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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. Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. 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. Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers. [ABSTRACT FROM AUTHOR]

Background Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. Method To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. Results The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. Conclusion These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour. [ABSTRACT FROM AUTHOR]

Background: The multiple and complex disabilities of persons with profound intellectual and multiple disabilities (PIMD) form a barrier for peer interactions and peer-directed behaviours. In this study, we further explore the nature of peer-directed behaviours in persons with PIMD and its relationship with social scaffolding behaviour of direct support workers (DSWs). Methods: Fourteen dyads of children with PIMD, who knew each other for at least 12 months, participated. They were sitting in close proximity while they were filmed with and without the presence of the DSW. Video recordings were coded continuously making use of observation schemes for the peer-directed behaviours of the children and the peer interaction influencing behaviours of the DSW. Results: Significantly more singular peer-directed behaviour (without DSW: 18.00%; with DSW: 3.81%) was observed than multiple peer-directed behaviour (without DSW: 4.01%; with DSW: 0.52%). The amount of time the singular and multiple peer-directed behaviours were observed was significantly lower in the presence of a DSW. When the DSW shows peer interaction influencing behaviour, it was mostly social scaffolding behaviour (2.17%). The conditional probability of observing social scaffolding behaviour in the 10 s following on singular peer-directed behaviour was 0.02 with a Yule's Q of 0.04 and following on multiple peer-directed behaviour 0.04 with a Yule's Q of 0.33. Conclusion: The way in which peer interactions in children with PIMD are defined could have an impact on the amount of observed peer-directed behaviours and on the effect of the social scaffolding behaviours presented by DSW. [ABSTRACT FROM AUTHOR]

Background The complex disabilities of children with profound intellectual and multiple disabilities (PIMD) impede their presentation of peer directed behaviours. Interactions with typically developing peers have been observed to be more frequent than those with peers with PIMD. The typically developing peers with whom people with PIMD have frequent contact are their siblings. In this study, the amount of peer directed behaviours was compared between an interaction with a sibling and an interaction with a peer with PIMD. In addition, the attention directing strategies of the siblings, and how these affect the presentation of peer directed behaviours, were examined. Method Thirteen children and young people with PIMD, who had a typically developing sibling, were identified. For each of these thirteen children, a peer with PIMD and a sibling were selected. The child with PIMD was observed together with a peer with PIMD and together with a sibling. In both conditions, video observations were conducted. A coding scheme for the peer directed behaviours of the children and young people with PIMD and a coding scheme for the attention directing behaviours of the siblings were used. Descriptive, comparative and sequential analyses were conducted. Results Significantly, more peer directed behaviours of the children with PIMD were observed in the condition with the sibling (30.76%) compared with that of the condition with the peer with PIMD (13.73%). The siblings presented attention directing behaviours in 30% of the time; the most frequently used was nonverbal behaviour. When the siblings presented a combination of verbal and nonverbal attention directing behaviours, they elicited multiple peer directed behaviours in the children and young people with PIMD. Conclusions Persons with PIMD interact more with their siblings compared with their peers with PIMD. Interacting with siblings may probably be more motivating and encouraging. Presenting a combination of verbal and nonverbal behaviours attracts more attention of the persons with PIMD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background When providing activities to individuals with profound intellectual and multiple disabilities ( PIMD), direct support persons ( DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. Method Videotapes of the one-to-one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. Results The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. Conclusions These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible. [ABSTRACT FROM AUTHOR]

Background Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of research about staff interaction during specific activities with people with PIMD. In the present study, we explored the possibility to describe staff interactive style during MSST making use of a global coding instrument. Methods Twenty dyads of a person with PIMD and a professional caregiver participated in an observation study. The caregivers received training in MSST and told a multisensory story to their client once a week, for a period of 10 weeks. The first, fifth and last session were recorded on video. Staff interactive style was coded using an adapted version of the Maternal Behavior Rating Scale, with a consensus rating procedure. Results Professional caregivers scored moderately on the Maternal Behavior Rating Scale. Repeated measures analyses showed no change in time. We did not find a relationship between staff interactive style and client or staff characteristics. Conclusions The Maternal Behavior Rating Scale contributes to our understanding of staff interactive style during activities with people with PIMD. Specifically for MSST, the moderate scores on the interactive style dimensions were unexpected, because the individualised MSST activity created an optimal situation for high-quality interaction with people with PIMD. Because the interactive style did not improve through the repetition of the activity either, these results might point to a need for staff training in achieving high-quality interaction during activities like MSST. [ABSTRACT FROM AUTHOR]

Background Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed. Method Persons with PIMD with an estimated intelligence quotient of 25 and profound or severe motor disorders were studied. Data on health problems were taken from medical notes and prescribing data were obtained from pharmacies. Data covering 1 year were analysed. For four therapeutic areas (anticonvulsants, laxatives, drugs for peptic ulcer and gastro-oesophageal reflux disease and psycholeptics), we determined whether we could find an indication for prescribed medication. Results Some 254 persons with PIMD (46% male, 54% female; median age 49 years, range 6–82) from eight residential facilities participated. Some 226 participants (89%) were prescribed medication over the course of 1 year. An indication for the prescribed medication was documented for 92% ( n = 130) (95% confidence interval 88–96%) of 141 participants on anticonvulsants, for 68% ( n = 112) (61–75%) of 165 participants on laxatives, for 44% ( n = 58) (36–52%) of 132 participants on drugs for peptic ulcer and gastro-oesophageal reflux disease, and for 89% ( n = 102) (83–95%) of 115 participants on psycholeptic drugs. Conclusions The best level of documentation was found for anticonvulsants the worst for drugs for peptic ulcer and gastro-oesophageal reflux disease. Lack of documenting an indication may be due to off-label use, inadvertent continuation of no longer indicated medication, inadequate documentation and underdiagnosis. Adequate documentation practices are essential because of the communication problems that are characteristic for persons with PIMD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: 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. [ABSTRACT FROM AUTHOR]

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff. [ABSTRACT FROM AUTHOR]