ABSTRACT
Background: People with intellectual disabilities (ID) have worse health outcomes and face inequalities at the end of life. It is not clear how Covid-19 has affected end of life care. Aim: To gain insight into the perceived COVID19 related changes in provision, quality and challenges of palliative and end-of-life care to people with ID in countries across the world. Method: An international anonymous online survey, aimed at health/ social care professionals, was developed by 15 researchers from 10 countries (part of the EAPC Reference Group on Intellectual Disabilities). It was based on the 2015 EAPC White Paper on ID describing 13 good practice norms. Data were analysed using descriptive statistics, with content analysis of free text. Results: 471 respondents from 19 countries completed the survey between Oct 2020-Mar 2021 (88% health/social care professionals, 12% academic/educators). North West Europe was over-represented, but responses were received from other countries including USA, Australia and Asia. Areas of end-of-life care most frequently reported as less in line with the 13 investigated norms were 'adequate bereavement support for people with ID' (40%) and 'adequate training/support for healthcare staff' (40%). Areas showing the greatest concordance with these norms were 'access to hospital care when needed' (62%) and 'families involved in end-of-life decisions' (50%). Areas that most respondents reported as worse during the pandemic were 'people with ID attending funerals' (57%), 'opportunities for families to be involved in care' (49%) and 'adequate support from health/social care professionals for the end of life needs of people with ID' (41%). Conclusion: There are significant challenges in providing end of life care for people with ID, these have been exacerbated by Covid-19. This survey provides important indicators for developing policy, practice and research priorities, and is a starting point for further research.