Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall)

Document Type : Original Article

Authors

1 International Observatory on End of Life Care, Lancaster University, Lancaster, UK

2 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

3 Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College, London, UK

4 The Martin House Research Centre, Department of Health Sciences, University of York, York, UK

Abstract

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 preCOVID-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.

Keywords

Main Subjects


  1. Bradshaw A, Dunleavy L, Walshe C, et al. 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. Palliat Med. 2021;35(7):1225-1237. doi:1177/02692163211017387
  2. Oluyase AO, Hocaoglu M, Cripps RL, et al. The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall). J Pain Symptom Manage. 2021;62(3):460-470. doi:1016/j.jpainsymman.2021.01.138
  3. Dunleavy L, Preston N, Bajwah S, et al. 'Necessity is the mother of invention': specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliat Med. 2021;35(5):814-829. doi:1177/02692163211000660
  4. Scott R, Goossensen A, Payne S, Pelttari L. What it means to be a palliative care volunteer in eight European countries: a qualitative analysis of accounts of volunteering. Scand J Caring Sci. 2021;35(1):170-177. doi:1111/scs.12832
  5. Burbeck R, Low J, Sampson EL, et al. Volunteers in specialist palliative care: a survey of adult services in the United Kingdom. J Palliat Med. 2014;17(5):568-574. doi:1089/jpm.2013.0157
  6. Vanderstichelen S, Cohen J, Van Wesemael Y, Deliens L, Chambaere K. Volunteers in palliative care: a healthcare system-wide cross-sectional survey. BMJ Support Palliat Care. 2020. doi:1136/bmjspcare-2020-002321
  7. Gaskin K. The Economics of Hospice Volunteering. London: Hospice Information; 2003.
  8. Bloomer MJ, Walshe C. 'It's not what they were expecting': a systematic review and narrative synthesis of the role and experience of the hospital palliative care volunteer. Palliat Med. 2020;34(5):589-604. doi:1177/0269216319899025
  9. Walshe C, Dodd S, Hill M, et al. How effective are volunteers at supporting people in their last year of life? a pragmatic randomised wait-list trial in palliative care (ELSA). BMC Med. 2016;14(1):203. doi:1186/s12916-016-0746-8
  10. Burbeck R, Candy B, Low J, Rees R. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliat Care. 2014;13(1):3. doi:1186/1472-684x-13-3
  11. Claxton-Oldfield S. Hospice palliative care volunteers: the benefits for patients, family caregivers, and the volunteers. Palliat Support Care. 2015;13(3):809-813. doi:1017/s1478951514000674
  12. Naylor C, Mundle C, Weaks L, Buck D. Volunteering in Health and Care: Securing a Sustainable Future. London: The King's Fund; 2013.
  13. Lorhan S, Wright M, Hodgson S, van der Westhuizen M. The development and implementation of a volunteer lay navigation competency framework at an outpatient cancer center. Support Care Cancer. 2014;22(9):2571-2580. doi:1007/s00520-014-2238-8
  14. Morris S, Wilmot A, Hill M, Ockenden N, Payne S. A narrative literature review of the contribution of volunteers in end-of-life care services. Palliat Med. 2013;27(5):428-436. doi:1177/0269216312453608
  15. Nissim R, Regehr M, Rozmovits L, Rodin G. Transforming the experience of cancer care: a qualitative study of a hospital-based volunteer psychosocial support service. Support Care Cancer. 2009;17(7):801-809. doi:1007/s00520-008-0556-4
  16. Dunleavy L, Walshe C, Machin L. Exploring the psychological impact of life-limiting illness using the attitude to health change scales: a qualitative focus group study in a hospice palliative care setting. Eur J Cancer Care (Engl). 2020;29(6):e13302. doi:1111/ecc.13302
  17. Vanderstichelen S, Cohen J, Van Wesemael Y, Deliens L, Chambaere K. The liminal space palliative care volunteers occupy and their roles within it: a qualitative study. BMJ Support Palliat Care. 2020;10(3):e28. doi:1136/bmjspcare-2018-001632
  18. Dodd S, Hill M, Ockenden N, et al. 'Being with' or 'doing for'? how the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA). Support Care Cancer. 2018;26(9):3163-3172. doi:1007/s00520-018-4169-2
  19. Luijkx KG, Schols JM. Volunteers in palliative care make a difference. J Palliat Care. 2009;25(1):30-39.
  20. Gardiner C, Barnes S. The impact of volunteer befriending services for older people at the end of life: mechanisms supporting wellbeing. Prog Palliat Care. 2016;24(3):159-164. doi:1080/09699260.2015.1116728
