Palliative Care Information Sessions for Informal Carers

What was the issue you were addressing or working on?

To provide the opportunity for informal carers to learn more about palliative care, what it may mean for them as carers and the support they could access and receive when caring for someone who has been identified as being palliative.


What you did?

Research was carried out to establish whether there was a generic programme already in use to guide delivering this information with regard to the content and level of information. No specific guidance was available so the palliative nurses developed a programme of palliative care information sessions which they felt was most relevant for carers.  One two hour workshop per week over a four week period was delivered and the topics included were:

“What is palliative Care; Planning the Future; Advice and management of symptoms; What to expect when someone is dying and End of Life Care; DNACPR; Preparing for bereavement; Supporting you and keeping your self healthy; What is available to help you”.

The Carers Centre identified the carers who expressed an interest and offered them the opportunity to attend the workshops, providing a carer for those who needed one to enable them to attend.  They were also successful in obtaining some funding for this initiative from Good Life Good Death Good Grief.

An initial pilot series of four workshops was delivered to gather evidence as to whether the information provided had the relevant content and was at the most effective level for informal carers to understand.  Pre and post workshop questionnaires were completed by carers to enable evaluation of each carer’s prior knowledge of palliative care and ascertain if that knowledge had increased following the sessions.  Further evidence of relevance and content was gathered at the final session by requesting quotes from carers regarding their experience of the workshops for them.  Some of the content of the workshops was changed following evaluation of the pilot.


What were the outcomes - benefits or otherwise?

The feedback from this initiative has largely been very positive.  It is important to be aware that every carer that attended was at a different stage of their caring journey.  It was also the case that each carer was caring for someone with varying conditions therefore the content of the sessions had to be suitable to meet each of their information needs.  The evidence shows that carers clearly require this information therefore there is an agreement to continue to provide these workshops on alternate months and in alternate locations to widen the opportunity for carers to attend.


Contacts - to find out more

Maggie Riordan Maggie.riordan@nhs.net  01389 828308