Volunteers
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Volunteers

Key Messages

  • Volunteers make a valuable contribution to palliative care outcomes by relieving distress and strengthening cultural and interpersonal bonds. [1-7]
  • Volunteers could contribute to meeting the increasing need in the community for end-of-life care and palliative care. [4-8]
  • Care by health care professionals and by volunteers may differ significantly. [1,2,4,7]  These differences are sometimes revealed in conflict and tension between volunteers and health care professionals. [1,4-8]
  • Structured approaches to training, meetings, mentoring and supervision help address boundary issues, guide and empower volunteers and buffer against burnout. [1,4,6-8]
  • Although structured training and capacity building of volunteers contributes greatly to the confidence of health professionals in volunteers, [1,4,6,7] research in this area is lacking. [1,4,6-8]

Background

Historically volunteers have been involved in palliative care as companions whose presence eases distress, loneliness and existential suffering.

This summary provides an overview of the evidence for the role of volunteers in palliative care and their support and training needs.

Evidence Summary

Volunteers make a valuable contribution to palliative care outcomes by relieving distress and strengthening bonds between dying people and their community, friends, activities and hobbies. [1,2] Although typical roles include psychosocial and emotional support, companionship, personalised attention, comfort, advocacy and support for families and friends [1,4] there may be significant diversity in the nature of roles performed by volunteers depending on the context, location and cultural settings of the palliative care service [4,6,7] particularly in rural areas. [3] Carers and family identify volunteers as having an identity separate from paid staff. Some reviews indicated the potential for volunteers to contribute to meeting the increasing end of life and palliative care needs of the community. [4-8]

Studies note differences in the theoretical concepts of care between health care professionals and volunteers, [1,2,4,5] in that volunteers may value personal, local and specific knowledge over generalisable knowledge and may value a psychosocial model of care over a medical model of care. [1,8] These differences are sometimes revealed in conflict and tension between volunteers and health care professionals [1,4-8] and may result in volunteers being too rigorously ‘policed’ by clinicians [5] or them having a sense of being less valued in the clinical hierarchy [1,4,6,8] and consequently receiving late or insufficient referrals [1] as well as experiencing exacerbated ‘job stress’. [5]

Training material reflects the volunteer’s role in psychosocial support, grief and loss, communication and listening skills, death anxiety, cultural competency, complementary therapies and managing negative feelings and conflicts of interest. [1,4,8] Structured approaches to training, meetings, mentoring and supervision help address boundary issues, [1,4,6-8] empower volunteers and to understand their limits of service delivery, help them understand the palliative care system and help to buffer against burnout. [1,4,6-8] Training also helps volunteers in small communities to better cope with limited resources, where there is less likelihood of having an integrated-team approach to palliative care. [1,3] Although structured training and capacity building of volunteers contributes greatly to the confidence of health professionals in volunteers [1,4,6,7] research in this area is lacking. [1,4,6-8]

Emerging research suggests that volunteers assisting in the care of people with dementia, provides companionship, can distract and calm people with dementia, help ensure their safety, promote interactions or engagement in activities, and improve their nutrition. [6,7]

Quality Statement

Overall the quality of the evidence was moderate to low, with the only high-quality Cochrane review failing to retrieve any studies on which to synthesise findings. [9] Most of the reviews failed to report adequately on quality or bias of the studies included and a lack of robust research in this area was cited several times as limitations.


Page updated 08 July 2021
 

  • References

  • About PubMed Search

  1. Whittall D, Lee S, O'Connor M. Factors affecting rural volunteering in palliative care - an integrated review. Aust J Rural Health. 2016 Dec;24(6):350-356. Epub 2016 Jul 6.
  2. Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacity in hospice palliative care: a narrative review. Am J Hosp Palliat Care. 2014 Feb;31(1):69-78. Epub 2012 Dec 31.
  3. 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 May;27(5):428-36. Epub 2012 Jul 24.
  4. 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 Mar;52(3):756-68. Epub 2014 Aug 23.
  5. 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 Feb;13(1):3.
  6. Hurst A, Coyne E, Kellett U, Needham J. Volunteers motivations and involvement in dementia care in hospitals, aged care and resident homes: An integrative review. Geriatr Nurs. 2019 Sep-Oct;40(5):478-486. doi: 10.1016/j.gerinurse.2019.03.010. Epub 2019 Mar 25.
  7. Hall CL, Brooke J, Pendlebury ST, Jackson D. What is the Impact of Volunteers Providing Care and Support for People with Dementia in Acute Hospitals? A Systematic Review. Dementia (London). 2019 May;18(4):1410-1426. doi: 10.1177/1471301217713325. Epub 2017 Jun 6.
  8. Connell B, Warner G, Weeks LE. The Feasibility of Creating Partnerships Between Palliative Care Volunteers and Healthcare Providers to Support Rural Frail Older Adults and Their Families: An Integrative Review. Am J Hosp Palliat Care. 2017 Sep;34(8):786-794. doi: 10.1177/1049909116660517. Epub 2016 Jul 20.
  9. Horey D, Street AF, O'Connor M, Peters L, Lee SF. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Rev. 2015 Jul 20;(7):CD009500.

Definitions

Volunteerism: Persons who donate their services (Source: MeSH Thesaurus).

Volunteering is time willingly given for the common good and without financial gain (Source: Volunteering Australia 2015 http://www.volunteeringaustralia.org/policy-and-best-practise/definition-of-volunteering/)

The volunteer's role is to strengthen the ability of the ill person, and his/her family and friends to live as fully and as richly as possible.

Palliative care volunteers help provide comfort and support to people and families living with a life-limiting illness in the home, hospital, hospices, residential aged care facilities and palliative care units, contact with families through the time of bereavement. 

Volunteers may be involved in:
  • listening
  • providing emotional support
  • assisting at mealtimes
  • helping with transport/outings
  • respite care
  • maintaining contact with the family
  • bereavement support
(Volunteering, Palliative Care South Australia, http://www.pallcare.asn.au/Info-Resources/Volunteering)

Searches

(volunteers[mh:noexp] OR hospital volunteers[mh]  OR volunteer*[ti] OR voluntary worker*[ti])