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

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

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]

Children with a significant cognitive and motor developmental delay (SDD) are vulnerable for the development of (future) behavioral and mental health problems. To support children within this target group, knowledge on their social-emotional development is necessary. Therefore, in this paper, an explorative assessment of the changes in the social-emotional functioning of children with SDD over a two-year period was done. Yearly semi-structured interviews with one or more primary caregiver(s) of 25 children were conducted and analyzed on 13 domains of social-emotional functioning, according to an adapted version of the Scale for Emotional Development - Revised (SED-R). This study showed a lot of variation in individual and group patterns of change across the two-year period. Charting the social-emotional development in this target group is challenging and requires further in-depth analysis of individual trajectories as well as more fine-grained and long-term data collection. [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 feasibility and acceptability was explored of the newly-constructed Attachment Strengths and Needs Interview for parents of children with severe or profound intellectual disabilities. A partially mixed methods approach (with focus on the quantitative data) was used to clarify parents' and professionals' viewpoints regarding the acceptability of the interview through websurvey-ratings. Parents generally felt appreciated during or after the interview, were motivated to work on the proposed goals and felt the interview covered their actual needs, but were, however, more neutral on the aspects of reflection and learning. Professionals indicated that the interview gathered sufficient information on most elements of interest at the start of an intervention trajectory, but generally missed information on the origins of parents' questions and the families' expectations towards taking part in an intervention. The current study showed preliminary support for the feasibility and acceptability of the Attachment Strengths and Needs Interview, as part of a broader intake procedure, to inform attachment-focused interventions for parents of children with disabilities by identifying their strengths and needs. [ABSTRACT FROM AUTHOR]

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. 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. 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. AT 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. [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: Professionals play an important role in supporting the social relations of persons with a disability. This study looks at professional practices supporting or strengthening social relations of persons in independent supported living, by integrating the perspectives of adults with a disability, network members and professionals. Method: Fifty-one semi-structured interviews were carried out. Results: Identified practices were: facilitating social situations, connecting with current and new network members, getting to know the person with a disability really well, delivering person-directed work, being a sounding board, being a safety net, working with an empowering attitude, seeing and exploiting opportunities. Influencing factors were related to the person with a disability, the professional, the network members and the broader environment. Conclusion: Identified practices were small actions rather than structured or programmatic interventions. An unique combination and complex interplay of factors was found within each case, where negative factors could be counterbalanced by positive factors. [ABSTRACT FROM AUTHOR]

While children with developmental language disorder or Williams syndrome appear to use hand gestures to compensate for specific cognitive and communicative difficulties, they have different cognitive strength-weakness profiles. Their semantic and visuospatial skills potentially affect gesture quality such as iconicity. The present study focuses on untangling the unique contribution of these skills in the quality of gestures. An explicit gesture elicitation task was presented to 25 participants with developmental language disorder between 7 and 10 years of age, 25 age-matched peers with typical development, and 14 participants with Williams Syndrome (8−23 years). They gestured pictures of objects without using speech (pantomime). The iconicity, semantic richness, and representation technique of the pantomimes were coded. Participants' semantic association and visuospatial skills were formally assessed. Iconicity was slightly lower in individuals with Williams syndrome, which seems related to their visuospatial deficit. While semantic saliency was similar across participant groups, small differences in representation technique were found. Partial correlations showed that visuospatial skills and semantic skills were instrumental in producing clear pantomimes. These findings indicate that clinicians aiming to enhance individuals' natural iconic gestures should consider achieved iconicity, particularly in individuals with low visuospatial skills. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background In typical development, primarily contextual factors at the family level are clearly associated with child developmental outcomes. In contrast, knowledge about the contextual factors influencing the developmental characteristics of children (0-12 years) with severe to profound intellectual disability is scarce.Method Through computerised searches of 4 bibliographic databases, 54 studies were identified.Results The included studies were characterised by the use of small study populations and nonvalidated research instruments, as well as by strong research designs and detailed reporting of individual results. The majority of the studies evaluated procedures based on behaviourist learning theory, mostly aimed at reducing nonadaptive behaviour or stimulating choice behaviour. The studied factors proved to be generally effective.Conclusions Family and parenting factors are one of the most striking gaps in the current literature about the development of children with intellectual disability. Also, further research on long-term developmental changes and bidirectional influences is necessary. [ABSTRACT FROM AUTHOR]

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 sup- port 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

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]

