Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.

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.

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.

Evaluation of a cognitive behavior therapy program for people with sexual dysfunction

This article reports on an evaluation of a cognitive behavioral program for the treatment of sexual dysfunction. Frequency data are provided on the sexual dysfunction of 95 males (mean age = 41.6 years) and 105 females (mean age = 36.4 years). The effectiveness of a cognitive behavioral program among 45 sexually dysfunctional males (mean age = 39.9 years) and 54 sexually dysfunctional females (mean age = 36.2 years) was assessed. The results demonstrated that, after therapy, respondents experienced lower levels of sexual dysfunction, more positive attitudes toward sex, perceptions that sex was more enjoyable, fewer affected aspects of sexual dysfunction in their relationship, and a lower likelihood of perceiving themselves as a sexual failure. The implications of these findings for the treatment of sexual dysfunction are discussed.

Quality of life and sense of coherence in people with arthritis

This study investigated the physical and psychological impact of arthritis on people's quality of life. A range of variables were examined in a sample of 375 participants who comprised three groups: people with arthritis receiving a support-based service from the Arthritis Foundation of Victoria, people with arthritis receiving standard treatment, and a group of people from the general population. The results revealed that the two arthritis groups reported a significantly higher level of functional impairment, pain, and negative affectivity, and lowered mood, positive affect, and Sense of Coherence, compared to the general population group. They also reported normal levels of importance, but lower levels of satisfaction on various life domains. After statistically controlling for pain however, group differences were eliminated on all variables except for functional impairment and for all satisfaction domains except health. These data are interpreted as evidence that the combination of low domain satisfaction coupled with high domain importance yields a negative psychological state. This, then suggests the possibility of a therapy based on reducing the perceived importance of health.

Quality of life and multiple sclerosis: comparison between people with multiple sclerosis and people from the general population

This paper evaluated the quality of life (QOL) of people with multiple sclerosis (MS) and people from the general population. Gender differences between the 2 groups of respondents and the influence of coping style on adjustment were also evaluated. The participants were 381 (144 males, 237 females) people with MS, and 291 (101 males, 190 females) people from the general population. The results demonstrated that people with MS experienced lower levels of QOL than people from the general population for both the objective and subjective dimensions of all domains (physical health, psychological adjustment, social relationships, environmental adjustment). All coping strategies (problem-focused, focusing on the positive, detachment, wishful thinking, seeking social support) were important predictors of QOL for both males and females with MS, with wishful thinking being the strongest predictor of poor QOL. These results are discussed in terms of the various factors that impact on QOL among people with MS, and the types of coping strategies that are most adaptive in improving the QOL of people with this illness.

Community integration or community exposure? A review and discussion in relation to people with an intellectual disability

Background: This paper reviews the issue of integration as it applies to people with an intellectual disability. A compelling finding is the almost exclusive orientation of the literature to physical integration within the general community of non-disabled people. Moreover, it seems to be generally assumed that the more frequently people experience such integration the better their lives will be. Methods: We question the validity of this assumption on several grounds. It is social, not physical integration, that has a reliable positive influence on well-being. This is an important conclusion as some disabled people find effective social integration with the general community extremely difficult to achieve. Because of this, the consequences of an overly enthusiastic program of integration for such people has more potential to be more stressful than beneficial. Results: We further argue that, as integration is being pursued to benefit the individual, the essential goal of service provision should be to achieve a sense of community connectedness, rather than being concerned with physical integration within the general community.
Conclusion: It is proposed that such connectedness is more likely to be achieved within the community of people with an intellectual disability.

Changes over time in sexual and relationship functioning of people with multiple sclerosis

Relationship and sexual satisfaction among people with multiple sclerosis (MS) has received little research attention. This article reports on a longitudinal investigation of the impact of coping style and illness-related variables among people with MS and the general population on sexual and relationship functioning. Both men (n = 120) and women (n= 201) with MS and men (n = 79) and women (n = 160) from the general population participated in the study at two points in time, 6 months apart. People with MS experienced lower levels of sexual activity, sexual satisfaction, and relationship satisfaction and higher levels of sexual dysfunction. Generally speaking, the time 1 levels of the health and coping variables explained little of the variance in the time 2 sexual and relationship variables. However, sexual activity at time 1 contributed significant unique variance to relationship satisfaction at time 2 for MS men, and coping strategies at time I contributed to relationship satisfaction among general population women at time 2. Furthermore, for those respondents who had been diagnosed with MS for less than 7 years, levels of sexual activity at time 2 were predicted by levels of sexual and relationship satisfaction, as well as levels of sexual activity at time 1. These results suggest that strategies used to cope with illness may not play a major role in sexual and relationship satisfaction. However, an examination of these strategies over a longer time frame is needed.

