Bea Maes

KU Leuven | ku leuven · Research unit for Parenting and Special Education

Background: Instruments on parenting goals are often outdated and don’t consider goals related to capabilities and needs of children with (severe) disabilities.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). Method: The iterative development process relied on academic an...

For people with severe or profound intellectual disability (ID), support staff are important interaction partners. The quality of their interactions, a multidimensional construct, is well documented, but the staff perspective remains underexposed. This study aims to capture the behaviors, thoughts, and emotions of staff when interacting with their...

Inleiding: Sociale interacties zijn van onschatbare waarde voor eenieders welbevinden. Dit geldt evenzeer voor personen met een ernstig of diep verstandelijke beperking. Zij worden vaak ondersteund in organisaties voor dag-opvang of verblijf. Hun begeleiders zijn hier belangrijke interactiepartners, maar hun onderlinge interactie verloopt niet alti...

Caring for children with severe to profound intellectual disabilities (SPID) can be an overwhelming burden for parents, leading them to consider outsourcing some of the care to residential care facilities. However, this decision is complex and emotionally challenging for both the parents and the child. This Interpretative Phenom-enological Analysis...

Background: For individuals with severe or profound intellectual disabilities, support staff are important interaction partners, as they are often supported in day-care centres or group homes. High quality staff-client interactions may contribute to their wellbeing. The clients’ dependency, their unique communication styles, and a work context char...

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...

Purpose: Stuttering may disrupt the speech of individuals with Down syndrome (DS), but standard stuttering therapies may be less adapted to these clients' needs. This study examined if their strength in gesture use can lead to the development of a new stuttering therapy. Method: Eighteen individuals with DS who stutter participated in an experim...

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, phys...

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 stud...

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 paren...

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) w...

Parents of children with severe disabilities have differing attachment-related 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...

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 behaviou...

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...

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 an...

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 pr...

Introduction : Individuals with Down syndrome (DS) often stutter, which can affect their speech intelligibility. Previous research has shown that manual signs can enhance speech intelligibility and comprehensibility. It remains unclear to what extent spontaneous hand gestures, such as iconic and beat gestures, may enhance intelligibility and/or com...

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...

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...

Background 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. Method A partially mixed methods approach (with focus on the quantitative data) was used to clarify parents’ and professionals’ viewpoints regarding t...

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-e...

Background Awareness of stuttering is likely to depend upon the development of the metalinguistic skill to discriminate between fluent speech and stuttering and the ability to identify one’s own speech as fluent or stuttered. Presently, little is known about these abilities in individuals with Down syndrome (DS). Purpose This study investigates wh...

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...

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...

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 chi...

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...

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...

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 comp...

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...

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 chi...

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 provi...

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 k...

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-regulat...

Background: The general developmental as well as the disability specific literature has stressed the crucial influence of parents on their child’s social-emotional development. Attachment theory provides a framework to describe parental roles within the parent-child attachment relationship.The current study explored parents’ perspectives on their r...

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...

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...

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...

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)....

Background Both individuals with intellectual disabilities (ID) and staff may be more inclined to use manual signs during formal than informal activities. In addition, the sign use of individuals with ID and staff is positively related. It is unclear if activity type and the sign use of staff interact as they shape the sign use of individuals with...

Background: Staff may encourage individuals with intellectual disabilities to use manual signs by modelling its use, but implementing key word signing during daily activities can be demanding. Method: Staff's use of manual signs was observed in four special schools and four day centres for adults with intellectual disabilities during communicati...

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 subsca...

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 member...

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 t...

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 support staff used KWS or imitated signs. One-to-one conv...

Background Research 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...

Background: Support staff may diverge in their use of augmentative and alternative communication (AAC) and key word signing (KWS). AAC use is determined by multiple personal and environmental factors. In this study, the relation between KWS attitudes and usage was examined in support staff. Method: Twelve adults with an intellectual disability w...

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...

This study tested whether more anxious and avoidant attachment is linked to decreased support-seeking behavior towards mother during stress in middle childhood, and whether 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...

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. Th...

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...

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 pr...

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. Group activities for children with PIMD in...

We examined the performance of two approaches for synthesizing single-case experimental data: the percentage of non-overlapping data (PND) approach and the hierarchical linear modeling (HLM) approach. The comparison was performed by analyzing an empirical dataset on behavioral interventions for reducing challenging behavior in persons with autism b...

Vande Gaer E., Maes B. ,Kuppens S.

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 p...

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. A mixed-methods researc...

Problem or challenging behaviors are highly prevalent among persons with autism and bring along major risks for the individual with autism and his/her family. In order to reduce the problem behavior, several behavioral interventions are used. We conducted a quantitative synthesis of single-subject studies to examine the efficacy of behavioral inter...

