Impact of Surgical and Orthotic Intervention on the Quality of Life of People with Profound Intellectual and Multiple Disabilities and Their Carers

The increasing analysis of quality of life issues for people with disabilities has not been paralleled in relation to people with profound intellectual and multiple disabilities (PIMDs). This is nowhere more the case than with regard to the impact of health status on their quality of life. In addition, people with PIMDs, and the interventions which they require, have not been included within wider considerations of the economics of healthcare and its relation to rational decision‐making regarding medical provision. The present exploratory study considered the impact of a wide range of surgical and orthotic interventions on the quality of life of 27 children and adults with PIMDs. These were explored on a pre–post‐test basis with respect to: (1) the economic costs associated with surgical and orthotic interventions; (2) clinical assessment of function and behaviour; (3) the participants' and carers' quality of life; and (4) carer satisfaction with the interventions. The results are presented with respect to these individual areas and the extent to which the findings are congruent. The need for the development of these measures to meet the specific requirements of this population and the development of a more formal model integrating these steps are considered.     

Changes in Attributions as a Consequence of Training for Challenging and Complex Behaviour for Carers of People with Learning Disabilities: A Systematic Review

Aim This paper reviews the evidence for changes in carers’ attributions regarding the behaviour of people with intellectual disabilities as a consequence of carer training in challenging and complex behaviour. Method Papers were included in the review if they reported outcomes for carer training on the behaviour of people with intellectual disabilities and used a measure of carer attribution of the behaviour of people with intellectual disabilities. The characteristics of the scales used and the content and length of training are considered as possible factors affecting changes in attribution. Results Eleven papers were reviewed, most studies using behavioural curricula for their training, and none explicitly set out to change attributions. Eight of the 11 papers reviewed reported changes in attribution although core characteristics of training did not distinguish those papers that reported such changes and those that did not. Conclusions Changes in beliefs and attributions occur even though these are not identified as a focus within the training provided. The present authors suggest that the formulation processes involved in behavioural training may play a key part in changing attributions as a consequence of this training. The present authors discuss the potential for more focussed intervention designed to change attributions and for better alignment of measures to specific attribution change expected as a result of specific training approaches.     

Access to Secondary Healthcare for People with Intellectual Disabilities: A Review of the Literature

Background There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. Method A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Results Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer’s role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. Conclusion More research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services.     

Effects of Multisensory Environments on Stereotyped Behaviours Assessed as Maintained by Automatic Reinforcement

Background The aim of the present study was to evaluate the effects of the sensory equipment provided in a multi‐sensory environment (MSE) and the level of social contact provided on levels of stereotyped behaviours assessed as being maintained by automatic reinforcement. Method Stereotyped and engaged behaviours of two young people with severe intellectual disabilities were observed while the participants were either in a living room or in a MSE and receiving either high or low levels of interaction from carers. Results For both participants, levels of stereotyped behaviour were lower in the MSE irrespective of the level of carer attention received, while levels of engagement were higher under conditions of high carer attention in both environments. Conclusions The results are consistent with the hypothesis that reductions in stereotyped behaviour observed in MSEs are due to the increased levels of specific sensory stimulation provided by such environments.     

Health plan selection criteria by people with impaired mobility

BACKGROUND: Many decision-support tools for consumers selecting a health plan include a module measuring peer-group satisfaction with service and quality of care. The most widely used tools are sufficient for most people, but fail to report measures that are important to many individuals with disabilities. OBJECTIVES: To elicit health plan selection and assessment criteria by groups of people with one type of functional impairment arising from different origins. RESEARCH DESIGN: Observational study and qualitative analysis of structured focus groups. Content analysis of CAHPS survey instruments. SUBJECTS: Each participant had a mobility impairment arising from spinal cord injury, cerebral palsy, rheumatoid arthritis, or multiple sclerosis. Each participant had a choice of health plans. Focus groups were conducted in Phoenix, Philadelphia, and Washington DC. RESULTS: People with mobility impairments arising from the studied conditions desire comparative health plan information on the reliability of transportation to medical appointments, the ability to use an experienced and knowledgeable specialist as a primary provider, and accessible buildings and examination equipment. This study population also seeks information about the experience of their peers in each health plan, especially about benefits administration. CONCLUSIONS: People with mobility impairments arising from spinal cord injury, cerebral palsy, multiple sclerosis, or rheumatoid arthritis currently have little information and little bona fide choice of health plans and physicians. This group of people seeks specific information within the areas of benefit coverage, benefits interpretation and administration, provider panels, accessibility to clinics and equipment, and how to navigate the health plan's grievance and appeals process.     

