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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.)

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.

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]

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]

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]

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]

Being confident as attachment figures is not self-evident for parents of children with severe or profound intellectual disabilities (SPID) given the children’s limited clear communicative responses. The current study drew upon the Attachment Strengths and Needs Interview to get an overview of factors that parents identify as influencing their parent-child attachment relationships. Inductive semantic thematic analysis was conducted on 23 semi-structured interviews (including responses of 35 parents). These were the parents of children (1–9 years) with a severe or profound intellectual (or multiple) disability. The results showed that parents mentioned a large number of inhibiting and facilitating factors related to developing attachment relationships with their children. Adopting an ecological systems perspective, these influences were organised in a micro-, meso-, macro-, exo- and chrono-level. This implies that not only factors related to the child (and his/her disability) were mentioned, but also factors related to (amongst others) the parents, the parent-child and family interactions, the broader environment and policy. Concluding, from parents’ perspectives, it seemed that the factors influencing the (development of) attachment relationships can be positive and negative, are versatile, layered in different levels, interconnected and not necessarily linked to their children’s disability. Both generic factors across parents and specific factors, related to individual families, should be taken into account to provide tailored support. [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. 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. [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: 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

BackgroundResearch findings suggest that direct support staff use augmentative and alternative communication (AAC) inconsistently. Various staff-related factors have been identified, and researchers agree that these factors somehow interrelate. Therefore, we approached AAC use as a behavioural process and examined the synergy between staff-related factors. MethodFifteen direct support staff and 10 speech-language/occupational therapists who work with adults who have an intellectual disability and use AAC were individually interviewed. Transcripts were studied using thematic analysis. ResultsThree main themes were discerned: consistent versus inconsistent AAC usage in direct support staff; time as a real and virtual barrier; friction in the peer–expert relationship. ConclusionsDirect support staff primarily used AAC when there was an acute need for communication support. In contrast, both direct support staff and speech-language therapists felt that direct support staff should consistently provide augmented input. This discrepancy was driven by team dynamics as well as actual and perceived lack of time. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Key word signing (KWS) is a means of augmentative and alternative communication frequently used with adults with intellectual disabilities (ID). Their acquisition of KWS has been described in the literature; however, little is known about the everyday KWS use among adults with ID and their support staff. This study aimed to give an account of the prevalence of KWS and the sign knowledge of adults with ID and their support staff in Flemish residential programs (RPs) and day care programs (DCPs). Communication specialists in all RPs and DCPs for adults with ID in Flanders, the Dutch-speaking part of Belgium, were contacted by phone and were asked whether they used KWS, and if so, whether they were willing to fill out a questionnaire about the KWS use of support staff and clients. Findings show that of 347 RPs and DCPs in Flanders, 85% met the inclusion criteria. Half (51.2%) of these programs used KWS. Of these 152 programs, 93 (61.2%) completed our questionnaire. A quarter (26.6%) of their adult clients with ID used KWS.Most of them knew 10-50 signs, whereas most support staff knew fewer than 10 signs. The presence of a speech and language therapist as well as sign knowledge and attitude of support staff were significantly related to the sign knowledge of their clients.Motivational problems for staff to use KWS were quite common. KWS support should be more widespread and more easily accessible. [ABSTRACT FROM AUTHOR]

Background Although high-structured elicitation tasks have been shown to be efficient means to sample communication in children with intellectual disabilities, their validity and reliability remain to be evaluated. The aims of this study were threefold: (i) to evaluate the eliciting potential, (ii) to examine the utterance forms of proto-imperative and proto-declarative intentions, and (iii) to evaluate the reliability of two high-structured elicitation tasks. Methods Twenty-eight children with intellectual disabilities participated in a standard assessment battery, consisting of a formal language assessment, a parent questionnaire, an elicitation task for proto-imperatives, and an elicitation task for proto-declaratives. Results The elicitation tasks elicited significantly more proto-imperatives than proto-declaratives; with proto-imperatives being predominantly expressed with gestures and proto-declaratives predominantly with vocalizations. Furthermore, medium to large correlations were found between the elicitation tasks and the other communication and language instruments. Conclusions Several factors need to be considered to account for the observed differences in frequency and utterance forms of the elicited proto-imperatives versus proto-declaratives. Nevertheless, the results overall suggest that the elicitation tasks for proto-imperatives and proto-declaratives can be reliably used in children with intellectual disabilities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure. Method There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers. Results The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods. Conclusions The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing. [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]