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Background: Evidence shows that neurotypical individuals who stutter use fewer gestures than those who do not stutter. Presently, no research exists about the interaction of stuttering and gestures in individuals with Down syndrome. Method: Twenty‐nine individuals with Down syndrome (7–19 years) of whom 16 stuttered and 13 spoke fluently and 20 neurotypical children (3–10 years) of whom 8 stuttered and 12 spoke fluently participated in this study. In spontaneous speech transcriptions, stuttering events and gestures were coded. Results: Comparisons of gesture frequency during stuttered and fluent speech inside the Down syndrome and neurotypical group show that the Down syndrome group uses significantly more gestures during stuttered than during fluent speech while no significant difference is seen in the neurotypical group. Conclusions: There is some preliminary evidence that individuals with Down syndrome try to compensate for their stuttering events, however, analyses on word level are necessary to confirm a successful compensation. [ABSTRACT FROM AUTHOR]

Background: It is generally acknowledged that parent social support is an important target for intervention. To explore the specific needs of parents of young children with a significant cognitive and motor developmental delay (SDD), we aim to chart the sources and perceived sufficiency of the social support they receive. Method: Within the context of a broader project, 42 parents of a young child with SDD filled out a questionnaire on contextual factors, including information on social support. Results: The majority of parents reported to receive (more than) sufficient support. Insufficiency is primarily reported with regard to practical support. Apart from the partner, grandparents of the child were the most common source of support. Conclusions: This study confirms the importance of professional support and work‐life balance within this specific target group. Specific attention for practical support needs seems warranted considering the high basic care needs of these children. [ABSTRACT FROM AUTHOR]

• Taking care for children with severe disabilities puts high demands on parents. • Outsourcing care to residential care facilities is emotionally complex for parents. • The decision to outsource is a process, marked by fields of tension and uncertainty. • Parents fear to be replaced as attachment figures, while also cherishing hope and trust. • Support to parents should be sensitive to and normalize these complex emotions. Caring for children with severe to profound intellectual disabilities (SPID) can be an overwhelming burden for parents, leading them to consider outsourcing some of the care to residential care facilities. However, this decision is complex and emotionally challenging for both the parents and the child. This Interpretative Phenomenological Analysis study aimed to explore the emotional experiences of parents when making the decision to outsource care for their children with SPID to residential care facilities. In-depth interviews were conducted with seven mothers of children aged between 8 and 18 who were actively considering a transition to residential care. The study revealed that this decision is a complex and ambiguous process, accompanied by layers of insecurities and fields of tension, against a backdrop of high care burden and (fragile) resilience. It requires parents to balance their child's and their own needs, rational and emotional arguments, and complex emotions, with the ultimate goal of finding a sustainable care solution in the long term while still fulfilling their role as attachment figures. The findings of this study are critical in supporting families who are facing such an important and emotional transition in their lives. [ABSTRACT FROM AUTHOR]

Purpose: Key word signing (KWS) entails using manual signs to support the natural speech of individuals with normal hearing and who have communication difficulties. While manual signs from the local sign language may be used for this purpose, some KWS systems have opted for a distinct KWS lexicon. Distinct KWS lexicon typically aims for higher sign iconicity or recognizability to make the lexicon more accessible for individuals with intellectual disabilities. We sought to determine if, in the Belgian Dutch context, signs from such a distinct KWS lexicon (Spreken Met Ondersteuning van Gebaren [Speaking With Support of Signs; SMOG]) were indeed more iconic than their Flemish Sign Language (FSL) counterparts. Method: Participants were 224 adults with typical development who had no signing experience. They rated the resemblance between a FSL sign and its meaning. Raw data on the iconicity of SMOG from a previous study were used. Translucency was statistically and qualitatively compared between the SMOG lexicon and their FSL counterparts. Results: SMOG had an overall higher translucency than FSL and contained a higher number of iconic signs. Conclusion: This finding may support the value of a separate sign lexicon over using sign language signs. Nevertheless, other aspects, such as wide availability and inclusion, need to be considered. [ABSTRACT FROM AUTHOR]

