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Background: Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions between persons with PIMD and the possibilities provided by DSPs related to physical positioning. Method: Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. Results: Of all 213 observed interactions, 5.1% were with peers, 73.4% with DSPs, 14.9% with the observer, and 6.5% with others. In 61.3% of the observed timeframes, the participants with PIMD were positioned in a way that made it impossible to touch or/and to look at a peer. Conclusion: Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers.

Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviour in children and adults with PIMD mainly to a biomedical model. The purpose of this study was to evaluate whether an intervention (psycho-education) had any effect on direct support staff's assessment of challenging behaviour in terms of its severity and their biomedical causal explanations (attributions) for this behaviour. Method: A stepped wedge study design was used to evaluate the effects of a psycho-education intervention on the perceived severity and the attributions offered for challenging behaviour of people with PIMD by 198 direct support staff. We used questionnaires assessing the perceived severity of challenging behaviour and staff views of its causes. Data on the dependent variables were collected at four 1-month intervals. Results: The intervention was found to have an effect on the perceived severity of challenging behaviour identified in people with PIMD in the sense that staff generally scored challenging behaviour as more severe in its consequences after the intervention. However, this effect was very small. No significant effects were found in terms of reduction in the biomedical scale scores. Conclusion: No evidence for the effectiveness of a psycho-educational approach on the assessment of challenging behaviour in terms of severity and the biomedical attributions for behaviour was found. More research is required to explore further the effects of more elaborate training using methods to enable direct support staff to reflect on the behaviour of people with PIMD and on their own behaviour.

Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. Results: The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. Conclusions: The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

The main goals of this study were to determine the prevalence, frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD). Because in the literature several health problems and sensory impairments are associated with the onset and existence of challenging behaviour, this relationship was also examined. This study involved 181 people with PIMD (age: mean: 35; SD: 19, 56% male). The Behaviour Problem Inventory was used to determine prevalence, frequency and severity of self-injurious (SIB), stereotypical and aggressive/destructive behaviour, and an additional questionnaire was used to determine the presence of sensory impairments and health problems among the participants. Results show a prevalence of 82% for SIB and stereotypical behaviour in the sample. Aggressive/destructive behaviour was seen in 45% of the participants. Concerning the frequency, on average SIB occurs on a daily or weekly basis. Stereotypical behaviour is seen on a daily basis and aggressive/destructive behaviour is usually reported once a week. All three types of challenging behaviour also occur on an hourly basis. The severity of challenging behaviour is usually rated by staff as of minor consequence for the person with PIMD. Furthermore, a relationship was found between having visual, tactile or psychiatric problems and the occurrence of challenging behaviour. Participants with visual impairments, tactile impairments or psychiatric problems showed significantly higher mean scores regarding challenging behaviour. Challenging behaviour within the target group of people with PIMD is very common. The prevalence figures are high, but direct support professionals are not inclined to rate such behaviour as of serious consequence. (Contains 5 tables.)

Background: Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions. Method: The design is a multiple case study using actigraphy. Following a baseline measurement of people with ID, we recommended an intervention such as bedtime scheduling. This was followed by an effect measurement. Results: Sleep efficiency, sleep latency and rising latency improved significantly. The time spent in bed also decreased significantly and the hours of sleep while in bed increased significantly. Conclusion: For people with ID, sleep can be improved by non-pharmaceutical interventions. A multidisciplinary approach is helpful in selecting an adequate intervention.

Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known about the effectiveness and efficiency of communication logs. Method: Sentences written in communication logs were analysed with two categorization systems. Frequencies and percentages of topics in each category were computed for teachers and for parents. Results: Most entries concern "exchanging experiences" and "requesting or giving information"; teachers write significantly more than parents. Conclusion: The results show that communication logs are not very effective or efficient in relation to an adequate information transfer between parents and professionals to optimize the mutual support of children with PIMD. The article concludes with some recommendations for the practical use of these communication logs.

Persons with profound and multiple disabilities (PIMD) are dependent on staff to be sufficiently knowledgeable as to provide them with appropriate day services. One important determinant of the appropriateness and adequacy of a day support program is the level to which staff have detailed and specific knowledge about the functional abilities and the sensory and contextual preferences of their clients, and "use" this information when providing day activity center services. The authors conducted a study designed to determine what staff know about their clients' capabilities and functioning and whether they applied this knowledge to the delivery of day services. Thirty-three direct care activity center staff members from seven different residential facilities throughout the Netherlands were involved in the research. The study used a questionnaire designed as a flow chart, which parsed knowledge within nine categories, five related to the client's functional abilities and four related to the client's sensory and contextual preferences. Results indicate that staff generally lacked specific information on the adults in their day activity center, and this impaired their ability to select and provide appropriate activities. The authors concluded that a relatively simple and easy-to-design questionnaire can provide a good overview of the special training that is needed by staff who are responsible for offering activities to persons with PIMD.

