Whilst there is a developing literature aimed at a better understanding of end of life care for people with learning disabilities, there is little published that relates directly to the perspectives of paid carers.
The researchers in this study used a series of focus groups to analyse responses from 64 people who worked in learning disability services. They took part in 12 focus groups.
The results suggested that participants felt the experience of being involved in palliative care enriched their practice, and they wanted to be involved.
Many felt they were insufficiently prepared for the task however, and this inevitably led to stress. Issues that heightened staff stress were identified as situations where decision making for people at the end-of-life was particularly challenging or where staff felt they were not involved or ‘pushed out’ by relatives. A key issue that heightened stress was described as lack of support from the service or lack of time to provide appropriate care. One interesting finding was that many staff felt the service did not offer time to staff to mourn the loss of service users.
Whilst this is a small study with a small number of staff, the issues it raises identity a number of areas where services could consider the strategies for development to reduce staff stress and therefore improve the quality of end of life care provided to people with learning disabilities.
End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives, Ryan K et al, in Journal of Applied Research in Intellectual Disabilities, 24: 199–207