People with HIV and healthcare workers views on screening for cognitive impairment in people with HIV: A qualitative study.

OBJECTIVES: People with HIV are an ageing population with an increased risk of cognitive impairment. Although cognitive impairment is dependent upon assessment, the acceptability of screening for cognitive impairment is unclear. This study aimed to explore the views of people with HIV and healthcare workers regarding routine screening for cognitive impairment. METHODS: In-depth individual qualitative interviews were conducted with purposively sampled people with HIV and focus groups of healthcare workers from a UK HIV service. Verbatim pseudonymized transcripts were analysed using reflexive thematic analysis supported by NVivo. RESULTS: Twenty people with HIV were interviewed and 12 healthcare workers participated in three focus groups. People with HIV were concerned about developing cognitive issues and were receptive to routine screening. Screening was seen as relevant and an important part of managing health in older age. Healthcare workers expressed concerns regarding the capacity of HIV services to implement routine screening and questioned the validity of screening measures used. People with HIV felt that screening and subsequent detection of cognitive impairment, if present, may help them to prepare for future issues and promote active management strategies and care pathways that would support cognitive health. People with HIV felt that screening should be brief and delivered by the HIV service and that they should be given a choice of administration method. Indications of cognitive impairment detected by a brief screening assessment should be discussed face to face and followed up with a comprehensive assessment. CONCLUSIONS: People with HIV are concerned about cognitive impairment and would welcome regular screening for this as part of the holistic care provided by the HIV team. Both people with HIV and healthcare workers would like more information on cognitive impairment, its screening and ways to support cognitive health.

Experiences of staff providing specialist palliative care during COVID-19: A multiple qualitative case study.

ObjectivesTo explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. DesignQualitative 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. SettingOrganisations providing specialist palliative services in any setting. ParticipantsStaff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. Main outcome measuresExperiences of working in palliative care during the COVID-19 pandemic. ResultsFive 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. ConclusionsThis 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.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

BackgroundPalliative 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. AimTo understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DesignCross-sectional national online survey. Setting/participantsRehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings61 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. ConclusionThis 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. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIGuidelines recommend that rehabilitation targeting function, well-being, and social participation is provided by specialist palliative care services. C_LIO_LIPrior to Covid-19, there was variable provision of palliative rehabilitation in the UK. This variation was related to local service priorities, funding, and commissioning constraints. C_LI What this paper addsO_LIOver time, Covid-19 related disruptions forced services to reconfigure and adapt which caused fluctuations in the shared spaces in which health professionals, patients and family care givers met to participate in rehabilitation. C_LIO_LIThese fluctuations resulted in the adoption of digital and remote forms of care which altered health professionals and patients capacity to participate in, and the equity of access to and reach of, rehabilitation. C_LIO_LICovid-19 has acted as a springboard for learning, with many rehabilitation services hoping to move into the future by (re)gaining losses and integrating these with lessons learned during the pandemic. C_LI Implications for practice, theory or policyO_LIRecommendations are made to support extended reach and more equitable access to rehabilitation in palliative care services. C_LIO_LIWe recommend mixed methods evaluations of hybrid models of in-person and online rehabilitation across palliative care settings. C_LI

Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).

BackgroundVolunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. AimsTo 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. MethodsMulti-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. Results458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (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, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusionVolunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, 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.

''Necessity is the mother of invention'': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall)

BackgroundSpecialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care. AimTo map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall). DesignOnline survey of specialist palliative care providers, 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/participantsInpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results458 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, funding, and IT infrastructure issues. Enablers included; collaborative teamwork, pooling of staffing resources, staff flexibility, a pre-existing IT infrastructure and strong leadership. ConclusionsSpecialist palliative care services have been flexible, highly adaptive and have adopted a frugal innovation model in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225https://doi.org/10.1186/ISRCTN16561225 Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LISpecialist palliative care is part of a whole healthcare system response to COVID-19. C_LIO_LIServices need to make practice changes in response to the global pandemic. C_LI What this paper addsO_LISpecialist palliative care services responded rapidly to COVID-19 in both planning for change and then adapting to needs and requirements. C_LIO_LIServices often relied on improvisation, quick fixes and making do when responding to the COVID-19 crisis. C_LI Implications for practice, theory or policyO_LIIn addition to financial support, greater collaboration is essential to build organisational resilience and drive forward innovation, by minimising duplication of effort and optimising resource use. C_LIO_LIThe effectiveness and sustainability of any changes made during the crisis needs further evaluation. C_LI

