Paid carers' understanding and experiences of meaningful involvement in bereavement for people with intellectual disability when a significant other is dying

Background: Wider communication about death and dying for those with intellectual disabilities has been highlighted as being of key importance.

Objective: To gain the perspective of paid carers based in residential homes about meaningfully supporting individuals with intellectual disabilities in the bereavement process.

Methods: Semi-structured interviews were conducted with paid carers working across two residential homes.

Results: Four themes were identified: (a) challenges in having conversations about death and dying; (b) meaningful involvement of residents in the bereavement process; (c) the relationship between paid carers and residents (including the impact of a resident's death on paid carers); and (d) the support needs of paid carers.

Conclusions: The recommendations from previous research of meaningfully involving people with intellectual disabilities in the bereavement process have not filtered fully into practice. Paid carers still highlight the need for specialist support and advice to help them discuss and increase involvement in death and dying.