Palliative Care for People with Intellectual Disabilities - PALCAP
08.2012 – 02.2015
Residential homes for people with disabilities are caring for growing numbers of elderly and seriously ill residents. As the frequency of incurable and chronic disease rises with age, the care load is increasing. There are still no data on the provision of palliative care for the incurable sick or elderly, dying residents with intellectual disabilities in residential homes for the disabled.
The aim of this research project is to investigate the situation of adults with intellectual disabilities in residential care facilities as they approach the end of their lives. The quality of care for people in the last stage of life varies in Switzerland. It is unclear how well residential homes for the disabled are prepared to deal with residents at the end of life.
Residential homes for people with disabilities are surveyed using a questionnaire about the options for people to govern the conditions in which their life ends, any existing guidelines, and the participation of adults with an intellectual disability the decision-making process. Problem-centred interviews with care staff, nursing staff, doctors and teams providing palliative care for outpatients are carried out on the basis of guidelines.
The study will provide major foundations for research, practice and policy-making. The data will permit the definition of factors conducive to autonomous end-of-life choices for adults with an intellectual disability living in residential homes for the disabled. The study will also help to plan the services needed in palliative care. It provides an overview of palliative care provision and the needs of adults with an intellectual disability as they approach the end of their lives.
Interkantonale Hochschule für Heilpädagogik, Zürich
Dr. Monika T. Wicki
Curaviva Schweiz, Dialog Ethik, Insos Schweiz, Institut Neumünster und das Zentrum für Gerontologie der Universität Zürich
Schweizerischer Nationalfonds, NFP 67; Interkantonale Hochschule für Heilpädagogik
Palliative Care, Intellectual Disabilities, Residential Homes, Self-Determination, End-of-Life Decisions