Efficacy of leisure intervention groups and their impact on quality of life among people with spinal cord injury

Leisure is an important component in the lives of persons with disabilities and it is often associated with life satisfaction, self-esteem and depression. However, leisure specialists have all but ignored the leisure patterns and needs of people with disabilities. Thus this study attempts leisure intervention through groups by altering the attitude of patients towards leisure and subsequently finding out the effect on leisure satisfaction and quality of life. This study was a clinical trial conducted for patients with spinal cord injury who were evaluated using both the World Health Organization quality of life scale and the leisure satisfaction scale prior to intervention and afterwards. The experimental group had five 1 h-long group sessions as intervention while the control group had none. Twenty-five clients with paraplegia were included in both the experimental and the control groups. The mean ages of clients in both the groups were 33.40 and 37.24 years respectively. Significant improvements were observed in all domains of quality of life and leisure satisfaction in the experimental group as compared with the control group. The data show the definite impact of leisure satisfaction on quality of life. It is evident from the study that leisure intervention groups facilitate both leisure satisfaction and improved quality of life. Such an assertion definitely requires further research, corroboration and substantiation.     

Primary care satisfaction among adults with physical disabilities: the role of patient-provider communication

OBJECTIVES: To determine overall satisfaction with primary care among people with cerebral palsy, multiple sclerosis, and spinal cord injury, and to identify potential differences in primary care satisfaction between managed care (MC) and fee-for-service (FFS) enrollees with these physical disabilities. PARTICIPANTS: The sample consisted of 195 people with cerebral palsy (CP), multiple sclerosis (MS), and spinal cord injury (SCI), between the ages of 18 and 65 who had received primary care services in the six months prior to the survey. MEASUREMENTS: Satisfaction with various aspects of primary care were assessed using a 10-item self-report measure. Respondents were compared with regard to service satisfaction based on disability and insurance type (MC vs. FFS). Satisfaction items were summed up to produce an unweighted index of overall satisfaction. In the analysis we used non-parametric statistics, such as Kruskal-Wallis One Way ANOVA and Mann-Whitney Rank tests. Post hoc alpha corrections were performed using the Holms Stepdown Procedure. CONCLUSIONS: The lack of disability-specific knowledge among primary care providers is consistent with findings of other studies. People with physical disabilities in managed care plans are less satisfied with how their providers communicate with them, relative to those in FFS plans. Poor patient-provider communication may place individuals with certain physical disabilities at risk for not receiving appropriate care.     

Enhancing Attitudes of College Students Towards People with Intellectual Disabilities Through a Coursework Intervention

A limited amount of previous work has investigated the effects of course-based disability awareness programs in promoting attitudes towards people with disabilities. This study aimed to evaluate the effects of a 10-week course on university students’ (N?=?42) attitudes towards individuals with intellectual disabilities. The effectiveness of the intervention was evaluated through quantitative and qualitative methods. The quantitative results showed significant improvements in the participants’ attitudes (i.e., Empowerment and Similarity) after the intervention. Qualitative findings provided some support for the quantitative results and provided reasons for the attitudinal improvements. Overall, the results suggested that the course-based intervention program improved university students’ attitudes towards people with intellectual disabilities.     

Is part-time work a good or bad opportunity for people with disabilities? A European analysis

PURPOSE: The purpose of this article is to analyse the incidence of part-time employment among people with disabilities within a European context. Particular attention is paid to the type of part-time employment (voluntary vs. involuntary) and the levels of job satisfaction that people with disabilities report. METHOD: Using data from the European Community Household Panel for the period 1995-2001, we estimate part-time rates, preferences and levels of job satisfaction for people with and without disabilities for 13 European countries. RESULTS: The results show that a higher number of people with disabilities work part-time, compared to non-disabled workers. This is mainly due to disabled part-time workers having a much higher preference for part-time working than people without disability. This finding is corroborated when we analyse the levels of job satisfaction for disabled part-time workers. CONCLUSIONS: Part-time employment becomes a relevant instrument for policy makers and employers to improve the social inclusion, income and labour conditions of the people with disabilities because it allows these people to achieve a much better balance between their personal and health needs and working life.     