There is extensive discussion on the quality of education and support for individuals with profound intellectual and multiple disabilities (PIMD) in relation to inclusion and full citizenship. The discussions are complicated because of differences or lack of clarity in the description of the variations and types of PIMD. A description of the core group is offered, but it is also argued that there cannot be an absolute separation of this specific target group from other adjoining groups. The authors propose a multi-axial model-based taxonomy that distinguishes visual and/or auditory impairments, other physical impairments, and mental health problems, in addition to the two key defining characteristics (limited intellect and compromised physical functions). The authors also propose that assessment of people with PIMD be structured toward ascertainment of diagnostic objectives (e.g., confirming or disconfirming the person's level of intellectual disability) and the determination of a starting point and direction for support of the individual. They conclude that, to prevent misunderstanding in comparison of results of educational programs and interventions, it is recommended that workers describe individuals (or subgroups) with PIMD in publications in detail--using operational definitions. In addition, they propose that an international effort be undertaken to develop and use generally agreed assessment procedures.

Background: In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order to enhance its validity and usefulness. Method: A two-round Delphi study was set up. The panel consisted of 45 experts, of whom 12 were theory-experts, 12 practice-experts and 12 experience-experts from Belgium (n = 12), Germany (n = 12), the Netherlands (n = 11) and the UK/Ireland (n = 10). Both quantitative and qualitative methods of analysis were applied to the data. Results: The majority of the items were considered relevant for the QOL of people with PMD. In the first round, 91% of the items reached the 80% criterion of consensus. In the second round, 78.7% of the items reached the 85% criterion of consensus. There were no significant differences in opinion neither between types of experts nor between countries. Several items were reported as missing in the item pool and were added. Conclusions: The results provide some evidence that the item pool is a valid operationalization of QOL of people with PMD and can be used in an instrument to measure the QOL of this target group.

Increasing numbers of adults with profound intellectual and multiple disabilities (PIMD) are being offered more--and more frequent--day services at activity centres. Little is known about the way direct support persons (DSP) in activity centres divide their time over the various tasks they have to perform and to what extent they are focused on adults with PIMD. Given their functional disabilities, the individually focused attention of DSP is essential if the activities offered in the day services are to be appropriate. This study reports on the focus of three DSP while activities were being offered to persons with PIMD. Results indicate during the activity the three DSP were focused on the person with PIMD for 21.6%, 30.7% and 25.5% of the time. Thus DSP's spent only a limited amount of the available time on individual supervision of a client with PIMD. (Contains 6 tables.)

Background: The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method: The medical files, the daily records and daily communication records between parents and professionals were reviewed for 48 children with profound intellectual and multiple disabilities in three centres for special education in the Netherlands. In addition, interviews were held with direct service professionals and medical doctors to complete the data collection. Results: Not only do major medical conditions, such as hospital admissions, but also minor medical conditions, such as an increase in body temperature or the drowsy state a child is in as a result of a seizure, have an impact on performing activities and therapies in a child's educational centre. Conclusions: As a result of the prevalence of the medical conditions, professionals may decide not to carry on actions that were planned or do not offer an alternative programme. The risk of many "empty" hours despite the presence of highly specialized professional support is high.

Background: Information on the duration, frequency and content of leisure activities for persons with profound intellectual and multiple disabilities (PIMD) in residential facilities during weekends was not available. Method: The project was carried out in 2003 and included seven facilities. Interviews were held with direct support professionals of 112 living units. Consequently, the actual leisure provision of 160 persons with PIMD was recorded over a period of four weekends. This study also investigated the relationship between setting characteristics and the distribution of the content, frequency and duration of leisure activities. Age and gender of persons with PIMD were under investigation. Results: A total mean of 3.8 h of leisure activities is provided for during the full weekend, almost half of which includes watching television or listening to music. Leisure activities are almost exclusively offered by professionals. Parents or volunteers only provide a minimum of activities during weekends. The results suggest that the leisure provision for persons with PIMD is severely restricted and not bound to any service provider in particular. Generally, with increasing age the leisure provision for persons with PIMD declines in number and in variety. No effect was found for gender. Conclusions: Leisure time for persons with PIMD contains more empty hours than quality time.