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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., (© 2022 John Wiley & Sons Ltd.)

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., (© 2021 John Wiley & Sons Ltd.)

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., (© 2020 John Wiley & Sons Ltd.)

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., (© 2019 John Wiley & Sons Ltd.)

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., (© 2019 John Wiley & Sons Ltd.)

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., (© 2018 John Wiley & Sons Ltd.)

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., (© 2018 John Wiley & Sons Ltd.)

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., (© 2015 John Wiley & Sons Ltd.)

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., (© 2015 John Wiley & Sons Ltd.)

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., (© 2014 John Wiley & Sons Ltd.)

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., (© 2014 John Wiley & Sons Ltd.)

Background: Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in practice of the MSST books in persons with profound intellectual and multiple disabilities (PIMD)., Materials and Methods: Forty-nine persons with PIMD and their direct support person participated. We analysed if the books are constructed and read according to guidelines. Content and used stimuli were related to age., Results: Of the books 84% were constructed according to guidelines. In just 1.3% of the sessions, the story was read as intended. Regarding content, 67.4% of the stories focused on daily life excursions. Tactile stimuli were used most. Age related to stimuli choice, but not to content., Conclusions: Although most books were properly constructed, guidelines were barely followed during reading which may negatively influence the effectiveness., (© 2012 Blackwell Publishing Ltd.)