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 …

Pregnancy and early parenthood mark a transformative period where women become caregivers and assume a new role with new responsibilities. While often portrayed positively, the transition to motherhood can be overwhelming. This is especially true for women living in adverse circumstances, presenting …

Objective To obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant. Methods We conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews …

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 …

Background:   Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well …

Morele handelingsverlegenheid: Morele handelingsverlegenheid in situaties van (vermoedens van) kindermishandelingMorele handelingsverlegenheid bleek twee hoofdkenmerken te hebben. Het eerste kenmerk is een moreel appél om te handelen. Dit appél kan voortkomen uit uiteenlopende bronnen van informatie, …

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 …

If parents perceive the neighborhood as child friendly, they will allow their children more independent travel and play. Parental perception of child friendliness is therefore an important prerequisite for designing neighborhoods that promote children's health and wellbeing. However, there is currently …

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 …