Current literature mainly focuses on adaptive profiles from a categorical perspective but yields inconclusive results. The present study puts a transdiagnostic approach next to a "classical" categorical approach. In this study, 222 children (5–18 years old) with autism and/or intellectual disability participated. Variance analyses, based on standard scores from ABAS-3 at group-level, were conducted in order to compare adaptive domains within categories. A K-Means cluster analysis was used to delineate empirically derived clusters with a similar profile of difference scores at an individual level. Chi-square tests and variance analyses were used to investigate the distribution of variables across clusters. From a categorical perspective, results were in line with current literature. A transdiagnostic perspective revealed three adaptive profiles (Homogeneous, Social, and Practical). No perfect match was found between specific adaptive profiles and diagnostic categories. A transdiagnostic perspective sheds light on the heterogeneity within and the overlap across diagnostic categories. [ABSTRACT FROM AUTHOR]

Parents of children with severe disabilities have differing attachmentrelated support needs. An online vignette study with 25 experts, working in academia and/or clinical practice, was conducted to reflect upon the task of matching intervention components to families, based on their attachment strengths and needs. In two online rounds, the experts first completed an inventory of intervention (n = 25) components and second, they prioritised three components for particular families (n = 22). In addition, they reflected upon their argumentations for selecting these intervention components on different levels, either closely or more remotely connected to the children with disabilities themselves. The most common intervention choice across experts was to converse with parents to increase their understanding in the child's behaviours and communication. Experts justified their choices at various levels (child, parent, family unit, broader environment and professional). In that way, the current study provided an overview of the large number of elements that professionals and policy need to take into account when providing tailored intervention trajectories to these families. Systematically reflecting upon parents' attachment-related perceptions, strengths and (support) needs can furthermore stimulate professionals to prioritise their actions. It should, however, be embedded in a broader (diagnostic and contextual) intake procedure. [ABSTRACT FROM AUTHOR]

Background: A digital micro-intervention offering attachment psychoeducational videos was explored regarding its feasibility in parents of children with severe disabilities. Method: A mixed-methods study (including daily diaries and one-time questionnaires) with 16 parents (75.0% female) of children with severe disabilities (up to 10 years of age) was done during a three-week intervention. Results: Parents were positive about the video series and almost no drop-out occurred. The videos stimulated their learning and thinking and offered parents some personal meaning. Preliminary efficacy tests showed no major changes in parents' parenting self-efficacy (PSE) or perceptions of statements on parent–child attachment. Conclusions: The study showed promising results regarding the micro-interventions' acceptability and implementation. The limited efficacy testing did not show major changes in parents' PSE. Further research is needed to investigate the differential relevance of the micro-intervention, based on parents' needs, as well as its optimal embeddedness in a broader intervention trajectory. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Seclusion and restraint still regularly occur within inpatient mental health services.The Council of Europe requires the development of a policy on for instance age limits, techniques and time limits.However, they only define the outer limits of such a policy by indicating when rights are violated. Within these limits, many choices remain open.Staff and service managers lack clarity on safe and humane procedures. Research literature provides limited and contradictory insights on these matters. What this paper adds to existing knowledge?: The study resulted in 77 best practice recommendations on the practical application of restraint and seclusion as last resort intervention in inpatient youth and adult mental health services, including forensic facilities.To our knowledge, this is the first study in which the development of recommendations on this topic is not only based on scientific evidence, but also on an analysis of European human rights standards and consensus within and between expert‐professionals and experts‐by‐experience. This approach allowed to develop for the first time recommendations on time limits, asking for second opinion, and registration of seclusion and restraint. What are the implications for practice?: The 77 recommendations encourage staff to focus on teamwork, safety measures, humane treatment, age and time limits, asking for second opinion, observation, evaluation and registration when applying seclusion and restraint as last resort intervention.The implementation of the best practice recommendations is feasible provided that they are combined with a broad preventive approach and with collaboration between service managers, staff (educators) and experts‐by‐experience. Under these conditions, the recommendations will improve safety and humane treatment, and reduce harm to both service users and staff. Introduction: Seclusion and restraint still regularly occur within inpatient mental health services. Professionals lack clarity on safe and humane procedures. Nevertheless, a detailed policy on for instance age limits, techniques and time limits is required. Aim: We developed recommendations on the humane and safe application of seclusion, physical intervention and mechanical restraint in inpatient youth and adult mental health services, including forensic facilities. Method: After developing a questionnaire based on a rapid scientific literature review and an analysis of human rights sources stemming from the Council of Europe, 60 expert‐professionals and 18 experts‐by‐experience were consulted in Flanders (Belgium) through a Delphi‐study. Results: After two rounds, all but one statement reached the consensus‐level of 65% in both panels. The study resulted in 77 recommendations on teamwork, communication, materials and techniques, maximum duration, observation, evaluation, registration, second opinion and age limits. Discussion: Combining an evidence, human rights and consensus‐based approach allowed for the first time to develop recommendations on time limits, asking for second opinion and registration. Implications for Practice: When combined with a preventive approach and collaboration between service managers, staff (educators) and experts‐by‐experience, the recommendations will improve safety and humane treatment, and reduce harm to service users and staff. [ABSTRACT FROM AUTHOR]

