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While it is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor interventions designed to improve motor, cognitive, and/or social outcomes in people with S-PID. A systematic review of empirical studies published between 1982 and 2012 was conducted using four databases (MEDLINE, PsycINFO, ERIC, and CINAHL). Data were extracted regarding the aim of the study, study design, sample characteristics, theoretical framework, intervention, the measurement tools utilized, and outcomes. Of 295 articles reviewed, 46 met our inclusion criteria and covered 45 different studies. Forty articles used single-subject designs and five used a group design. The majority of the articles focused on behavioural techniques with (n=21) or without (n=15) assistive technology. Theoretical frameworks were explicitly reported in nine (20%) of the 45 articles. Thirty-eight articles reported improvement in basic motor skills and eight articles reported improvement in recreational or more specialist motor skills. None of the articles reported negative effects due to motor interventions. Further research is required to determine which motor interventions are the most effective in improving motor outcomes and/or cognitive and social outcomes, and on the longer term effects of these interventions in people with S-PID., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: While optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is 'focused on the environment' or 'alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking. Therefore, the aim of the present study is to shed light on the sequential relationship between different stimuli and alertness levels in individuals with PIMD., Method: Video observations were conducted for 24 participants during one-on-one interactions with a direct support person in multisensory environments. Time-window sequential analyses were conducted for the 120 s following four different stimuli., Results: For the different stimuli, different patterns in terms of alertness became apparent. Following visual stimuli, the alertness levels of the individuals with PIMD changed in waves of about 20 s from 'active alert' to 'passive alert'. While auditory and tactile stimuli led to 'alert' reactions shortly after the stimulation, alertness levels decreased between seconds 20 and 120. Reactions to vestibular stimuli were only visible after 60 s; these were 'active alert' or 'withdrawn'., Conclusions: The results of the present study show that individuals with PIMD show their reactions to stimuli only slightly, so that 'waves' might reflect the optimal alertness pattern for learning and development. Consequently, it is especially important that direct support persons follow and stimulate these individual 'waves' in the activities they provide to their clients., (© 2012 John Wiley & Sons Ltd.)

Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.

In this paper we connect open-ended development, authority, agency, and motivation through (1) an analysis of the demands of existing in a complex world and (2) environmental appraisal in terms of affordance content and the complexity to select appropriate behavior. We do this by identifying a coherent core from a wide range of contributing fields. Open-ended development is a structured three-step process in which the agent first learns to master the body and then aims to make the mind into a reliable tool. Preconditioned on success in step two, step three aims to effectively co-create an optimal living environment. We argue that these steps correspond to right-left-right hemispheric dominance, where the left hemisphere specializes in control and the right hemisphere in exploration. Control (e.g., problem solving) requires a closed and stable world that must be maintained by external authorities or, in step three, by the right hemisphere acting as internal authority. The three-step progression therefore corresponds to increasing autonomy and agency. Depending on how we appraise the environment, we formulate four qualitatively different motivational states: submission, control, exploration, and consolidation. Each of these four motivational states has associated reward signals of which the last three-successful control, discovery of novelty, and establishing new relations-form an open-ended development loop that, the more it is executed, helps the agent to become progressively more agentic and more able to co-create a pleasant-to-live-in world. We conclude that for autonomy to arise, the agent must exist in a (broad) transition region between order and disorder in which both danger and opportunity (and with that open-ended development and motivation) are defined. We conclude that a research agenda for artificial cognitive system research should include open-ended development through intrinsic motivations and ascribing more prominence to right hemispheric strengths.

Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness observations. Measurements of five physiological parameters were compared with video observations of three individuals with profound intellectual and multiple disabilities. Because our first findings are broadly in line with those of studies involving individuals in the general population, we hypothesize that physiological measurements can be used to validate alertness observations in individuals with profound intellectual and multiple disabilities. Future studies are needed to compensate for the limitations of this study and to answer ensuing questions.

Background: Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in practice of the MSST books in persons with profound intellectual and multiple disabilities (PIMD)., Materials and Methods: Forty-nine persons with PIMD and their direct support person participated. We analysed if the books are constructed and read according to guidelines. Content and used stimuli were related to age., Results: Of the books 84% were constructed according to guidelines. In just 1.3% of the sessions, the story was read as intended. Regarding content, 67.4% of the stories focused on daily life excursions. Tactile stimuli were used most. Age related to stimuli choice, but not to content., Conclusions: Although most books were properly constructed, guidelines were barely followed during reading which may negatively influence the effectiveness., (© 2012 Blackwell Publishing Ltd.)

