Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study.

Background: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices.

Methods: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54-89 years, with mild to moderate intellectual disabilities (IQ <70) and low social-emotional development levels. We combined participant observations and qualitative interviews.

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.