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ispartof: Logopedie vol:33 issue:3 pages:11-19 status: published

ispartof: Logopedie vol:33 issue:2 pages:9-14 status: published

ispartof: Logopedie vol:33 issue:1 pages:9-15 status: published

ispartof: TOKK: Tijdschrift voor Orthopedagogiek, Kinderpsychiatrie en Klinische Kinderpsychologie vol:44 issue:3-4 pages:133-146 status: published

Onderzoek naar de ontwikkeling van personen met Ernstige Meervoudige Beperkingen (EMB) is schaars, zeker wanneer het om jonge kinderen gaat. Het OJKO-project (Ontwikkeling van Jonge Kinderen met een grote Ontwikkelingsvertraging, www.ojko.be) wilt hier verandering in brengen. Het algemene doel van het project is de ontwikkeling van deze kinderen opvolgen op verschillende domeinen van hun functioneren, waarbij ook de invloed van contextvariabelen op hun ontwikkelingstrajecten wordt nagegaan. In kader van dit project werd een internationale samenwerking opgezet tussen de KU Leuven (onder leiding van Professor Bea Maes) en de Rijksuniversiteit Groningen (onder leiding van Professor Annette van der Putten). Verschillende doctorandi en masterstudenten werken aan dit project, waaronder Ines Van keer. Zij deed de voorbije jaren onderzoek naar de (invloed van de) gezinscontext in deze doelgroep, met een specifieke focus op enerzijds ouder-kind interacties en anderzijds gezinsactiviteiten. ispartof: VVO tijdschrift: Driemaandelijks tijdschrift van de Vlaamse Vereniging van Orthopedagogen vzw vol:38 issue:4 pages:6-11 status: published

ispartof: Nederlands Tijdschrift voor de Zorg aan Mensen met Verstandelijke Beperkingen vol:45 issue:2 pages:66-86 status: published

In het kader van een doctoraatsonderzoek zijn ouders gefilmd tijdens een interactie met hun jonge kinderen tot vier jaar met een grote verstandelijke en motorische ontwikkelingsstoornis. Het onderzoek toont aan dat deze kinderen gebaat zijn bij stimulerend contact met de ouders, maar ook dat daarbij sprake kan zijn van remmende factoren. Opvallend in dit verband is dat ouders van kinderen die minder initiatief nemen eerder lijken te kiezen voor een interactiestijl gericht op sociaal contact dan op ontwikkeling. ispartof: Vakblad Ouders Centraal vol:1 issue:1 pages:1-7 status: published

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

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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.

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.

ispartof: SWVG-Rapport vol:33 nrpages: 121 status: published

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nrpages: 166 status: published

