Annette van der Putten

University of Groningen | RUG

There is a lack of knowledge about families raising adolescents with profound intellectual and multiple disabilities (PIMD) during the transition to adulthood. This study explores the experiences and support needs of these families throughout this transition. A qualitative design was used, consisting of semi-structured interviews with mothers (N =...

Background Snoezelen is often used for people with profound intellectual and multiple disabilities, but scarcely evaluated. This study aimed to provide insight into the application and perceived effects of snoezelen from the perspective of support persons. Method We conducted an international survey with professionals ( n = 130) and relatives ( n...

Aim: The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regard...

Siblings are important in the lives of individuals with an intellectual disability and pervasive support needs; however, adults’ experiences of the things they do with or for their siblings with pervasive support needs remain underexplored. This study examined positive and challenging aspects of their roles related to their siblings. An online ques...

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience the...

Background It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently la...

The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized research protocol (SRP) of 73 children w...

Background Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic. Method A search of four databases y...

Background For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition p...

Background A measure to provide insight regarding health‐related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the psychometr...

Background Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results Most participants (89.7%) assumed mu...

Background Snoezelen focuses on multisensory stimulation in an adapted environment and was originally developed for people with severe and profound intellectual (and multiple) disabilities. Snoezelen has been used for many years with various target groups and for different purposes. Variation in its application has resulted in a lack of understandi...

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...

In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the per...

Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. Aim: This Delphi study aims to compi...

Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD. Methods: We developed an instruction protocol for the assessmen...

Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child’s pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which...

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...

Background Direct support professionals’ (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. Method The previously validated Health Enh...

Introduction Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening...

Background It is difficult to diagnose constipation for people with severe or profound intellectual disabilities. Definitions for this are ambiguous, and the symptoms and signs are often unnoticed. The aim of this study is to identify clear definitions of constipation for people with different levels of intellectual disabilities and to identify sig...

Introduction: Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods: Care professionals and fami...

Individuals with intellectual disability (ID) need support from direct support professionals (DSPs) to engage in a healthy lifestyle. However, literature shows DSPs feel insufficiently equipped to support a healthy lifestyle. Therefore, the aim of this study is to develop a theory-based program for DSPs to support physical activity and healthy nutr...

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...

The Behavioural Appraisal Scales (BAS) were developed in The Netherlands to assess functional abilities of people with profound intellectual and multiple disabilities (PIMD). It is recommended that further studies examine the psychometric properties of the BAS. The aim of this study was to evaluate and, if necessary, improve the content validity of...

Background There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary outcomes of a theory-based training and edu...

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...

Background Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with P...

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 support of people with profound intellectual and multiple disabilities (PIMD) rarely focused on motor activity, which might have negative consequences for the quality of life of these people. Evidence-based motor activity programs that present individually tailored and structural motor activity for these people are, regretfully, lack...

In the Netherlands, the trend towards inclusion has led to the development of a ‘To School Together’ programme in which students with profound intellectual and multiple disabilities (PIMD) receive tailored care and education during the school day in a special classroom (‘To School Together’ class) within a mainstream school. Besides shared activiti...

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...

Background: Research about the psychometric properties of the Behavioural Appraisal Scales (BAS) in people with profound intellectual and multiple disabilities (PIMD) is limited. This study evaluates invariance in factor structure, item bias and convergent validity of the BAS. Methods: Data on the BAS from two studies (n = 25; n = 52) were analysed...

Background: Valid measures to assess either small or assisted performed movements of people with profound intellectual and multiple disabilities (PIMD) are required. We analysed the construct validity of the Actiwatch-2 to assess movement in people with PIMD. Method: Twenty-two persons with PIMD were video recorded while wearing an Actiwatch-2. We...

Background: While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. We conducted a process evaluation of the implementation of 'Care for Participation+' (CFP+), a new intervention targe...

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...

Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the...

Background While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions for improve their participation are lacking. We conducted a process evaluation of the implementation of ‘Care for Participation+’ (CFP+), a new intervention target...

Background: Physical-activity approaches for people with intellectual disabilities (IDs) are more likely to be effective and sustainable if they also target direct support professionals' behaviour. However, no tools to measure the behavioural determinants for direct support professionals are available as of yet. This study aims to construct a self-...

Purpose: The study aims to explore factors that influence (facilitate or impede) direct support professionals supporting people with intellectual disabilities in engaging in physical activity. Influencing factors will be synthesized into a conceptual model to set the stage for developing future interventions and policies to change direct support pr...

Background Direct support professionals play an important role in facilitating physical activity support for people with intellectual disabilities (ID). This study examined how the characteristics of people with ID and the characteristics of direct support professionals are related to the professionals’ behaviour when supporting people with ID in p...

Background The purpose of this study is to evaluate the longitudinal validity of the Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a health‐related quality of life instrument for non‐ambulatory children with severe motor disabilities and accompanying disorders. Methods The effect of two inter...

Background: The extent of participation of adults with visual and severe or profound intellectual disabilities (VSPID) is unclear. Aims: To explore participation of adults with VSPID and the association between occurrence and importance of aspects of participation. Methods: Individual support plans (ISPs) of 40 adults with VSPID were analyzed:...

