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…

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…

Despite the growing introduction of inclusive education, children with profound intellectual and multiple disabilities (PIMD) are barely included. Because an underlying factor here may be the attitudes of those directly involved, the present study focuses on the attitude of parents and relating variables concerning experience with individuals with…

Background: People who have profound intellectual and multiple disabilities face significant challenges to participating in their community and are reported to have few friends. In this paper, the issue of how this is addressed by parent-carers of young women with Rett syndrome is explored. Method: Transcripts of in-depth interviews with 6…

Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…

People with severe disabilities (SD) communicate in complex ways, and their teachers, parents and other involved professionals find it difficult to gain knowledge and share their experiences regarding the person with SD's communication methods. The purpose of this study is to contribute to our understanding of how parents and professionals share…

The Equality Act 2010 further enshrines the duties on organisations set out in the Disability Discrimination Act 2005 to safeguard the rights of vulnerable children. However, disability is a complex phenomenon, which makes the collection of data, and the subsequent identification of children who might be classed as disabled, problematic. This…

The importance of storytelling in social, cultural and educational contexts is well established and documented. The extension of storytelling to people with profound intellectual and multiple disabilities (PIMD) has in recent years been undertaken with an emphasis on the value of sensory experience and the context storytelling provides for social…

Background: The idea that raising a child with disabilities has a negative impact on the parents' relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method: Family demographics were collected at…

In recent years, parents of children with hearing loss and various additional disabilities have shown increasing interest in cochlear implants. This article describes how the program in Hanover, Germany is attempting to respond to this interest. It discusses the selection process for children who receive cochlear implants who have multiple…

The 2007/2008 Parents of Children with Severe Special Needs Survey is conducted to obtain opinions from parents of children with severe special needs to assess their satisfaction with key areas of the education system. A random sample of 816 parents of children with severe special needs completed the survey. Severe special needs descriptions…