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1.
Health Qual Life Outcomes ; 21(1): 29, 2023 Mar 24.
Artigo em Inglês | MEDLINE | ID: covidwho-2262990

RESUMO

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.


Assuntos
COVID-19 , Delírio , Humanos , Reprodutibilidade dos Testes , Qualidade de Vida , Cuidados Paliativos , Psicometria , Inquéritos e Questionários
3.
BMC Palliat Care ; 21(1): 176, 2022 Oct 10.
Artigo em Inglês | MEDLINE | ID: covidwho-2064782

RESUMO

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.


Assuntos
COVID-19 , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados Paliativos/métodos , Pandemias
4.
BMJ Support Palliat Care ; 12(4): 439-447, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: covidwho-2032545

RESUMO

OBJECTIVES: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. METHODS: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. RESULTS: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose. CONCLUSIONS: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.


Assuntos
COVID-19 , Cuidados Paliativos , Humanos , Acetaminofen , Tosse , Benzodiazepinas
5.
J Pain Symptom Manage ; 64(4): 377-390, 2022 10.
Artigo em Inglês | MEDLINE | ID: covidwho-1907348

RESUMO

CONTEXT: Evidence of symptom control outcomes in severe COVID is scant. OBJECTIVES: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. METHODS: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version. RESULTS: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival. CONCLUSION: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study.


Assuntos
COVID-19 , Delírio , Idoso , COVID-19/terapia , Estudos de Coortes , Dispneia , Humanos , Midazolam , Morfina , Dor , Cuidados Paliativos
6.
J R Soc Med ; 115(6): 220-230, 2022 06.
Artigo em Inglês | MEDLINE | ID: covidwho-1673700

RESUMO

OBJECTIVE: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. DESIGN: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. SETTING: Organisations providing specialist palliative services in any setting. PARTICIPANTS: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. MAIN OUTCOME MEASURES: Experiences of working in palliative care during the COVID-19 pandemic. RESULTS: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants' ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided 'moral comfort' for some. CONCLUSIONS: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.


Assuntos
COVID-19 , Pessoal de Saúde/psicologia , Humanos , Cuidados Paliativos , Pandemias , Pesquisa Qualitativa
7.
J Palliat Med ; 25(3): 465-471, 2022 03.
Artigo em Inglês | MEDLINE | ID: covidwho-1585195

RESUMO

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (five-point ordinal scale). Ordinal logistic regression investigated factors associated with the primary outcome. Results: Of 277 responses, 71 (26%) reported being a lot more busy, 62 (22%) slightly more, 53 (19%) about the same, 50 (18%) slightly less, and 28 (10%) much less busy. Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.


Assuntos
COVID-19 , Estudos Transversais , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2
8.
Palliat Med ; 36(2): 319-331, 2022 02.
Artigo em Inglês | MEDLINE | ID: covidwho-1582706

RESUMO

BACKGROUND: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. AIM: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DESIGN: Cross-sectional national online survey. SETTING/PARTICIPANTS: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. FINDINGS: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. CONCLUSION: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.


Assuntos
COVID-19 , Hospitais para Doentes Terminais , Adulto , Estudos Transversais , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2
9.
BMJ Supportive & Palliative Care ; 11(Suppl 2):A1, 2021.
Artigo em Inglês | ProQuest Central | ID: covidwho-1495560

RESUMO

BackgroundCOVID-19 has placed huge stress on healthcare systems and services, often impacting the well-being of staff across all settings (Mehta, Machado, Kwizera, et al., 2021). Little is known about the pandemic’s impact on hospice staff.AimsIdentify how responding to COVID-19 has impacted hospice staff, whether and why this resulted in experiences of moral distress, and how hospices have responded in supporting staff well-being.MethodsQualitative multiple case study (Yin, 2017) (n= five cases), as part of the CovPall study which explored the multinational response of specialist palliative services to the pandemic. Cases were hospices in England providing specialist palliative care services in any setting. Data collection involved individual interviews with hospice professionals and analysed using framework analysis (Ritchie, Lewis, Nicholls, et al., 2013).Results24 participants sampled by role, experience, and setting. Themes demonstrated how infection control constraints (i.e., visiting restrictions) prohibited and diluted staff’s capacity to provide care that reflected their professional values. This caused moral distress. Despite organisational, team, and individual support strategies to address moral distress, continually managing these constraints led to a ‘crescendo effect’ with cumulative effects of moral distress (e.g., sadness, guilt, frustration, and fatigue) sometimes leading to burnout. Solidarity with colleagues and the feeling of making a valued contribution provided ‘moral comfort’ for some.ConclusionsDespite their experience of dealing with death and dying, the well-being of hospice staff has been, and continues to be, affected by experiences of moral distress during the pandemic.How innovative or of interest is the abstractWe provide an in-depth insight into why and how hospice staff experienced moral distress during the pandemic, alongside how voluntary organisations responded. Given that prolonged experiences of moral distress has detrimental effects on staff and the quality of patient care, (Burston & Tuckett, 2013) national and organisational changes need to be implemented to alleviate and manage the short and long-term impact of moral distress (Jameton, 2017).Funding statementThe CovPall study is jointly funded by UKRI and NIHR [COV0011;MR/V012908/1]. Additional support was from the National Institute for Health Research (NIHR) Applied Research Collaboration, South London, hosted at King’s College Hospital NHS Foundation Trust, and Cicely Saunders International (Registered Charity No. 1087195).

10.
Int J Health Policy Manag ; 2021 Sep 08.
Artigo em Inglês | MEDLINE | ID: covidwho-1478974

RESUMO

BACKGROUND: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. METHODS: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. RESULTS: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (odds ratio [OR]=0.15, 95% CI=0.07-0.3, P<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. CONCLUSION: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.

11.
BMJ Support Palliat Care ; 2021 Sep 12.
Artigo em Inglês | MEDLINE | ID: covidwho-1405222

RESUMO

OBJECTIVES: To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. METHODS: Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis. RESULTS: 277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care. CONCLUSIONS: Policies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.

12.
Palliat Med ; 35(7): 1225-1237, 2021 07.
Artigo em Inglês | MEDLINE | ID: covidwho-1243765

RESUMO

BACKGROUND: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. AIM: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. DESIGN: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. RESPONDENTS: Two hundred and seventy-seven services. RESULTS: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. CONCLUSIONS: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2 , Reino Unido
13.
Palliat Med ; 35(5): 814-829, 2021 05.
Artigo em Inglês | MEDLINE | ID: covidwho-1146899

RESUMO

BACKGROUND: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. AIM: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. DESIGN: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. SETTING/PARTICIPANTS: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. RESULTS: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. CONCLUSIONS: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called 'frugal innovations', in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use.ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225.


Assuntos
COVID-19 , Cuidados Paliativos , Europa (Continente) , Humanos , Invenções , SARS-CoV-2
14.
J Pain Symptom Manage ; 62(3): 460-470, 2021 09.
Artigo em Inglês | MEDLINE | ID: covidwho-1068972

RESUMO

CONTEXT: Systematic data on the care of people dying with COVID-19 are scarce. OBJECTIVES: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. METHODS: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses. RESULTS: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. CONCLUSION: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics.


Assuntos
COVID-19 , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2
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