As the life expectancy of people with intellectual and developmental disability (PWID) has increased significantly to practically match the life expectancy of the general population, PWIDs are exposed to the same health issues as an ageing person, with more risks to develop diseases and new disabilities. These facts challenge the Swiss health policy and its health care providers.
The study aims to develop with parents of PSH-DI - who become experts on this question - an interface - tool. It will secure an efficient transmission of information about the follow-up of the health of their child. Its later operationalisation should allow in reducing the need for healthcare professionals to provide an adequate care for PWID. Thus, the shortage of trained healthcare professionals should be reduced. The cooperation of the parents in the development of this interface – tool represents an original solution for respite. In fact parents are generally most preoccupied with the fact that no one knows the health issues of their son or daughter with ID better than they do. They wonder and worry about their child's care once they will not be able to provide it.
This study includes a quantitative part (self-administered questionnaires) to evaluate the experiences of these parents-caregivers in the endless parenthood and a qualitative part (focus group interviews) to collect data on health parameters that should be taken into account in the elaboration of such an interface.