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Background: The scientific study of young children with a significant cognitive and motor developmental delay is challenging due to the children's complex disabilities and high demands on family life and professional support. We aim to critically reflect on the measurement and analysis of child- and contextual variables within an ongoing research project on these children's developmental trajectories., Method: The OJKO-project tracked the development of a sample of children (n = 45) between the age of 6 months and 4 years with a significant cognitive and motor developmental delay, in Belgium and the Netherlands., Results: The complexity of the children's disabilities and daily life context, and subsequent challenges in measurement and analysis of variables, were confirmed and reflected upon., Conclusions: Due to the uniqueness and complexity of this target group, research should be characterized by creativity, perseverance and substantial modesty in the immediate generalization of results., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Knowledge on the long-term interactive interplay between children with a significant cognitive and motor developmental delay and their parents is very scarce. We aimed to characterize the (in)variability and potential mutual influence of parent's interactional style and child interactive engagement throughout early childhood. Every six months over the course of two years, thirty-five parent-child dyads (children aged 6-59 months) living in Flanders (Belgium) or the Netherlands were video-taped during a 15-minute unstructured play situation. Video-taped observations were scored using the Child and Maternal Behavior Rating Scales. No consistent group-level trend was found. Within singular interactions, parent's responsive behavior and child interactive engagement (attention and initiation) seem to be strongly related. Initial child initiation seems to positively predict parents' achievement orientation and directive behavior two years later. Parental responsiveness might be an effective interactional strategy to increase child engagement and higher levels of engagement in children possibly can facilitate parental responsiveness within a concrete interaction. The more initiative children show, the more parents might have hope for developmental benefits resulting from a directive/achievement oriented approach. Further research is warranted applying more differentiated and dynamically evaluated outcome measures and a longer follow-up time frame, with specific attention to inter-individual differences., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: The general developmental as well as the disability specific literature has stressed the crucial influence of parents on their child's social-emotional development. Attachment theory provides a framework to describe parental roles within the parent-child attachment relationship. The current study explored parents' perspectives on their role as attachment figure and the preconditions they consider necessary to establish secure attachment in children with severe or profound intellectual disability (ID)., Methods: Semi-structured interviews with 54 parents on their child's social-emotional development, attachment behaviour and the parent-child attachment bond were analysed using the Framework Method. All children were between 15 months and seven years old and had a severe or profound ID., Results: Parents reported their child's clear preference towards them and acknowledged the role they fulfil as stress regulator. Children differed in the extent to which they use their parent to explore new environments. Overall, parents described the attachment relationship with their child as positive but challenging., Conclusions: Parents acknowledged the roles they fulfil both as a safe haven for their child, and (to a lesser extent) as a secure base. Clinical practice could benefit from a parental perspective to identify particular challenges parents encounter in building a secure attachment relationship., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Background & Aims: Previous research indicates that young children with a significant cognitive and motor developmental delay show low levels of interactive engagement, their parents are generally responsive towards them and these variables are positively correlated. Adapting a micro-level approach, we aim to go beyond macro-level and correlational analyses by charting the frequency, intra-individual co-occurrence and inter-individual temporal dependency of specific interactive behaviors., Methods & Procedures: Twenty-nine parent-child dyads (with children aged 6-59 months) were video-taped during a 15-minute unstructured play situation. Based on a self-developed coding scheme, interactive behaviors were coded continuously and analyzed using a three-step sequential analysis approach., Outcomes & Results: Parents and children systematically combine either more socially-oriented or more object-oriented behaviors. Socially-oriented behaviors are less frequent in children, especially looking at and touching the partner occurs less. Socially- and object-oriented behavioral clusters are generally independent from each other and instigate/maintain the same type of behaviors in the interaction partner. While children's socially oriented behavior(al cluster)s seem to need a parental 'trigger', parents will more often independently engage with their child despite low child responsiveness., Conclusions and Implications: Further intervention-oriented research is needed to confirm this study's results and translate them into concrete guidelines for parents., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background and Aims: Parenting factors are one of the most striking gaps in the current scientific literature on the development of young children with significant cognitive and motor disabilities. We aim to explore the characteristics of, and the association between, parental behavior and children's interactive engagement within this target group., Methods and Procedures: Twenty-five parent-child dyads (with children aged 6-59 months) were video-taped during a 15-min unstructured play situation. Parents were also asked to complete the Parental Behavior Scale for toddlers. The video-taped observations were scored using the Child and Maternal Behavior Rating Scales., Outcomes and Results: Low levels of parental discipline and child initiation were found. Parental responsivity was positively related to child attention and initiation., Conclusions and Implications: Compared to children with no or other levels of disabilities, this target group exhibits large differences in frequency levels and, to a lesser extent, the concrete operationalization of parenting domains. Further, this study confirms the importance of sensitive responsivity as the primary variable in parenting research., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Background: Support staff may diverge in their use of augmentative and alternative communication (AAC) and key word signing (KWS). AAC use is determined by multiple personal and environmental factors. In this study, the relation between KWS attitudes and usage was examined in support staff., Method: Twelve adults with an intellectual disability who use KWS were each filmed during a dyadic interaction with two professionals from their service: one had received first-hand (1HT) and the other second-hand KWS training (2HT). Each communication partner participated with only one client. The professionals' sign usage was coded, and their attitude towards KWS was measured using a survey and single-category Implicit Association Test (IAT)., Results: 1HT produced more signed utterances and distinct signs than 2HT, and this increase had a positive, linear relation to IAT scores. Explicit attitude did not correlate with KWS usage, but did significantly correlate with the discrepancy between intention and KWS usage., Conclusion: The train-the-trainer system may not reach its full potential as 2HT knew fewer distinct signs and consequently produced fewer signed utterances than 1HT. In contrast to implicit attitude, no relation was found between explicit attitude and KWS usage. Though the survey may provide valuable information, it may not fully capture the complex influences that shape AAC usage., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Problem or challenging behaviors are highly prevalent among persons with autism and bring along major risks for the individual with autism and his/her family. In order to reduce the problem behavior, several behavioral interventions are used. We conducted a quantitative synthesis of single-subject studies to examine the efficacy of behavioral interventions for reducing problem behavior in persons with autism. Two hundred and thirteen studies representing 358 persons with autism met the inclusion criteria and were included in the statistical analyses. Overall, we found that behavioral interventions were on average effective in reducing problem behavior in individuals with autism, but some interventions were significantly more effective than others. The results further showed that the use of positive (nonaversive) behavioral interventions was increasing over time. The behavioral interventions were on average equally effective regardless of the type of problem behavior that was targeted. Interventions preceded by a functional analysis reduced problem behavior significantly more than interventions not preceded by a functional analysis. Finally, treatment and experimental characteristics, but not participant characteristics, were statistically significant moderators of the behavioral treatment effectiveness., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

