End of life Care for Persons with Intellectual Disabilities
Aim:
To understand if over time the availability and quality of end of life care offered to people with intellectual disabilities in their last days has improved.
Background:
Traditionally older people with intellectual disabilities have not been a target population of hospice and palliative care providers. Public policy since 2001 has encouraged their inclusion but beliefs that they will not benefit and would be difficult to include continue to be a barrier to inclusion. Data from carers of participants with ID who had died was collected in a separate protocol in Wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) and provides for the first time a baseline picture of participation in hospice and palliative care by people with ID in Ireland.
Method:
In wave 3 of IDS-TILDA the carers of all those who have died since wave 2 will be contacted and interviewed on the process and experience of death by those individuals including their accessing of and satisfaction with hospice/palliative care services both in ID services and in general community based services. A standardized protocol utilizing quantitative and qualitative questions will be utilized. Data will be compared with the findings of the wave 2 baseline.
As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team, and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.