Carers' perspectives on end of life care for people with learning disabilities


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

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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