The challenges of caring for people dying from COVID-19: a multinational,observational study of palliative and hospice services (CovPall)

BackgroundSystematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic. MethodsWe surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with key challenges. Content analysis explored free text. Findings458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world (1 country unreported); 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{middle dot}07, 95% CI 1{middle dot}81-5{middle dot}20), inpatient palliative care unit rather than other setting (OR 2{middle dot}34, 95% CI 1{middle dot}46-3{middle dot}75). Being outside the UK was associated with lower odds of staff shortages (OR 0{middle dot}44, 95% CI 0{middle dot}26-0{middle dot}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. InterpretationAcross all settings 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. FundingMRC grant number MR/V012908/1, Cicely Saunders International and NIHR ARC South London. Research in contextO_ST_ABSEvidence before this studyC_ST_ABSSystematic data on the response of palliative care services during COVID-19 are lacking. A search of PubMed on 27 August 2020 (start date: 01 December 2019) using keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus) and (multinational OR international) identified no studies that reported multinational or international data; there were 79 articles, mostly opinion pieces, single centre case studies or reports. A search for systematic reviews about palliative care and hospice services during pandemics of PubMed, with the same time periods and the keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus OR SARS-CoV-2) and (systematic review OR meta-analysis), identified one systematic review by Etkind et al, which underpinned this research and shares two senior authors (Higginson, Sleeman). Of 3094 articles identified, 10 studies, all observational, considered the palliative care response in pandemics. Studies were from single units or countries: West Africa, Taiwan, Hong Kong, Singapore, the U.S. (a simulation), and Italy (the only one considering COVID-19). The review concluded hospice and palliative care services are essential in the response to COVID-19 but systematic data are urgently needed to inform how to improve care for those who are likely to die, and/or have severe symptoms. Added value of this studyWe found a high response by palliative care services during the COVID-19 pandemic. Services cared for a surge in patients dying from and with severe symptoms due to COVID-19 in three main categories: patients with underlying conditions and/or multimorbid disease not previously known to palliative care (70% of services), patients already known to palliative care services (47% of services), and patients, previously healthy, now dying from COVID-19 (37% of services). More than three quarters of services reported having staff with suspected or confirmed COVID-19. We found high levels of shortages of Personal Protective Equipment (PPE), staff, medicines and other equipment, with different effects according to service management, care settings and world regions. Mitigating these challenges was extremely time consuming, limiting the palliative care response. Implications of all the available evidenceDespite actively supporting dying patients, those with severe symptoms, their families/carers, and supporting other clinicians, palliative care professionals felt ignored by national health systems during the COVID-19 pandemic. Palliative care services need equipment, medicines and adequate staff to contribute fully to the pandemic response. Their crucial role must be better recognised and integrated, including into infection disease management, with improved workforce planning and management, so that patients and families can be better supported.

Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.

BackgroundDuring the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. AimTo describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic. DesignCross-sectional on-line survey of UK palliative and hospice services response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach. Respondents277 UK palliative and hospice care services. Results37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: adapting local processes and adapting local structures. ConclusionsProfessionals and healthcare providers need to ensure Advance Care Planning is individualised by tailoring it to the values, priorities, and ethnic, cultural, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABS- An important part of palliative cares response to COVID-19 is ensuring that Advance Care Planning discussions occur with patients and their care networks - High quality Advance Care Planning is viewed as a process that adopts a holistic, collaborative, and individualised approach - Prior to COVID-19, challenges to Advance Care Planning included time constraints, lack of training, fears of taking away hope, limited resources, and insufficient knowledge What this paper adds?- The COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality, individualised Advance Care Planning, including the ability to maintain a personalised approach and sharing information between services - COVID-specific challenges to Advance Care Planning exist, including the complexities of decision-making for a novel disease, communication issues, and workload pressures - In responding to these challenges, services adapted local processes (prioritising specific components, normalisation and integration into everyday practice) and structures (using technology, shifting resources, collaboration) of care Implications for practice, theory or policy- COVID-19 has provided an opportunity to re-think Advance Care Planning in which the starting point to any discussion is always the values and priorities of patients themselves - Providers and policymakers need to urgently consider how high-quality Advance Care Planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally - We provide questions for health professionals, services, and policy makers to consider in working towards this