The evaluation of language and communication skills in adults who use augmentative and alternative communication (AAC) in general and key word signing (KWS) in particular, can be an elaborate task. Besides being time-consuming and not very similar to natural communication, standard language tests often do not take AAC or KWS into account. Therefore, we developed a narrative task specifically for adults with intellectual disability (ID) who use KWS. The task was evaluated in a group of 40 adult KWS users. Outcome measures on the narrative task correlated significantly with measures of standard language and communication tests for verbal language, but not for use of manual signs. All narrative measures, for both verbal language and manual signing, correlated highly with similar measures from a conversation sample. The developed narrative task proved useful and valid to evaluate the language and communication skills of adults with ID taking into account both their verbal language and manual sign use., (Copyright © 2014. Published by Elsevier Ltd.)

Vocal challenging behavior (VCB) forms a common problem in individuals with autistic disorder. Since VCB is associated with negative outcomes for the individual and his or her environment, it is important to know how to manage this type of CB. To evaluate the effectiveness of several psychosocial interventions applied to decrease VCB in individuals with autistic disorder, we conducted a meta-analysis of single-case experiments (SCEs). Fifty-two SCEs, including 74 participants, were combined using a multilevel meta-analysis. The overall treatment effect was large and statistically significant. However, the effect varied significantly over the included studies and participants. Examining this variance, evidence was found for a moderator effect of VCB type and intervention type, with, on average, the largest effects for interventions used to reduce VCB including stereotypical VCB and for interventions containing both antecedent and consequence components. Age, gender, primary treatment setting, publication year, and study quality did not significantly moderate the intervention effect., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study, we investigated the role of attention in the onset and regulation of the emotions of persons with severe or profound ID. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate and attention was measured. Contrary to the expected higher attention to negative stimuli during the onset of negative emotions, we did not find differences in attention in the fourth to sixth second of stimulus presentation. However, in support of the emotion regulation theory of Gross (2008) we did find less attention to the negative stimuli than to the positive stimuli after these first 6s of stimuli presentation. As expected from research in people without disabilities, there was also a negative relationship between the heart rate and the probability of being attentive. Our results suggest that people with severe and profound ID use attentional deployment to regulate their emotions and that, as in people without disabilities, a low heart rate is associated with attention., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

