Search

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.

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.

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.

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.

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.

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.

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.

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.

Background: This study evaluates the effects of reminiscence group work on the subjective well-being of ageing people with intellectual disabilities. Methods: The content of the successive group work sessions was manipulated as follows: a control-phase with three "current topics" sessions, an experimental phase with six "reminiscence" sessions and finally three "current topics" sessions. Life satisfaction, perceived self-competence and mood were measured by questionnaires, filled in by the participants and direct support workers. Results: A quasi-experimental pre-test-post-test design (n = 41) did not detect any changes in life satisfaction and perceived self-competence. For mood, a quasi-experimental ABA-design (n = 41) did not yield an experimental treatment effect, but a significant increase in scores was observed over time. Personality characteristics "extraversion" and "emotional stability", but not memory specificity were found to be significant covariates for the mood scores. Conclusion: Although the study's design did not allow us to confirm the effect of reminiscence group work, the analysis nonetheless revealed some useful indications for further research. Also, interviews conducted before and after the programme resulted in positive appraisals of the programme as a worthwhile and meaningful activity for ageing people with intellectual disability.

Background: 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. Methods: A number (n = 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth. Results: 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. Conclusions: 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.

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: 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]

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]

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]

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]