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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]

Background: A digital micro-intervention offering attachment psychoeducational videos was explored regarding its feasibility in parents of children with severe disabilities. Method: A mixed-methods study (including daily diaries and one-time questionnaires) with 16 parents (75.0% female) of children with severe disabilities (up to 10 years of age) was done during a three-week intervention. Results: Parents were positive about the video series and almost no drop-out occurred. The videos stimulated their learning and thinking and offered parents some personal meaning. Preliminary efficacy tests showed no major changes in parents' parenting self-efficacy (PSE) or perceptions of statements on parent–child attachment. Conclusions: The study showed promising results regarding the micro-interventions' acceptability and implementation. The limited efficacy testing did not show major changes in parents' PSE. Further research is needed to investigate the differential relevance of the micro-intervention, based on parents' needs, as well as its optimal embeddedness in a broader intervention trajectory. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Seclusion and restraint still regularly occur within inpatient mental health services.The Council of Europe requires the development of a policy on for instance age limits, techniques and time limits.However, they only define the outer limits of such a policy by indicating when rights are violated. Within these limits, many choices remain open.Staff and service managers lack clarity on safe and humane procedures. Research literature provides limited and contradictory insights on these matters. What this paper adds to existing knowledge?: The study resulted in 77 best practice recommendations on the practical application of restraint and seclusion as last resort intervention in inpatient youth and adult mental health services, including forensic facilities.To our knowledge, this is the first study in which the development of recommendations on this topic is not only based on scientific evidence, but also on an analysis of European human rights standards and consensus within and between expert‐professionals and experts‐by‐experience. This approach allowed to develop for the first time recommendations on time limits, asking for second opinion, and registration of seclusion and restraint. What are the implications for practice?: The 77 recommendations encourage staff to focus on teamwork, safety measures, humane treatment, age and time limits, asking for second opinion, observation, evaluation and registration when applying seclusion and restraint as last resort intervention.The implementation of the best practice recommendations is feasible provided that they are combined with a broad preventive approach and with collaboration between service managers, staff (educators) and experts‐by‐experience. Under these conditions, the recommendations will improve safety and humane treatment, and reduce harm to both service users and staff. Introduction: Seclusion and restraint still regularly occur within inpatient mental health services. Professionals lack clarity on safe and humane procedures. Nevertheless, a detailed policy on for instance age limits, techniques and time limits is required. Aim: We developed recommendations on the humane and safe application of seclusion, physical intervention and mechanical restraint in inpatient youth and adult mental health services, including forensic facilities. Method: After developing a questionnaire based on a rapid scientific literature review and an analysis of human rights sources stemming from the Council of Europe, 60 expert‐professionals and 18 experts‐by‐experience were consulted in Flanders (Belgium) through a Delphi‐study. Results: After two rounds, all but one statement reached the consensus‐level of 65% in both panels. The study resulted in 77 recommendations on teamwork, communication, materials and techniques, maximum duration, observation, evaluation, registration, second opinion and age limits. Discussion: Combining an evidence, human rights and consensus‐based approach allowed for the first time to develop recommendations on time limits, asking for second opinion and registration. Implications for Practice: When combined with a preventive approach and collaboration between service managers, staff (educators) and experts‐by‐experience, the recommendations will improve safety and humane treatment, and reduce harm to service users and staff. [ABSTRACT FROM AUTHOR]

Displaying selective attachment behaviours is an important developmental milestone for children with severe or profound intellectual disabilities (SPID). In the current study, between-child differences in their selective emotional responses to comfort provided by parents versus strangers were observed. We explored links between these differences and parental sensitivity and motor competence. A home-based experimental observation was conducted in 38 parent-child dyads, exposing children to four naturalistic stressors and to comfort provided by either their parents or a stranger. Emotional behaviour (arousal and valence) was micro-coded and differentiation variables were constructed, reflecting the children's level of differentiation between the parent and the stranger. Parental sensitivity was coded using the Emotional Availability Scales. Results showed that these children's differentiated responses to comfort were related to children's motor competencies (particularly their fine motor skills), but not to parental sensitivity. This study shows the need to go beyond sensitivity to understand individual differences in the most basal aspects of attachment for children with SPID. [ABSTRACT FROM AUTHOR]

