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BackgroundA 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.

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., (© 2021. Springer-Verlag GmbH Germany, part of Springer Nature.)

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., (© 2022 John Wiley & Sons Ltd.)

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., (© 2021 John Wiley & Sons Ltd.)

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.)

Background: The realization of the family-centered approach (FCA) in home-based support (HBS) for families with children with an intellectual disability (ID) in Flanders was investigated, and parents' and family workers' perspectives were compared. The relation between parents' educational level, the family worker's education, and his/her experience in HBS; and parents' and family workers' judgments on the realization of the FCA was considered., Method: Parents ( N = 58 families) and family workers ( N = 46) completed the helpgiving practices scale and the enabling practices scale., Results: The FCA was largely present, parents rated its realization higher than family workers. Considering family workers' answers, parents' educational level appeared an important factor for parental autonomy., Conclusions: The study confirms recent research on the realization of the FCA. Including different perspectives, a nuanced view on the realization of the FCA was obtained. Further research on the concrete meaning, interpretation, and elaboration of the FCA is needed.

Background: Persons with profound intellectual disability (PID) are mostly not able to use assistive technology (AT) independently. Caregivers play an important mediating role in implementing AT in the daily life of persons with PID. Both first-order barriers, extrinsic to caregivers, and second-order barriers, intrinsic to caregivers, influence the attitudes and behaviors of caregivers with regard to AT-use. It could be asked if increased knowledge on and experience with AT may impact the effect of first- and second-order barriers. This study investigated how knowledge and experience influence the professional caregivers' beliefs about which factors may impact the AT use in persons with PID and their intentions to use AT for persons with PID., Methods: A questionnaire on the experienced limitations and successes in using AT was developed. The questionnaire was send to professionals working with or responsible for persons with PID in various countries in Europe. In total the answers of 195 respondents were included in this study., Results and Conclusions: This study's results demonstrate that AT is used for various reasons in persons with PID, mostly to support communication and interaction or for fun or relaxation. Based on the answers of the respondents can be concluded that both experience and knowledge of caregivers seem to influence first- and second-order barriers. Besides, a possibility to overcome the second-order barriers is to provide professionals with possibilities to increase their knowledge and experience.IMPLICATIONS FOR REHABILITATIONAT for persons with PID is mostly used for communication and interaction or for fun and relaxation.Professional caregivers belief that AT-use may positively influence various aspects in the life of persons with PID, especially communication and interaction, active engagement and participation in activities, and self-esteem of the person.Caregivers need to have sufficient experience in order to rate the barriers of AT-use as less limited in the group of persons with PID.In order to overcome the barriers experienced in implementing AT in persons with PID, knowledge of caregivers is essential.

Background: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges., Methods: The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the "voice" of persons with PIMD and (f) theoretical models., Results: Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field., Conclusions: The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques., (© 2020 John Wiley & Sons Ltd.)

The relationships between children with severe or profound intellectual disabilities (ID) and their parents may fulfil attachment functions, such as regulating emotional responses to stress. This study examined the extent to which children with severe or profound ID differentiate between their parents and a stranger as a resource for stress-regulation. A home-based experimental paradigm was conducted and video-recorded in 38 families. Children (1-8 years) were exposed to four naturalistic stressors followed by comfort, randomly provided by the parents or the stranger. Emotional behaviour (arousal and valence) and the skin conductance level were simultaneously recorded. With regard to both emotional behaviour and skin conductance, children significantly differentiated between their parents as attachment figures and the stranger during stress and comfort, despite their impairments on various developmental domains. Behavioural observation and physiology show complementary manifestations of parent-child attachment in this population.

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.

Background: Children with a significant cognitive and motor developmental delay are pre-symbolic communicators. The primary aim of this study was to reveal the variability within the communicative functioning of this group of children in terms of communication level, the reasons to communicate and behavioural expressions., Methods: Twenty-six children between 14 and 58 months with a significant cognitive and motor developmental delay were recruited. The Communication Matrix of Rowland (2011, Communication Disorders Quarterly, 32, 190) was used to integrate different sources of information on the children's communicative functioning., Results: These children primarily communicated at the level of pre-intentional and intentional behaviour, aimed at refusing, obtaining and, to a lesser extent, social purposes., Conclusions: To develop or adapt early intervention strategies, and to monitor progress in communicative development, an even more nuanced view on these children's communicative utterances in terms of frequency, duration, idiosyncrasy and context relatedness is needed., (© 2019 John Wiley & Sons Ltd.)

