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Direct linkKasper Kruithof; Maartje Hoogsteyns; Ilse Zaal-Schuller; Sylvia Huisman; Dick Willems; Appolonia Nieuwenhuijse – Journal of Intellectual & Developmental Disability, 2024
Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge. Method: We conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their…
Descriptors: Parents, Parent Child Relationship, Knowledge Level, Children
Kruithof, Kasper; Olsman, Erik; Nieuwenhuijse, Appolonia; Willems, Dick – Journal of Intellectual & Developmental Disability, 2022
Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Parent Attitudes, Children
Siméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – International Journal of Developmental Disabilities, 2024
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…
Descriptors: Family Needs, Children, Severe Intellectual Disability, Multiple Disabilities
Geuze, Liesbeth; Goossensen, Anne; Schrevel, Samuel – Journal of Intellectual & Developmental Disability, 2023
Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings: The essential meaning of the…
Descriptors: Foreign Countries, Children, Parent Attitudes, Child Rearing
Luijkx, Jorien; van der Putten, Annette A. J.; Vlaskamp, Carla – Journal of Intellectual & Developmental Disability, 2019
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…
Descriptors: Parent Attitudes, Child Rearing, Severe Intellectual Disability, Multiple Disabilities
Haakma, Ineke; De Boer, Anke A.; Van Esch, Sanne; Minnaert, Alexander E. M. G.; Van Der Putten, Annette A. J – European Journal of Special Needs Education, 2021
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…
Descriptors: Inclusion, Students with Disabilities, Severe Disabilities, Multiple Disabilities
Luijkx, Jorien; van der Putten, Annette A. J.; Vlaskamp, Carla – Journal of Intellectual & Developmental Disability, 2016
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…
Descriptors: Siblings, Severe Intellectual Disability, Multiple Disabilities, Sibling Relationship
Isarin, Jet; van Zadelhoff, Ilse; Wolters-Leermakers, Nina; Speksnijder-Bregman, Marjon; Hannink, Mariën; Knoors, Harry – Deafness & Education International, 2015
An increasing number of deaf children with additional disabilities receive a cochlear implant (CI). International studies on cochlear implantation in deaf children with additional disabilities show less and slower speech and language gains, but improvement in overall quality of life. In order to qualify the concept of quality of life this study…
Descriptors: Foreign Countries, Parent Attitudes, Assistive Technology, Deafness
Ten Brug, Annet; Van der Putten, Annette A. J.; Vlaskamp, Carla – Journal of Intellectual Disabilities, 2013
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…
Descriptors: Story Telling, Preferences, Ability, Children
Munde, Vera; Vlaskamp, Carla; Ruijssenaars, Wied; Nakken, Han – Education and Training in Autism and Developmental Disabilities, 2011
In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of…
Descriptors: Multiple Disabilities, Observation, Severe Disabilities, Cognitive Ability
Veugelers, Rebekka; Benninga, Marc A.; Calis, Elsbeth A. C.; Willemsen, Sten P.; Evenhuis, Heleen; Tibboel, Dick; Penning, Corine – Developmental Medicine & Child Neurology, 2010
Aim: Our aim was to study the prevalence and characteristics of constipation in children with profound multiple disabilities, as data in this area are scarce. Method: A cross-sectional observational study was performed in specialized day-care centres and schools in the Netherlands. The study included 152 children (81 males, 71 females; mean age 9y…
Descriptors: Multiple Disabilities, Incidence, Mental Retardation, Cerebral Palsy
Zijlstra, H. P.; Vlaskamp, C. – Journal of Applied Research in Intellectual Disabilities, 2005
Background: The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method: The medical files, the daily records and daily communication records between parents and professionals were reviewed…
Descriptors: Multiple Disabilities, Foreign Countries, Therapy, Special Education
