ENHANCE

  • Research type

    Research Study

  • Full title

    Enhancing communication with bereaved relatives about emergency and critical care trials

  • IRAS ID

    324927

  • Contact name

    Kerry Woolfall

  • Contact email

    k.woolfall@liverpool.ac.uk

  • Sponsor organisation

    University of Liverpool

  • Duration of Study in the UK

    1 years, 3 months, 31 days

  • Research summary

    Involving critically ill patients in research is important to help find treatments that save lives. Critically ill patients may be entered into a study without prior consent when there is no time to discuss research with relatives. A patient enrolled in a study may sadly die, and sometimes bereaved families do not know that their relative was part of a study. If information about patients who die is not included in research, the results may be unreliable, as it would be unclear if study participation leads to higher rates of death.

    Doctors can struggle to know when, or whether it is appropriate to disclose a deceased patient’s research involvement to grieving family members.

    The purpose of the study:
    We aim to find out if bereaved families wish to be informed about their relatives’ participation in research and if so, when and how they would prefer to be told. We also want to find out if it is possible and appropriate for doctors to add information about research participation into their discussions with bereaved families as part of the medical examiner system.

    What we will do:
    Medical Examiners (MEs) will identify patients who were involved in a trial and ask their family members if they were aware of the patient’s study involvement and if they would like more information about this. The ENHANCE researcher will conduct interviews with bereaved families, with MEs and with research staff to find out the best way to communicate with families after the death of a patient involved in a trial. Findings will be used to develop recommendations for future emergency and critical care studies. Importantly, this work will help improve experiences for bereaved families as their thoughts and experiences will have been considered. Study findings will be published, including a summary for patients and health professionals.

  • REC name

    Yorkshire & The Humber - Leeds West Research Ethics Committee

  • REC reference

    23/YH/0052

  • Date of REC Opinion

    17 Mar 2023

  • REC opinion

    Favourable Opinion