The limitations people with profound intellectual disabilities experience in functioning contribute to a vulnerability to self-injurious behavior. Since this problem behavior has important negative consequences for people concerned, examining the effectiveness of treatments is important. In the current meta-analysis, single-case studies investigating non-aversive, non-intrusive forms of reinforcement were combined using hierarchical linear models. This analysis revealed that the average effect of treatment was relatively large and statistically significant. Further, significant variance was observed between both studies and participants. In addition, some evidence was found for a moderator effect of sensory impairment. Finally, no statistically significant moderator effects of medication, motor impairment, setting, age, gender, matching of treatment with behavioral function and contingency were found., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

Background: Because of the problems measuring subjective well-being in people with severe and profound intellectual disabilities, there are no studies to date which explore the factors contributing to the subjective well-being in these groups. We wanted to explore the client and service characteristics contributing to the subjective well-being of persons with severe and profound intellectual disabilities, as measured by the MIPQ (Ross & Oliver, 2003)., Materials and Methods: The MIPQ was completed for 360 persons with severe or profound intellectual disabilities by a member of the direct support staff. They also provided us with information on client, service and informant characteristics., Results: We found that the subjective well-being of persons with profound intellectual disabilities was lower than the subjective well-being of people with mild, moderate or severe intellectual disabilities or people without disabilities. Client and informant characteristics but no service characteristics were found to have an influence on the subjective well-being of people with severe and profound intellectual disabilities., Conclusion: As it is important for policy making to identify residence service and staff factors related to subjective well-being of persons with severe and profound intellectual disabilities, further research should try to identify these factors, taking in account the client characteristics that are found to be related to subjective well-being in this study., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

Recently, several instruments have been developed to measure the subjective component of the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). A next step, however, must be the further validation of these instruments. The present study aimed at evaluating the psychometric properties of one of these instruments, the Dutch version of the Mood, Interest and Pleasure Questionnaire (MIPQ). The MIPQ is a 25-item Likert scale questionnaire with two subscales (Mood and Interest and Pleasure). The MIPQ and the Aberrant Behavior Checklist were completed on 360 participants with severe or profound intellectual disabilities. About 27% of these participants were included in an examination of test-retest of and the inter-rater reliability of the MIPQ. The results suggest that the proposed two-factor structure did not show an adequate fit to our data. An exploratory factor analysis revealed a three-factor structure with positive mood, negative mood and interest as three correlated but distinct subscales. These results are in concurrence with the literature on positive emotions. High internal consistency (α ≥ .80), high inter-rater (r ≥ .69) and high test-retest reliability (r ≥ .86) were found, which indicates the reliable use of the MIPQ in the population of people with PIMD. Strong negative correlations between the MIPQ total score and the Aberant Behavior Checklist's 'lethargy, social withdrawal' subscale provides some evidence of the construct validity of the MIPQ. However, further validation of the MIPQ including other measures of subjective well-being is warranted., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

Staff reactions play an important role in the development and maintaining of clients' challenging behaviour. Because there is a paucity of research on staff reactions in naturalistic settings, this study examined sequential associations between challenging behaviour and staff reactions by means of a descriptive analysis. We analysed video recordings of the reactions of 10 staff members towards challenging behaviour of clients with severe or profound intellectual disabilities who displayed self-injurious behaviour, stereotyped behaviour and/or aggressive/destructive behaviour. As expected, the staff members used much verbal behaviours after challenging behaviour and often immediately tried to stop the challenging behaviour. Furthermore, staff often gave attention to challenging behaviour whereas offering or taking away material or tasks were less frequently observed reactions. Reactions to aggressive/destructive behaviour and self-injurious behaviour were quite similar. After stereotyped behaviour, not that many reactions occurred significantly more. Although this study has clinical implications and made a valuable contribution to research on staff reactions to challenging behaviour, more research is needed, more specifically, about the effectiveness of these staff reactions., (Copyright 2009 Elsevier Ltd. All rights reserved.)

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.

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.

The main goal of this study was to investigate whether staff members vary in their frequency reports on challenging behaviour concerning the same client. Because staff's approaches of challenging behaviour are affected by a range of staff characteristics, we hypothesised that these staff characteristics could explain this variability between staff members. We used questionnaires to investigate the influence of staff's age, gender, experience in working with people with intellectual disabilities, working hours, professional qualifications, sort of education, and their emotional reactions and beliefs regarding the challenging behaviour. This study involved 152 staff members and 51 clients with severe or profound intellectual disabilities who displayed self-injurious behaviour, stereotyped behaviour, and/or aggressive/destructive behaviour. A part of the variability between staff's reports on the frequency of challenging behaviour was indeed explained by differences between the staff members. Working hours, internal attribution, gender, and experience in working with people with severe or profound intellectual disabilities turned out to be influencing variables. Summarising, staff members differ in their reports on the frequency of challenging behaviour. To get an accurate picture of a client's challenging behaviour, perceptions of several staff members are needed.