PALCAP Palliative care for people with intellectual disabilities

More and more old persons are being cared for in residential facilities for persons with intellectual disability. Because incurable and chronic illnesses occur more often in old age, there is an increase in the care and support required. But to date there is no data available on palliative care of terminally ill or old and dying persons with intellectual disability living in residential facilities.

This study aims to investigate the situation of adults with intellectual disability at the end of their lives who live in residential facilities for persons with disability. In Switzerland, care of persons at the end of life varies in quality. It is not known how well the residential facilities for persons with disability are prepared for the end of life of their residents. This study will survey residential facilities for persons with intellectual disability using a questionnaire on current possibilities for end-of-life care, on guidelines, and on adult residents' participation in decision-making. In addition, problem-centred, guided interviews will be con-ducted with care personnel, nurses, physicians and outpatient palliative care teams.

The study will deliver important basic information for research, practice and policy. The data will make it possible to define factors that are useful for a self-determined course of the end of life of adults with intellectual disability. In addition, the study will aid planning of the required services in the area of palliative care. It will provide an overview of currently available services and the needs of adults with intellectual disability at the end of life.

PALCAP Palliative care for people with intellectual disabilities