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

Key word signing (KWS) is a form of augmentative and alternative communication (AAC) frequently used with both children and adults with intellectual disabilities (ID). Communication problems are common in people with ID, and can be caused by their ID and/or by additional disorders. AAC offers different methods to address these communication problems and let people with ID make use of their communicative abilities to the fullest. KWS is one of many AAC systems that can be used (often combined with other systems such as visualisations and speech-generating devices) to support both receptive and expressive communication. It can be used to offer young children a tool for the earliest interactions, to aid in language development, and as a functional, everyday communication means both in children and in adults. The latter group was the focus of this research project. Little is known about these adults and the way they use KWS. Most available literature studied the acquisition of KWS and did not look beyond the therapy room, or only included young children or adolescents. The aim of this research project was to examine the functional KWS use in adults with ID in Flanders, Belgium.A first step was to map the prevalence of KWS use among adults with ID, and to explore the characteristics of these KWS users and their support staff in general. This was done in a survey study, in which all Flemish residential (RP) and day care programs (DP) for adults with ID were contacted by phone. Those programs that indicated use of KWS with one or more of their clients, were asked to fill out a questionnaire. Of the 295 included RP and DP, a few over half used KWS. Programs which did not use KWS, often showed a lack of knowledge regarding KWS. A questionnaire about their KWS use was completed by 93 of the programs. A quarter of their clients actively used KWS. Most adults with ID used 10 to 50 signs, whereas the majority of their support workers used fewer than 10 signs. Sign knowledge and attitude of support staff related significantly to the sign knowledge of their clients. Many service providers reported that their support staff had motivational issues concerning the implementation of KWS. Next, three groups of variables that can be linked to KWS use were studied in this project. A first group of variables are the characteristics of the signs of the KWS system that is used. Therefore, in the second study of this research project, we investigated the influence of the sign characteristics of the Flemish KWS system Spreken Met Ondersteuning van Gebaren (SMOG, Speaking with support of signs) on the functional KWS use of 119 adults with ID. We determined the phonological, iconic, and referential characteristics of the basic SMOG signs. The functional KWS use of the 119 participating adults was evaluated using a questionnaire that was filled out by their support workers. In a generalized linear model with a negative binomial distribution (with loglink), we found that the referential characteristics (semantic category, grammatical class, and referential concreteness) had the strongest influence on sign functionality. The iconicity of the signs also played a part, but phonological characteristics were not significantly related to functional sign use. The characteristics of the KWS users themselves are the next group of variables related to KWS use. We studied a selection of client characteristics, namely cognition and language and communication skills, in the third part of this research project. In a cross-sectional observation study, we related these characteristics, as measured with standardized intelligence, language, and communication tests, of 40 participating KWS users to their functional KWS use. This functional KWS use was evaluated using a specifically developed narrative task, and during a 15-minute conversation between the KWS user and the researcher. Mental age did not relate to the KWS use of our participants. Test results on the language and communication tests only correlated with the verbal measures of the functional KWS use, but not with manual sign measures. Functional KWS use during the narrative task did correlate significantly with KWS use during the conversation, indicating that the narrative task is a valid method for evaluating functional KWS use in adults with ID.In the fourth and final study of this research project, KWS was introduced in a Flemish residential and day care service for adults with ID. This was done using a KWS program, in which we taught KWS to eight KWS ambassadors during four 2- hour workshops. In a sign of the week approach, 100 manual signs and the KWS approach were then gradually introduced to all support workers and clients of the service. We evaluated the functional KWS use of 15 adults with ID and communication problems in a narrative task and during a conversation with their support staff, before and after the intervention. A third group of variables possibly of influence on KWS use (besides sign and client characteristics), namely characteristics of the environment, were also investigated in this intervention study. Therefore, we evaluated the functional KWS use of the support workers before and after the intervention as well, during the conversation with their clients. The KWS use of both clients and support staff had increased significantly after the intervention. Clients used KWS for a variety of communicative functions.The results of this research project revealed four important points of action: 1. KWS should be made more accessible in Flanders. This could be done by using the signs from Vlaamse Gebarentaal (VGT, Flemish Sign Language) with a KWS approach instead of the phonologically adapted SMOG signs. Using signs from VGT would also change the SMOG system into a system with an unrestricted vocabulary, which could benefit KWS users in need of a larger or more specific vocabulary. The application of this altered KWS system in individuals with ID should be further studied.2. Alternative methods for language and communication evaluation than the standard-ones, should be used to evaluate these skills in adults with ID who use KWS in particular and AAC in general. The developed narrative task could be a starting point, that should be examined in more detail.3. No prerequisites should be used for allowing an adult with ID to use KWS. Every adult with ID who can understand and/or produce manual signs, can possibly benefit from using KWS. The functional use of KWS should be studied in a larger group of adults with ID, and in individuals with communication impairments that are caused by other disorders as well. 4. KWS can be introduced in a residence or day care centre for adults with ID using a KWS training program that consists of workshops and a sign of the week approach, combined with sufficient resources (such as photographs and video clips of the manual signs). Individual therapy is not always necessary, and many adults with ID are capable of learning KWS through their support staff. How the attitude and motivational issues of support staff could best be influenced, should be further investigated.Our research project shows that, if these points of action were implemented, this could benefit the implementation and functional use of KWS in adults with ID. The ultimate goal of this study, as of any AAC intervention, is to support adults with ID in attaining communicative competence using their means of AAC, in this case KWS. nrpages: 277 status: published