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: Everyday activities are an important setting for stimulating child functioning, but are understudied in young children with a significant cognitive and motor developmental delay. Therefore, we aim to characterize their family activities in terms of diversity, frequency, child engagement and family member's presence, compared to typically developing children., Methods: By asking a parent to fill out an adapted version of the Child Participation in Family Activities questionnaire, the activity pattern of 49 children within the study group and 45 children within the control group were assessed and compared., Results: Children in the study group generally experience less diverse activities (with an additional lower frequency of out-of-home activities) and show lower engagement levels compared to typically developing children., Conclusions: Incorporating high levels of personal interaction, highly stimulating activities and adapted leisure activities into the daily activity pattern of children with multiple disabilities might be a pathway to increased engagement levels., (© 2019 John Wiley & Sons Ltd.)

Background: The increased life expectancy of people with intellectual disability intensifies the need for age-specific support. Research on effects of support strategies on quality of life (QoL) of these people remains scattered., Methods: A systematic search of peer-reviewed publications since 1995 was performed, with participants having intellectual disability and being aged ≥50 years. Studies include experimental, observational and exploratory designs, analysing links between support strategies and QoL outcomes. The present authors adopted a narrative approach., Results: The present authors found 73 articles, assessed their quality, thematically categorized interventions into 12 themes, and listed them with their stated relationships to QoL., Conclusions: The studies indicated the importance of funding, provision and organization of services/personnel, education, and cooperation among different support systems. The provision of good housing or activities, support when these provisions change, provision of (mental) health care, dementia care and end-of-life care, life story work, future planning and support for (I)ADLs are crucial., (© 2018 John Wiley & Sons Ltd.)

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: The hallmark of attachment is that contact, proximity and relief from stress are sought from specific individuals, laying important groundwork for healthy socioemotional functioning. This study investigated the extent to which differentiated attachment behaviour can be observed in young children with significant developmental delay (DD)., Method: Video-taped observations of the parent-child and stranger-child interaction were conducted at home and complemented with questionnaires in 20 families with a child with significant DD (age 2-7 years with an average DD of 49 months)., Results: Children displayed more intense and persistent contact-seeking, contact-maintaining and resistant behaviour in the episodes with their parent compared to the episodes with the stranger. Parent-reported secure attachment behaviour was slightly more characteristic towards mother compared to father., Conclusions: Even children with significant DD develop differentiated attachment behaviour. Detailed observations may support parents in identifying the interactions that make the attachment relationship with their child special., (© 2018 John Wiley & Sons Ltd.)

The aim of the present study was to examine the relationship between the use of key word signing (KWS) by support staff and by adults with intellectual disabilities (clients) who had experience with using KWS. Specifically, we explored whether these clients were more inclined to use KWS when support staff used KWS or imitated signs. One-to-one conversations between 24 clients and their support staff were filmed and transcribed. Partner turns were coded for communication mode (spoken or signed) and KWS response type (i.e., imitation, repetition, or new), while client turns were coded for communication mode and novelty (novel or non-novel). Using Cramer's V, strength of association was measured between each partner and subsequent client turn. Results indicated a moderate to strong association between partners' and clients' communication mode. In addition, partner turns containing newly introduced signs were associated with non-novel signed client turns, whereas sign imitations and repetitions by partners were more often followed by novel than non-novel signed client turns. These findings suggest that a balanced KWS input that includes new signed lexical items and sign imitations/repetitions may help to facilitate clients' KWS production and maintenance. This study was exploratory, and further research is needed to validate these results.

