Abstract
Background/aims: Family caregiving is burdensome with many carers experiencing burnout, isolation and financial challenges. During the covid-19 pandemic, the number of carers supporting people at the endof- life increased. This research investigated the impact of the covid-19 pandemic on family carers and hospice health and social care staff at a time where formal care services were reduced and pressures for care at home increased.
Methods: A qualitative study was conducted under a critical realist approach. Interviews across a virtual platform were conducted with 37 participants (15 carers and 22 staff) recruited via hospice services in England and Scotland, UK. Interviews explored the experiences of care, services, impact of the pandemic and formal and informal support. Data was managed using framework methods and analysed thematically.
Results: Great sacrifices were made by hospice staff and family carers to offer high quality end-of-life care but many experienced challenges which negatively impacted on wellbeing and for carers; the ability to grieve. Three key themes are identified;
(1) Missed Opportunities for memory making related to not being there and not having others around;
(2) The Lone Carer during a period of high care intensity, reduced service-led home support was challenging, but also which enabled quality time for some;
(3) Procedure Vs Person-centred Care resulting from changing rules and restrictions and prioritisation of regulation over essential palliative care.
Conclusions: This study is the first to report the experiences of the hospice workforce and carers during the pandemic but has global implications for all involved in end-of-life care. Despite continual efforts to provide dignified care; holistic components of ‘palliative care’ were jeopardised. Important lessons can be learned from how health and social systems and society reacted to the pandemic; the longer-term impact of such is likely to be seen in unresolved grief and suffering for many people in our communities.
Methods: A qualitative study was conducted under a critical realist approach. Interviews across a virtual platform were conducted with 37 participants (15 carers and 22 staff) recruited via hospice services in England and Scotland, UK. Interviews explored the experiences of care, services, impact of the pandemic and formal and informal support. Data was managed using framework methods and analysed thematically.
Results: Great sacrifices were made by hospice staff and family carers to offer high quality end-of-life care but many experienced challenges which negatively impacted on wellbeing and for carers; the ability to grieve. Three key themes are identified;
(1) Missed Opportunities for memory making related to not being there and not having others around;
(2) The Lone Carer during a period of high care intensity, reduced service-led home support was challenging, but also which enabled quality time for some;
(3) Procedure Vs Person-centred Care resulting from changing rules and restrictions and prioritisation of regulation over essential palliative care.
Conclusions: This study is the first to report the experiences of the hospice workforce and carers during the pandemic but has global implications for all involved in end-of-life care. Despite continual efforts to provide dignified care; holistic components of ‘palliative care’ were jeopardised. Important lessons can be learned from how health and social systems and society reacted to the pandemic; the longer-term impact of such is likely to be seen in unresolved grief and suffering for many people in our communities.
| Original language | English |
|---|---|
| Pages (from-to) | 112-112 |
| Number of pages | 1 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | 1S |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |
| Event | 18th EAPC World Congress - Rotterdam, Netherlands Duration: 15 Jun 2023 → 17 Jun 2023 |