What are family carers’ support needs at patient discharge home from hospital at end-of-life?

Two ladies at an Asian activity group.

We’ve been working with Marie Curie Cancer Care to support carers during patient discharge at end-of-life.

Discharge home from hospital acute care at end-of-life relies heavily on family carers’ ability and willingness to help care for the patient. The purpose of our work with Marie Curie is to investigate carers’ support needs upon discharge to better enable them to support patients at home and facilitate successful acute care discharge at the end-of-life.

We’ve previously worked extensively with carers to identify the support that is important to carers to (a) help them support the patient at home and (b) preserve their own wellbeing whilst doing this. These support needs have been incorporated into a 14 item Carer Support Needs Assessment Tool (CSNAT).

The aims of the Marie Curie discharge work were:

1) To investigate the content, timing and format of support required by carers in preparation for and following acute care discharge
2) To use findings to adapt the existing evidence-based CSNAT to the acute care setting and develop a procedure to facilitate timely and appropriate patient discharge.

The study took place across three NHS trusts in Greater Manchester which together serve a diverse demographic population. Central Manchester University Hospitals NHS Foundation Trust was the primary NHS site and recruited both carers and practitioners. University Hospital of South Manchester NHS Foundation Trust and Pennine Acute Hospitals NHS Trust recruited only practitioners.

Individual interviews with carers took place between February 2015 and October 2015. These involved 22 carers who had recently experienced a discharge (immediate perspective) or carers bereaved 6-18 months ago following a discharge (retrospective perspective). In addition, 8 focus groups with practitioners took place between December 2014 and October 2015. These included 40 healthcare professionals who are involved in the discharge process. Practitioners were from a mix of specialist areas, including specialist palliative care teams, complex discharge teams and community and district nursing teams.

Participants of interviews and focus groups were then invited to attend workshops, where the views of carers and practitioners could be brought together in order to consider the implementation of the CSNAT into practice.

Two workshops took place in November 2015 with five carers and 14 healthcare practitioners in attendance. Topics discussed included the support areas of the CSNAT and if they are appropriate, and how the CSNAT could be incorporated into the discharge process (which included the suitability of the CSNAT approach, who would use it and when, and how it could support the transition to home).

Results are to be analysed and disseminated by the end of January 2016. For more information about this work, please visit the Marie Curie project page.