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BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.
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Planificación Anticipada de Atención , Investigación Cualitativa , Humanos , Cuidados Paliativos , Registros Electrónicos de Salud , Masculino , Femenino , Inglaterra , Reino Unido , Entrevistas como AsuntoRESUMEN
BACKGROUND: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. AIM: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. DESIGN: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. SETTING/PARTICIPANTS: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. RESULTS: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. CONCLUSION: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.
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Cuidados Paliativos , Cuidado Terminal , Humanos , Cuidado Terminal/métodos , Cuidado Terminal/psicología , Cuidado Terminal/normas , Estudios Transversales , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicología , Femenino , Masculino , Encuestas y Cuestionarios , Persona de Mediana Edad , Casas de Salud/organización & administración , Casas de Salud/estadística & datos numéricos , Casas de Salud/normas , Adulto , Reino Unido , Liderazgo , Investigación Cualitativa , AutoeficaciaRESUMEN
INTRODUCTION: Within 10 years of multiple sclerosis (MS) progression, nearly all women will have experienced symptoms associated with bladder, bowel and/or sexual health. Yet despite the impact these symptoms have on physical, psychological and social well-being, it remains an underserved area within the UK healthcare system. STUDY AIM: This research employs a participatory research approach framed within the principles of intersectional feminism to collaboratively investigate the lived experiences of pelvic floor dysfunction (PFD) and healthcare interactions among UK-based women with MS. SETTING AND PARTICIPANTS: Women residing in the United Kingdom with MS were invited to participate in online interviews facilitated by the primary author. ANALYSIS: A thematic framework analysis offering a structured yet adaptable approach to data collection and interpretation. RESULTS: One focus group involving four women with MS and seven individual, one-to-one interviews with women with MS provided insights into the challenges associated with navigating both MS and PFD. Four main themes included: Navigating MS and PFD; Cycles of Control; Mind, Mobility and Bladder Embodiment; Silenced Voices: The Impact of Taboos/Stigma/Dismissal on Preventing Access and Resistance through Collective Community. Six subthemes were also identified. Taken together, these themes cumulatively reflect PFD as an unmet healthcare need. CONCLUSION: Our findings underscore negative healthcare experiences, inadequate information provision and unmet needs related to PFD, emphasising the compounding effects of gender and disability biases. IMPACT: We hope that these insights can lay the groundwork for developing tailored therapeutic interventions and improved PFD healthcare for women with MS. Potential solutions include using existing MS support communities. PUBLIC CONTRIBUTIONS: Women with MS were actively involved in co-producing interview scripts for one-to-one interviews. The primary author shared study findings at an MS group event, engaging in discussions with over 30 individuals, including people with MS and their loved ones. MS advocates played a pivotal role in contextualising the study within the broader lived experience of MS.
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Grupos Focales , Esclerosis Múltiple , Investigación Cualitativa , Humanos , Femenino , Esclerosis Múltiple/psicología , Esclerosis Múltiple/terapia , Persona de Mediana Edad , Reino Unido , Adulto , Trastornos del Suelo Pélvico/psicología , Trastornos del Suelo Pélvico/terapia , Entrevistas como Asunto , Aceptación de la Atención de Salud/psicología , Estigma SocialRESUMEN
BACKGROUND: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. AIM: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. DESIGN: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. SETTING/PARTICIPANTS: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. RESULTS: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. CONCLUSIONS: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.
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Planificación Anticipada de Atención , Cuidadores , Grupos Focales , Investigación Cualitativa , Humanos , Cuidadores/psicología , Masculino , Femenino , Anciano , Persona de Mediana Edad , Anciano de 80 o más Años , Adulto , Difusión de la Información , Londres , Cuidado TerminalRESUMEN
OBJECTIVES: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care. DESIGN: Mixed methods systematic review using a data-based convergent synthesis design. SETTING AND PARTICIPANTS: Older people aged ≥60 years who are approaching the end of their lives in multiple settings. METHODS: The study was underpinned by a conceptual framework of integrated palliative care, which informed the search strategy, data extraction, analysis, and synthesis. A hybrid search strategy was implemented, with database searches (PsycINFO, MEDLINE, CINAHL, and ASSIA) complemented by snowball searches. Qualitative and quantitative data were analyzed by narrative synthesis to summarize and explain the findings. The findings informed a logic model depicting the mechanisms of using person-centered outcome measures to support integrated palliative care. RESULTS: Twenty-six studies were included. Three mixed methods studies, 2 qualitative studies, and 21 quantitative studies were included. There was evidence that person-centered outcome measures could support integrated palliative care through informing palliative care policy development (n = 4), facilitating joint working across settings (n = 5), enabling close collaboration of multidisciplinary teams (n = 14), promoting joint education (n = 1), facilitating timing and specialist referral (n = 6), and enhancing patient-centered care (n = 3). CONCLUSIONS AND IMPLICATIONS: This review makes an important, novel, and theoretically informed contribution to the delivery of scalable and sustainable integrated palliative care into the care of older people using person-centered outcome measures. The constructed logic model provides a conceptual framework and practical approach to how person-centered outcome measures support multilevel integration. A future area of research is the development of person-centered outcome measure interventions informed by the logic model to meet clinical needs.