Because of their physical and general health problems, people with a combination of profound intellectual and severe or profound motor disabilities (PIMD) are at risk of pain-related medical conditions. They are fully dependent on support professionals for the detection and accurate interpretation of nonverbal pain behaviour. These professionals can use a recently developed instrument, the Pain Behaviour Checklist (PBC), to assess pain in post-operative situations for children with PIMD. It is not yet known whether this instrument can also be used to identify pain in both children and adults in daily care situations. The aim of this pilot study was therefore threefold: to establish (1) whether the PBC can be used to identify pain in day-to-day situations in people with PIMD, (2) which behaviours are most frequently identified as indices of pain behaviour, and (3) whether there is a difference in pain-related behaviour between children and adults. In total, 32 people with PIMD participated in the study (16 children with a mean age of 10.4 years and 16 adults with a mean age of 46.7 years). Each participant was videotaped twice during a planned care moment in which we assumed that pain was prevalent. During each observation, pain was scored by the direct support professional using the Visual Analogue Scale (VAS) and by two trained independent observers using the PBC. The reliability (both intrarater and interrater) of the PBC was analysed by calculating Spearman's rho. Validity was analysed by correlating the PBC with the VAS scores; Phi was calculated for both children and adults. Finally, positive scores on each separate item of the PBC were analysed in adults and children in order to discover possible differences between pain behaviour in each group. The interrater reliability of the PBC is .63 (p<.05) and the intrarater reliability was .88 (p<.05). Phi, as a measure of the agreement on pain/no pain between the VAS and the PBC, is .75 (p<.05) in children and .28 (p<.05) in adults. Adults were more likely to exhibit the pain-related behaviours of 'tense face', 'deeper naso-labial furrow' and 'moaning and groaning', whereas children made more 'penetrating sounds of restlessness'. Based on this pilot study, we conclude that the PCB's reliability when used in daily practice with people with PIMD is satisfactory. However, although the validity is good for children, it appears insufficient for adults. It seems that children display different pain-related behaviours than adults. More research is needed into the proper assessment of pain in people with PIMD, especially adults, by health care professionals in daily practice. We also need a better understanding of the extent to which the knowledge and experience of care professionals play a role in detecting (chronic) pain behaviour in both children and adults and of how people with PIMD cope with pain., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Background: It is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods., Methods/design: Infants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome., Discussion: LEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families., Trial Registration: The trial is registered under NTR1428.

The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores.

In supporting individuals with profound intellectual and multiple disabilities (PIMD), professionals have expressed the need for a person-centered planning method especially targeted for the highly complex and specialized support needs of these clients. The current study has evaluated the effectiveness of an Individual Support Program especially developed for persons with PIMD. A total of 23 clients and 41 professionals of a residential facility in the Netherlands participated in the study. The content and number of goals were analyzed, as well as the specific "goal patterns" for individual clients. Furthermore, the ideas that direct-support persons had about the program, and the relationship between client characteristics and the aspects described were investigated. The number of long-term goals is as expected, but the number of short-term goals is much lower. Too, the content of the long-term goals shows little variety, as almost all long-term goals focus on interaction and social roles. The short-term goals mainly aim to gather information about the individual with PIMD without applying the gathered knowledge. Although professionals experience increased workload as a result, the implementation method used may still be considered as effective in care planning.

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.

Direct support persons (DSPs) often face problems in observing and determining alertness in individuals with profound intellectual and multiple disabilities (PIMD). A literature study was carried out to gather information about the problems just described. A search of two electronic databases and the references found in relevant hits revealed 42 relevant publications. The results show that two types of descriptions of alertness can be distinguished: (1) those with a focus on the individual only or (2) those with a focus on the interaction of individual and environment. Several observation categories were used in the studies that were found. The reliability of the observations turned out to be a core problem in most of the studies. Only a limited number of environmental conditions that were expected to have an impact on alertness in individuals with PIMD were investigated. While modifications of the environment, interaction strategies, stimulation strategies and staff training were found to have a positive impact on alertness, studies about treatment activities led to conflicting results. Finally, we will formulate the resulting implications for future studies and for the development of an instrument for DSPs in order to observe alertness in individuals with PIMD in clinical practice.

Background: This study describes preliminary stages of developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of currently used checklists is low, with a focus on the child's sensory integration instead of perception., Methods: The inter-rater reliability of a checklist was determined, and adjustments were made to improve reliability., Results: Strikingly, the reliability decreased for all components after adjustment. The effect of a smaller item pool was ruled out. The effect of familiarity of teachers as raters was examined., Conclusions: Results show that teachers who know a child well could interpret that child's behaviour more accurately than persons who were unfamiliar with the child. However, reliability of the checklist remains a problem.

Objective: To determine the effect of functional movement activities within the MOVE (Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities., Subjects: Forty-four children with profound intellectual and multiple disabilities., Setting: Centres for special education., Design: A quasi-experimental pretest-posttest with control group design., Intervention: The children in the control group (n=12) participated in the regular programme at the centre of special education. The children within the experimental group (n=32) were additionally supported by the MOVE curriculum., Method: Both group comparisons and individual analyses were conducted., Results: The level of independence of the experimental group increased significantly in performing movement skills; the control group did not increase significantly. At an individual level, 20 children (63%) of the experimental group improved in comparison with the control group, in which four children (33%) improved., Conclusion: Results showed that the children receiving functionally focused activities achieved the greatest improvements in independence when performing movement activities.

Objective: To analyse the psychometric properties of the Top Down Motor Milestone Test (TDMMT), an internationally used instrument in the planning and evaluation of movement-oriented interventions., Setting: Centres for special education in the Netherlands., Subjects: Children with profound multiple disabilities., Methods: Validity, reliability and utility of the TDMMT were evaluated. Validity was assessed by conducting a principal component analysis. Reliability was determined by evaluating the internal consistency, test-retest and inter-rater reliability. With regard to utility, the hierarchical item ordering was evaluated with a Mokken scale analysis. Inter-item and item-rest correlations were calculated to confirm the allocation of the items in the TDMMT., Results: Principal component analysis did not support the presence of three underlying factors. The internal consistency was high and test-retest and inter-rater reliability varied from moderate to perfect. Scale analysis showed that the subscales of the TDMMT are strong one-dimensional scales with good internal consistency, however, the order of the items could only partly be confirmed as well as the allocation of the items into four levels of functioning., Conclusion: The reliability of the TDMMT is good, but validity is moderate. Results indicate that adaptations to the structure of the TDMMT should be made when used for children with profound multiple disabilities. Further psychometric evaluation of the TDMMT is necessary.