Purpose: In services for adults with intellectual disabilities, various staff members may have different key word signing (KWS) skills and conversational style. Little is known about how these clients use KWS with different staff members. Therefore, we observed staff-client conversations and examined how clients' KWS usage was shaped by staff members' KWS usage and conversational style., Method: Three 10-min dyadic conversations between an adult with moderate or severe intellectual disabilities (N = 15) and three familiar staff members were filmed and transcribed. The KWS usage and conversational responsivity in the transcriptions was analyzed at group (using generalized estimating equations), subgroup, and individual levels., Results: Clients appeared to produce significantly more KWS as partners imitated more signs and as partners were more responsive. There was a negative interaction between these two factors. Subgroup analyses showed that spontaneity of clients' KWS usage was a continuum., Conclusion: Findings suggest that staff can encourage clients' KWS usage by imitating manual signs but that clients' response efficiency should also be taken into account.

Even though use of aided augmentative and alternative communication (AAC) by staff has been extensively researched, few studies relate to unaided AAC strategies such as key word signing (KWS). We explored the KWS views of two groups: direct support staff in group residential homes and teachers from special education secondary schools. We examined transcripts from individual semi-structured interviews with five direct support staff and five teachers using thematic analysis. Participants discussed consistency of KWS use and reasons for implementing KWS. Compared to direct support staff, teachers described more use of KWS throughout the day with more individuals with intellectual disability. Teachers discussed use of KWS to facilitate students' present and future interactions, while direct support staff primarily discussed immediate effects. Participants experienced KWS implementation as a learning process and aimed to turn the use of manual signs into a routine habit. This required considerable self-monitoring, and the effort that this continuous self-feedback required, combined with environmental factors, could hinder KWS implementation. These preliminary findings suggest that preservice KWS training and on-site KWS assistance may need to be enhanced.

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: In spite of the profound cognitive and physical problems, people with profound intellectual and multiple disabilities (PIMD) are able to develop joint attention behaviours (JAB) and benefit from positive interactions., Aims: To investigate which context factors influence the JAB of people with PIMD., Method: Based on video recordings of 45 participants, JAB and context factors were analysed., Results: An unstructured interaction situation produced the most responses of a person with PIMD, whereas a structured interaction situation produced the most initiatives. Furthermore, the familiarity of the partner and the familiarity of objects used in the interaction had no influence on the JAB. The sensitivity of the interaction partner was positively related to the presence of JAB., Conclusions: Interaction partners of people with PIMD should be aware of both the ability of people with PIMD to use JAB and the influence of different context factors on these JAB., (© 2015 John Wiley & Sons Ltd.)

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.)

Background: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning., Method: Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded., Results: Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD., Conclusions: Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD., (© 2015 John Wiley & Sons Ltd.)

Purpose: The goal of this study was to evaluate a key word signing (KWS) program in which adults with mild to severe intellectual disability (ID) were taught manual signs through their support staff. Our hypothesis was that spontaneous manual sign production of participants would increase significantly after 12 months of implementation of the KWS program., Method: A KWS immersion program was implemented in a facility for adults with ID. First, 8 support workers received 8 hr of training. These KWS ambassadors then taught 2 manual signs per week to their colleagues, who modeled the use of the signs throughout the day in natural interactions with their clients. KWS use in 15 adults with ID and 15 of their support staff was evaluated before the start of the program and at a 12-month follow-up using a narrative task and during spontaneous conversation., Results: Manual sign production of support workers and adults with ID had increased significantly 12 months after the start of the program. The adults with ID were able to express significantly more communicative functions in their narrative language after the intervention and when using KWS., Conclusion: The KWS program was successful and can be applied in similar clinical settings.

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., (© 2014 John Wiley & Sons Ltd.)

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., (© 2014 John Wiley & Sons Ltd.)

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.)

Purpose: The purpose of this study was to investigate the influence of sign characteristics in a key word signing (KWS) system on the functional use of those signs by adults with intellectual disability (ID)., Method: All 507 signs from a Flemish KWS system were characterized in terms of phonological, iconic, and referential characteristics. Phonological and referential characteristics were assigned to the signs by speech-language pathologists. The iconicity (i.e., transparency, guessing the meaning of the sign; and translucency, rating on a 6-point scale) of the signs were tested in 467 students. Sign functionality was studied in 119 adults with ID (mean mental age of 50.54 months) by means of a questionnaire, filled out by a support worker., Results: A generalized linear model with a negative binomial distribution (with log-link) showed that semantic category was the factor with the strongest influence on sign functionality, with grammatical class, referential concreteness, and translucency also playing a part. No sign phonological characteristics were found to be of significant influence on sign use., Conclusion: The meaning of a sign is the most important factor regarding its functionality (i.e., whether a sign is used in everyday communication). Phonological characteristics seem only of minor importance.

