Lessons learned from the adaptation of the Reflective Functioning Questionnaire (RFQ) for Dutch people with mild to borderline intellectual disabilities.

Background: People with mild to borderline intellectual disabilities (MBIDs) face challenges in social functioning, possibly as a result of limited mentalising abilities such as reflecting on the behaviour of themselves and others. Reflective functioning in people with MBIDs has not yet been investigated due to a lack of instruments. The Reflective Functioning Questionnaire (RFQ) is a seemingly easy adaptable, short self-report questionnaire.

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.

Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals.

Methods: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid.

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

Background: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability.

Physician-Reported Symptoms and Interventions in People with Intellectual Disabilities Approaching End of Life.

Background: Insights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs).

Objectives: We aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death.

Physicians' identification of the need for palliative care in people with intellectual disabilities.

Background: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care.

Aims: We aimed to explore how the need for palliative care is recognized in people with ID.

Methods And Procedures: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands.

Behavioral problems in children with motor and intellectual disabilities: prevalence and associations with maladaptive personality and marital relationship.

Prevalence rates of behavioral problems in children with motor disabilities are commonly based on questionnaires developed for a general population (e.g., Child Behavior CheckList).