The staff-client interaction plays an important role in the development and maintenance or challenging behaviour of individuals with intellectual disabilities. Particularly^ the mutuality between staff behaviour and client behaviour is important in this context. Furthermore, severe challenging behaviour seems to elicit negative emotional reactions trom staff and these emotions may influence their behaviour. Another variable that influences staff behaviour are the beliefs that staff have about the challenging behaviour (Hastings, 2005). Although some studies have been dons in this domain, further research with more objective measurements is needed to confirm the relevance of these factors. In a first study, wβ have investigated the challenging behaviour of clients, and the beliefs, the emotional reactions, and the behavioural responses of staff members towards this challenging behaviour. We were interested in the possible relationships between these variables. We used four written questionnaires: the 'Challenging Behaviour Attributions scale' (Hastings, lθ≡7)∣ the "Emotional Reactions to Challenging Behaviours scales" (Jones & Hastings, 2003; Mitchell & Hastings, 1998); the “Reactions to Challenging Behaviours scale' (Lambrechts & Maes, 2006); and the ‘Behaviour Problems Inventory’ (Rojahn, Matson, Lott, Esbensen, & Smalls, 2001). One hundred fifty-two staff members working in 20 different residential settings participated. We were interested in specific staff-client dyads and focused on clients with severe or profound intellectual disabilities who displayed self-injurious behaviour, stereotyped behaviour, and/or aggressive/destructive behaviour. In a second study we will further investigate the relations between staff behaviour and challenging behaviour, between staff emotions and staff behaviour, and finally between staff beliefs and staff behaviour. The staff reactions to challenging behaviour will be observed by means of video recording. Staff emotional reactions and staff beliefs will be examined by semi-structured interviews. We will be able to investigate the circumstances that influence challenging behaviour and to look for an answer to the question if it is possible to observe mutual reinforcement processes between care staff and clients. Furthermore, we will have a more detailed and thorough view on staff emotional reactions and staff beliefs. Finally, we will figure out if it is possible to find a link between the reactions to challenging behaviour and the variables examined in the semi-structured interview. status: published

Het thema van ‘kwaliteit van leven’ is zeer actueel in onderzoek met betrekking tot personen met een handicap. Het wordt beschouwd als een ‘sensitizing’ concept dat de hulpverlening aan deze groep van personen leidt in de richting van meer participatie, respect en waardering, keuze en controle, competentie en verbondenheid in relaties. Aspecten van kwaliteit van leven worden vaak gebruikt als persoonsgerichte indicatoren waaraan de kwaliteit van de geboden ondersteuning afgemeten wordt. Personen met ernstige meervoudige beperkingen vereisen een bijzondere ondersteuning omwille van hun zeer specifieke en complexe hulpvragen. Het zijn personen met zowel ernstige cognitieve alsook ernstige motorische functiestoornissen veelal in combinatie met sensorische beperkingen en/of medische problemen. In de hantering van het concept ‘kwaliteit van leven’ bij deze groep van personen worden we geconfronteerd met twee problemen. Een eerste probleem heeft betrekking op de operationalisering van het concept. Er is in de literatuur een tekort aan conceptuele modellen van kwaliteit van leven die op het niveau van de indicatoren aangepast zijn aan de groep van personen met ernstige meervoudige beperkingen. Een tweede probleem is het tekort aan betrouwbare en valide instrumenten om de kwaliteit van leven van deze specifieke doelgroep te evalueren. Met dit doctoraatsonderzoek trachten we aan beide problemen tegemoet te komen. De algemene doelstelling van dit doctoraatsonderzoek is het ontwikkelen van een valide en betrouwbare procedure voor het evalueren van de kwaliteit van leven van en de kwaliteit van ondersteuning geboden aan personen met ernstige meervoudige beperkingen. Om deze doelstelling te bereiken ondernemen we vier stappen. In een eerste onderzoeksfase ontwikkelen we een conceptueel kader dat de grondlijnen uitzet voor de ontwikkeling van de procedure. Vervolgens genereren we in een tweede onderzoeksfase een itemverzameling. Hiervoor bevragen we ouders en directe begeleiders van personen met ernstige meervoudige beperkingen door middel van semi-gestructureerde interviews over domeinen en factoren die zij belangrijk achten voor de kwaliteit van leven van en de kwaliteit van ondersteuning geboden aan deze personen. Deze itemverzameling wordt in een derde onderzoeksfase in de vorm van een Delphi-format voorgelegd aan een expertgroep. Deze expertgroep beoordeelt de itemverzameling met betrekking tot inhoud, formulering, indeling en antwoordmogelijkheden en verzamelt voorstellen voor een afnameprocedure. Op basis van deze beoordeling wordt de evaluatieprocedure geconstrueerd. Tot slot worden in een vierde onderzoeksfase de toepassingsmogelijkheden, de bruikbaarheid en de psychometrische eigenschappen van deze evaluatieprocedure nagegaan door middel van twee soorten van pilootstudies. In een eerste deelstudie gaan we de bruikbaarheid van de evaluatieprocedure na door middel van twaalf meervoudige gevalsstudies in een sequentieel design. In een tweede deelstudie toetsen we de validiteit en de betrouwbaarheid van de evaluatieprocedure door middel van een schriftelijke bevraging bij de ouders, begeleiders en orthopedagogen van honderd cliënten met ernstig meervoudige beperkingen in dagcentra of residentiële voorzieningen in Vlaanderen en Nederland. status: published