Understanding and improving community-based palliative care outside of normal working hours
Date opened: 01/01/2019
Why is this research important?
Most people prefer care at home. However, provision of community specialist palliative care (SPC) outside of normal working hours (‘out-of-hours’) in the UK is highly variable. Service components differ markedly, and discontinuity of care is common. Without adequate ‘out-of-hours’ support, patients are at risk of being ‘crisis-managed’ with emergency department (ED) attendances and unplanned admissions
What does this study involve?
This is a sequential, three phase, mixed-methods study. The first phase aims to systematically review evidence on the effectiveness and cost-effectiveness of models of out-of-hours community palliative care.
The second phase aims to characterise existing UK community-based models and generate a typology of models in a multicentre, sequential mixed methods study with focus groups, Delphi study and structured interviews.
The third phase aims to explore and contrast patients’ and families’ experiences of different models of ‘out-of-hours’ community-based palliative care, and elucidate drivers of service utilisation (ED attendances and unplanned admissions) and preferred place of care. The phase is a multicentre qualitative study with patients/family purposively sampled from three SPC services with differing models of ‘out of hours’ care.
Who is involved?
Marie Curie (funder), PPI group; King's College Hospital, St Giles hospice, Litchfield; Forest Holme Community Specialist Palliative Care Team, Poole Hospital NHS Foundation Trust; St Luke’s Sheffield; Princess Alice Hospice community team, Esher, Surrey; Pilgrims hospices community teams, East Kent; St Francis hospice Community and crisis support, Romford, Essex, Prince and Princess of Wales Hospice in Glasgow. We also plan to collabroate with other specialist palliative care community services as the project progresses.
Short Report: The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals’ and patient and family carers’ perspectives. Joanna Goodrich, Lydia Tutt, Alice M Firth, Catherine J Evans, Fliss EM Murtagh, and Richard Harding.
Joanna Goodrich: firstname.lastname@example.org
Alice Firth: email@example.com
Marie Curie Foundation
Here are some links to the project's outreach activites:
European Association of Palliative Care (EAPC):
- Reflections from a Public Patient Involvement member on being part of an out-of-hours community palliative care research study (February 2022) (link)
Marie Curie Research Conference 2022:
- Dr Joanna Goodrich and Peter Buckle’s video presentation on “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')” (link)
- Alice Firth’s video presentation on “Developing a typology for out-of-hours community service provision for patients nearing the end of life and their families” (link)