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In the transition period between adolescence and young adulthood, individuals with 22q11.2DS are at an increased risk of developing severe psychiatric disorders. Various studies have focused on detecting risk factors, but until now protective factors are still understudied in 22q11.2DS. The current case–control study focuses on the role of resilience and quality of life (QoL) in young adults with 22q11.2DS and behavioural problems, in comparison with persons with an intellectual disability (ID) without a known genetic disorder. Self-report (and caregiver report) standardized questionnaires were used. Predictive general linear models were constructed to compare the resilience and quality of life across both groups (22q11.2DS vs ID-group) and to analyse the association between personal characteristics in both groups. Young adults with a 22q11.2DS show less resilience compared with both the general population norms and young adults with ID. Only a subscale of resilience (Acceptance of self and life) contributes to the reported level of QoL. Reported health problems are not related to resilience, but have an important effect on QoL. Our results suggest different factors are underlying resilience and the relation with QoL in 22q11.2DS and ID in general. These factors deserve more research and are important to take into account in clinical practice. [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]

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

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

Purpose: Key word signing (KWS) entails using manual signs to support the natural speech of individuals with normal hearing and who have communication difficulties. While manual signs from the local sign language may be used for this purpose, some KWS systems have opted for a distinct KWS lexicon. Distinct KWS lexicon typically aims for higher sign iconicity or recognizability to make the lexicon more accessible for individuals with intellectual disabilities. We sought to determine if, in the Belgian Dutch context, signs from such a distinct KWS lexicon (Spreken Met Ondersteuning van Gebaren [Speaking With Support of Signs; SMOG]) were indeed more iconic than their Flemish Sign Language (FSL) counterparts. Method: Participants were 224 adults with typical development who had no signing experience. They rated the resemblance between a FSL sign and its meaning. Raw data on the iconicity of SMOG from a previous study were used. Translucency was statistically and qualitatively compared between the SMOG lexicon and their FSL counterparts. Results: SMOG had an overall higher translucency than FSL and contained a higher number of iconic signs. Conclusion: This finding may support the value of a separate sign lexicon over using sign language signs. Nevertheless, other aspects, such as wide availability and inclusion, need to be considered. [ABSTRACT FROM AUTHOR]

Although family quality of life (FQOL) and the family‐centered approach (FCA) are often conceptually linked, empirical research on their relation is scarce. This study investigated the relation between the FCA and FQOL in families with a child (0–18 years) with an intellectual disability receiving home‐based support (HBS) in Flanders. The impact of the parental work situation and the child's support needs on FQOL (domains) were studied too. Through the Helpgiving Practices Scale (HPS) and the Enabling Practices Scale (EPS), parents of participating families (n = 58) reported about the FCA in their families' HBS. Using the Beach Center FQOL Scale, mainly mothers reported about their families' quality of life. The relation between the realization of the FCA, parental employment, and the child's support needs on the one hand, and FQOL on the other hand was studied via multiple regression analyses. Additionally, the best predicting model was determined for FQOL (domains). Globally, a positive relation between FQOL and the FCA was found. Dependent on the FQOL domain, a different relation was identified with the family‐centered components. Components of the EPS (i.e., comfort and parental autonomy) were better predictors than those of the HPS. The parental work situation was a significant predictor for satisfaction regarding total FQOL (with and without disability‐related support), family interactions, and parenting. The child's support needs were a significant predictor for emotional well‐being. As the first of its kind, this study investigated the relation between FQOL and the FCA in detail. More, in depth, and especially long‐term research is, however needed to fully understand the relation between FQOL and its contributors. [ABSTRACT FROM AUTHOR]

Despite the high prevalence of visual impairments in persons with severe or profound intellectual disability (ID), often a formal diagnosis is unavailable. Direct support workers and staff members have access to the information of the visual functioning through the personal files and build knowledge based on their own experiences. In order to provide individualized and high quality support in daily life, the accuracy and availability of this information of the visual functioning is essential. This study investigates the knowledge of direct support workers and staff members on the visual functioning of their clients and the written information available in the personal files. It is investigated to what extent they do agree on their knowledge and how certain direct support workers and staff members are about their knowledge on the visual functioning. Additionally is investigated to what extent the information available in support files is based on formal assessment. For 104 clients with severe or profound ID a direct support worker and a staff member filled in a questionnaire about their visual functioning. Next, the personal files were analyzed. Direct support workers and staff members respond significantly differently on the questions on the impaired visual functions. Direct support workers rate the certainty level of their knowledge on their clients' visual functions higher than staff members. The personal files lack information on the visual functioning. If information is available, it is mostly based on subjective impressions. The knowledge of direct support workers and staff members and the information available in the personal files provide no comprehensive picture of the visual functioning of the persons with severe or profound ID. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disability are reported to encounter many negative life events during their increasingly long lives. In the absence of protective elements, these may cause toxic stress and trauma. Given the reported negative effects of such adverse events on their quality of life (QoL), the perspective of older people with intellectual disability themselves may be of relevance. The paper aims to discuss these issues. Design/methodology/approach: The authors questioned nine participants with mild intellectual disability, aged 61–88 years old, in four 90-min focus group sessions and thematically analysed the data. Findings: Many recent and bygone negative life events still weighed heavily on the participants. Negative interactions, experiences of loss, lack of control and awareness of one's disability caused stress. Their emotional response contrasted with their contentment, compliance and resilience. Having (had) good relationships, having learnt coping skills, remaining active, talking about past experiences and feeling free of pain, safe, well supported, capable, respected and involved seemed to heighten resilience and protect participants from toxic stress. Research limitations/implications: Monitoring and preventing adverse (childhood) experiences, supporting active/emotional coping strategies, psychotherapy and life story work may facilitate coping with negative events and enhance QoL of elderly people with intellectual disability. Originality/value: Elderly people with mild intellectual disability run a higher risk of experiencing (early) adverse events in life. They are very capable of talking about their experiences, QoL, and the support they need. Focus groups were a reliable method to capture their insights. [ABSTRACT FROM AUTHOR]