The communicative behavior of young children with significant cognitive and motor developmental delays is generally considered to be limited, idiosyncratic and non-intentional. At present, changes between and within children over time regarding their communicative behavior are hard to detect. This article describes an exploratory observational study that draws on data from the first data point of 38 children who are participating in a longitudinal project on the developmental trajectories of children with significant cognitive and motor developmental delays. The aims of this study were to (a) describe the participants' communicative behavior in detail with communication-related variables that reflect differences across individuals, (b) create summarizing variables and (c) explore whether subgroups of children can be detected. A self-developed coding scheme and descriptive statistics combined with correlational analyses were used, followed by a principal component analysis and visual inspection of the outcome of this analysis. The within-group differences related to communicative behavior was characterized using 16 variables. Based on these variables, three overarching components were formulated: communication proficiency, Expressions of Discomfort and Rejection and Differentiation According to Focus. All participating children were found to be unique in terms of their component scores and the relationship among their component scores. [ABSTRACT FROM AUTHOR]

Stuttering may disrupt the speech of individuals with Down syndrome (DS), but standard stuttering therapies may be less adapted to these clients' needs. This study examined if their strength in gesture use can lead to the development of a new stuttering therapy. Eighteen individuals with DS who stutter participated in an experimental task. During this task, they produced sentences in three different conditions: once without the ability to use gestures, once while moving the mouth of a hand puppet synchronous with their speech, and once while making beat gestures along their speech. Stuttering frequency was measured and compared between conditions while controlling for the effect of articulation rate. The experimental hand puppet and beat condition did not affect the stuttering frequency, but the covariate articulation rate did. An exploratory posthoc analysis showed that the articulation rate decreased during the experimental hand puppet and beat condition. Manual movements in the present task might only induce fluency through articulation rate reduction. However, analyses at individual level show significant interindividual variability. Individual analyses show that effect on stuttering frequency cannot be attributed entirely to articulation rate reduction and that beat gestures might still play a role. However, at this point, there is not enough direct evidence to implement beat gestures in current stuttering therapy. • Manual movements have an indirect effect on stuttering in people with Down syndrome. • Manual movements reduce articulation rate in people with Down syndrome. • Heterogeneity Down syndrome population requests cautious interpretation of results. • Direction of effect manual movements on stuttering is individually determined. [ABSTRACT FROM AUTHOR]

Background: Related to the target group of young children with a significant cognitive and motor developmental delay, the aims of this study were to obtain more insight into (the interrelations between) several characteristics of these children's expressive communicative behaviour and to explore associations between child behaviour, partner behaviour and contextual factors. Methods: A coding scheme was specifically developed and used to code observational data of 38 children. Three different communication‐eliciting situations were video recorded. Potential communicative acts were detected, described, coded and counted within various coding categories. Data analysis mainly involved chi‐square tests in combination with Cramer's V and Friedman's two‐way analysis of variance by ranks. Findings: Potential communicative acts of young children with significant cognitive and motor developmental delay can be described in terms of focus, used modalities, level of initiative, communication complexity, signs of functionality and signs of emerging intentionality. The communicative focus of the children is mostly elicited by the prompt given by the communication partner and relates to certain behavioural modalities. Specific scaffolding behaviours of the partner are associated with the communication complexity of the children. Conclusion: This study provides some concrete suggestions on how to organise the interaction with these children. Accessible summary: This paper is about young children with significant cognitive and motor developmental delays.The communication behaviours of this group seem all to alike.We took a closer look at these children's communication behaviours and how these relate to what other people do and the context of their interactions.We found that if you describe these children's low‐level communication behaviours in great detail, interesting differences can be seen, and other people can help the children to focus on specific objects or to shift attention from an object to person they are interacting with. [ABSTRACT FROM AUTHOR]

