1135349 research-article2022 PMJ0010.1177/02692163221135349Palliative MedicineWalshe et al. Original Article Palliative Medicine Understanding the role and deployment of 1­–12 © The Author(s) 2022 volunteers within specialist palliative care Article reuse guidelines: services and organisations as they have sagepub.com/journals-permissions https://doi.org/10.1177/02692163221135349 DOI: 10.1177/02692163221135349 journals.sagepub.com/home/pmj adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey Catherine Walshe1 , Leszek Pawłowski2 , Sophie Shedel3, Steven Vanderstichelen4 , Melissa J Bloomer5 , Anne Goossensen6 , Joaquín T Limonero7 , Karen Sangild Stoelen8, Chiara Caraffa9, Leena Pelttari10 and Ros Scott11 Abstract Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic. Keywords COVID-19, COVID-19 pandemic, hospices, palliative care, volunteers, workforce 1International 8University College Copenhagen, Copenhagen, Denmark Observatory on End of Life Care, Division of Health 9Italian Federation for Palliative Care, Milan, Italy Research, Lancaster University, Lancaster, UK 2Department of Palliative Medicine, Medical University of Gdańsk, 10Hospice Austria, Vienna, Austria 11University of Dundee, Dundee, Scotland, UK Gdańsk, Poland 3Lancaster University, Lancaster, UK 4Vrije Universiteit Brussel, Gent, Belgium Corresponding author: 5Griffith University School of Nursing and Midwifery & Princess Catherine Walshe, International Observatory on End of Life Care, Division of Health Research, Lancaster University, Health Innovation Alexandra Hospital Intensive Care Unit, Brisbane, QLD, Australia 6University of Humanistic Studies, Utrecht, The Netherlands One, Sir John Fisher Drive, Lancaster, England LA1 4YW, UK. 7Universitat Autònoma de Barcelona, Bellaterra (Cerdanyola del Vallès), Email: c.walshe@lancaster.ac.uk @cewalshe Barcelona, Spain 2 Palliative Medicine 00(0) What is already known? •• Effective use of volunteers is a possible response to the COVID-19 pandemic •• Many specialist palliative care services depend on volunteers for quality care provision •• At the start of the pandemic, volunteering numbers in specialist palliative care dropped significantly What this paper adds? •• The reduction in volunteer deployment in specialist palliative care has been sustained and is reported to have negatively affected quality of care •• Volunteer training largely shifted to real-time online training and covered COVID-19, infection prevention and use of PPE •• Few specialist palliative care organisations have yet created new volunteer roles or ways of working Implications for practice, theory or policy •• Specialist palliative care organisations need to consider how to create new volunteering opportunities that may attract a younger volunteer demographic •• Ways of harnessing community or social action volunteers to be involved in palliative care volunteering are required •• The potential of virtual or remote volunteering in palliative care have to be further developed in ways that are inclusive and do not promote inequity of opportunity Background identified 1.5 volunteers to every paid member of staff,9 providing up to 8 h a week of care and support10 and The COVID-19 pandemic has demonstrated both the pos- Dutch ‘Almost at home homes’ typically have one paid sibilities and challenges of the roles of volunteers. coordinator and 80–100 volunteers.11 Volunteers offer Positively, there has been a pivot in many countries to stability; a Belgian survey identified that 57% of volun- harness the time and skills of volunteers. Effective use of teers had been in their current care organisation for at volunteers was highlighted as a possible response to the least 6 years, and 36% for over 10 years.10 If there has pandemic,1 with calls for mobilising and training a citizen been a decline in palliative care volunteering that mirrors volunteer workforce that is ready and able to connect the more general changes in volunteering during the with patients in need of basic social support.2 Examples COVID-19 pandemic, this could have substantial impacts include ‘micro-volunteering’ where individuals are con- on care provision. Early data indicated that at least in the nected to those needing help, often via social media or initial days of the pandemic, specialist palliative care vol- other technologies, with examples in India3 and in the unteering numbers dropped significantly.12 A multi- UK.4 Other initiatives include more formal volunteering national survey of specialist palliative care providers roles such as village health volunteers in Thailand.5 found that 78% of organisations that deployed volunteers However, it is also apparent that the shift to COVID-19 pre-COVID-19 reported less or much less use of volun- focused volunteer roles could crowd out existing volun- teers during the early stages of COVID-19 (data collected teering for other