The relationship between religion, spirituality, psychological adjustment, and quality of life among people with multiple sclerosis

The present research was comprised of two studies that aimed to explore the role of religious and spiritual variables in the psychological adjustment and quality of life of people with Multiple Sclerosis (MS). In study 1, religious behavior and objective levels of spirituality and religiosity were not significantly related to psychological adjustment or quality of life among people with MS. Positive religious coping was negatively related to psychological adjustment and quality of life. In study 2, Intrinsic religious orientation and Quest religious orientation were related to poor psychological adjustment. Implications of the present research for people with MS and other chronic illnesses are discussed.

The development of the nutrition and activity knowledge scale for use with people with an intellectual disability

Background Obesity is an increasing health problem for many Australians, no less so among people with an intellectual disability. Behaviour change aimed at improving nutritional intake and increasing levels of physical activity is a requirement for the reduction of obesity. An essential part of this process is to first ascertain the level of knowledge and beliefs people with an intellectual disability have about these behaviours.

Methods The aim of this study was to develop and psychometrically evaluate a scale to assess levels of nutritional and physical activity knowledge among people with an intellectual disability.

Results Seventy-three people with an intellectual disability completed the interview-rated scale at time 1 and 66 of them completed it again at a 3-week re-test.

Conclusions The scale demonstrated strong factorial construct validity, high internal consistency and good temporal stability. The applications of this scale in future research and in intervention programmes are discussed.

Exacerbation of symptoms among people with multiple sclerosis: impact on sexuality and relationships over time

This study was designed to evaluate the impact of an exacerbation in symptoms among men and women with multiple sclerosis (MS) on sexuality and relationship satisfaction. A total of 321 people with MS (120 men, M age = 48.10 years; 201 women, M age = 45.78 years), and 239 people from the general population (79 men, M age = 53.93 years; 160 women, M age = 45.89 years) completed measures of relationship satisfaction and sexuality, and then completed these measures again 18 months later. The results demonstrated that both men and women with MS reported significantly higher levels of sexual dysfunction than did the general population. The no exacerbation group also reported significantly lower levels of sexual activity and of relationship satisfaction than the general population group over the 18-month period. Women in all groups reported significantly higher levels of sexual dysfunction but also higher levels of sexual activity than did men at each time period. They also reported significantly higher levels of sexual satisfaction at the 18-month follow up. These results suggest that men and women respond in similar ways to MS, and that people with MS do not necessarily experience poorer levels of sexual interaction or relationship quality when they experience an increase in their physical symptoms.

Role of health, relationships, work and coping on adjustment among people with multiple sclerosis: a longitudinal investigation

The current study was designed to evaluate the impact of health, social relationships, work and coping on the adjustment and self-esteem of people with multiple sclerosis (MS). The participants were 251 people with MS (84 men, 167 women) and 184 people from the general population (56 men, 128 women). Data were obtained on the above variables using an anonymous questionnaire. In order to determine the impact of these relationships over time, the questionnaire was completed on two occasions, 18 months apart. The impact of health, social relationships, work and coping at time 1 on adjustment and self-esteem at time 2, was explored. The results indicated that there was a high level of stability in the levels of adjustment and self-esteem among both populations over time. People with MS experienced poorer adjustment and self-esteem, as well as poorer health, lower quality relationships, and lower work capacity than people from the general population. People with MS were also less likely to adopt problem focused or seeking social support coping, and more likely to adopt a detached style of coping. For both the MS and general populations, the most important predictors of adjustment and self-esteem at time 2 were time 1 levels of the same variables, with health, social relationships, work or coping strategies explaining little of the variance in time 2 levels of adjustment. The implications of this level of stability on the psychological adjustment of people with MS are discussed.