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Background. Both individuals with intellectual disabilities (ID) and staff may be more inclined to use manual signs during formal than informal activities. In addition, the sign use of individuals with ID and staff is positively related. It is unclear if activity type and the sign use of staff interact as they shape the sign use of individuals with ID. Methods. Through non-continuous partial interval coding, we observed frequency of manual sign usage in adults with ID during communicative activities, non-communicative activities, and mealtimes in four special schools and four day centers. Using loglinear analysis and partial associations, we measured how sign use varied by activity between the people with ID and the staff. Results. When staff used signs, clients and students did not vary their spontaneous signing rate between types of activities. When staff did not use signs, a differential influence appeared according to type of activity: clients and students were significantly more likely to also refrain from using signs during mealtimes and leisure or work activities such as crafts (84% to 89% of the time) than during communicative activities such as signing sessions (65% of the time). Conclusions. Reluctance of staff to model sign use seemed to hinder signing implementation by the people with ID. Future studies should take into account various levels of sign prompting and increasing pragmatic functions of individuals’ sign use. ispartof: JOURNAL OF INTELLECTUAL DISABILITY RESEARCH vol:62 issue:9 pages:737-745 ispartof: location:England status: published

© 2018 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc. Persons with profound intellectual and multiple disabilities (PIMD) present limited peer-directed behaviors toward their peers with PIMD. It is not clear how staff can facilitate and promote the mutual peer-directed behaviors between persons with PIMD. In this study, we explored if peer-directed behaviors among persons with PIMD can be increased by an intervention that is focused on training the staff in providing social scaffolding behaviors toward their clients. An A-B-B′-C design was used in this study. A baseline condition was followed by two intervention conditions and a follow-up. Four staff members participated in a training in which they were informed about peer interactions in persons with PIMD and learned how to promote these interactions. They developed a peer interaction supportive activity. This activity was provided to two persons with PIMD for 10 weeks. Social scaffolding behaviors of staff as well as peer-directed behaviors of persons with PIMD were coded during videotaped observations. A significant increase of social scaffolding behaviors of staff members was observed during the intervention with a significant decrease at follow-up. Significantly, more singular and fewer multiple peer-directed behaviors of persons with PIMD were observed during the intervention. Both singular and multiple peer-directed behaviors decreased again at follow-up. A short training of staff members already positively affects their social scaffolding behaviors and increases the amount of peer-directed behaviors of persons with PIMD. However, the amount of both behaviors decreased again at follow-up. This argues to broadly apply this training in services and schools for persons with PIMD and to complement it with continuing staff coaching on this topic. ispartof: JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES vol:15 issue:2 pages:124-135 status: published

Background. Staff may encourage individuals with intellectual disabilities to use manual signs by modeling its use, but implementing KWS during daily activities can be demanding. Method. Staff’s use of manual signs was observed in 4 special schools and 4 day centers for adults with intellectual disabilities during communicative group activities, non-communicative group activities, and mealtimes. Using in-situ partial interval coding, we measured staff’s communication rate, semantic diversity of manual signs, sign reinforcement, and sign imitation. With Chi Squared tests, associations were measured between these variables, the two settings, and the three activity types. Results. During communicative activities, staff used manual signs significantly more in adult services than special schools. During non-communicative activities and mealtimes, staff seldom used or reinforced signs. Conclusions. Staff communicated frequently but did not often model sign use during daily activities. To investigate influence from training background, further detailed measurements are warranted. ispartof: Journal of Intellectual Disability Research vol:62 issue:1 pages:21-29 ispartof: location:England status: published

Aim: Early motor stimulation may be valuable for children with profound intellectual and multiple disabilities (PIMD), however limited knowledge of their typical motor developmental trajectory may be currently restraining the efficacy and specificity of this intervention. Research on young children with possible severe to profound cognitive and motor developmental delays who are expected to meet the criteria of PIMD later on in life, can fill this gap. Therefore, this study aims at exploring the course and (atypical) patterns of motor development in these children. Method: We assessed the gross and fine motor skills of 30 children with possible severe to profound cognitive and motor developmental delay (aged 6 to 59 months), using an adapted questionnaire completed by parents and researchers, and video observation of the motor abilities of the children. Results: Preliminary results will be presented. Conclusions: We expect that an increase in knowledge regarding the course and patterns of motor development can inform research and practice regarding assessment and evaluation of motor skills in persons with PIMD.