causes, as found in China where April–July 2020).12 This reduction in volunteers was felt to experienced local volunteers rapidly shifted to support protect potentially vulnerable volunteers, with policy needs arising from COVID-19.6 There has been a precipi- changes preventing much volunteer support. tous decline in volunteering across organisations that tra- It is important that the ongoing deployment and role of ditionally rely on a substantial volunteer contribution. A volunteers during the COVID-19 pandemic is understood, large Australian survey found that since February 2020, especially to know if and how services have changed from almost two-thirds (65.9%) of volunteers had stopped vol- their immediate response reported in the earlier stages of unteering as a precaution to minimise COVID-19 transmis- the pandemic, and to help develop policy for the future, sion, equivalent to 12.2 million hours per week.7 given the dependence that many specialist palliative care In specialist palliative care services, which encompass services have on volunteers for quality care provision. The a range of services provided to people with chronic, life- aim of this study therefore is to understand the roles and threatening conditions towards the end of life, volunteers deployment of volunteers in specialist palliative care ser- can outnumber paid staff, although data on the number of vices as they have adjusted to the impact of COVID-19 on volunteers across countries can be scant.8 A UK survey their organisations a year into the pandemic. Walshe et al. 3 Methods that anyone with access to the link was able to partici- pate, if they met the inclusion criteria. We anticipated a Research questions response of between 50 and 300 services, depending on Over the course of the COVID-19 pandemic: the eventual breadth of the dissemination of the online survey link, estimated from an earlier general palliative (a) How has the deployment and/or roles of volun- care survey,12 but the numbers were not restricted or teers within specialist palliative care services capped. changed, and what has been the impact of any Recruitment: Information about the survey, including changes? the link to access the survey, was openly and widely dis- (b) What factors contributed to any changes in the seminated through authors’ institutional websites, per- deployment and/or roles of volunteers within spe- sonal networks and contacts with national palliative care cialist palliative care services? networks and organisations, social media (via advertising (c) What have been the challenges and opportunities through posts on Twitter, Facebook and LinkedIn), and associated with any changes in the deployment working with the European Association for Palliative Care and/or roles of volunteers within specialist pallia- (EAPC) (e.g. a blog was published inviting eligible organi- tive care services? sations to complete the survey). No incentives to com- plete were offered. All dissemination modes included a Design: Descriptive, observational multi-national link to the online survey, and an invitation to circulate the study, with cross-sectional online survey of providers of survey link to others. Potential participants answered specialist palliative care services. This survey is reported screening questions at the start of the survey to confirm according to the CHERRIES guidelines for reporting on eligibility, and clicking to progress to the survey indicated e-surveys.13 consent. Setting: Specialist palliative care is traditionally deliv- Data collection: The open online survey was built using ered wherever patients and those important to them are QualtricsXM software,15 and the full survey is included in cared for, and most settings can have volunteers support- Supplemental Materials (S1). Data on key service related ing their work. Specialist palliative care is provided by spe- information was collected with a suite of questions cap- cialised services for patients with complex problems, turing the deployment of volunteers pre-COVID-19, often requiring a team approach, combining a multi-pro- through the COVID-19 pandemic, and future plans. Both fessional team with an interdisciplinary mode of work. closed and free-text questions were used, together with Team members are highly qualified and should have their skip options dependent on given answers; 83 possible main focus of work in palliative care.14 Such services can questions were asked across 9 blocks. Participants could include hospices (voluntary and publicly managed), pallia- navigate through the survey using forward and back but- tive care units, palliative day care centres, palliative home tons. The survey was developed by members of the EAPC care teams (providing care within the person’s usual place volunteer taskforce, incorporating some core questions of residence), and palliative support teams (including from a previous