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.

Coping and psychological adjustment among people with multiple sclerosis

Objective
This study was concerned with examining the coping and psychological adjustment of people with multiple sclerosis (MS) and determining how they were different in these dimensions from people from the general population. The role of severity and duration of illness as well as levels of social support on coping style and adjustment were also evaluated.

Method
The participants were 381 (144 men, 237 women) people with MS and 291 (101 men, 190 women) people from the general population.

Results
The results demonstrated that people with MS (particularly men) were less likely to adopt coping styles related to problem solving and seeking support and demonstrated poorer levels of adjustment on all dimensions. Adopting a wishful thinking coping style, as well as a lack of problem-focused coping or failure to seek social support, was also more likely to be associated with poorer psychological adjustment for both men and women with MS. Levels of health impairment were only minimally related to psychological adjustment, particularly for men.

Discussion
These findings highlight the importance of developing educational programs that include strategies to adopt more problem-focused coping strategies, so that people with MS can more readily adjust to their illness.

Employer satisfaction with employees with a disability: comparisons with other employees

This paper is based on survey responses from 656 employers who had employed someone with a disability using support from disability employment agencies. Differences in employers' ratings of employees with and without a disability in relation to employer satisfaction and work performance are outlined. Employers were found to be less satisfied with their employee with a disability than with other employees; determinants of employer satisfaction differed between the two employee groups; and employers were predisposed to be more satisfied with employees with a disability than with other employees in relation to the work performance variables tested. Identifying areas directly related to employer satisfaction, and highlighting important differences in factors that determine employer satisfaction between these two employee groups, provides valuable direction for effective strategic planning of service interventions

Bad, mad and sad : developing a methodology of inclusion and a pedagogy for researching students with intellectual disabilities

A critical question for me as a teacher/researcher in the field of inclusive education is how to reposition children with moderate and severe intellectual disabilities as participants rather than subjects in the debate. In this paper, I develop a methodology of inclusion that comprises an ethics of consent and a pedagogy for research participation that is an opportunity not only to teach, but also to create a new discursive space for six children to speak. The discussion explores a range of methodological and interpretive strategies for including children with significant intellectual disabilities in research: issues of informed consent, the negotiation of power relations and the ways in which this innovative pedagogy can be empowering beyond the research situation. The use of this methodology has provocative implications concerning what might be learned about forging a link between the struggle for change and educational policy/practice if other researchers worked towards creating spaces for these most marginalized children to speak.

The effects of economic disadvantage on psychological well-being and quality of life among people with multiple sclerosis

This study investigated the impact of economic disadvantage among people with multiple sclerosis (MS) on their psychological well-being and quality of life. Participants were 113 people with MS (31 males, 82 females). Information was obtained on income, lost income, costs of MS, economic pressure, coping, psychological well-being and quality of life. Economic pressure, and not actual MS-related costs predicted psychological well-being. Costs, economic pressure and coping predicted quality of life. These results demonstrate that pressure due to changed economic circumstances, as well as coping with these pressures is important in the quality of life of people with MS.

The relationship between the severity and duration of physical disability and body esteem

The current study investigated the association between the severity and duration of physical disability and body esteem. A total of 748 participants (367 males, 381 females) who had a physical disability and 448 participants (171 males, 277 females) who were able-bodied participated in the study. The results demonstrated that people with more severe physical disability experienced lower levels of body esteem than people with milder physical disabilities and able-bodied people. The duration of physical disability was not related to levels of body esteem. Except for the face, people with physical disabilities devalued all aspects of their body more than able-bodied people. For males with physical disability, the unique predictors of high body esteem were decreased need for assistance, higher self-esteem, lower depression and higher sexual esteem; for females with physical disability, the unique predictors were higher self-esteem and higher sexual esteem. Overall, the study suggested that people with physical disability, particularly those with severe disabilities, may be particularly vulnerable to problems associated with their body esteem.

Accessible information for people with complex communication needs

Information can be empowering if it is accessible. While a number of known information access barriers have been reported for the broader group of people with disabilities, specific information issues for people with complex communication needs have not been previously reported. In this consumer-focused study, the accessibility of information design and dissemination practices were discussed by 17 people with complex communication needs; by eight parents, advocates, therapists, and agency representatives in focus groups; and by seven individuals in individual interviews. Participants explored issues and made recommendations for content, including language, visual and audio supports; print accessibility; physical access; and human support for information access. Consumer-generated accessibility guidelines were an outcome of this study.

