Dataset Information

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

ABSTRACT:

Purpose

To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic.

Methods

UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis.

Results

Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time.

Conclusion

It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.

SUBMITTER: Hanna K

PROVIDER: S-EPMC9155982 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

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Publications

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

Hanna Kerry K Cannon Jacqueline J Gabbay Mark M Marlow Paul P Mason Stephen S Rajagopal Manoj M Shenton Justine J Tetlow Hilary H Giebel Clarissa C

BMC palliative care 20220601 1

<h4>Purpose</h4>To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic.<h4>Methods</h4>UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis.<h4>Results</h4>Forty-two participants (26 family carers an ...[more]

PMID: 35641946

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Project description:IntroductionLittle consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.Materials and methodsA mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity.ResultsThere were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued.ConclusionRelationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Project description:BackgroundEarly in the COVID-19 pandemic, care homes (long-term care facilities) globally were severely impacted in many ways, including end-of-life care and death of residents. They experienced significantly elevated mortality rates amongst residents, compounded by restrictions on support from external healthcare and specialist palliative care providers. Family access to dying residents was often severely restricted. This paper explores experiences of deaths, dying and end-of-life care in care homes during the first year of the pandemic (Spring 2020-2021).MethodsAs part of a wider study of experiences in care homes in Northern England during the early pandemic, we conducted semi-structured interviews with care home staff (16), residents (3), family members (5) and health service staff (10). Interviews were analysed using reflexive thematic analysis, this secondary analysis focusing on experiences of death and dying over the period.ResultsThematic analysis generated three key themes: (1) Preparing for large scale deaths: Care home staff reported a sense of foreboding at requirements to prepare for large scale resident deaths, sometimes feeling left with minimal external support to manage this, and uneasy about the rapid roll-out of emergency care planning to residents; (2) Balancing support and policing visiting during the terminal phase: The requirement to restrict access for family members when their relatives were dying was experienced as distressing for both family members and care home staff; and, (3) Distress surrounding deaths for staff and families: Care home staff were distressed by the frequency and speed of deaths that they witnessed when their care home had a COVID-19 outbreak. Family separation near time of death was a source of distress for everyone involved, with suggestions that this led to regrets in bereavement for family members, and moral distress in staff.ConclusionsThe experience of death and dying in care homes in the early waves of the COVID-19 pandemic was extremely challenging for care home staff and family members. Our analysis suggests that the ramifications of stringent visitation policies and the consequent distress may shape experiences in bereavement. Monitoring for longer term consequences, such as prolonged grief and moral injury, should be a priority.

Project description:BackgroundDeath resulting from COVID-19 in a hospital during the pandemic has meant death in isolation. Although many health-care providers (HCPs) have struggled with end-of-life (EOL) care for these patients, the various strategies across hospitals are not well known.Research questionWhat EOL care did HCPs give patients dying of COVID-19 and their families in hospitals during the COVID-19 pandemic? What were the key themes in care?Study design and methodsThis qualitative study used individual, semistructured, internet, and face-to-face interviews. We recruited HCPs who provided EOL care to patients with COVID-19 dying in hospitals and their families. Purposive sampling was used through the academic networks at the School of Public Health, Kyoto University. Anonymized verbatim transcripts were analyzed thematically.ResultsFifteen doctors and 18 nurses from 23 hospitals in 13 regions across Japan participated; 16 participants (48%) were women, with an age range of 20 to 59 years (most were 30-39 years of age ). Participants described 51 strategies, including providing physical and psychological-spiritual care, making connections, providing death care, and arranging care environments and bereavement care for patients and their families. Four themes emerged as prominent efforts in COVID-19 EOL care: maintaining relationships with isolated patients, connecting patients and families, sharing decision-making in isolation, and creating humanistic episodes.InterpretationProper application and awareness of the four themes may help HCPs to implement better EOL care. To compensate for limited memories resulting from isolation and rapid progression of the disease, communicating and creating humanistic episodes are emphasized. ICU diaries and the HCPs' arrangements based on cultural funerary procedures could be provided as grief care for the family and to build trust. EOL education and building partnerships among palliative care staff and nonmedical personnel on a regular basis may enhance the capacity to deliver the necessary support for EOL care.