Background: Related to the target group of young children with a significant cognitive and motor developmental delay, the aims of this study were to obtain more insight into (the interrelations between) several characteristics of these children's expressive communicative behaviour and to explore associations between child behaviour, partner behaviour and contextual factors. Methods: A coding scheme was specifically developed and used to code observational data of 38 children. Three different communication‐eliciting situations were video recorded. Potential communicative acts were detected, described, coded and counted within various coding categories. Data analysis mainly involved chi‐square tests in combination with Cramer's V and Friedman's two‐way analysis of variance by ranks. Findings: Potential communicative acts of young children with significant cognitive and motor developmental delay can be described in terms of focus, used modalities, level of initiative, communication complexity, signs of functionality and signs of emerging intentionality. The communicative focus of the children is mostly elicited by the prompt given by the communication partner and relates to certain behavioural modalities. Specific scaffolding behaviours of the partner are associated with the communication complexity of the children. Conclusion: This study provides some concrete suggestions on how to organise the interaction with these children. Accessible summary: This paper is about young children with significant cognitive and motor developmental delays.The communication behaviours of this group seem all to alike.We took a closer look at these children's communication behaviours and how these relate to what other people do and the context of their interactions.We found that if you describe these children's low‐level communication behaviours in great detail, interesting differences can be seen, and other people can help the children to focus on specific objects or to shift attention from an object to person they are interacting with. [ABSTRACT FROM AUTHOR]

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

Background: Individuals with developmental language disorder or Williams syndrome are reported to use more gestures than individuals with typical development. However, these two groups differ considerably in visuospatial and language skills, two skills that are hypothesized to shape gesture rate. Aims: We first examined whether children with both developmental language disorder and children Williams syndrome do indeed use more gestures. Our second aim was to disentangle the role of vocabulary and visuospatial skills in the use of supplementary gestures (i.e., containing unique information). To account for participant heterogeneity, analyses included both group comparisons and vocabulary and visuospatial skills at an individual level. As a third aim, the role of visuospatial skills was further examined in relation to gestures containing spatial content. Methods & Procedures: In a cross‐sectional group design, three participant groups watched and then retold a cartoon: children with typical development (n = 25), children with developmental language disorder (n = 25) and children/young people with Williams syndrome (n = 14). Their narrations were transcribed and hand gestures were coded based on gesture–speech integration (redundant, adds information to particular lexical items, gives information that is entirely absent from speech) and spatial content. Participants' expressive vocabulary and visuospatial skills were measured. Outcomes & Results: Between‐group comparisons showed that individuals with developmental language disorder or Williams syndrome did indeed use more gestures. Poisson loglinear modelling demonstrated that a relative higher use of supplementary gestures was determined by lower expressive vocabulary skills. Neither the group distinction nor visuospatial skills shaped the supplementary gesture rate nor spatial gesture rate. Conclusions & Implications: Regardless of neurodevelopmental condition or typical development, a higher use of supplementary gestures was influenced by expressive vocabulary skills. Children with lower vocabulary skills spontaneously capitalized on the multimodality of communication to express constituents that were not present in their verbal speech. This finding is a promising starting point for future gesture intervention studies examining whether implicit modelling of gesture use can encourage gestures even more in these children and if this allows them to achieve higher linguistic complexity. On a methodological note, the observed intra‐group skill variability demonstrates that group comparisons need to be complemented with correlational measures accounting for skills at an individual level. What this paper adds: What is already known on the subject: Children with developmental language disorder and children with Williams syndrome are more inclined to use gestures than typically developing children. Research conducted in adults with typical development points towards the role of lexical and visuospatial skills in gesture use, but it is unclear how these skills shape gesture use in children with atypical development. What this paper adds to existing knowledge: This study compares the rate of gestures that convey meaning that is not expressed in speech between the three aforementioned populations. Novel is the inclusion of the group distinction, individual lexical skills, and visuospatial skills in one encompassing statistical model. What are the potential or actual clinical implications of this work?: The inclination to use gestures that replace speech is related to lexical skills. Visuospatial skills do not seem to play a role and should not be considered as a factor when thinking about gesture intervention. Understanding how gestures relate to specific skills is a first step to understanding how gesture interventions can bolster language production. [ABSTRACT FROM AUTHOR]

