ABSTRACT 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 positive and meaningful life. Method: A product to support …

Chapter 1: General introduction. A specific group of people with disabilities includes individuals with profound intellectual and multiple disabilities (PIMD). However, individuals with PIMD form a heterogeneous group regarding the origins of their underlying conditions leading to profound disabilities …

Er is een gebrek aan kennis over gezinnen die adolescenten opvoeden met ernstig verstandelijke en meervoudige beperkingen (PIMD) tijdens de overgang naar volwassenheid. Deze studie onderzoekt de ervaringen en ondersteuningsbehoeften van deze gezinnen tijdens deze transitie. Er werd gebruik gemaakt van …

In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding …

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems …

Personen met ernstige verstandelijke en meervoudige beperkingen (PIMD) hebben veel ondersteuningsbehoeften, die door hun familie moeten worden ingevuld. Door veerkrachtig te zijn, kunnen gezinnen zich positief aanpassen aan deze uitdaging en een positieve FQOL behouden. Daarom wilden we begrijpen hoe …

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 …

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 …

Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal …

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 …