survey of the impact of COVID-19 on pal- within acute hospitals). They are distinct from what is liative care.16 Pilot testing of question wording, format sometimes called generalist palliative care services, which and technical completion was done via EAPC volunteer are care services in which palliative care is offered but not taskforce members, who asked eligible colleagues to test the primary goal of care provision. the survey and link and provide feedback as a check on Inclusion criteria: Specialist palliative care services and face validity. The survey was only available in an English organisations in any country. As per the setting informa- language version, although some recruitment materials tion above, this included: hospices, day hospices, hospital were translated to national languages. Participants could based palliative care teams/wards, home care/commu- only complete the survey once, with an automatic nity teams and other services that offer specialist pallia- reminder prompt 1 week following commencement of tive care. the survey if it were not yet complete. Respondents did Exclusion criteria: No volunteer provision within the not receive information about whether they had fully service. completed the survey. The survey was open from Participants: The person responsible for managing the 19.5.2021 to 5.7.2021. deployment of volunteers within a participating specialist Data analysis: Data were downloaded from QualtricsQM palliative care service, typically the volunteer lead or to Microsoft Excel, hosted on Lancaster University secure manager, was invited to complete the online survey on OneDrive, checked and cleaned to check for potential behalf of the organisation. This could include a paid staff duplicate entries (using IP, email address or organisation member or volunteer with this responsibility. name to ensure only one entry per organisation), and to Sample: This survey used a convenience sampling remove incomplete entries. Entries were judged as suffi- approach, driven by the open method of recruitment such ciently complete to include in analysis when descriptive 4 Palliative Medicine 00(0) organisational information was present, even if answers Exposure to COVID-19 to all available questions had not been given. There were no completeness checks for participants prior to submis- Organisations had different degrees of experience with sion, and no response items that were mandatory or COVID-19. Their amount of exposure through caring for enforced. Pseudonymised quantitative data were trans- people with COVID-19, and if their staff or volunteers had ferred to Statistica v13™ (TIBCO Software Inc., Palo Alto, COVID-19 is detailed in Table 2, and displayed graphically CA, USA). Descriptive analysis of data (e.g. organisational in Figure 1. characteristics, volunteer deployment) included the use There were few concerns that volunteers had been of frequency counts (including missing data), percent- exposed to or infected with COVID-19 because of their ages, measures of central tendency and range. Where deployment within the organisation. Where volunteers data permitted, contingency tables were created using had reported infection, it was usually due to general com- chi-squared tests to compare responses by characteristics munity transmission: considered to potentially have an impact on volunteer Only a limited number of volunteers were in the hospice deployment (e.g. geography or COVID-19 experience). building from summer 2020. They were tested regularly, along For the analysis of free-text comments, data were with all people working at or visiting us. No volunteers who extracted into Microsoft Excel. Comments tended to be supported in the building had suspected COVID-19. Volunteers brief, expanding on answers to closed questions.17,18 After who did have COVID-19, were those who were either initial familiarisation, a coding framework was inductively volunteering remotely, or their volunteering was paused. developed through close reading of the text and the use (Respondent 219, UK, Children’s service, multiple settings) of broad codes to categorise the data, agreed and then applied to the free text data (by RS, CW) using a conven- tional content analysis technique.19 Coding and subse- Changes in volunteer deployment quent higher order categorisation were inductively driven Whilst the median number of patients with COVID-19 that by the content of the free-text comments, with categories had been cared for by responding organisations was rela- identified initially within, and then compared across, the tively modest, most organisations had nonetheless made sets of answers to each question. substantial changes to their volunteer deployment because Ethics: Approval was granted by the Lancaster of the prevailing pandemic situation. 