Objectives: The Scheme for Appraisal of Emotional Development (SAED, Došen, 1997) is intended to evaluate the emotional development of persons with intellectual disabilities (ID), especially those with co-occurring problem behaviour. In 2012, The Scheme for Appraisal of Emotional Development-revised (SED-R) was developed in Dutch, based on the SAED. This paper aims at providing a description of the SED-R, its development, and results from an inter-rater reliability study. Methods: The study was carried out in services that support persons with ID in Flanders, the northern part of Belgium. For each client, the SED-R was administered twice with the same informants by two different trained interviewers at different points in time, with a 1-week minimum and 3-week maximum between assessments 1 and 2. Cronbach's Alpha coefficient was calculated in order to estimate the internal consistency. The degree of agreement between the scores of the assessment pairs at time 1 and time 2 (which could be regarded as test-retest reliability) was expressed in Spearman's rho. For the extent of inter-rater agreement, the intraclass correlations coefficient (ICC) was applied. Results: The reliability results indicate that the SED-R generally shows a high internal consistency. The total and average score of the SED-R show a substantial inter-rater reliability. Ten out of 13 domains show moderate to substantial inter-rater reliability. Conclusion: The results are discussed in relation to four notions: robustness, utility, understanding, and relevance. It is necessary to generate more knowledge with regard to the validity, reliability and applicability of the SED-R, warranting further research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

More and more attention is given to the psychological effects of challenging behaviour on others. Staff members' emotional reactions and experiences are important variables in this context, and need to be studied using direct measurement of staff exposure to challenging behaviours. In this study, 12 staff members were confronted with video recordings of their own behaviour in situations, in which a client was showing challenging behaviour. They were interviewed about their emotions and emotional experiences. Next to positive and negative emotions, staff members often mentioned the importance of the help they received from their colleagues. Some emotions were linked to the frequency of the challenging behaviour, and often, staff members referred to thoughts, questions, and doubts that were playing in their head. [ABSTRACT FROM AUTHOR]

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. [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]

The present article reviews reminiscence research with regard to people with intellectual disabilities. Although the term "reminiscence" is not often used in intellectual disability research, the concept offers a useful framework for charting the different approaches in literature, thanks to its multidisciplinary character and eclectic theoretical background. Three main perspectives are identified: a critical approach, in which reminiscence is stimulated to let people with intellectual disabilities become critically aware of their past; a person-centred approach, in which reminiscence serves informational and social purposes; and a clinical approach, in which reminiscence is presented as an alternative diagnostic instrument and/or a "low-threshold" narrative counselling method for people with intellectual disabilities. The three approaches differ in language use, aims, and backgrounds, but there is congruency amongst the approaches in that reminiscence work can strengthen the identity of people with intellectual disabilities, raise self-esteem, and enhance social contacts. The review concludes that a more balanced view of reminiscence, better methodological procedures, and more evaluation studies on the effect and process of reminiscence work are needed in future research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background The goal of this study was to adapt a narrative reminiscence program for the special needs of ageing people with mild/moderate intellectual disabilities. Research has shown that stimulating reminiscence in the elderly can be a meaningful activity, and holds promise for positive effects on well‐being. Method In the first stage (10 weeks), the program was developed with 1 group. Evaluation and adjustments to the program were made based on video recordings, the researcher's log, and feedback from participants and support workers. Formative evaluation was performed by means of a within‐group analysis. In the second stage (3 weeks), the program was introduced to 6 other groups. Interviews with professional support workers were subjected to a cross‐case analysis. Results The final program consists of 13 sessions covering different reminiscence themes. The success of reminiscence group work relies on (a) well‐prepared and structured sessions, (b) adequate use of visual triggers, and (c) facilitating, coaching and moderating. Conclusion The program was perceived as a valuable and meaningful activity by all participants. Although reminiscence group work is not therapeutic in nature, it may have therapeutic use for ageing people with intellectual disabilities, and in this sense is worth evaluating. [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]

Research on special needs education is often very complex and puts specific demands on the methodology used. Data-triangulation, at the very least, is required. In most of our recent research projects on the development of special needs education in Flanders (the Dutch speaking part of Belgium), we have made use of qualitative case studies to describe and understand the complex reality of the innovations taking place in our schools. In this article we discuss some methodological aspects of qualitative case study designs, illustrated with a study on the implementation of inclusive education in Flemish primary schools. [ABSTRACT FROM AUTHOR]

In this exploratory study, the neuropsychologicaland learning profile of nine primary school age children with velo-cardio-facialsyndrome (VCFS) was studied by systematic neuropsychological testing. In fiveout of nine children, the following profile was found: a VIQ-PIQ discrepancy(in favor of the VIQ), significantly better scores (.05 level) for reading(decoding) and spelling compared to arithmetic, deficient tactile-perceptualskills (difficulties mainly on the left side of the body), weak but not deficientvisual-perceptual abilities, deficient visual-spatial skills, extremely poorpsychomotor skills (gross motor skills more deficient than fine motor skills),problems with processing of new and complex material, poor visual attention,good auditory memory and relatively good language skills. These findings correspondto the pattern of neuropsychological assets and deficits that has been describedfor the syndrome of nonverbal learning disabilities (NLD) (Rourke, 1987, 1988,1989, 1995). The psychosocial profile of all nine children with VCFS alsocorrespond to that of children with NLD. Further studies on the relationshipbetween cognitive function, behavior, psychiatric disorder and abnormalitiesin brain anatomy in young people with VCFS will be needed. In clinical practice,it is worthwhile exploring in greater depth the neuropsychological functionsof children with VCFS to rule out NLD, since they may benefit from specificremediation following the learning principles of the NLD-treatment. [ABSTRACT FROM AUTHOR]