Understanding the impact of COVID-19 on end of life care at home

  • Research type

    Research Study

  • Full title

    Understanding the impact and reality of COVID-19 on community-based end of life care in Fife: a mixed- methods study to inform improvements to the care of future patients, families and carers in Fife.

  • IRAS ID

    294348

  • Contact name

    Joanna Bowden

  • Contact email

    joanna.bowden@nhs.scot

  • Sponsor organisation

    NHS Fife

  • Duration of Study in the UK

    1 years, 6 months, days

  • Research summary

    During the COVID-19 pandemic, in Fife and nationally, there has been a significant shift towards community-based end of life care. Whilst many would argue that this should be positive, potentially reflecting a less medicalised end of care experience, we do not know what the experience of individuals receiving end of life care at home, and those who support them, has been. Health and social care services have undertaken rapid redesign, both to try and care for those with known or suspected coronavirus, but also to continue to meet the needs of people living with existing illness including those who are dying, unrelated to the pandemic. From the service provider perspective, it has challenging to try and ensure high quality end of life care and bereavement support during the COVID-19 pandemic, and we do not know what the impact of our changed ways of working has been for patients with advanced illness and those close to them. This mixed methods study, funded by NHS Fife Health Board Endowment Fund, will examine shifting patterns in preferred and actual place of care and death as a consequence of the pandemic and the lived experience of patients with advanced illness and their relatives and carers and in pre and post bereavement phases. Findings will inform immediate clinical service improvements and education for the health and social care workforce providing end of life care in the community via an established Palliative Care Collaborative, which has membership and reach from primary and secondary care, social care and the third sector.

  • REC name

    North of Scotland Research Ethics Committee 1

  • REC reference

    21/NS/0034

  • Date of REC Opinion

    26 Mar 2021

  • REC opinion

    Favourable Opinion