  21. Candy B, France R, Low J, Sampson L. Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? a systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2015;52(3):756-768. doi:1016/j.ijnurstu.2014.08.007
  22. Herbst-Damm KL, Kulik JA. Volunteer support, marital status, and the survival times of terminally ill patients. Health Psychol. 2005;24(2):225-229. doi:1037/0278-6133.24.2.225
  23. Söderhamn U, Flateland S, Fensli M, Skaar R. To be a trained and supported volunteer in palliative care - a phenomenological study. BMC Palliat Care. 2017;16(1):18. doi:1186/s12904-017-0193-0
  24. Beasley E, Brooker J, Warren N, et al. The lived experience of volunteering in a palliative care biography service. Palliat Support Care. 2015;13(5):1417-1425. doi:1017/s1478951515000152
  25. Coleman H, Walshe C. What are the emotional experiences of being a volunteer in palliative and end-of-life care settings? a systematic review and thematic synthesis. J Pain Symptom Manage. 2021;62(3):e232-e247. doi:1016/j.jpainsymman.2021.02.025
  26. Knights D, Knights F, Lawrie I. Upside down solutions: palliative care and COVID-19. BMJ Support Palliat Care. 2020. doi:1136/bmjspcare-2020-002385
  27. Radbruch L, Knaul FM, de Lima L, de Joncheere C, Bhadelia A. The key role of palliative care in response to the COVID-19 tsunami of suffering. Lancet. 2020;395(10235):1467-1469. doi:1016/s0140-6736(20)30964-8
  28. von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61(4):344-349. doi:1016/j.jclinepi.2007.11.008
  29. Eysenbach G. Improving the quality of web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). J Med Internet Res. 2004;6(3):e34. doi:2196/jmir.6.3.e34
  30. Garcia J, Evans J, Reshaw M. “Is there anything else you would like to tell us'' – Methodological issues in the use of free-text comments from postal surveys. Qual Quant. 2004;38(2):113-125. doi:1023/B:QUQU.0000019394.78970.df
  31. O'Cathain A, Thomas KJ. "Any other comments?" open questions on questionnaires - a bane or a bonus to research? BMC Med Res Methodol. 2004;4:25. doi:1186/1471-2288-4-25
  32. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. doi:1177/1049732305276687
  33. Chuang E, Cuartas PA, Powell T, Gong MN. "We're not ready, but i don't think you're ever ready." Clinician perspectives on implementation of crisis standards of care. AJOB Empir Bioeth. 2020;11(3):148-159. doi:1080/23294515.2020.1759731
  34. Cheng HW, Li CW, Chan KY, Sham MK. The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care. J Pain Symptom Manage. 2014;47(6):e5-7. doi:1016/j.jpainsymman.2013.12.234
  35. Kates J, Gerolamo A, Pogorzelska-Maziarz M. The impact of COVID-19 on the hospice and palliative care workforce. Public Health Nurs. 2021;38(3):459-463. doi:1111/phn.12827
  36. Abbott J, Johnson D, Wynia M. Ensuring adequate palliative and hospice care during COVID-19 surges. JAMA. 2020;324(14):1393-1394. doi:1001/jama.2020.16843
  37. Koffman J, Gross J, Etkind SN, Selman L. Uncertainty and COVID-19: how are we to respond? J R Soc Med. 2020;113(6):211-216. doi:1177/0141076820930665
  38. Fietkiewicz K. Jumping the digital divide: how do “silver surfers” and “digital immigrants” use social media? Networking Knowledge: Journal of the MeCCSA Postgraduate Network. 2017;10(1):5-26. doi:31165/nk.2017.101.494
  39. Vulpe S, Crăciun A. Silver surfers from a European perspective: technology communication usage among European seniors. Eur J Ageing. 2020;17(1):125-134. doi:1007/s10433-019-00520-2
  40. Gonzales E, Matz-Costa C, Morrow-Howell N. Increasing opportunities for the productive engagement of older adults: a response to population aging. Gerontologist. 2015;55(2):252-261. doi:1093/geront/gnu176
  41. Vanderstichelen S, Cohen J, Van Wesemael Y, Deliens L, Chambaere K. The involvement of volunteers in palliative care and their collaboration with healthcare professionals: a cross-sectional volunteer survey across the Flemish healthcare system (Belgium). Health Soc Care Community. 2020;28(3):747-761. doi:1111/hsc.12905
  42. Pickell Z, Gu K, Williams AM. Virtual volunteers: the importance of restructuring medical volunteering during the COVID-19 pandemic. Med Humanit. 2020;46(4):537-540. doi:1136/medhum-2020-011956
  43. Menon JC, Rakesh PS, John D, Thachathodiyl R, Banerjee A. What was right about Kerala's response to the COVID-19 pandemic? BMJ Glob Health. 2020;5(7):e003212. doi:1136/bmjgh-2020-003212
Volume 11, Issue 10
October 2022
Pages 2146-2154
  • Receive Date: 12 April 2021
  • Revise Date: 27 August 2021
  • Accept Date: 06 September 2021
  • First Publish Date: 08 September 2021