In the transition period between adolescence and young adulthood, individuals with 22q11.2DS are at an increased risk of developing severe psychiatric disorders. Various studies have focused on detecting risk factors, but until now protective factors are still understudied in 22q11.2DS. The current case–control study focuses on the role of resilience and quality of life (QoL) in young adults with 22q11.2DS and behavioural problems, in comparison with persons with an intellectual disability (ID) without a known genetic disorder. Self-report (and caregiver report) standardized questionnaires were used. Predictive general linear models were constructed to compare the resilience and quality of life across both groups (22q11.2DS vs ID-group) and to analyse the association between personal characteristics in both groups. Young adults with a 22q11.2DS show less resilience compared with both the general population norms and young adults with ID. Only a subscale of resilience (Acceptance of self and life) contributes to the reported level of QoL. Reported health problems are not related to resilience, but have an important effect on QoL. Our results suggest different factors are underlying resilience and the relation with QoL in 22q11.2DS and ID in general. These factors deserve more research and are important to take into account in clinical practice. [ABSTRACT FROM AUTHOR]

Purpose: Research has demonstrated that formal training is essential for professionals to learn key word signing. Yet, the particular didactic strategies have not been studied. Therefore, this study compared the effectiveness of verbal and video feedback in a key word signing training for future direct support staff. Method: Forty-nine future direct support staff were randomly assigned to 1 of 3 key word signing training programs: modeling and verbal feedback (classical method [CM]), additional video feedback (+ViF), and additional video feedback and photo reminder (+ViF/R). Signing accuracy and training acceptability were measured 1 week after and 7 months after training. Results: Participants from the +ViF/R program achieved significantly higher signing accuracy compared with the CM group. Acceptability ratings did not differ between any of the groups. Conclusion: Results suggest that at an equal time investment, the programs containing more training components were more effective. Research on the effect of rehearsal on signing maintenance is warranted. [ABSTRACT FROM AUTHOR]

Background This article is the second in a two-part series. Heyvaert et al. focused on the effectiveness of restraint interventions ( RIs) for reducing challenging behaviour among persons with intellectual disabilities) in the first article. In this second article, Heyvaert et al. focus on experiences with RIs for challenging behaviour among people with intellectual disabilities. Methods A mixed methods research synthesis involving statistical meta-analysis and qualitative meta-synthesis techniques was applied to synthesize 76 retrieved articles. This second article reports on the qualitative meta-synthesis of 17 articles on experiences with RIs for challenging behaviour among people with intellectual disabilities. Results The 17 included articles report on important variables relating to the persons receiving RIs, to the persons giving RIs and to their interactions and relationship, as well as variables situated at the meso- and macro-level. Conclusions The developed model can assist in reflecting on and improving of current RI practices among people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background This article is the first in a two-part series: we focus on the effectiveness of restraint interventions ( RIs) for reducing challenging behaviour ( CB) among persons with intellectual disabilities in this first article. In the second article, we focus on experiences with RIs for CB among people with intellectual disabilities. Methods A mixed-methods research synthesis involving statistical meta-analysis and qualitative meta-synthesis techniques was applied to synthesize 76 retrieved articles. This first article reports on the meta-analysis of 59 single-case experiments ( SCEs) on effectiveness of RIs for CB among people with intellectual disabilities. Results and Conclusions The RIs reported on in the SCEs were on average highly effective in reducing CB for people with intellectual disabilities, and this reduction in CB was statistically significant. However, the effects vary significantly over the included participants, and the published data and reported outcomes are rather unrepresentative of the everyday use of RIs among persons with intellectual disabilities. [ABSTRACT FROM AUTHOR]

