Abstract

Supporting family carers to enable patient discharge from acute care at the end of life: a qualitative study with carers and professionals to adapt evidence-based carer assessment to acute care settings.

Background

Discharge from hospital at end of life relies heavily on family carers’ ability and willingness to help care for the patient. The purpose of the project is to investigate how support for carers at discharge may facilitate successful discharge for the patient.

Aims

To improve carer support to facilitate successful patient discharge by

• investigating the content, timing and format of support required by carers at patient discharge
• using findings to adapt an evidence-based carer support needs assessment tool to the acute care setting and integrate it into a pathway to facilitate timely and appropriate patient discharge

Methods

Qualitative study investigating carers’ and professionals’ perspectives on carer support needs at discharge and the utility and role of a Carer Support Needs Assessment Tool (CSNAT) in supporting carers, conducted within the catchment area of three NHS Trusts serving a diverse demographic population.

Carer sample:

A purposive sample of 30-36 bereaved and current carers will be recruited to provide both retrospective reflections and immediate perspectives on discharge. Bereaved carers will be identified through retrospective linkage of data on planned discharge and patient deaths. Carers will be contacted by letter and interviewed 6-9 months post bereavement. Current carers will be identified through palliative and complex discharge teams, approached and interviewed on the wards and followed up in the community.

Professional sample:

A purposive sample of 48 hospital and community staff will be recruited via the three NHS Trusts from identified, key informants involved in discharge. To improve access and participation we will offer several focus groups, local to participants (up to 10), and telephone interviews for those unable to attend the groups.

Interview and focus group protocols:

Protocols will move from (a) broad exploration of carer-related concerns surrounding discharge to (b) investigation of CSNAT’s ability to encompass these concerns, and when and how it may be used in the process of discharge to improve carer support, preparation and involvement in decision making.

How the results will be used:

Four workshops will bring together hospital and community staff and carers to discuss preliminary findings and assist in the adaptation of CSNAT for acute care and the development of a protocol that can be integrated into a pathway procedure for acute care discharge. In addition to general dissemination, the amended CSNAT and protocol will be further piloted and evaluated in acute care in planned, future projects.