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View article: Involving Adult Siblings in the Lives of Individuals With Pervasive Support Needs: Attitudes of Healthcare Professionals
Involving Adult Siblings in the Lives of Individuals With Pervasive Support Needs: Attitudes of Healthcare Professionals Open
Background Facilitating adult sibling involvement for individuals with pervasive support needs is important. This study explores the attitudes of healthcare professionals in this process. Method The attitudes of healthcare professionals ( …
View article: Construct validity of an adult pain observation scale for people with profound intellectual and multiple disabilities: The APOS-PIMD
Construct validity of an adult pain observation scale for people with profound intellectual and multiple disabilities: The APOS-PIMD Open
A scale containing 9 items (APOS-PIMD) with reasonable construct validity and sufficient reliability was developed, which can be used to measure pain in adults with profound intellectual and multiple disabilities in daily situations.
View article: Development of an Online Training Course for Government Employees to Support Families With a Child With Profound Intellectual and Multiple Disabilities
Development of an Online Training Course for Government Employees to Support Families With a Child With Profound Intellectual and Multiple Disabilities Open
Background Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a posi…
View article: EXPERIENCES AND SUPPORT NEEDS OF FAMILIES RAISING ADOLESCENTS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES DURING THE TRANSITION TO ADULTHOOD
EXPERIENCES AND SUPPORT NEEDS OF FAMILIES RAISING ADOLESCENTS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES DURING THE TRANSITION TO ADULTHOOD Open
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 through…
View article: Attitudes of support people: a key element when implementing technologies for people with intellectual and visual disabilities
Attitudes of support people: a key element when implementing technologies for people with intellectual and visual disabilities Open
Support people's effort expectancy and attitude play a significant role in their intention to use technologies when supporting people with intellectual and visual disabilities, with attitude emerging as pivotal factor.
View article: The prevalence of bruxism in children with profound intellectual and multiple disabilities; a systematic review and meta-analysis
The prevalence of bruxism in children with profound intellectual and multiple disabilities; a systematic review and meta-analysis Open
Introduction: Bruxism is a repetitive masticatory muscle activity that may cause substantial morbidity and reduce the quality of life in children with profound intellectual and multiple disabilities. Assessment methods most commonly used w…
View article: Experiences of Adult Siblings of Individuals With an Intellectual Disability and Pervasive Support Needs
Experiences of Adult Siblings of Individuals With an Intellectual Disability and Pervasive Support Needs Open
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…
View article: Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities
Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities Open
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 fam…
View article: Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions
Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions Open
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 …
View article: An analysis of visual functioning and cerebral visual impairments in children with profound intellectual and multiple disabilities
An analysis of visual functioning and cerebral visual impairments in children with profound intellectual and multiple disabilities Open
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/…
View article: From assistive to inclusive? A systematic review of the uses and effects of technology to support people with pervasive support needs
From assistive to inclusive? A systematic review of the uses and effects of technology to support people with pervasive support needs Open
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 s…
View article: Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU‐PIMD to support families
Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU‐PIMD to support families Open
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 stro…
View article: The roles of adult siblings of individuals with a profound intellectual disability
The roles of adult siblings of individuals with a profound intellectual disability Open
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 participa…
View article: Dementia in People with Severe/Profound Intellectual (And Multiple) Disabilities, and Its Natural History
Dementia in People with Severe/Profound Intellectual (And Multiple) Disabilities, and Its Natural History Open
These results contribute to enhance our understanding of dementia in people with SPI(M)D, which is essential for earlier recognizing and diagnosing dementia.
View article: Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities
Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities Open
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 …
View article: Towards criteria and symptoms of constipation in people with severe or profound intellectual and multiple disabilities: A Delphi study
Towards criteria and symptoms of constipation in people with severe or profound intellectual and multiple disabilities: A Delphi study Open
It was possible to compile a list of generic criteria related to the domains 'Defecation' (n = 5) and 'Physical features' (n = 3) supplemented with generic symptoms related to the domain 'Behavioural/Emotional' (n = 5). We propose using bo…
View article: Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol
Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol Open
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 …
View article: Support needs of families with a child with profound intellectual and multiple disabilities
Support needs of families with a child with profound intellectual and multiple disabilities Open
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, knowl…
View article: A questionnaire to measure direct support professionals’ attitude towards healthy nutrition of people with intellectual disabilities
A questionnaire to measure direct support professionals’ attitude towards healthy nutrition of people with intellectual disabilities Open
The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.
View article: Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities
Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities Open
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 indi…
View article: Behaviour change techniques used in lifestyle support of adults with mild intellectual disabilities
Behaviour change techniques used in lifestyle support of adults with mild intellectual disabilities Open
Background Professional caregivers are important in the daily support of lifestyle change for adults with mild intellectual disabilities; however, little is known about which behaviour change techniques (BCTs) are actually used. This study…
View article: Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of Symptoms
Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of Symptoms Open
Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
View article: Development of a Dutch Training/Education Program for a Healthy Lifestyle of People With Intellectual Disability
Development of a Dutch Training/Education Program for a Healthy Lifestyle of People With Intellectual Disability Open
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, th…
View article: Effects of the “Care for Participation+” Intervention on the Participation of Adults With Visual and Severe or Profound Intellectual Disabilities: A Nonrandomized Controlled Trial
Effects of the “Care for Participation+” Intervention on the Participation of Adults With Visual and Severe or Profound Intellectual Disabilities: A Nonrandomized Controlled Trial Open
Background The “Care for Participation+” (CFP+) intervention was developed in order to change the attitudes of direct support professionals (DSPs) regarding the participation of adults with visual and severe or profound ID (VSPID). Aims Th…
View article: Dementia symptoms in persons with severe/profound intellectual disability: Expertise of practice
Dementia symptoms in persons with severe/profound intellectual disability: Expertise of practice Open
Background: In people with severe or profound intellectual disabilities, it is difficult to diagnose dementia. As timely identification and diagnosis of dementia allows for a timely response to changing client wishes and needs, this study …
View article: The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms
The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms Open
Background Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symp…
View article: Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs
Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs Open
Background Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examin…