example, recreation or children’s education) are essential and require cross-sectoral approaches; to date, these have received little attention.

Measuring the outcomes of inclusive communities

The right support enables people to participate in the community and enhances quality of life. This presentation explores the ongoing research related to the Instrument for the Classification and Assessment of Support Needs (I-CAN) (Llewellyn et al., 2007), an online support needs assessment tool conceptually based on the framework of the International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001). The I-CAN holistically considers both ‘‘Health and Well-being’’ and ‘‘Activities and Participation’’ in its assessment of support needs. The comprehensive Individual Support Needs Report works in with Individual Planning (IP) processes to streamline support provision. Discussion will focus on the implementation of the I-CAN and how using the I-CAN in combination with an Active Support model and IPs can assist service providers to enable the people they support to be actively involved in the community and lead a fulfilling life.

Currency and competence of occupational therapists and consumers with rapidly changing technology

Assistive technology was once a specialised field of practice, involving products designed for populations with specific impairments or functional goals. In Australia, occupational therapists have, at times, functioned as gatekeepers to public funding, prescribing products from a predefined list. An expanding range of accessible mainstream products available via international and online markets has changed the meaning and application of assistive technology for many people with disability. In the policy context of consumer choice and cost-effectiveness, have occupational therapists been left behind? This paper describes the change in context for access to assistive technology resulting in expanded possibilities for participation and inclusion. A case study of environmental control systems is used to explore the overlap of mainstream and assistive products and the funding and services to support their uptake. The analysis describes a future policy and practice context in which assistive technology includes a spectrum of products decoupled from access to independent advice and support services. A broader scope of occupational therapy practice has potential to enhance the occupational rights of people with disability and the efficiency and effectiveness of assistive technology provision.

Listening to the voices of children: understanding the human rights priorities of children with disability in Vanuatu and Papua New Guinea

Abstract In developing countries, children with disability lack basic services yet their voices are missing in the development agenda. This article reports on research to investigate the human rights needs and priorities of 89 children with disability aged 5–18 years in Vanuatu and Papua New Guinea. An accessible and inclusive research method was developed to enable children with diverse disabilities to communicate their own views via visual, audio and tactile means. Data were analysed in relation to the Articles of the Convention on the Rights of Persons with Disabilities, identifying a wide range of priority areas including recreation, leisure and cultural life; employment; home and family life; and education. It is proposed that policy and programme responses must take a holistic view of children and their needs, affirming but thinking beyond the importance of education, to address the complexity of the systemic disadvantage faced by children with disability.

The role of retail in social exclusion of adults with complex communication needs including those with IDD

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

The relevance of Article 12 of the UNCRPD (supported decision-making) for people with severe or profound intellectual disability

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.