Virtual worlds for people with autism spectrum disorder: a case study in Second Life

PURPOSE: The purpose of this study is to explore the use of virtual worlds by people with autism spectrum disorder (ASD), with a particular focus on the virtual world Second Life™. METHOD: Case study methodology was selected to explore the experiences of Wolf, a participant with ASD, in Second Life. Wolf participated in three in-depth interviews. The interviews were analyzed using a content analysis to identify themes and sub-themes. RESULTS: Analysis identified four main themes: social factors and communication, empowerment, virtual world versus physical world, and social cues and body language. CONCLUSION: Anecdotally Wolf's experiences suggest that people with ASD enjoy using a virtual world and may feel more comfortable communicating in the virtual world context than the physical world. Virtual worlds offer a venue for people with ASD to be a part of a virtual society, lowers communication barriers experienced in the physical world, and gives the participant a unique opportunity to create and maintain friendships. Virtual worlds offer an arena for people with ASD to meet their peers on equal terms, not being dependent on social cues, which in the physical world can be a barrier for communication for this group. Further research in this area is required. Implications for Rehabiliation People with autism spectrum disorder enjoy using a virtual world and may feel more comfortable communicating in the virtual world context than the physical world. Virtual worlds offer a venue for people with autism spectrum disorder to be a part of a virtual society. Virtual worlds offer an arena for people with autism spectrum disorder to meet their peers on equal terms, not being dependent on social cues, which in the physical world can be a barrier for this group.

Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4), allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of supporters having positive assumptions of decision-making capacity as a factor affecting supported decision-making. This commentary aims to give a focus for practice and policy efforts for ensuring people with severe or profound cognitive disability receive appropriate support in decision-making, a clear obligation of signatory nations of the UNCRPD. A focus on changing supporter attitudes rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Addressing internet training issues for people with Parkinson's disease

The Internet enables access to information, services, support and participation in leisure opportunities. Some populations, including people with disabilities, lack access to these opportunities through the Internet. Barriers may include finances, physical access, lack of resources and inaccessible websites. Limited access to Internet training is an additional barrier for people with communication impairments. People with Parkinson's disease (PD) may have difficulty accessing usual Internet training due to high-level language, cognitive and physical limitations. Aphasia-friendly Internet training materials were trialed with this population to investigate if participants could learn to use the Internet and would benefit from Internet training. The tutors' experience was also investigated using qualitative measures. Seven people with PD were matched with volunteer tutors. These pairs met for six Internet training lessons using training materials available as a free download from: http://dexter.shrs.uq.edu.au/cdaru/aphasiagroups/. Pre and post-test Internet skills assessments and attitudinal questionnaires were conducted. Significant differences between pre and post-test scores were found. Participants reached varying levels of independence on Internet tasks. Favorable outcomes were reported by participants, and tutors reported a positive experience. Further investigation is recommended to determine the efficacy of this approach compared with other training avenues and with other communication-impaired populations. Practical and theoretical implications for speech pathology practice are discussed.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.

Children with Learning Disabilities and Challenging Behaviour: Relationship between Parents and Professionals

This multi-perspectival Interpretive Phenomenological Analysis (IPA) study explored how people in the ‘networks of concern’ talked about how they tried to make sense of the challenging behaviours of four children with severe learning disabilities. The study also aimed to explore what affected relationships between people. The study focussed on 4 children through interviewing their mothers, their teachers and the Camhs Learning Disability team members who were working with them. Two fathers also joined part of the interviews. All interviews were conducted separately using a semi-structured approach. IPA allowed both a consideration of the participant’s lived experiences and ‘objects of concern’ and a deconstruction of the multiple contexts of people’s lives, with a particular focus on disability. The analysis rendered five themes: the importance of love and affection, the difficulties, and the differences of living with a challenging child, the importance of being able to make sense of the challenges and the value of good relationships between people. Findings were interpreted through the lens of CMM (Coordinated Management of Meaning), which facilitated a systemic deconstruction and reconstruction of the findings. The research found that making sense of the challenges was a key concern for parents. Sharing meanings were important for people’s relationships with each other, including employing diagnostic and behavioural narratives. The importance of context is also highlighted including a consideration of how societal views of disability have an influence on people in the ‘network of concern’ around the child. A range of systemic approaches, methods and techniques are suggested as one way of improving services to these children and their families. It is suggested that adopting a ‘both/and’ position is important in such work - both applying evidence based approaches and being alert to and exploring the different ways people try and make sense of the children’s challenges. Implications for practice included helping professionals be alert to their constructions and professional narratives, slowing the pace with families, staying close to the concerns of families and addressing network issues.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