Providing opportunities for choice-making and turn-taking to adults with multiple disabilities

Training direct-care staff to provide opportunities for choice-making and turn-taking may represent one way to increase participation by persons with multiple disabilities. The present study evaluated the effectiveness of an inservice and intervention package for teaching direct-care staff to incorporate opportunities for choice-making and turn-taking into snack and leisure activities for five young adults with multiple disabilities. A multiple baseline design demonstrated that after the training package was implemented, the number of opportunities provided by staff increased. Generalization probes suggested staff could apply these choice-making and turn-taking strategies with unfamiliar clients and across a range of community activities. Choice-makin and turn-taking responses among the young adults also tended to improve as the number of staff provided opportunities increased. Results suggest direct-care staff can be taught to provide opportunities for choice-making and turn-taking with minimal training. However, some individuals with multiple disabilities may require more intensive intervention to benefit fully from such opportunities.     

Is part-time work a good or bad opportunity for people with disabilities? A European analysis

Purpose. The purpose of this article is to analyse the incidence of part-time employment among people with disabilities within a European context. Particular attention is paid to the type of part-time employment (voluntary vs. involuntary) and the levels of job satisfaction that people with disabilities report.

Method. Using data from the European Community Household Panel for the period 1995 – 2001, we estimate part-time rates, preferences and levels of job satisfaction for people with and without disabilities for 13 European countries.

Results. The results show that a higher number of people with disabilities work part-time, compared to non-disabled workers. This is mainly due to disabled part-time workers having a much higher preference for part-time working than people without disability. This finding is corroborated when we analyse the levels of job satisfaction for disabled part-time workers.

Conclusions. Part-time employment becomes a relevant instrument for policy makers and employers to improve the social inclusion, income and labour conditions of the people with disabilities because it allows these people to achieve a much better balance between their personal and health needs and working life.     

Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

Background Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers’ training needs on diet and physical activity. Methods A cross‐sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Results Sixty‐three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Conclusions Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.     

Assessment of GPs' beliefs relating to the care of people with intellectual disabilities: a Taiwan-based, opportunity-guided approach

PURPOSE: This study was designed to investigate general practitioners' (GPs) beliefs about the perceived importance of their role in, and their satisfaction with, providing healthcare to people with intellectual disabilities. The identification of healthcare issues with potential for improvement was assessed using gap analysis and an opportunity-guided method. METHOD: A cross-sectional census survey by a mail-structured questionnaire recruited 331 GPs (response rate--16%) who provided information on healthcare for people with intellectual disabilities in 2006 in Taiwan. RESULTS: The results indicated that GPs considered their role in providing healthcare for people with intellectual disabilities to be important (mean score 7.2-8.3). However, the respondents generally did not feel satisfied (mean score 4.6-5.5) with their achievements in treating patients with intellectual disabilities. We found that the gender and educational level of the respondents were statistically correlated to the perceived importance they considered their work to have, while the factors of age, medical practice setting and training experience in intellectual disability were statistically correlated to GPs' perceived satisfaction in providing healthcare to people with intellectual disabilities (p < 0.05). Those healthcare issues of'training and experience in intellectual disability', 'multi-disciplinary and multi-sectoral cooperation', 'adequate competence in disability diagnosis', 'genetic consulting services', 'duty of disease prevention and health promotion', and 'adequate medical consultation time' were the five most promising areas to be improved in healthcare for people with intellectual disabilities according to the opportunity-guided analysis. CONCLUSIONS: This study highlights that health professionals need to examine carefully healthcare issues pertaining to people with ID, and that much more effort is required to develop appropriate healthcare policies based on the opportunity-guided health issues identified here.     

Snoezelen: an overview of research with people with developmental disabilities and dementia

Purpose : This paper was to provide an overview of the research studies on snoezelen with people with developmental disabilities and dementia. Method : Computerized and manual searches were carried out to identify the aforementioned studies. Within-session, post-session, and longer-term effects of snoezelen were examined. Results and Conclusion : Twenty-one research studies were identified, 14 concerning people with developmental disabilities and seven people with dementia. Of those studies: 14 reported positive within-session effects; four positive post-session effects; and two positive longer-term effects. These findings were discussed in relation to: (1) methodological aspects (weaknesses) of the studies; (2) the cost of arranging a snoezelen programme and possibilities of reducing the range of stimuli available in the programme; and (3) some research issues for advancing the understanding and effectiveness of intervention programmes with people with developmental disabilities and dementia.     

