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 …

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 …

Background In geriatric oncology, family members frequently accompany older patients with cancer to medical consultations and participate in shared decision-making (SDM) processes. While family involvement can enhance decision-making, it also presents challenges for healthcare professionals. Additionally, …

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 …

Door artistieke verkenningen van kwelders in Engeland, Schotland en Nederland ontwikkelde Linde Ex de concepten “Land-shapes” en “Sooth-scapes” als manieren om deze vaak als onbeduidend beschouwde landschappen te observeren en te benaderen. “Land-shapes” en “Sooth-scapes” hebben een serie artistieke …

This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) …

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 …

In the final stage of people’s life, family caregivers spend an average of 26 hours a week providing informal care at home. While this care can be rewarding, it can also lead to overburdening and increase the need for support. Despite the efforts of healthcare providers, many family caregivers feel that …

The concept of Smart Healthy Age-Friendly Environments (SHAFE) emphasises the comprehensive person-centred experience as essential to promoting living environments. SHAFE takes an interdisciplinary approach, conceptualising complete and multidisciplinary solutions for an inclusive society. From this …

INTRODUCTION: The scored Patient-Generated Subjective Global Assessment (PG-SGA©) is a validated tool for the screening, assessment and monitoring of malnutrition, and triaging of interventions. It contains a patient-generated component and a healthcare professional (HCP)-generated component. AIM: To …