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 …

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 …

Introduction: Over the past decade, frequent use of large quantities of nitrous oxide (N2O) has become more common in the Netherlands. Although N2O poses several negative health consequences for a subgroup of problematic N2O users, there is a lack of knowledge on what characterizes these intensive users. …

Despite the fact that research shows that collaboration between families and schools contribute to academic achievement, social‐emotional development and sense of well‐being of students, many schools struggle to establish family‐school partnerships. The current study explores keys to success and challenges …

Background: Collaborative practice between therapists and parents is a key element of family-centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate …

Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand …

Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms …

Background: Goal setting is an essential step in the clinical reasoning process of speech and language therapists (SLTs) who provide care for children, adolescents and adults with communication disorders. In the light of person-centred care, shared or collaborative goal setting between the SLT and client …

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 …