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Prestación Integrada de Atención de Salud , Cuidados Paliativos , Atención Dirigida al Paciente , Humanos , Anciano , Evaluación de Resultado en la Atención de Salud , Anciano de 80 o más Años , Masculino , FemeninoRESUMEN
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.
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COVID-19 , Delirio , Humanos , Reproducibilidad de los Resultados , Calidad de Vida , Cuidados Paliativos , Psicometría , Encuestas y CuestionariosRESUMEN
Introduction: Little 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 methods: A 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. Results: There 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. Conclusion: Relationship-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.
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COVID-19 , Cuidado Terminal , Humanos , Pandemias , Estudios Transversales , COVID-19/epidemiología , Cuidado Terminal/métodos , Reino UnidoRESUMEN
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.
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COVID-19 , Cuidados Paliativos , Humanos , Acetaminofén , Tos , BenzodiazepinasRESUMEN
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.
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COVID-19 , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Cuidados Paliativos/métodos , PandemiasRESUMEN
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.
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COVID-19 , Delirio , Anciano , COVID-19/terapia , Estudios de Cohortes , Disnea , Humanos , Midazolam , Morfina , Dolor , Cuidados PaliativosRESUMEN
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.
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COVID-19 , Personal de Salud/psicología , Humanos , Cuidados Paliativos , Pandemias , Investigación CualitativaRESUMEN
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.
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COVID-19 , Hospitales para Enfermos Terminales , Adulto , Estudios Transversales , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2RESUMEN
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.
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COVID-19 , Estudios Transversales , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2RESUMEN
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.
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COVID-19 , Cuidados Paliativos al Final de la Vida , Humanos , Pandemias , COVID-19/epidemiología , COVID-19/prevención & control , Cuidados Paliativos , VoluntariosRESUMEN
INTRODUCTION: Person-centred outcome measures improve quality of care and patient outcomes but are used inconsistently in palliative care practice. To address this implementation gap, we developed the 'RESOLVE Implementation Strategy'. This protocol describes a process evaluation to explore mechanisms through which this strategy does, or does not, support the implementation of outcome measures in routine palliative care practice. METHODS AND ANALYSIS: Multistrand, mixed-methods process evaluation. Strand one will collect routine outcomes data (palliative Phase of Illness, Integrated Palliative care Outcomes Scale, Australia-modified Karnofsky Performance Status) to map the changes in use of outcome measures over 12 months (July 2021-July 2022). Strand two will collect survey data over the same 12-month period to explore how professionals' understandings of, skills in using and ability to build organisational practices around, outcome measures change over time. Strand three will collect interview data to understand the mechanisms underpinning/affecting our implementation strategy. Thematic framework analysis and descriptive statistics will be used to analyse qualitative and quantitative data, respectively. ETHICS AND DISSEMINATION: For strand one, ethical approval has been obtained (Cambridge REC, REF: 20/EE/0188). For strands two and three, ethical approval has been obtained from Hull York Medical School ethics committee (2105). Tailored feedback of study findings will be provided to participating sites. Abstracts and papers will be submitted to national/international conferences and peer-reviewed journals. Lay and policy briefings and newsletters will be shared through patient and public involvement and project networks, plus via the project website.
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Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos , Australia , Recolección de Datos , HumanosRESUMEN
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.
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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.
Asunto(s)
Planificación Anticipada de Atención , COVID-19 , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2 , Reino UnidoRESUMEN
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.