47.7% of responding University Faculty of Health and Medicine Research Ethics organisations indicated they had changed how they Committee (FHMREC20131 18.5.2021). deployed volunteers since the start of the pandemic (21.0% said no change, 31.3% missing data). One hundred and nineteen (39.1%) said they were deploying volunteers less, Results but only 27 (8.9%) said they were using volunteers more The survey received 754 visitors, of whom 17 declared (92, 30.3% missing data). Organisations in Europe were less they did not meet the inclusion criteria, 281 provided no likely to change volunteer deployment than those from the data, and 152 did not proceed beyond the screening ques- rest of the world (p = 0.04706). Prior to the pandemic, the tions. Valid responses were received from 304 organisa- mean number of estimated volunteers actively deployed tions (40.3% of visitors). Of the 304 responses included in within responding organisations was 203.1, but at the time the analysis 210 (69.0%) had completed the entire survey. of answering the survey this mean had dropped to 33.1. In The mean survey progress across all included respondents Table 3 the change in the type of role the volunteers were was 81.5%. Valid responses were received across 35 coun- and are now fulfilling is displayed. tries, categorised into geographical regions for analysis Organisations generally reported reductions in patient (full list of responding countries in Supplemental Materials facing work, and a shift to roles such as home-based S2). Descriptive data from these respondents are found in administration or delivering items to patients and Table 1. Most responding organisations primarily cared families: for adults (60.9%), were based in Europe (80.3%), and We had to pause volunteering, then cancel two types of roles commonly provided in-patient palliative care (62.2%) altogether (support visitor, [. . .] room attendant) as they and/or specialist palliative care home care consulting ser- were patient facing. We have only kept or continued indirect vices (57.6%). Most were charitably funded or non-profit volunteers. Additionally, we have had to pause them for (62.5%). stretches when we have had 2nd and 3rd (current) waves. Findings are presented taking account of the main (Respondent 137, North America, Adult, In-patient setting) areas of the survey and the categorisation and analysis of the free-text comments to illuminate and expand upon Generally, a shift can also be seen towards the volunteers these areas. The areas presented are: exposure to COVID- who are deployed being younger than pre-pandemic, 19; changes in volunteer deployment; changes in volun- with an increase in the proportion of those estimated to teer training; new or changed volunteer roles; and impact be under 50 years, and a commensurate drop in those of reduced volunteering. over 70 years old (Table 4). Walshe et al. 5 Table 1. Characteristics of responding organisations. Number of responses Percentage (N = 304) Population served by the responding organisation Adult patients only 185 60.90 Child patients only 12 3.90 Both adult and child patients served 105 34.50 Missing 2 0.70 Geographical Region of responding organisation Western Europe 113 37.20 Northern Europe 17 5.60 Eastern Europe 15 4.90 Southern Europe 49 16.10 British Isles 50 16.50 Asia 15 4.90 Australasia 14 4.60 North America 24 7.90 South America 5 1.60 Africa 2 0.70 Settings in which care offered by each organisationa In-patient hospice/ward/palliative care unit 189 62.20 Palliative day care centres/services 71 23.40 Hospital palliative care advisory team 84 27.60 Specialist palliative home care service (supporting or consulting about patients at home 175 57.60 and/or in the community) Providing hands on nursing care at home/in the community (e.g. hospice@home, pall@ 95 31.50 home) Bereavement services offered 125 41.10 Service management Charitable/non-profit 190 62.50 Public 44 14.50 Private 18 5.90 Mixed funding 36 11.80 Missing 16 5.30 aDoes not total 100% as organisations could offer multiple services. Table 2. The experience of organisations to date with COVID-19 since January 2020. All data are since January 2020 Organisations Organisations who had cared Organisations who Organisations who who had cared for patients with suspected had staff with had volunteers with for patients with (untested but with clinical suspected/confirmed suspected/confirmed confirmed (by test) diagnosis/symptoms) COVID-19 COVID-19 cases of COVID-19 COVID-19 Yes (n of organisations and %) 143 (47.0%) 115 (37.8%) 179 (55.9%) 113 (37.3%) No (n of organisations and %) 144 (47.4%) 156 (51.3%) 98(32.2%) 145 (47.7%) If yes, mean number of cases 350.5 856.9 74.5 6.2 If yes, median number of cases 5 10 4 3 If yes, range of number of cases 0–20,000a 0–60,000a 0–8000 0–60 aThelarger numbers in the range were very few or one organisation likely covering a large area, in countries with very high numbers of those with COVID-19. These had an effect of skewing the mean, but are included for context. 