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: Evidence shows that neurotypical individuals who stutter use fewer gestures than those who do not stutter. Presently, no research exists about the interaction of stuttering and gestures in individuals with Down syndrome. Method: Twenty‐nine individuals with Down syndrome (7–19 years) of whom 16 stuttered and 13 spoke fluently and 20 neurotypical children (3–10 years) of whom 8 stuttered and 12 spoke fluently participated in this study. In spontaneous speech transcriptions, stuttering events and gestures were coded. Results: Comparisons of gesture frequency during stuttered and fluent speech inside the Down syndrome and neurotypical group show that the Down syndrome group uses significantly more gestures during stuttered than during fluent speech while no significant difference is seen in the neurotypical group. Conclusions: There is some preliminary evidence that individuals with Down syndrome try to compensate for their stuttering events, however, analyses on word level are necessary to confirm a successful compensation. [ABSTRACT FROM AUTHOR]

Background: It is generally acknowledged that parent social support is an important target for intervention. To explore the specific needs of parents of young children with a significant cognitive and motor developmental delay (SDD), we aim to chart the sources and perceived sufficiency of the social support they receive. Method: Within the context of a broader project, 42 parents of a young child with SDD filled out a questionnaire on contextual factors, including information on social support. Results: The majority of parents reported to receive (more than) sufficient support. Insufficiency is primarily reported with regard to practical support. Apart from the partner, grandparents of the child were the most common source of support. Conclusions: This study confirms the importance of professional support and work‐life balance within this specific target group. Specific attention for practical support needs seems warranted considering the high basic care needs of these children. [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]

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]

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]

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]

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]

Background: Children with a significant cognitive and motor developmental delay are pre‐symbolic communicators. The primary aim of this study was to reveal the variability within the communicative functioning of this group of children in terms of communication level, the reasons to communicate and behavioural expressions. Methods: Twenty‐six children between 14 and 58 months with a significant cognitive and motor developmental delay were recruited. The Communication Matrix of Rowland (2011, Communication Disorders Quarterly, 32, 190) was used to integrate different sources of information on the children's communicative functioning. Results: These children primarily communicated at the level of pre‐intentional and intentional behaviour, aimed at refusing, obtaining and, to a lesser extent, social purposes. Conclusions: To develop or adapt early intervention strategies, and to monitor progress in communicative development, an even more nuanced view on these children's communicative utterances in terms of frequency, duration, idiosyncrasy and context relatedness is needed. [ABSTRACT FROM AUTHOR]

Families including a young child with a significant cognitive and motor developmental delay need to adapt their routines to the child's needs, while balancing the resources, needs and values of the whole family system. We aim to characterize if and how their routines are sustainable in terms of ecological fit, congruence and meaningfulness, in comparison with families including a typically developing child. Based on an adapted version of the Ecocultural Family Interview, conducted with one or both parent(s), the routines of 6 families within the study group and 5 families within the control group were analysed by combining directed content analysis with quantitative ratings. A myriad of common as well as group-specific indicators of ecological fit, strategies for reaching congruence as well as reported family values were identified. Parents actively influence family life sustainability. However, families including a child with complex needs are more dependent on others and could benefit greatly from improving the organization of formal support. [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]

Mixed methods single case research (MMSCR) is research in which single case experimental and qualitative case study methodologies, and their accompanying sets of methods and techniques, are integrated to answer research questions that concern a single case. This article discusses the historical roots and the distinct nature of MMSCR, the kinds of knowledge MMSCR produces, its philosophical underpinnings, examples of MMSCR, and the trustworthiness and validity of MMSCR. Methodological challenges relate to the development of a critical appraisal tool for MMSCR, to the team work that is involved in designing and conducting MMSCR studies, and to the application of mixed methods research synthesis for multiple case studies and single case experiments. [ABSTRACT FROM AUTHOR]

Background: Everyday activities are an important setting for stimulating child functioning, but are understudied in young children with a significant cognitive and motor developmental delay. Therefore, we aim to characterize their family activities in terms of diversity, frequency, child engagement and family member's presence, compared to typically developing children. Methods: By asking a parent to fill out an adapted version of the Child Participation in Family Activities questionnaire, the activity pattern of 49 children within the study group and 45 children within the control group were assessed and compared. Results: Children in the study group generally experience less diverse activities (with an additional lower frequency of out‐of‐home activities) and show lower engagement levels compared to typically developing children. Conclusions: Incorporating high levels of personal interaction, highly stimulating activities and adapted leisure activities into the daily activity pattern of children with multiple disabilities might be a pathway to increased engagement levels. [ABSTRACT FROM AUTHOR]

