The Use of Snoezelen to Support People With Profound Intellectual and Multiple Disabilities: An International Survey Describing the Perspectives of Support Persons.

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 = 8) supporting people with profound intellectual and multiple disabilities.

Attitudes of support people: a key element when implementing technologies for people with intellectual and visual disabilities.

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.

Snoezelen in people with intellectual disability or dementia: A systematic review.

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 understanding of snoezelen's application characteristics and of how they may relate to effects.

Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities.

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 their family resilience, and if and how it affects their FQOL.

Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions.

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 lacking.

Objective: The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD.

From assistive to inclusive? A systematic review of the uses and effects of technology to support people with pervasive support needs.

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 yielded 64 studies.

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families.

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 process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD).

Assessing the reliability and validity of a health-related quality of life instrument, CPADULT, in a Dutch sample of adults with severe disabilities who are non-ambulatory.

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 roles of adult siblings of individuals with a profound intellectual disability.

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.

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.

Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol.

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.

Support needs of families with a child with profound intellectual and multiple disabilities.

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 needs are age-specific.

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.

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of Symptoms.

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.

Definitions, signs, and symptoms of constipation in people with severe or profound intellectual disabilities: A systematic review.

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 signs and symptoms.

Development of a Dutch Training/Education Program for a Healthy Lifestyle of People With Intellectual Disability.

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 nutrition for people with moderate to profound levels of ID, and to design its evaluation.

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.

Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries.

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 PIMD.

Method: Professionals (N = 148) from three European countries completed a survey on assessment practices.

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.

Development and process evaluation of a motor activity program for people with profound intellectual and multiple disabilities.

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, lacking. This study developed such a program for these people and evaluated the implementation process.

Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory.

Background: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group.

Method: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument.

Use of behaviour change techniques by direct support professionals to support healthy lifestyle behaviour for people with moderate to profound intellectual disabilities.

Background: Behaviour change techniques (BCTs) can be employed to support a healthy lifestyle for people with intellectual disabilities. The aim of this study is to determine whether and which BCTs are used by direct support professionals (DSPs) for supporting healthy lifestyle behaviour of people with moderate to profound intellectual disabilities.

Method: Direct support professionals (n = 18) were observed in their daily work using audio-visual recordings.

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.

Intervention effects on professionals' attitudes towards the participation of adults with visual and severe or profound intellectual disabilities.

Background: We investigated the effects of the "Care for Participation+" (CFP+) intervention on direct support professionals' (DSPs') attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID).

Methods: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs' attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs' written profiles of adults with VSPID.

Results: CPP+ and the Participation Mind Map control group showed a positive trend for the "leisure/recreation," "social relations," and "ability to act" APQ domains compared to the usual care control group.

Construct validity of the Actiwatch-2 for assessing movement in people with profound intellectual and multiple disabilities.

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.