54 Patient and public involvement in a delphi study to determine the most important components of community palliative care outside normal working hours (‘out-of-hours’)

Introduction

Out-of-hours community palliative care for people with advanced illness is the top research priority identified by patients and families. Patient and Public Involvement (PPI) is vital to ensure that research on delivering out-of-hours care meets the needs of patients and families.

Aims

To work with PPI project members in the content, design and interpretation of findings of a Delphi study, to strengthen its impact to drive improvement. The Delphi study aimed to determine the most important components of out-of-hours community palliative care services.

Method

A Delphi study involves repeated rounds of surveys until consensus is reached. Our Delphi questions were initially identified from a systematic literature review and focus groups with healthcare professionals. They were then discussed, alongside elements of quality in health service provision for palliative care, with PPI members. Questions were then reviewed, refined and piloted with PPI members. The surveys were distributed to a mix of healthcare practitioners from specialist palliative care and primary and community care, and independent PPI members. Results that met consensus in round 1 were included in round 2. Areas of uncertain consensus were reviewed with the PPI group and refined for round 2.

Results

PPI members and researchers together interpreted the results of both rounds. For example, PPI members felt that the finding that visits from district nurses reached highest consensus reflected the importance of the family’s need to ‘feel known’ by a regular visitor, and the need to better resource and support community nursing out-of-hours.

Conclusion

Collecting and analysing views based on ‘real life’ knowledge has produced clear consensus, strengthened by the involvement of diverse and informed PPI project members.

Impact

The involvement of PPI members has ensured that the findings of the Delphi study, if adopted by commissioners of out-of-hours services, will make positive improvements to patients and families.