Our path together: Development of the inclusive parenting goals questionnaire.

Instruments on parenting goals are often outdated and don't consider goals related to capabilities and needs of children with (severe) disabilities. This study aimed to develop an inclusive questionnaire on parenting goals applicable to parents of all children (0-21 years). The iterative development process relied on academic and experiential expertise of parents and professionals; and included consultation of relevant literature, interviews with 6 parents of a child with severe to profound intellectual disabilities, a feedback round with diverse stakeholders, and a pilot study.

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.

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.

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.

'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.

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.

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.

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.

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).

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.

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.

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.

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.

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.