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Background The complex disabilities of children with profound intellectual and multiple disabilities (PIMD) impede their presentation of peer directed behaviours. Interactions with typically developing peers have been observed to be more frequent than those with peers with PIMD. The typically developing peers with whom people with PIMD have frequent contact are their siblings. In this study, the amount of peer directed behaviours was compared between an interaction with a sibling and an interaction with a peer with PIMD. In addition, the attention directing strategies of the siblings, and how these affect the presentation of peer directed behaviours, were examined. Method Thirteen children and young people with PIMD, who had a typically developing sibling, were identified. For each of these thirteen children, a peer with PIMD and a sibling were selected. The child with PIMD was observed together with a peer with PIMD and together with a sibling. In both conditions, video observations were conducted. A coding scheme for the peer directed behaviours of the children and young people with PIMD and a coding scheme for the attention directing behaviours of the siblings were used. Descriptive, comparative and sequential analyses were conducted. Results Significantly, more peer directed behaviours of the children with PIMD were observed in the condition with the sibling (30.76%) compared with that of the condition with the peer with PIMD (13.73%). The siblings presented attention directing behaviours in 30% of the time; the most frequently used was nonverbal behaviour. When the siblings presented a combination of verbal and nonverbal attention directing behaviours, they elicited multiple peer directed behaviours in the children and young people with PIMD. Conclusions Persons with PIMD interact more with their siblings compared with their peers with PIMD. Interacting with siblings may probably be more motivating and encouraging. Presenting a combination of verbal and nonverbal behaviours attracts more attention of the persons with PIMD.

Recently, a longitudinal project on the development of children with a serious cognitive and motor developmental delay has started in Belgium and the Netherlands. The aims of this study are to evaluate the cognitive, motor, communicative and social-emotional abilities of young children with a severe cognitive and motor developmental delay (between 6 months and 4 years old at the first administration moment); to analyze the developmental trajectories and patterns in these children; to evaluate the effect of family and broader contextual variables on the developmental trajectories; and to identify subgroups of children with different developmental patterns or trajectories. Six-monthly assessments of the child’s cognitive, motor, communicative and social-emotional abilities and of contextual variables are realized by means of standardized observations and questionnaires. Preliminary results for motor, communicative and social-emotional abilities will be presented. Methods and results will be discussed with the participants of the workshop. Motor abilities are measured by means of the Portage Program Netherlands- Revised - PIMD questionnaire of motor development (PPN-R-PIMD). Questionnaires of 18 participants were completed by parents. Initial analyses suggest atypical trajectories of motor development for children with PIMD. Global comparison of subgroups of children with similar additional problems suggest specific patterns related to comorbidity. The Early Social Communication Scales (ESCS) is used for the measurement of communicative abilities. The ESCS is a standardized instrument which measures non-verbal communicative abilities. The target behaviours are: (1) joint attention behaviours, (2) behavioural requesting behaviours, and (3) social interaction behaviours. The first explorative results of 14 participants show that these children are able to show joint attention and behavioural requesting behaviours, although with a large variability. Social-emotional abilities are assessed through the Scale for Emotional Development (SEO-R²). The SEO-R² is a structured interview with primary caregivers on the social-emotional development of the child. This interview results in a developmental profile of the child, incorporating thirteen domains (e.g. emotion regulation, relation to adults,…). The results of a subgroup of 18 participants show these children are functioning within the adaptation or first socialization phase of socio-emotional development.

Recently, a longitudinal project on the development of children with profound intellectual and multiple disabilities (PIMD) has started in Belgium and the Netherlands. The main aims of this study are to evaluate the cognitive, motor, communicative and social-emotional abilities of young children with PIMD (between 6 and 48 months old), to analyze the developmental trajectories and patterns in these children, to evaluate the effect of contextual variables on the developmental trajectories and to identify subgroups of children with different developmental patterns or trajectories within the group of children with PIMD. Six-monthly assessments of the child’s cognitive, motor, communicative and social-emotional abilities and of contextual variables are realized by means of test protocols, standardized observation procedures, an interview, and questionnaires. Preliminary results on the different domains will be presented.