Het experimentele project ‘Intersectorale aanpak van Prioritair toe te wijzen Hulpvragen’ (IPH) was een antwoord op de vaststelling dat er jongeren zijn met een complexe en meervoudige hulpvraag voor wie het heel moeilijk bleek om een aangepast hulpaanbod te realiseren. De toenmalige Vlaams minister van Welzijn, Volksgezondheid en Gezin creëerde in...

The evaluation of language and communication skills in adults who use augmentative and alternative communication (AAC) in general and key word signing (KWS) in particular, can be an elaborate task. Besides being time-consuming and not very similar to natural communication, standard language tests often do not take AAC or KWS into account. Therefore...

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 intell...

Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was c...

Purpose The purpose of this study was to investigate the influence of sign characteristics in a key word signing (KWS) system on the functional use of those signs by adults with intellectual disability (ID). Method All 507 signs from a Flemish KWS system were characterized in terms of phonological, iconic, and referential characteristics. Phonolog...

Vocal challenging behavior (VCB) forms a common problem in individuals with autistic disorder. Since VCB is associated with negative outcomes for the individual and his or her environment, it is important to know how to manage this type of CB. To evaluate the effectiveness of several psychosocial interventions applied to decrease VCB in individuals...

In several subdomains of the social, behavioral, health, and human sciences, research questions are increasingly answered through mixed methods studies, combining qualitative and quantitative evidence and research elements. Accordingly, the importance of including those primary mixed methods research articles in systematic reviews grows. It is gene...

Background: The aim of this descriptive single case study was to describe a unique interaction with a person with profound intellectual and multiple disabilities (PIMD) in a holistic way-focusing on the client, the staff member, and the interacting dyad-and to include the experiential knowledge of the interaction partner. Method: A videotaped in...

Investigating interdyad (i.e. couples of a client and their usual caregiver) differences in naturally occurring patterns of staff reactions to challenging behaviour (e.g. self-injurious, stereotyped and aggressive/destructive behaviour) of clients with severe or profound intellectual disabilities is important to optimise client-staff interactions....

Few studies examined joint attention in interactions with people with profound intellectual and multiple disabilities (PIMD), although being an important component of high-quality interaction. The purpose of this study is to describe initiating joint attention behaviour from people with PIMD and their support workers as well as the sequential relat...

The aim of the present study was to investigate (a) how intergenerational influence takes form within families with a child with a disability, and (b) the extent to which positive and negative influence - as perceived by family members - within and across generations, is predictive of family members' subjective quality of life. The study involved 6...

Background: Behavioural observations are the most frequently used source of information about emotions of people with severe or profound intellectual disabilities but have not yet been validated against other measures of emotion. In this study we wanted to validate the behavioural observations of emotions using respiration (rib cage contribution,...

Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement o...

Literature on the combination of qualitative and quantitative research components at the primary empirical study level has recently accumulated exponentially. However, this combination is only rarely discussed and applied at the research synthesis level. The purpose of this paper is to explore the possible contribution of mixed methods research to...

The objective of this article was to develop and psychometrically evaluate a self-report instrument that would assess interpersonal influence in families. The Influence in Families Questionnaire (IFQ) was developed as a 16-item scale which assesses both positive and negative influence. The IFQ and its subscales, when administered to a sample of 581...

The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of life, was mediated by resilience, quantity and quality of social support for adolescents with a disability and their parents. One hundred and thirty two parents, 90 mothers and 42 fathers and 111 adolescents, aged between 16 and...

Microduplication 22q11.2 is a recently discovered genomic disorder. So far, targeted research on the cognitive and behavioral characteristics of individuals with this microduplication is limited. Therefore, 11 Flemish children (3-13 years old) with a microduplication 22q 1.2 were investigated in order to describe their clinical, developmental and b...

Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness observ...

Background While optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is focused on the environment' or alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking. Therefore, the aim of the present study is to shed...

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 MSS...

More and more attention is given to the psychological effects of challenging behaviour on others. Staff members’ emotional reactions and experiences are important variables in this context, and need to be studied using direct measurement of staff exposure to challenging behaviours. In this study, 12 staff members were confronted with video recordin...

Background: People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method: A Dutch version of the Mini PAS-ADD, which is a screening instrument for identifi...

The effectiveness of different interventions for challenging behavior (CB) in persons with intellectual disabilities (ID) was reviewed by means of a two-phase study. First, a systematic review of 137 meta-analyses and reviews on group-study interventions for CB in persons with ID was conducted. Based on this review, hypotheses concerning the effect...

While alertness is widely acknowledged as one of the most important preconditions for learning and development, individuals with profound intellectual and multiple disabilities (PIMD) experience a wide range of difficulties in the contact with their environment. The aim of the present study was to identify aspects of stimulation situations that inf...

ion has been a frequent discussion topic since the days of Aristotle and Plato. Constructivist theories often espouse the notion of levels of abstraction. Hiebert and Lefevre (1986, pp. 4-5) put it this way: It is useful to distinguish between two levels at which relationships between pieces of mathematical knowledge can be established. One level w...