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“Palliative care is so much more than that”

A qualitative study exploring experiences of hospice staff and bereaved carers during the Covid-19 pandemic

Datos Bibliográficos

ID22073167
AutoresCara Bailey (0000-0003-0865-9240, University of Birmingham, autor de correspondencia), Ping Guo (0009-0006-9654-4011, University of Birmingham), John Macartney (0000-0002-0879-4277, University of Warwick), Anne Finucane (0000-0002-3056-059X, Marie Curie Hospice), Richard Meade (0000-0003-1262-0429), Susan Swan (0000-0003-1627-5431, Glasgow Life), Ellie Wagstaff (Marie Curie Hospice)
Año2023
Volumen11
Páginas1139313-1139313
Fecha de publicación2023-10-25
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaFrontiers in Public Health (JOURNAL)
Identificadores de la revistaISSN: 2296-2565 • E-ISSN: 2296-2565
EditorialFrontiers Media SA (PUBLISHER • CH)
DOI10.3389/fpubh.2023.1139313
PMID38026434
OpenAlexW4388202823
IdiomaEN
Citas recibidas4
Referencias citadas22

Background: The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life. Methods: A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change. Findings: A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care. Conclusion: The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens

End-of-life care · Palliative care · Pandemic · Qualitative research · Sociology · Geriatric Care and Nursing Homes · Grief, Bereavement, and Mental Health · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology

  • The Unseen Challenges

    Open Access•Gabriela Rezende, Gabriel Morais Xavier dos Santos et al.•INQUIRY The Journal of Health…•2025

  • Palliative care training programmes for community volunteers working with children and their families

    Open Access•Nattaporn Ontrakrai, Cara Bailey et al.•Frontiers in Public Health•2025

  • Pandemic narratives in stories about hospice palliative care

    Open Access•John Macartney, Audrey Eccles et al.•SSM - Qualitative Research in…•2024

  • Co-producing a ‘creative toolkit’ to support the mental health and wellbeing of palliative care professionals

    Open Access•Marie Clancy, Caitlin R Kight et al.•Frontiers in Sociology•2025

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    Open Access•Nicola Gale, Nicola K Gale et al.•BMC Medical Research Methodology•2013

  • The Covid-19 pandemic has changed dying and grief

    Timothy R Jordan, Amy J Wotring et al.•Death Studies•2021

  • Critical realism and the ontology of persons

    Roy Bhaskar•Journal of Critical Realism•2020

Obras citantes distintas4
Citas por año2
Intervalo de citas2024 - 2025 (2)
Velocidad de citaciónrecent
Altamente citadoNo
Tipos de citaNeutras: 4
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