Multisensory storytelling (MSST) is a storytelling method developed for people with profound intellectual and multiple disabilities (PIMD). The developers of MSST have established specific guidelines aimed at increasing the listener's attention. Whether, and to what extent, these guidelines indeed increase the listener' attentiveness is unknown. This study analyzed the relationship between the effects of these guidelines and the attentiveness of listeners with PIMD. Some 45 storytellers created an MSST book tailored to a person with PIMD. The book was read 10 times, and video recordings were made of the first, fifth, and tenth reading sessions. For each session, the percentage of attention paid to the storyteller and to the book was scored using an interval method. The relationship between adherence to the guidelines (repetition, use of original text, offering stimuli actively, and use of neutral background) and attentiveness of the person with PIMD was then analyzed. During storytelling, the listeners were attentive to MSST for an average of 69% of the time. The attention increased between the first and fifth reading sessions, and then dropped between the fifth and tenth sessions. Part of the guidelines (repetition, actively offering the stimuli and duration of the story) were positively related to the amount of the listeners' attention; for other parts of the guidelines (using original text and using neutral background), no significant correlations were found. The results of this study can help with developing clearer instructions to new storytellers. To optimize the attentiveness of a person with PIMD to an MSST story, the authors recommend that the storyteller takes ample time to read the book and provides the listener with active access to the stimuli.

De organisatie van de jeugdhulpverlening in Vlaanderen is complex. In het doolhof van diensten en voorzieningen vinden zowel ouders als professionelen vaak hun weg niet. Bovendien is het veld voortdurend in beweging en volgen nieuwe ontwikkelingen elkaar in snel tempo op. In dit handboek brengen de auteurs de actuele organisatie van de jeugdhulpverlening in Vlaanderen in kaart. Ze beschrijven op een systematische en bevattelijke manier verschillende sectoren: de preventieve gezinsondersteuning, de Centra voor Leerlingenbegeleiding, het algemeen welzijnswerk, de bijzondere jeugdzorg, de gezondheidszorg, de zorg voor personen met een handicap en het onderwijs aan kinderen met specifieke noden.

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Background People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method A Dutch version of the Mini PAS-ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large-scale random sample (n = 377) and a clinical sample (n = 99) of adults with ID. Results The Dutch version of the Mini PAS-ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion-validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying. Conclusions The present research reconfirmed the use of the Mini PAS-ADD as a primary screening device for the identification of mental health problems among people with ID. ispartof: Journal of Intellectual Disability Research vol:57 issue:8 pages:689-702 ispartof: location:England status: published

Nederlandse samenvatting: Dit artikel beschrijft een uitgevoerde kwalitatieve metasynthese van case studies over rouwprocessen bij personen met een verstandelijke beperking en de begeleiding hiervan. We concluderen dat personen met een verstandelijke beperking rouwreacties onder verschillende vormen uiten en dat er vaak vertraagde rouwreacties plaatsvinden. We rapporteren een grote variabiliteit aan interventies. In de gevonden case studies worden positieve effecten toegeschreven aan psychologische interventies. Additioneel worden in de geïncludeerde artikels ook verscheidene medicamenteuze en sociale interventiecomponenten werkzaam geacht. Er worden verschillende contextuele aspecten aangehaald, zoals het bijwonen van rituelen en de betrokkenheid van familieleden en begeleiders, die een invloed kunnen hebben op het rouwproces. English summary: The present article describes a qualitative metasynthesis of case studies on grief and bereavement processes and interventions for persons with intellectual disabilities. We conclude that persons with intellectual disabilities express their grief in many forms, and often as delayed grief reactions. We describe various bereavement interventions. The retrieved case studies report positive effects for psychological interventions. Additionally, they report positive effects for several applied pharmacological and social intervention components. Various important contextual intervention components are described, such as attending the funeral and other rituals, and the involvement of family and staff. ispartof: Nederlands Tijdschrift voor de Zorg aan Mensen met Verstandelijke Beperkingen vol:38 issue:4 pages:247-268 status: published

Historically, qualitative and quantitative approaches have been applied relatively separately in synthesizing qualitative and quantitative evidence, respectively, in several research domains. However, mixed methods approaches are becoming increasingly popular nowadays, and practices of combining qualitative and quantitative research components at the primary empirical study level have recently have increased significantly in frequency. Nonetheless, this mixing of methods is only seldom considered and adapted at the synthesis level. Thus, we presented an overview of the recent developments concerning mixing methods at the synthesis level, and explored the possible contributions and challenges of mixed methods research to the integration of qualitative and quantitative research at this level. ispartof: Research in the Schools vol:18 issue:1 pages:12-24 status: published

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.