6 Palliative Medicine 00(0) Figure 1. Box and whisker plot of the distribution of cases of COVID-19 experienced by organisations, where the number of cases is ⩽100. Table 3. Deployment of volunteers in different roles before and during COVID-19. Roles Organisations reporting Organisations reporting volunteers Change volunteers in these roles in these roles during their perceived pre-pandemic peak of COVID-19 to date n (%) n (%) Direct patient/family facing support 186 (61.2) 54 (17.8) 70.7% decrease Indirect patient/family facing support (e.g. 137 (45.1) 39 (12.8) 71.5% decrease reception, refreshments, driving) Back office functions (e.g. finance, gardening etc.) 116 (38.2) 19 (6.3) 83.6% decrease Fundraising functions (e.g. shops, lottery etc.) 109 (35.9) 10 (3.3) 90.8% decrease Other roles 47 (15.5) 42 (13.8) 10.6% decrease Table 4. Estimated proportion of volunteers in each age range pre-COVID-19 and during the COVID-19 pandemic. Age range of volunteers Mean estimated % in this age range pre-COVID-19 Mean estimated % in this age range currently, during (in years) the COVID-19 pandemic ⩽18 1.3 1.4 19–30 8.0 11.8 31–50 19.1 30.5 51–70 49.1 45.1 71–80 17.8 9.0 80+ 3.9 1.4 Walshe et al. 7 Table 5. Ranking of reasons for deploying volunteers less or much less. Importance Reason for reduction in using volunteers Mean ranking scores 1 Our organisation made a policy decision to stop or reduce use of volunteers during the 2.8 COVID-19 pandemic. 2 Our volunteers are mostly considered vulnerable to COVID-19 (e.g. due to age or pre-existing 3.2 conditions) 3 The areas that our volunteers were deployed in were stopped because of external regulations 3.3 or lockdowns (e.g. retail/fundraising) 4 Our volunteers indicated that they preferred not to volunteer at this time due to fears about 3.6 COVID-19 5 National policies or procedures prevented us from deploying volunteers. 4.4 6 Volunteers were no longer available (e.g. they had to provide care for family members, were 5.5 essential workers elsewhere). 7 Our organisation did not have the resources to coordinate or support volunteers during the 5.6 COVID-19 pandemic. 8 Other 7.7 Organisations indicated that the perceived increased Changes in volunteer training risk of some of their volunteers, should they contract COVID-19, were seen as a barrier to volunteering during The amount of training provided to volunteers decreased the pandemic: during the COVID-19 pandemic, with a shift where pre- sent to online training, with real time training via video The volunteers have been very scared of COVID-19, they are conferencing software used more than asynchronous old and some are at risk. We now experience, where we can e-learning (Table 6). meet, that it is difficult for many to get started again. Several have used the shutdown as an opportunity to stop New or changed volunteer roles volunteering. (Respondent 27, Northern Europe, Adult/Child, multiple settings) Participating organisations were asked if they had created new volunteering roles or ways of volunteering during the Organisations that indicated that they were deploying vol- COVID-19 pandemic. Only 51 organisations (16.8%) indi- unteers less or much less were asked to rank a selection of cated that they had done so, however 108 organisations reasons why they had done this, displayed in Table 5. The (35.5%) said they had used (or continued to use) virtual most common reasons were organisational policies, vol- volunteering. Such virtual volunteering was mostly com- unteer vulnerabilities and external regulations. monly telephone contact between volunteers and The free text comments primarily illuminated the patients/family members (83, 27.3%), video calls (67, reduction in volunteers either due to policy changes, or 22.0%), or text contacts (46, 15.1%). Such contact was because the volunteers themselves (or their families) also used for bereavement support with 59 (19.4%) using were concerned about the risks: telephone contact and 35 (11.5%) using texts. Virtual vol- unteering roles were more likely to be created by charita- ble/non-profit organisations (p = 0.00209). New Volunteers were stopped from working too soon, deeply missed. When level 4 lockdown ended our 65 and under volunteering roles were more likely to be created by pri- returned immediately to our IPU [in-patient unit], very soon vate organisations (p = 0.00987), or where they had cared after others returned to the community as they wished, all at for patients with confirmed (by test) cases of COVID-19 their own discretion. Families were concerned for their loved (p = 0.00113). Table 7 displays the likelihood of organisa- ones, the measures we put in place from an infection control tions providing supportive interventions for volunteers or and return to work perspective reduced worries greatly. creating new roles dependent on their experiences of car- (Respondent 221, Australasia, Adult/Child, multiple settings) ing for those with COVID-19, or having staff or volunteers with COVID-19. Full details of this analysis are found in Where volunteers were not deployed during the COVID- Supplemental Materials (S3). 