In this article we explore our own experiences on working relationships in inclusive research through a collective biography. We aim to contribute to the understanding of how collaboration in inclusive research teams works, and how to realise transformation in ways of working together. In the collective …

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 …

Background: There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary …

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights …

In light of current worldwide developments, the conference theme “Value Diversity” explicitly refers to the changes we need to see. This contribution is about Life expectancy of people with a severe or profound intellectual disability. Their life expectancy increases, which contributes to the risk of …

Purpose Although researchers have explored parental perspectives on childhood speech and language disorders, this work has mostly been conducted in English-speaking countries. Little is known about parental experiences across countries. Participation in the COST Action IS1406 ‘Enhancing children’s oral …

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 …

Many initiatives including theatre projects with disabled and non-disabled actors aim at increasing the inclusion of people with intellectual disabilities. We took theatre as the context to learn about these inclusive practices. We searched the scientific literature for case studies to investigate: 1) …

Shared decision-making (SDM) is theprocess in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with …