The feasibility and acceptability was explored of the newly-constructed Attachment Strengths and Needs Interview for parents of children with severe or profound intellectual disabilities. A partially mixed methods approach (with focus on the quantitative data) was used to clarify parents' and professionals' viewpoints regarding the acceptability of the interview through websurvey-ratings. Parents generally felt appreciated during or after the interview, were motivated to work on the proposed goals and felt the interview covered their actual needs, but were, however, more neutral on the aspects of reflection and learning. Professionals indicated that the interview gathered sufficient information on most elements of interest at the start of an intervention trajectory, but generally missed information on the origins of parents' questions and the families' expectations towards taking part in an intervention. The current study showed preliminary support for the feasibility and acceptability of the Attachment Strengths and Needs Interview, as part of a broader intake procedure, to inform attachment-focused interventions for parents of children with disabilities by identifying their strengths and needs. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

• Stuttering can diminish the intelligibility of individuals with Down syndrome. • Gestures aid the intelligibility/comprehensibility of speech with stuttering events. • Presence but not visibility of gestures aids their speech comprehensibility. • The possibility of beat gestures as a stuttering therapy method should be examined. Individuals with Down syndrome (DS) often stutter, which can affect their speech intelligibility. Previous research has shown that manual signs can enhance speech intelligibility and comprehensibility. It remains unclear to what extent spontaneous hand gestures, such as iconic and beat gestures, may enhance intelligibility and/or comprehensibility during utterances with stuttering events. Eleven individuals with DS who stutter provided video-recorded speech samples. From these samples, 60 utterances containing a stuttering event were selected. In half of them, the stuttering events were accompanied by gestures; in the other half, the stuttering events were not accompanied by gestures. The samples were shown to 250 assessors who were blind to the study's goals. Each sample was shown in three visibility conditions: 1) video-with-audio, 2) video-with-audio but with the speaker's mouth covered and 3) audio-only. The assessors rated speech intelligibility on a 7-point Likert scale and transcribed the speech sample. The effect of gesture production, gesture type and the visibility conditions on comprehensibility and intelligibility was examined with a hierarchical multiple linear regression. When a speaker had used a gesture during a stuttering event, the Likert scale score increased with 0.47 and the accuracy of transcription with 9.07%. There was no difference in effect between the different gesture types. Despite the effect from gesture use, there was no effect of the visibility conditions on the Likert scale or transcription score. Gestures positively affect intelligibility and comprehensibility of utterances with stuttering events in individuals with DS by altering the speech production. The possibility of beat gestures as a therapy method should be examined, with caution for the development of maladaptive behaviours. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

• Metalinguistic abilities play a role in the awareness of (dys)fluency. • Discrimination of stuttering is influenced by developmental age. • Discrimination of stuttering matures around the age of 7. • Conscious awareness of stuttering may rely on the ability to discriminate. • Denial of stuttering might cloud measurement of awareness. Awareness of stuttering is likely to depend upon the development of the metalinguistic skill to discriminate between fluent speech and stuttering and the ability to identify one's own speech as fluent or stuttered. Presently, little is known about these abilities in individuals with Down syndrome (DS). This study investigates whether individuals with DS and typically developing (TD) children who stutter and who do not stutter differ in their ability to discriminate between fluent speech and stuttering. The second purpose of this study is to discover if this ability is correlated with their self-identification ability. An experiment to investigate awareness with tasks for discrimination of stuttering and self-identification was developed. It was administered to 28 individuals (7–19 years) with DS, 17 of them stutter and 11 do not, and 20 TD children (3–10 years), 8 of them stutter and 12 do not. Skills to discriminate stuttering were compared between these groups and correlated with self-identification within these groups. The influence of stuttering severity and developmental/chronological age on their ability to discriminate was also investigated. The ability to discriminate does not differ significantly between the DS and TD group, but is highly influenced by developmental age. This ability correlates with self-identification but only for the TD individuals who speak fluently. The ability to discriminate matures around the age of 7 and conscious awareness may rely on this ability. Differences between the present findings and earlier studies suggest that differentiation in levels and types of awareness is warranted. [ABSTRACT FROM AUTHOR]