Cognitive–Behavioural Intervention for People with Intellectual Disability and Anxiety Disorders

Background Distinct cognitive models and treatments have been developed for people without intellectual disability with a wide range of anxiety disorders. However, these have not been reported as applied to people with intellectual disabilities. In fact, much of the cognitive therapy literature for people with intellectual disabilities does not distinguish between different presentations of anxiety. Methods We take the particular example of social phobia and describe the specific cognitive model and associated intervention developed for people without intellectual disabilities. We then consider research on the social context of people with intellectual disability and research on developmental factors predictive of anxiety and make suggestions for adaptation of treatment approaches. Conclusion We suggest that such an approach would be useful to apply to other anxiety presentations and to identify areas for further clinical and research development.     

Outcomes of Wheelchair Systems Intervention With Residents of Long-Term Care Facilities

This pilot study was designed to measure the effects of individually prescribed wheelchair systems on posture and reach, mobility, quality of life, and satisfaction with technology for residents of long-term care facilities. Thirty persons 60 years of age or older who resided permanently in a long-term care facility and who used seating and mobility systems for 6 hours or more each day were recruited for this project. Outcomes included timed independent mobility, forward and lateral reach, quality of life, and satisfaction with assistive technology. The study used semicrossover design with participants measured three times. Measurements were first made in the existing seating and mobility system and a second time immediately after participants were provided with individually prescribed seating and mobility systems. The final measurement was 3 months after the delivery of the individually prescribed system. Results indicated that individually fitted wheelchair systems for elderly residents of long-term care facilities are beneficial. Participants had less difficulty independently propelling their systems and increased forward reach, quality of life, and satisfaction with assistive technology. The study used semicrossover design with participants measured three times. Measurements were first made in the existing seating and mobility system and a second time immediately after participants were provided with individually prescribed seating and mobility systems. The final measurement was 3 months after the delivery of the individually prescribed system. Results indicated that individually fitted wheelchair systems for elderly residents of long-term care facilities are beneficial. Participants had less difficulty independently propelling their systems and increased forward reach, quality of life for social function and physical role, and satisfaction with the new wheelchair technology. Persons residing in extended care facilities benefit from receiving individually prescribed wheelchair systems. The individual systems enhance elderly persons' independent mobility, functional reach, feeling of well-being, and satisfaction with their assistive technology.     

PEOPLE LIVING IN COMMUNITY HOMES: THE INFLUENCES ON THEIR ACTIVITIES

The study investigated the activities of people with learning disabilities in community-based residential services. The research used a multiple case study design which enabled processes leading to outcomes, such as participation and interaction to be identified. Six people in different services took part in detailed case studies. The data collected included an observational measure of engagement. It was found that the people who spent more time engaged in household activities lived in services which used identified procedures to encourage participation, e.g. rotas of household tasks, carers actively supporting people in meal preparation. Domestic style environments which had been planned to encourage participation in household activities did not achieve this, when such operational guidelines were not put into practice. In services in which people lived in larger groups, it was found that either activities could become repetitive or the size of the group prevented regular participation. Household activities were usually enjoyed, and for some people were a clear source of pride. Group size was found to be an influence on interaction. Interaction was highest in small groups at mealtimes (e.g. four people and a carer), or when people were in groups of two or three participating in a task. Such opportunities are more likely to occur in smaller services. It was concluded that services need to develop strategies to actively encourage both participation in household activities and interaction, but that these can be designed to avoid rigid practices.     

Examining the relationship between physical and occupational therapists and their patients with multiple sclerosis

This study examines the relationship between physical and occupational therapists (referred to collectively as therapists) and their patients with multiple sclerosis. Specifically, the purposes of this study were to quantify the relationship between (a) therapists' attitudes toward persons with disabilities and their patients' satisfaction, and (b) between therapists' general life values and their patients' satisfaction. An additional purpose was to determine which variable type, attitudes or values, was the most effective predictor of patient satisfaction. Seventy-eight patient/professional dyads contributed data, and a statistically significant multiple correlation was evident between therapists' attitudes and their patients' satisfaction (R=.426,F(7,70)=2.21,p<.043). The relationship between therapists' values and their patients' satisfaction was nonsignificant. These results support anecdotal literature indicating that for persons with disabilities, therapists' individual difference variables relate to how patients rate their satisfaction with their health care. In addition, the results suggest the use of attitude change interventions as a way of improving these relationships.