SOLUTIONS: Assistive Technology for People with Brain Injury, February 22, 2016

The Brain A project of the Iowa Department of Public Health and the Iowa Advisory Council on Brain Injuries, produced with assistance from the Iowa Program for Assistive Technology University of Iowa Center for Disabilities and Development and Easter Seals This booklet was supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H21MC26929 titled: Traumatic Brain Injury Implementation. This information or content and conclusions are those of the authors/s and should not be construed as the official position or policy of, nor should any endorsements be inferred by, HRSA, HHS, or the U.S. Government.

Distance Education in the Professionalization of People with Disability and Prison Inmates

This paper illustrates the impact of the Universidad Estatal a Distancia  (UNED, by its Spanish acronym) in supporting and professionalizing the vulnerable groups of the Costa Rican society, including prison inmates, persons with physical disability, individuals from remote areas, among others.  This study attempts to answer this type of questions: What kind of support has been provided to these sectors?  What are the challenges faced by distance education universities to succeed?  How does UNED have solved these challenges?  What is the impact of the Universidad Estatal a Distancia on the Costa Rican society for the professionalization of its population?  Documentation and statistics have been used in the study; in addition, two people who graduated from UNED were selected to illustrate the type of cases the University serves.(1) Translator’s note: It refers to the “Costa Rican Distance Education State University”.

The impact of pain on the quality of life of people with multiple sclerosis: A community survey

The purpose of this study was to examine the impact of pain on functioning across multiple quality of life (QOL) domains among individuals with multiple sclerosis (MS). A total of 219 people were recruited from a regional MS society membership database to serve as the community-based study sample. All participants completed a questionnaire containing items about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the preceding 2 weeks. Respondents who reported pain then completed an in-person structured pain interview assessing pain characteristics (intensity, quality, location, extent, and duration). Comparisons between participants with and without MS-related pain demonstrated that pain prevalence and intensity were strongly correlated with QOL: physical health, psychological health, level of independence, and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. These findings suggest that for people with MS, pain is an important source of distress and disability beyond that caused by neurologic impairments.

Neurocognitive profiles of people with comorbid depression and alcohol use : implications for psychological interventions

Depression and alcohol use disorders frequently co-occur and are highly prevalent. Both conditions are known to impair cognitive functioning, yet research into the role of these impairments in response to Cognitive Behaviour Therapy (CBT) is limited. The purpose of the present study was to examine the relationship between baseline neuropsychological performance, severity of depressive symptoms and alcohol use disorders. Participants with current depression and hazardous alcohol use were functioning in the average range on all neuropsychological measures prior to treatment entry. Baseline measures of drinking severity and a range of cognitive functions were inversely correlated. After controlling for other baseline variables, superior baseline cognitive functioning predicted greater reductions in depression severity after 17 weeks. These predictive effects occurred across both brief and extended interventions. Findings suggest that improvement in depression following psychological treatment is enhanced by greater fluid reasoning ability and is predicted by executive functioning, regardless of the treatment length or problem focus.

Cannabis use and misuse prevalence among people with psychosis

Background: Increasing attention has been given by researchers to cannabis use in individuals with psychosis. As psychoses are relatively low-prevalence disorders, research has been mostly been restricted to small-scale studies of treatment samples.The reported prevalence estimates obtained from these studies vary widely. Aims: To provide prevalence estimates based on larger samples and to examine sources of variability in prevalence estimates across studies. Method: Data from 53 studies of treatment samples and 5 epidemiological studies were analysed. Results: Based on treatment sample data, prevalence estimates were calculated for current use (23.0%), current misuse (11.3%),12-month use (29.2%),12-month misuse (18.8%), lifetime use (42.1%) and lifetime misuse (22.5%). Epidemiological studies consistently reported higher cannabis use and misuse prevalence in people with psychosis. Conclusions: The factor most consistently associated with increased odds of cannabis prevalence was specificity of diagnosis. Factors such as consumption patterns and study design merit further consideration.