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

Abstract: 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. [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]

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. [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]

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. [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]

Background This article is the second in a two-part series. Heyvaert et al. focused on the effectiveness of restraint interventions ( RIs) for reducing challenging behaviour among persons with intellectual disabilities) in the first article. In this second article, Heyvaert et al. focus on experiences with RIs for challenging behaviour among people with intellectual disabilities. Methods A mixed methods research synthesis involving statistical meta-analysis and qualitative meta-synthesis techniques was applied to synthesize 76 retrieved articles. This second article reports on the qualitative meta-synthesis of 17 articles on experiences with RIs for challenging behaviour among people with intellectual disabilities. Results The 17 included articles report on important variables relating to the persons receiving RIs, to the persons giving RIs and to their interactions and relationship, as well as variables situated at the meso- and macro-level. Conclusions The developed model can assist in reflecting on and improving of current RI practices among people with intellectual disabilities. [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 This article is the first in a two-part series: we focus on the effectiveness of restraint interventions ( RIs) for reducing challenging behaviour ( CB) among persons with intellectual disabilities in this first article. In the second article, we focus on experiences with RIs for CB among people with intellectual disabilities. Methods A mixed-methods research synthesis involving statistical meta-analysis and qualitative meta-synthesis techniques was applied to synthesize 76 retrieved articles. This first article reports on the meta-analysis of 59 single-case experiments ( SCEs) on effectiveness of RIs for CB among people with intellectual disabilities. Results and Conclusions The RIs reported on in the SCEs were on average highly effective in reducing CB for people with intellectual disabilities, and this reduction in CB was statistically significant. However, the effects vary significantly over the included participants, and the published data and reported outcomes are rather unrepresentative of the everyday use of RIs among persons with intellectual disabilities. [ABSTRACT FROM AUTHOR]

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. [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]

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

This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated the effect of the support setting and age of people with profound multiple disabilities on this operationalization.A number (n = 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth.Results showed that the five basic domains as described within the model of Felce&Perry [Research in Developmental Disabilities (1995) vol. 16, pp. 51–74;Quality of Life in Health Promotion and Rehabilitation Conceptual Approaches, Issues and Applications(1996a) Sage Publications;Quality of Life.Vol. I:Conceptualization and Measurement(1996b) American Association on Mental Retardation] were identified spontaneously by more than half of the respondents as being salient for the quality of life of people with profound multiple disabilities. When asked explicitly, this value rose to between 88.2 and 100%. The operationalization of these basic domains by parents and direct support staff differed in several aspects from operationalizations for other target groups. Neither age nor support setting turned out to have a significant effect on the operationalization.The results supported the multidimensionality of quality of life and the validity of the basic domains for people with profound multiple disabilities. The content of the domains of quality of life differed, however, to a considerable extent for people with profound multiple disabilities. Furthermore, these people are extremely dependent on others for the gratification of their needs and therefore for their quality of life. [ABSTRACT FROM AUTHOR]

Abstract: The limitations people with profound intellectual disabilities experience in functioning contribute to a vulnerability to self-injurious behavior. Since this problem behavior has important negative consequences for people concerned, examining the effectiveness of treatments is important. In the current meta-analysis, single-case studies investigating non-aversive, non-intrusive forms of reinforcement were combined using hierarchical linear models. This analysis revealed that the average effect of treatment was relatively large and statistically significant. Further, significant variance was observed between both studies and participants. In addition, some evidence was found for a moderator effect of sensory impairment. Finally, no statistically significant moderator effects of medication, motor impairment, setting, age, gender, matching of treatment with behavioral function and contingency were found. [Copyright &y& Elsevier]

Background and Aims: Parenting factors are one of the most striking gaps in the current scientific literature on the development of young children with significant cognitive and motor disabilities. We aim to explore the characteristics of, and the association between, parental behavior and children's interactive engagement within this target group.Methods and Procedures: Twenty-five parent-child dyads (with children aged 6-59 months) were video-taped during a 15-min unstructured play situation. Parents were also asked to complete the Parental Behavior Scale for toddlers. The video-taped observations were scored using the Child and Maternal Behavior Rating Scales.Outcomes and Results: Low levels of parental discipline and child initiation were found. Parental responsivity was positively related to child attention and initiation.Conclusions and Implications: Compared to children with no or other levels of disabilities, this target group exhibits large differences in frequency levels and, to a lesser extent, the concrete operationalization of parenting domains. Further, this study confirms the importance of sensitive responsivity as the primary variable in parenting research. [ABSTRACT FROM AUTHOR]

Abstract: Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study, we investigated the role of attention in the onset and regulation of the emotions of persons with severe or profound ID. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate and attention was measured. Contrary to the expected higher attention to negative stimuli during the onset of negative emotions, we did not find differences in attention in the fourth to sixth second of stimulus presentation. However, in support of the emotion regulation theory of Gross (2008) we did find less attention to the negative stimuli than to the positive stimuli after these first 6s of stimuli presentation. As expected from research in people without disabilities, there was also a negative relationship between the heart rate and the probability of being attentive. Our results suggest that people with severe and profound ID use attentional deployment to regulate their emotions and that, as in people without disabilities, a low heart rate is associated with attention. [Copyright &y& Elsevier]

Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by . As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID. [Copyright &y& Elsevier]