A longitudinal study of coping strategies and quality of life among people with multiple sclerosis

The current study was designed to examine the role of coping strategies on quality of life (QOL) of people with multiple sclerosis (MS) over a period of 12 months. Respondents were 321 people with MS and 239 people from the general population who completed measures of QOL on two occasions, 12 months apart. People with MS also completed measures of how they coped with their illness. The results demonstrated that people with MS experienced lower levels of QOL at both points in time. For people with MS, QOL domains strongly predicted other QOL domains at both time 1 and time 2. The coping strategies of social support, focusing on the positive and wishful thinking were consistent predictors of physical QOL, psychological QOL, social QOL and environmental QOL. These findings indicate that coping strategies play an important role in predicting the QOL of people with MS.
Keywords Coping - Multiple sclerosis - Quality

Getting it right: participatory information research with people with disabilities

Over the past two decades there has been a growing understanding of consumer requirements and advances in the design and development of accessible technology. However, research over the past decade confirms that significant barriers still exist for people with disabilities. These individuals constitute a diverse group of consumers who experience physical, cognitive, literacy, financial and attitudinal barriers to the use of technology or information. They regard themselves as experts on their access issues yet have been provided with few opportunities to participate in technology research that seeks to explore issues and provide consumer-focused solutions.

In this paper, the benefits of collaborative research and the use of participatory methods in a funded research project on accessible telecommunications information are described. The target consumer group for the project was people with significant communication difficulties, a group who are particularly disadvantaged due to speech, literacy and physical access issues with technology and information. The strategies used to facilitate participation are discussed and criteria from Zarb (1992) and Barnes (2003) are used to evaluate the participatory aspect of the project.

Randomised controlled trial evaluating lifestyle interventions in people with impaired glucose tolerance

Aim

To evaluate the effectiveness of lifestyle interventions in people with impaired glucose tolerance (IGT).
Methods

Participants with IGT (n = 78), diagnosed on two consecutive oral glucose tolerance tests (OGTTs), were randomly assigned to a 2-year lifestyle intervention or to a control group. Main outcome measures were changes from baseline in: nutrient intake; physical activity; anthropometry, glucose tolerance and insulin sensitivity. Measurements were repeated at 6, 12 and 24 months follow-up.
Results

After 24 months follow-up, there was a significant fall in total fat consumption (difference in change between groups (Δ intervention − Δ control) = −17.9, 95% confidence interval (CI) −33.6 to −2.1 g/day) as a result of the intervention. Body mass was significantly lower in the intervention group compared with controls after 6 months (−1.6, 95% CI −2.9 to −0.4 kg) and 24 months (−3.3, 95% CI −5.7 to −0.89 kg). Whole body insulin sensitivity, assessed by the short insulin tolerance test (ITT), improved after 12 months in the intervention group (0.52, 95% CI 0.15–0.89%/min).
Conclusions

These findings complement the findings of the Finnish Diabetes Prevention Study and the American Diabetes Prevention Study, both of which tested intensive interventions, by showing that pragmatic lifestyle interventions result in improvements in obesity and whole body insulin sensitivity in individuals with IGT, without change in other cardiovascular risk factors.

Medication knowledge and self-management by people with type 2 diabetes

Objective: To explore medication knowledge and self management practices of people with type 2 diabetes.

Design: A one-shot cross sectional study using in-depth interviews and participant observation.

Setting: Diabetes outpatient education centre of a university teaching hospital.

Subjects: People with type 2 diabetes, n=30, 17 males and 13 females, age range 33-84, from a range of ethnic groups.

Outcome measures: Ability to state name, main actions and when to take medicines. Performance of specific medication-related tasks; opening bottles and packs, breaking tablets in half, administering insulin, and testing blood glucose.

Results: Average medication use > or = 10 years. Respondents were taking 86 different medicines, mean 7 +/- 2.97 SD. Dose frequency included two, three and four times per day. All respondents had > or = 2 diabetic complications +/- other comorbidities. The majority (93%) were informed about how and when to take their medicines, but only 37% were given information about side effects and 17% were given all possible seven items of information. Younger respondents received more information than older respondents. Older respondents had difficulty opening bottles and breaking tablets in half. Twenty per cent regularly forgot to take their medicines. Increasing medication costs was one reason for stopping medicines or reducing the dose or dose interval. The majority tested their blood glucose but did not control test their meters and 33% placed used sharps directly into the rubbish.

Conclusion: Polypharmacy was common. Medication knowledge and self management were inadequate and could lead to adverse events.