19 pandemic, organisations worked to keep contact with Changed ways of working for some volunteers included their volunteers using telephone (59.5%), email (53.6%), support for patients and families (including virtual sup- post (29.6%), and via meetings (including online meet- port, transport, deliveries of groceries), organisational ings) (36.8%). support (including remote administrative and fundraising 8 Palliative Medicine 00(0) Table 6. Volunteer training pre and during the COVID-19 pandemic. Volunteer training offered Pre-COVID-19 N (%) During COVID-19 N (%) Yes 185 (60.9) 148 (48.7) No 31 (10.2) 65 (21.4) Mode of training Regular in-person training 148 (48.7) 42 (13.8) Real-time online training (with the usage of web-based communication 40 (13.2) 112 (36.8) software e.g. Zoom) E-learning with usage materials available online 36 (11.8) 49 (16.1) Individual training 77 (25.3) 36 (11.8) Other 15 (4.9) 10 (3.3) Specific training offered during COVID-19 Education on COVID-19 120 (39.5) Education on infection prevention and control measures 141 (46.4) Training on use of personal protective equipment 125 (41.1) Training on COVID-Marshalling (e.g. training to guide people around your 43 (14.1) organisation, check that PPE is being worn correctly and other infection control measures are being followed). Other 57 (18.8) Table 7. Relationships between organisational experience of COVID-19 and approaches to volunteering. Organisations that cared more provided informal/formal support programmes than p = 0.00192 for patients with suspected often such as debriefing and counselling for staff organisations (untested but with clinical created new volunteering roles or ways of that did not p = 0.01920 diagnosis/symptoms) of volunteering during the COVID-19 pandemic have such COVID-19 created new volunteering COVID-19 specific roles experience p = 0.00004 Organisations that had provided informal/formal support programmes p = 0.00221 the staff with suspected/ such as debriefing and counselling for staff confirmed COVID-19 created new volunteering roles or ways of p = 0.02598 volunteering during the COVID-19 pandemic Organisations that had used virtual volunteering p = 0.03163 physically present volunteers created new COVID-19 specific roles for p = 0.00000 with suspected or confirmed volunteers COVID-19 Organisations that had offered training to volunteers during the p = 0.04368 volunteers with suspected or COVID-19 pandemic confirmed COVID-19 created new volunteering roles or ways of p = 0.00815 volunteering during the COVID-19 pandemic roles, gardening or kitchen roles), some COVID-19 specific serve orders at the table, and clear up and clean when visitors roles (such as delivering PPE, or managing access or lat- have left. (Respondent 270, UK, Adults, mixed settings) eral flow testing). Impact of reduced volunteering Many services which were previously face-to-face only were provided by telephone or video-conferencing. We developed Impact on care provision a new role providing listening support for those who are The general overall reduction in volunteer deployment bereaved, and a team of compassionate neighbours - both of these have started on the phone or through video- was keenly felt, with 154 (50.6%) of responding organisa- conferencing. Some compassionate neighbours are tions saying that it had an impact on their organisation supporting their nominee by letter-writing. We asked some of and/or the care of patients and families, and only 51 our patient transport team to help us by collecting and (16.8%) of respondents indicating that it had not had an moving retail donations. We have restructured some teams impact. Organisations identified impact on patients and to enable us to meet infection control requirements - e.g. by families, on staff, and on the organisations themselves. having volunteers in our cafe to take orders from visitors, For patients they perceived reduced support, and Walshe et al. 9 increased isolation and loneliness, affecting the patient shift was noted to volunteers being generally younger. experience: However, few organisations had created new volunteer roles or ways of working. Over half of organisations Terrible, a lot of patients and families did not have the support responding perceived that this reduction in volunteers they needed. In a clinic for example even if we have a signed had affected care quality. contract with them to visit patient they banned all the visit since first lockdown and still now. . . (Respondent 30, Western Europe, Adult, specialist palliative home care service) What this study adds