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: The hallmark of attachment is that contact, proximity and relief from stress are sought from specific individuals, laying important groundwork for healthy socioemotional functioning. This study investigated the extent to which differentiated attachment behaviour can be observed in young children with significant developmental delay (DD). Method: Video‐taped observations of the parent–child and stranger–child interaction were conducted at home and complemented with questionnaires in 20 families with a child with significant DD (age 2–7 years with an average DD of 49 months). Results: Children displayed more intense and persistent contact‐seeking, contact‐maintaining and resistant behaviour in the episodes with their parent compared to the episodes with the stranger. Parent‐reported secure attachment behaviour was slightly more characteristic towards mother compared to father. Conclusions: Even children with significant DD develop differentiated attachment behaviour. Detailed observations may support parents in identifying the interactions that make the attachment relationship with their child special. [ABSTRACT FROM AUTHOR]

This study examined family members’ opinions regarding their family quality of life (FQOL). Parents (n = 97) and youngsters (n = 24) of 63 families with a child with an intellectual disability (ID) receiving home-based support completed the Beach Center FQOL Scale. Multilevel models detected substantial variability in FQOL scores and in most subscale scores both within and between families. The observed differences were partly explained by the respondent’s age, the parents’ employment situation, and the support needs of the child with an ID. Role of the family member and gender of the parent could not explain this variability. By including and comparing multiple family members’ opinions, this study contributes to the methodological and conceptual discussions about measuring FQOL. [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]

Purpose: In services for adults with intellectual disabilities, various staff members may have different key word signing (KWS) skills and conversational style. Little is known about how these clients use KWS with different staff members. Therefore, we observed staff–client conversations and examined how clients’ KWS usage was shaped by staff members’ KWS usage and conversational style. Method: Three 10-min dyadic conversations between an adult with moderate or severe intellectual disabilities (N = 15) and three familiar staff members were filmed and transcribed. The KWS usage and conversational responsivity in the transcriptions was analyzed at group (using generalized estimating equations), subgroup, and individual levels. Results: Clients appeared to produce significantly more KWS as partners imitated more signs and as partners were more responsive. There was a negative interaction between these two factors. Subgroup analyses showed that spontaneity of clients’ KWS usage was a continuum. Conclusion: Findings suggest that staff can encourage clients’ KWS usage by imitating manual signs but that clients’ response efficiency should also be taken into account. [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]

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]

Purpose: Research has demonstrated that formal training is essential for professionals to learn key word signing. Yet, the particular didactic strategies have not been studied. Therefore, this study compared the effectiveness of verbal and video feedback in a key word signing training for future direct support staff. Method: Forty-nine future direct support staff were randomly assigned to 1 of 3 key word signing training programs: modeling and verbal feedback (classical method [CM]), additional video feedback (+ViF), and additional video feedback and photo reminder (+ViF/R). Signing accuracy and training acceptability were measured 1 week after and 7 months after training. Results: Participants from the +ViF/R program achieved significantly higher signing accuracy compared with the CM group. Acceptability ratings did not differ between any of the groups. Conclusion: Results suggest that at an equal time investment, the programs containing more training components were more effective. Research on the effect of rehearsal on signing maintenance is warranted. [ABSTRACT FROM AUTHOR]

This study tested whether children's more anxious and avoidant attachment is linked to decreased support-seeking behavior toward their mother during stress in middle childhood, and whether children's decreased support-seeking behavior enhances the impact of experiencing life events on the increase of depressive symptoms 18 months later. Ninety-eight 8- to 12-year-old children filled out questionnaires assessing their level of anxious and avoidant attachment and depressive symptoms. Children's support-seeking behavior was observed through measuring the time children waited before calling for their mother's help while carrying out a stressful task. Results supported the hypothesis that more anxiously or avoidantly attached children waited longer before seeking maternal support. Moreover, waiting longer was related to increased depressive symptoms at follow-up in children who reported more experienced life events. [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]