Background Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions betwe...

One of the benefits of physical activity in people with profound intellectual and multiple disabilities (PIMD) is an increase in alertness. This study investigated the effect of a power-assisted exercise intervention on alertness and the relationship of this effect to the level of additional motor and visual impairments in people with PIMD. A rando...

Background: People with intellectual disabilities (ID) undertake extremely low levels of physical activity. Aims: To enhance understanding concerning low levels of physical activity in people with ID, this study has three aims: (1) to identify barriers to and facilitators of physical activity in people with ID; (2) to examine differences in barrier...

Background: People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention,...

Background: This study analysed parents’ positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of ch...

Research on temperament has evolved substantially throughout the last years. Assessing temperament in a child gives information about why the child reacts differently in different situations and can be seen as one of the variables playing a role in determining adaptive and maladaptive outcomes. Insight into the temperament of the child, therefore,...

Kinderen en volwassenen met zeer ernstige verstandelijke en meervoudige beperkingen: tijd voor een nieuw perspectief De afgelopen weken was er in diverse programma's op de Nederlandse tv en radio aandacht voor de problematiek waar ouders van kinderen met zeer ernstige verstandelijke en meervoudige beperkingen dagelijks mee te maken hebben. Dit zijn...

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of Care...

Background: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. Aims: The purpos...

Background: Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children....

Objective: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention. Design: Pilot randomised controlled trial. Setting...

Background People with profound intellectual and multiple disabilities (PIMD) are at risk of being motorically inactive. This study investigated the degree and type of motor activation in daily practice and its relationship to personal and contextual factors. Method A total of 58 participants with PIMD participated in the study. Data concerning the...

Dit onderzoek richtte zich op het meten van temperament bij jonge kinderen met zeer ernstige verstandelijke en meervoudige beperkingen (ZEVMB) en de invloed die de motorische beperkingen kunnen hebben op de uitkomst hiervan. Aan de hand van een literatuurstudie zijn instrumenten voor het meten van temperament geïnventariseerd. Geen van de 138 gevon...

Background Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling’s quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a...

Aim: It is generally acknowledged that being physically active is important for people with intellectual disabilities (ID) because of the positive effects on physical and mental health. However, physical activity seems to be a minor part of the support provided to people with ID, especially to those with severe or profound ID. This study provides a...

Aim: Motor activation of persons with profound intellectual and multiple disabilities (PIMD) in daily practice is rather limited, notwithstanding the obvious benefit. Given the needs of people with PIMD, direct support persons are to a great extent responsible for including motor activation in their daily work routine. The facilitators and barriers...

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of peop...

Aim: This was the first study to investigate the factors associated with health-related quality of life (HRQoL) in non-ambulatory children with cerebral palsy (CP), based on a HRQoL measure specifically developed for this population. Methods: The Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD-...

It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabiliti...

Background: People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first...

Background: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Ther...

Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviou...

Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A...

Background: Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study...

Background: Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in g...

Personen met (zeer) ernstige verstandelijke en meervoudige beperkingen (ZEVMB) hebben door de ernst van hun beperkingen een verhoogd risico op motorische inactiviteit. Dit onderzoek analyseerde de mate waarin en manier waarop personen met ZEVMB in residentiële voorzieningen motorisch worden geactiveerd én de relatie met persoonlijke- en contextuele...

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purp...

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...

Er bestaat weinig kennis over de effectiviteit van bewegingsgeoriënteerde interventies voor personen met (zeer) ernstige verstandelijke beperkingen al dan niet in combinatie met motorische beperkingen. Het doel van dit onderzoek was het vaststellen van de effecten van bewegingsgeoriënteerde interventies op het motorisch, cognitief en/of sociaal fun...

Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the alertnes...

While it is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor interventions designed to improve motor, cognitive, and/or...

Aim: The total study aims to develop a protocol for establishing and maintaining social networks for people with profound intellectual and multiple disabilities (PIMD). The first step focusses on the role of the professionals in the maintenance and expansion of the social networks of persons with PIMD living in a residential facility in the Netherl...

As some people with profound intellectual and multiple disabilities (PIMD) are at a high risk of developing a challenging behavior, it is useful to look at measures taken to prevent or diminish this type of behavior. The authors undertook a study of how self-injurious, stereotypical, destructive, or aggressive behaviors are addressed in daily pract...

Purpose: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP). Methods: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV-V) partic...

A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when...

Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to...

As physical fitness and health are related to physical activity, it is important to gain insight into the physical activity levels of persons with Profound Intellectual and Multiple Disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate pa...

Aim: Multi-sensory storytelling (MSST) books are personalized stories for persons with profound intellectual and multiple disabilities (PIMD). In MSST, sensory stimuli are used in addition to a short verbal text to optimize alertness and the engagement of the person with PIMD. Furthermore, white boards, on which the stimuli are presented, are used...

Aim: Research shows that direct support staff (DSS) of persons with profound intellectual and multiple disabilities (PIMD) often lack knowledge about their clients’ sensory and contextual preferences and abilities. The aim of this study is to describe how knowledge was gathered by using multi-sensory storytelling (MSST), and to examine if this newl...