Volunteers are known to contribute to safe and effective People remained alone with their grief, are lonely, had little or no social contact, had to die alone. (Respondent 39, palliative care, and enhance patient satisfaction.20,21 It is Western Europe, Adult/Child, mixed settings) likely that much of the impact of volunteers is in enabling social relationships, ‘being with’ patients, and providing social support.22,23 This contribution is impactful, known Impact on the organisation to have a substantial effect on health and wellbeing.24,25 Lack of volunteer involvement meant less support for The major reductions in the deployment of volunteers staff, increased staff pressure and workload as staff tried found and sustained thus far through the COVID-19 pan- to compensate by taking on the roles that volunteers had demic must therefore be recognised as likely to have a previously fulfilled: large impact on care and care outcomes. Volunteers also contribute to the sustainability of specialist palliative care Has put additional pressure on paid staff who have to cover organisations, supporting important functions such as roles previously filled by volunteers. (Respondent 115, fundraising and income generation, as well as supple- Western Europe, Adult/Child, mixed settings) menting paid staff in office functions.9,10 Organisations must recognise the impact of this deficit, and see volun- Very often our volunteers are seen as equally necessary in teers as an essential component of the organisation, not caring for our patients. They help our nurses with washing purely an added extra. If interventions are not put in place patients, give and prepare food, making beds,. . . when there to enable the return of volunteers to specialist palliative are no volunteers nurses can’t take care of as many patients care organisations then it is likely that there will be at the same time because they are understaffed. (Respondent adverse outcomes at both personal and organisational 239, Western Europe, Adults, In-patient setting) levels. The COVID-19 pandemic appears to have accelerated Organisations also noted a poorer quality of service, and a already anticipated changes in patterns and types of vol- different atmosphere without the joy, fun and ‘normality’ unteering. This includes trends for a more episodic styles that volunteers bring. of volunteering,26 including so-called ‘micro-volunteer- ing’.27 Such changes are likely to challenge specialist palli- There has been a significant impact on the atmosphere in each hospice setting. The role volunteers play in enabling ative care volunteering programmes that have typically conversation and joy has been deeply missed. (Respondent have relied on ‘constant’ volunteers, rather than those 286, UK, Adult, mixed settings) who are ‘serial’ volunteers, or responding to need as a ‘trigger’ volunteer.28 It is imperative that urgent attention Volunteers made our space more lively and caring for patients is given to addressing these changes as despite stated and their families. The patients don’t notice the impact but desires to return to previous volunteering patterns,29 it is we do. We know that volunteers can help stave off loneliness unlikely that this will be fully possible. Specialist palliative in patients who have no care circle, and can fill in the voids care organisations must give attention to how they attract, when family/friends aren’t able to visit. (Respondent 117, recruit, train, and construct meaningful roles for volun- Western Europe, Adult, mixed settings) teers, including those that are virtual or remote, for those who may have different amounts of time to give in unex- Discussion pected or different patterns. The policy response of most organisations to restrict or Main findings reduce the deployment of volunteers within their organi- The high reduction in the deployment of volunteers in sation stands in stark contrast to rise of volunteering in specialist palliative care organisations across the world general during the COVID-19 pandemic. Social action and appears to be sustained over a year into the COVID-19 neighbourhood volunteering were common pandemic pandemic. The most common reasons given for this sus- responses, with social networks, local knowledge and tained reduction was because of the organisations own social trust associated with community organising and policy decision to do so, the vulnerability of current volun- volunteering.30,31 Place and identity are important deter- teers, or the impact of external regulations/lockdowns. A minants of volunteering, with meaning ascribed to the 10 Palliative Medicine 00(0) relationship between people and their localities.32 There major cultural and linguistic differences across partici- has not been sufficiently strong engagement between pants and this may have affected the interpretation of such ‘ground up’, locality-based volunteering