Understanding the concept of death helps people with learning disabilities during the bereavement process


Since the formation in 1998 of the palliative care for people with learning disabilities network, there has been some work bringing together service providers and carers to enable better co-ordination of care for the benefit of people with learning disabilities who have palliative care needs.

However, there is still a lack of research into the effect of the deaths of people with learning disabilities who use services on their fellow service users.

This qualitative study reported the findings from 16 focus groups which were held with staff. In the focus groups, participants described their perception of the experiences of people with learning disabilities when other service users die. The focus groups were held as part of a larger project describing the provision of palliative care to people with learning disabilities in Ireland

Analysis of the focus groups showed the emotional impact of the death of a friend on people with learning disabilities. The study suggests benefits to service users of situations where staff facilitated the involvement of users, although barriers to such involvement are also highlighted.

The authors conclude that their findings “affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.”

Exploring the experiences of people with intellectual disabilities when service users die, Ryan, K.,  et al., in British Journal of Learning Disabilities, 39: 259–265.

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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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