The aim of this study was to develop a coding scheme that enables researchers and practitioners to conduct a detailed analysis of the communicative behavior of young children with significant cognitive and motor developmental delays. Currently, there is a paucity of methods to do conduct such an analysis. For the study, video observations of three different scenarios from 38 children with significant cognitive and motor developmental delays aged between 12 and 54 months, were used. Findings from the video observations served as the primary means for development of the coding scheme, which comprises three main categories – context, partner behavior, and individual behavior – and several subcategories. The coding scheme was used to document the early expressive communicative behavior of persons with significant cognitive and motor developmental delays in a detailed manner. This fine-grained information is necessary to differentiate children based on their communicative abilities, to monitor their communicative development longitudinally, and to inform person-centered communicative interventions. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Families including a young child with a significant cognitive and motor developmental delay need to adapt their routines to the child's needs, while balancing the resources, needs and values of the whole family system. We aim to characterize if and how their routines are sustainable in terms of ecological fit, congruence and meaningfulness, in comparison with families including a typically developing child. Based on an adapted version of the Ecocultural Family Interview, conducted with one or both parent(s), the routines of 6 families within the study group and 5 families within the control group were analysed by combining directed content analysis with quantitative ratings. A myriad of common as well as group-specific indicators of ecological fit, strategies for reaching congruence as well as reported family values were identified. Parents actively influence family life sustainability. However, families including a child with complex needs are more dependent on others and could benefit greatly from improving the organization of formal support. [ABSTRACT FROM AUTHOR]

• Children with significant cognitive and motor developmental delays develop regarding their communicative behavior although slowly and only detectable by analyzing several aspects of their behavior in great detail. • All communicative developmental trajectories are unique in pace and in order. • Children with better motor skills are more likely to show more progress in specific aspects of communicative behavior. • Interaction partners can facilitate development by adapting the interactions to the unique individuals' communicative skills. This study examines longitudinal changes in communicative behavior of young children with significant cognitive and motor developmental delays (SDD) and determines their individual communicative trajectories. A second focus of this study is the relation of changes in communicative behavior with motor skills. Data consists of codes resulting from a self-developed coding scheme used on observations of 23 children in three different settings and responses on a questionnaire. First, group trends were determined to find out whether communication-related variables tend to significantly change over the course of two years. Furthermore, these findings were contrasted with the individual trajectories of the children. Next, the association of initial communicative skills and (the acquisition of) specific motor skills with the change in their communicative functioning was studied. Wilcoxon Signed Ranks and correlational analyses were used to answer the research questions. Out of sixteen different variables related to communicative behavior, ten changed significantly over the course of two years. Children with more focus on prompt on the first datapoint showed a significantly larger increase of signs of functionality. Still, all children showed highly individual trajectories. Children with better motor skills on the first datapoint showed a significantly larger increase in communication rate. Results show that if a myriad of detailed variables are taken into account children with significant cognitive and motor developmental disabilities do change regarding their communicative functioning, but that they tend to all show unique developmental trajectories. Children with stronger skills in some aspects of communication and motor functioning, can be considered advantaged regarding their communicative development. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study tested whether children's more anxious and avoidant attachment is linked to decreased support-seeking behavior toward their mother during stress in middle childhood, and whether children's decreased support-seeking behavior enhances the impact of experiencing life events on the increase of depressive symptoms 18 months later. Ninety-eight 8- to 12-year-old children filled out questionnaires assessing their level of anxious and avoidant attachment and depressive symptoms. Children's support-seeking behavior was observed through measuring the time children waited before calling for their mother's help while carrying out a stressful task. Results supported the hypothesis that more anxiously or avoidantly attached children waited longer before seeking maternal support. Moreover, waiting longer was related to increased depressive symptoms at follow-up in children who reported more experienced life events. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

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 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 . 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 &y& Elsevier]

Abstract: 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 &y& Elsevier]

Abstract: 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 (). 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. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

Children with a significant cognitive and motor developmental delay (SDD) are vulnerable for the development of (future) behavioral and mental health problems. To support children within this target group, knowledge on their social-emotional development is necessary. Therefore, in this paper, an explorative assessment of the changes in the social-emotional functioning of children with SDD over a two-year period was done. Yearly semi-structured interviews with one or more primary caregiver(s) of 25 children were conducted and analyzed on 13 domains of social-emotional functioning, according to an adapted version of the Scale for Emotional Development - Revised (SED-R). This study showed a lot of variation in individual and group patterns of change across the two-year period. Charting the social-emotional development in this target group is challenging and requires further in-depth analysis of individual trajectories as well as more fine-grained and long-term data collection., Competing Interests: No potential conflict of interest was reported by the authors., (© The British Society of Developmental Disabilities 2021.)

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: 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.)

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.)

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.)