opportuni- questions, and hence the response given. The survey was ties and public institutions during the COVID-19 pan- completed by volunteer leads, and hence reflects their demic.30,31 Whilst impressive in responsiveness and scale, views, not those of volunteers themselves. Free text com- such social action or neighbourhood volunteering initia- ments, whilst commonly given, were often short with lit- tives are not a panacea; volunteers were not equally dis- tle context, in answer to set questions, so it was not tributed across communities and were mostly women, always possible to fully interpret justifications for deci- middle-class, highly educated and of working age.31 sions made and the questions posed may have influenced Underlying social inequalities are known to present sub- the breadth of answers given. stantive barriers to volunteering.33 Specialist palliative care organisations should act to bridge these worlds, Conclusion building on the strengths of both to build a responsive offer that also has the potential to be attuned to promot- The continued major reduction in the previously common ing equity in volunteering opportunities. There are exist- deployment of volunteers within specialist palliative care ing examples of initiatives acting in such a responsive services is likely to have a continuing negative effect on manner both pre and during COVID-19,34,35 and strong care provision. It is imperative that services find ways to voices calling for such community involvement and own- creatively deploy volunteers in ways that mitigate risk, but ership.36 However, there is currently a disjunct for many offer flexible and responsive volunteering opportunities between the relative formality of their volunteering pro- matched to the skills and availability present in the com- grammes and the flexibility and responsiveness of com- munities they serve. munity-based initiatives. It has been argued that in order to enable and sustain resilient and confident, ‘disaster- Authorship proof’ communities, areas which merit attention include CW, LeP, SV, MJB, AG, JTL, KSS, CC, LP and RS were responsible how to engage and support active citizens, new (digital) for conceptualising and designing the study and survey. SS and ways of engagement, transforming formal organisations, CW managed data collection processes. SS, CW and LeP were and alignment with the (local) context.37 If hospice and responsible for data cleaning and quantitative data analysis, and palliative care organisations are to thrive in a pandemic RS and CW for free-text analysis. CW drafted the article, LeP, SV, (and hopefully post-pandemic) world they must seize this MJB, AG, JTL, KSS, CC, LP and RS revised it critically and approved opportunity to consider the future role and function of the version to be published. volunteers, considering how to offer more flexible, inno- vative opportunities rooted in place and locality. Declaration of conflicting interest The contributions of volunteers remain relatively The author(s) declared the following potential conflicts of inter- under-researched, and this survey has pointed to a num- est with respect to the research, authorship, and/or publication ber of potential areas for future research: exploring the of this article: CW is a member of the EAPC board of directors, LP role and contribution of a new cadre of younger volun- and RS are chairs of the EAPC volunteering taskforce, and CW, teers offering different skills and patterns of availability; SV, AG, CC are taskforce members. understanding in more depth and detail the personal and organisational relationships between volunteers, staff and Funding organisations; and detailed exploration of the possibilities The author(s) received no financial support for the research, and limitations of virtual and remote volunteering in the authorship, and/or publication of this article. specific area of specialist palliative care. Research ethics and participant consent Approval was granted by the Lancaster University Faculty of Strengths and limitations Health and Medicine Research Ethics Committee (FHMREC20131 This was a large, multi-national survey with closed and 18.5.2021). Survey instructions clarified that consent to partici- free-text design giving insight and understanding. pate was implied when the participant clicked through to the However, the pattern of responses is geographically clus- first page of the survey. tered (e.g. many respondents from Germany, Italy and the UK), and this may have affected the results in unknown Data management and sharing ways, and it was not possible to analyse per country Data are stored in Lancaster University’s PURE repository, con- because of small numbers from most countries. There are sent to share data was not given by participants. Walshe et al. 11 ORCID iDs 13. Eysenbach G. 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