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 …

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 …

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 …

• Introduction research concern • Presentation: Images and metaphors expressed by Dutch parents (caring for children with PIMD) • Dialogue and participation

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. Findings: The …

The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed …

Dit betreft een publicatie voor de doelgroep met wie ik onderzoek doe, ouders van kinderen met ZE(V)MB. Informatie van website: ZeldSamen biedt informatie, contact en herkenning voor ouders na de diagnose van een zeldzaam genetisch syndroom. We willen ouders, familieleden en ook de kinderen en volwassenen …