Changes in the early communicative behaviors of young children with significant cognitive and motor developmental delays in a two-year span.

INTRODUCTION: This study examines longitudinal changes in communicative behavior of young children with significant cognitive and motor developmental delays (SDD) and determines their individual communicative trajectories. A second focus of this study is the relation of changes in communicative behavior with motor skills. METHODS: Data consists of codes resulting from a self-developed coding scheme used on observations of 23 children in three different settings and responses on a questionnaire. First, group trends were determined to find out whether communication-related variables tend to significantly change over the course of two years. Furthermore, these findings were contrasted with the individual trajectories of the children. Next, the association of initial communicative skills and (the acquisition of) specific motor skills with the change in their communicative functioning was studied. Wilcoxon Signed Ranks and correlational analyses were used to answer the research questions. RESULTS: Out of sixteen different variables related to communicative behavior, ten changed significantly over the course of two years. Children with more focus on prompt on the first datapoint showed a significantly larger increase of signs of functionality. Still, all children showed highly individual trajectories. Children with better motor skills on the first datapoint showed a significantly larger increase in communication rate. CONCLUSIONS: Results show that if a myriad of detailed variables are taken into account children with significant cognitive and motor developmental disabilities do change regarding their communicative functioning, but that they tend to all show unique developmental trajectories. Children with stronger skills in some aspects of communication and motor functioning, can be considered advantaged regarding their communicative development.

Describing the communicative profiles of young children with a significant cognitive and motor developmental delay.

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.

Changes in the social-emotional functioning of young children with a significant cognitive and motor developmental delay across a two-year period.

Children with a significant cognitive and motor developmental delay (SDD) are vulnerable for the development of (future) behavioral and mental health problems. To support children within this target group, knowledge on their social-emotional development is necessary. Therefore, in this paper, an explorative assessment of the changes in the social-emotional functioning of children with SDD over a two-year period was done. Yearly semi-structured interviews with one or more primary caregiver(s) of 25 children were conducted and analyzed on 13 domains of social-emotional functioning, according to an adapted version of the Scale for Emotional Development - Revised (SED-R). This study showed a lot of variation in individual and group patterns of change across the two-year period. Charting the social-emotional development in this target group is challenging and requires further in-depth analysis of individual trajectories as well as more fine-grained and long-term data collection.

The social-emotional functioning of young children with a significant cognitive and motor developmental delay.

Children with a significant cognitive and motor developmental delay (SDD) are vulnerable for the development of (future) behavioral and mental health problems. This paper aims to assess the social-emotional functioning of these children, both globally and in various domains. Semi-structured interviews with one or more primary caregiver(s) of 45 children were conducted and analyzed on 13 domains of social-emotional functioning, according to the Scale for Emotional Development - Revised (SED-R). The SED-R scoring system was slightly adapted in the current study in order to elucidate more subtle differences between children. A general delayed social-emotional development was found, with children functioning within different phases across domains and certain domains generally showing higher or lower scores. To capture the emotional needs of children with SDD, a more disaggregated scoring system seems valuable so that both the global level and the level per domain can be taken in consideration in designing interventions.

Lessons learned: A critical reflection on child- and contextual variables related to the development of children with a significant cognitive and motor developmental delay.

BACKGROUND: The scientific study of young children with a significant cognitive and motor developmental delay is challenging due to the children's complex disabilities and high demands on family life and professional support. We aim to critically reflect on the measurement and analysis of child- and contextual variables within an ongoing research project on these children's developmental trajectories. METHOD: The OJKO-project tracked the development of a sample of children (n = 45) between the age of 6 months and 4 years with a significant cognitive and motor developmental delay, in Belgium and the Netherlands. RESULTS: The complexity of the children's disabilities and daily life context, and subsequent challenges in measurement and analysis of variables, were confirmed and reflected upon. CONCLUSIONS: Due to the uniqueness and complexity of this target group, research should be characterized by creativity, perseverance and substantial modesty in the immediate generalization of results.

'We can't do it alone': Perceived social support in parents of children with a significant cognitive and motor developmental delay.

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.

In search of a novel way to analyze early communicative behavior.

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.

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities.

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.

Parental behavior and child interactive engagement: a longitudinal study on children with a significant cognitive and motor developmental delay.

Knowledge on the long-term interactive interplay between children with a significant cognitive and motor developmental delay and their parents is very scarce. We aimed to characterize the (in)variability and potential mutual influence of parent's interactional style and child interactive engagement throughout early childhood. Every six months over the course of two years, thirty-five parent-child dyads (children aged 6-59 months) living in Flanders (Belgium) or the Netherlands were video-taped during a 15-minute unstructured play situation. Video-taped observations were scored using the Child and Maternal Behavior Rating Scales. No consistent group-level trend was found. Within singular interactions, parent's responsive behavior and child interactive engagement (attention and initiation) seem to be strongly related. Initial child initiation seems to positively predict parents' achievement orientation and directive behavior two years later. Parental responsiveness might be an effective interactional strategy to increase child engagement and higher levels of engagement in children possibly can facilitate parental responsiveness within a concrete interaction. The more initiative children show, the more parents might have hope for developmental benefits resulting from a directive/achievement oriented approach. Further research is warranted applying more differentiated and dynamically evaluated outcome measures and a longer follow-up time frame, with specific attention to inter-individual differences.

Communicative abilities in young children with a significant cognitive and motor developmental delay.

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.

Exploring family activities and child engagement: A study on children with a significant cognitive and motor developmental delay.

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.

Parent-child interaction: A micro-level sequential approach in children with a significant cognitive and motor developmental delay.

BACKGROUND & AIMS: Previous research indicates that young children with a significant cognitive and motor developmental delay show low levels of interactive engagement, their parents are generally responsive towards them and these variables are positively correlated. Adapting a micro-level approach, we aim to go beyond macro-level and correlational analyses by charting the frequency, intra-individual co-occurrence and inter-individual temporal dependency of specific interactive behaviors. METHODS & PROCEDURES: Twenty-nine parent-child dyads (with children aged 6-59 months) were video-taped during a 15-minute unstructured play situation. Based on a self-developed coding scheme, interactive behaviors were coded continuously and analyzed using a three-step sequential analysis approach. OUTCOMES & RESULTS: Parents and children systematically combine either more socially-oriented or more object-oriented behaviors. Socially-oriented behaviors are less frequent in children, especially looking at and touching the partner occurs less. Socially- and object-oriented behavioral clusters are generally independent from each other and instigate/maintain the same type of behaviors in the interaction partner. While children's socially oriented behavior(al cluster)s seem to need a parental 'trigger', parents will more often independently engage with their child despite low child responsiveness. CONCLUSIONS AND IMPLICATIONS: Further intervention-oriented research is needed to confirm this study's results and translate them into concrete guidelines for parents.

Exploring parental behavior and child interactive engagement: A study on children with a significant cognitive and motor developmental delay.

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