Project description:BackgroundPalliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC during the pandemic. Given that social media have the potential to collect real-time public opinions, an analysis of this evidence is vital to guide future policy-making.ObjectiveThis study aimed to use social media data to investigate real-time public opinions regarding PEoLC during the COVID-19 crisis and explore the impact of vaccination programs on public opinions about PEoLC.MethodsThis Twitter-based study explored tweets across 3 English-speaking countries: the United States, the United Kingdom, and Canada. From October 2020 to March 2021, a total of 7951 PEoLC-related tweets with geographic tags were retrieved and identified from a large-scale COVID-19 Twitter data set through the Twitter application programming interface. Topic modeling realized through a pointwise mutual information-based co-occurrence network and Louvain modularity was used to examine latent topics across the 3 countries and across 2 time periods (pre- and postvaccination program periods).ResultsCommonalities and regional differences among PEoLC topics in the United States, the United Kingdom, and Canada were identified specifically: cancer care and care facilities were of common interest to the public across the 3 countries during the pandemic; the public expressed positive attitudes toward the COVID-19 vaccine and highlighted the protection it affords to PEoLC professionals; and although Twitter users shared their personal experiences about PEoLC in the web-based community during the pandemic, this was more prominent in the United States and Canada. The implementation of the vaccination programs raised the profile of the vaccine discussion; however, this did not influence public opinions about PEoLC.ConclusionsPublic opinions on Twitter reflected a need for enhanced PEoLC services during the COVID-19 pandemic. The insignificant impact of the vaccination program on public discussion on social media indicated that public concerns regarding PEoLC continued to persist even after the vaccination efforts. Insights gleaned from public opinions regarding PEoLC could provide some clues for policy makers on how to ensure high-quality PEoLC during public health emergencies. In this post-COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from web-based public discussion how to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media's potential in acting as an effective tool to reflect public opinions in the context of PEoLC.

Project description:BackgroundThe need for effective non-pharmaceutical infection prevention measures such as contact tracing in pandemics remains in care homes, but traditional approaches to contact tracing are not feasible in care homes. The CONTACT intervention introduces Bluetooth-enabled wearable devices (BLE wearables) as a potential solution for automated contact tracing. Using structured reports and reports triggered by positive COVID-19 cases in homes, we fed contact patterns and trends back to homes to support better-informed infection prevention decisions and reduce blanket application of restrictive measures. This paper reports on the evaluation of feasibility and acceptability of the intervention prior to a planned definitive cluster randomised trial of the CONTACT BLE wearable intervention.MethodsCONTACT was a non-randomised mixed-method feasibility study over 2 months in four English care homes. Recruitment was via care home research networks, with individual consent. Data collection methods included routine data from the devices, case report forms, qualitative interviews (with staff and residents), field observation of care, and an adapted version of the NoMaD survey instrument to explore implementation using Normalisation Process Theory. Quantitative data were analysed using descriptive statistical methods. Qualitative data were thematically analysed using a framework approach and Normalisation Process Theory. Intervention and study delivery were evaluated against predefined progression criteria.ResultsOf 156 eligible residents, 105 agreed to wear a device, with 102 (97%) starting the intervention. Of 225 eligible staff, 82% (n = 178) participated. Device loss and damage were significant: 11% of resident devices were lost or damaged, ~ 50% were replaced. Staff lost fewer devices, just 6%, but less than 10% were replaced. Fob wearables needed more battery changes than card-type devices (15% vs. 0%). Structured and reactive feedback was variably understood by homes but unlikely to be acted on. Researcher support for interpreting reports was valued. Homes found information useful when it confirmed rather than challenged preconceived contact patterns. Staff privacy concerns were a barrier to adoption. Study procedures added to existing work, making participation burdensome. Study participation benefits did not outweigh perceived burden and were amplified by the pandemic context. CONTACT did not meet its quantitative or qualitative progression criteria.ConclusionCONTACT found a large-scale definitive trial of BLE wearables for contact tracing and feedback-informed IPC in care homes unfeasible and unacceptable - at least in the context of shifting COVID-19 pandemic demands. Future research should co-design interventions and studies with care homes, focusing on successful intervention implementation as well as technical effectiveness.Trial registrationISRCTN registration: 11204126 registered 17/02/2021.

Dataset Information

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

Purpose

Methods

Results

Conclusion

Publications

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

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