Background: The aim of this descriptive single case study was to describe a unique interaction with a person with profound intellectual and multiple disabilities (PIMD) in a holistic way-focusing on the client, the staff member, and the interacting dyad-and to include the experiential knowledge of the interaction partner., Method: A videotaped interaction of the staff-client dyad was analysed by triangulating data from video analysis, documents, observational rating scales, and an interview with the staff member., Results: The interactional pattern revealed in this study is that of a staff member who offers an activity that is considered to be stimulating for the client, by using a variety of initiatives and structuring strategies, and a client who is alert and responsive, but has limited chances to take own initiatives. Rather low scores were obtained on observations from a dialogical perspective., Conclusions: This study highlights the value of video analysis for practitioners, demonstrates the usefulness of describing an interaction episode supported by an integrative theoretical framework, and confirms the importance of combining observations by an independent researcher with experiential staff knowledge.

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.)

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

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.)

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

Background: Over the past decades the links between gesture and language have become intensively studied. For example, the emergence of requesting and commenting gestures has been found to signal the onset of intentional communication. Furthermore, in typically developing children, gestures play a transitional role in the acquisition of early lexical and syntactic milestones. Previous research has demonstrated that, particularly supplementary, gesture-word combinations not only precede, but also reliably predict the onset of two-word speech. However, the gestural correlates of two-word speech have rarely been studied in children with intellectual disabilities., Aims: The primary aim was to investigate developmental changes in speech and gesture use as well as to relate the use of gesture-word combinations to the onset of two-word speech in children with intellectual disabilities. A supplementary aim was to investigate differences in speech and gesture use between requests and comments in children with intellectual disabilities., Methods & Procedures: Participants in this study were 16 children with intellectual disabilities (eight girls, eight boys). Chronological ages at the start of the study were between 3;1 and 5;7 years; mental ages were between 1;5 and 3;3 years. Every 4 months within a 2-year period children's requests and comments were sampled during structured interactions. All gestures and words used communicatively to request and comment were transcribed., Outcomes & Results: Although children's use of spoken words as well as the diversity in their spoken vocabularies increased over time, gestures were used with a constant rate over time. Temporal tendencies similar to those described in typically developing children were observed: gesture-word combinations typically preceded, rather than followed, two-word speech. Furthermore, gestures (deictic gestures in particular) were more often used to request than to comment., Conclusions & Implications: Overall, gestures were used as a transitional tool towards children's first two-word utterances. This result highlights gesture use as a robust phenomenon during the early stages of syntactic development across populations. The observed differences in gesture use between requests and comments might be explained by differences in interactional as well as in procedural context., (© 2011 Royal College of Speech and Language Therapists.)

Background: The aim of this study was to examine the degree to which children with intellectual disability (ID) depend on manual signs during their expressive vocabulary acquisition, in relation to child and social-environmental characteristics., Method: Expressive vocabulary acquisition in speech and manual signs was monitored over a 2-year period in 23 children with ID using parent report. The children's cognitive, communicative, and vocabulary comprehension skills were measured at baseline. Speech-language pathologists' and parents' use of and attitudes towards manual signs were measured using self-report., Results: Four distinct profiles of vocabulary acquisition were evident. Those children who initially demonstrated the most significant cognitive, communicative, and comprehension delays acquired the smallest expressive vocabularies during follow-up, yet these variables were not related to the children's degree of dependence on manual signs., Conclusions: Specific cognitive, communicative, and comprehension skills relate to vocabulary acquisition. The same skills that allow for speech development seem to be fundamental to the acquisition of manual signs., (© 2011 Australasian Society for Intellectual Disability, Inc.)

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.)

Purpose: This study's objectives were to describe expressive vocabulary acquisition in children with intellectual disabilities (ID) and to examine specific pre- and early linguistic behaviors used to request and comment, chronological age, cognitive skills, and vocabulary comprehension as predictors of expressive vocabulary., Method: This study included 36 children with ID, age 3;00 (years;months) to 6;05, with an average initial expressive vocabulary of 67 words. Expressive vocabulary acquisition was longitudinally followed over a 2-year period based on 4-monthly administrations of the Dutch version of the MacArthur Communicative Development Inventory/Words and Gestures (I. Zink & M. Lejaegere, 2002). Specific pre- and early linguistic behaviors used to request and comment as well as cognitive skills and vocabulary comprehension were measured at baseline., Results: Individual growth modeling indicated that vocabulary comprehension was the only unique predictor of initial expressive vocabulary. Subsequent vocabulary growth was uniquely predicted by proportion of bimodal gesture + vocalization comments, chronological age, and cognitive skills., Conclusions: The results of this study underscore the great heterogeneity in expressive vocabulary skills in children with ID. The importance of prelinguistic communication, chronological age, cognitive skills, and vocabulary comprehension for explaining differences in expressive vocabulary skills is discussed.

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.)

The Supports Intensity Scale (SIS) was developed to provide information on the support needs of persons with intellectual disability. Our aim here was to evaluate the factorial validity of the SIS in a sample of 14,862 persons with intellectual disability. The structure of the instrument as promulgated by the developers was tested and its stability evaluated across gender, age, disability complexity, and disability severity groups. Confirmatory factor analysis supported the originally proposed subscale structure. The six-factor structure yielded strict factorial invariance across gender, age, and disability complexity, whereas invariance of factor configuration was merely established across disability severity groups. Possible explanations and implications of these findings are discussed.

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.)

Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners., Method: A computerised literature search using defined inclusion criteria yielded 15 articles., Results: The literature analysis revealed four components important in interactions: sensitive responsiveness, joint attention, co-regulation, and an emotional component. The abilities and disabilities, interactive behaviours, and personality of persons with PIMD influence these interactions. Additional influences are the partners' interactive strategies, knowledge, and perceptions and the context of the interaction., Conclusions: An overview model integrates the results and forms a vehicle to facilitate our understanding of interactions with persons with high support needs. Methodological analyses of the studies show lacunae in current research. This review offers a starting point to guide future research and intervention.

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.

Background: This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD)., Method: Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and to the subject of this review, 16 studies were identified., Results: The interventions described are targeted at the physical and material well-being, emotional well-being, social interactions, choices, and personal development of individuals with PIMD, but do not address community participation and rights. The majority of the studies report positive effects of the interventions on staff and/or client behaviour. However these effects should be interpreted with caution because of methodological and other considerations., Conclusions: Current research gives only limited insight into the effectiveness of quality-enhancing interventions for people with PIMD. To foster evidence-based practice, further studies of larger groups and with more robust designs are warranted. The potential differential effects associated with client characteristics and the context of the implementation should also be considered.

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.

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.

Children with a significant cognitive and motor developmental delay (SDD) are vulnerable for the development of (future) behavioral and mental health problems. This paper aims to assess the social-emotional functioning of these children, both globally and in various domains. Semi-structured interviews with one or more primary caregiver(s) of 45 children were conducted and analyzed on 13 domains of social-emotional functioning, according to the Scale for Emotional Development - Revised (SED-R). The SED-R scoring system was slightly adapted in the current study in order to elucidate more subtle differences between children. A general delayed social-emotional development was found, with children functioning within different phases across domains and certain domains generally showing higher or lower scores. To capture the emotional needs of children with SDD, a more disaggregated scoring system seems valuable so that both the global level and the level per domain can be taken in consideration in designing interventions.

Background: The realization of the family-centered approach (FCA) in home-based support (HBS) for families with children with an intellectual disability (ID) in Flanders was investigated, and parents' and family workers' perspectives were compared. The relation between parents' educational level, the family worker's education, and his/her experience in HBS; and parents' and family workers' judgments on the realization of the FCA was considered. Method: Parents (N ¼ 58 families) and family workers (N ¼ 46) completed the helpgiving practices scale and the enabling practices scale. Results: The FCA was largely present, parents rated its realization higher than family workers. Considering family workers' answers, parents' educational level appeared an important factor for parental autonomy. Conclusions: The study confirms recent research on the realization of the FCA. Including different perspectives, a nuanced view on the realization of the FCA was obtained. Further research on the concrete meaning, interpretation, and elaboration of the FCA is needed.

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.