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Volunteer - Synthesis

Introduction

Across Australia, some residential aged care facilities have their own internal volunteer program, of which some or all volunteers may be involved in supporting people at or near end of life. This model of volunteer program is different to the Community Visitors Scheme (CVS) by which the Australian Government’s Department of Health funds auspicing organisations like Red Cross to link their volunteers (external to the aged care service) to a particular aged care resident or community-based service user. The CVS-volunteer visit to the person in aged care is comparable to that of a friend or family member and the volunteer must not be required to undertake any additional training with the aged care service. This section applies to evidence on training for volunteers who form part of an internal volunteer program in palliative care.
 
In total seven reviews [1-7] were included in the synthesis of evidence for the topic of volunteers in palliative care; one of which was particularly concerning care of older adults in palliative care. [1]
 

Quality Statement

Overall the quality of the studies was mixed with only one review rating highly, [2] however no studies were included and therefore had limited usefulness to this synthesis. Half of the remaining reviews were of adequate quality, [1,3,4] and the remaining three of low quality. [5-7] The main limitations were lack of reporting on bias and quality of the studies included in the reviews; all of which were generally mixed method or largely qualitative studies not specific to an older adult cohort.
 

Key Themes: 

  • Contribution of volunteers to palliative care outcomes
  • Relationships between volunteers and health care professionals
  • Volunteers, training and support
 

Contribution of volunteers to palliative care outcomes 

Historically volunteers have been involved in palliative care as companions whose presence eases distress, loneliness and existential suffering. Volunteers are also valued for strengthening bonds between dying people and their community, friends, activities and hobbies. [1,4] The volunteer roles described in the literature include psychosocial and emotional support, companionship, personalised attention, comfort, advocacy and support for families and friends. [1,6] However the literature also indicated significant diversity in the nature of roles performed by volunteers, consistent with the diverse context, location and cultural settings of the palliative care service. [6] 

Although the main focus of palliative care volunteer activities are interpersonal in nature, other volunteer roles may be more ‘instrumental’ such as driving or administration. [6] The review by Whittall et al suggested that volunteers in rural settings might have a wider extended role outside of palliative care in helping with shopping, travel to appointments, respite care and social visits [7] perhaps akin to connecting the person back to the community [1,6] rather than just into palliative care. The flexibility to ‘do what no-one else has time to do’ and to ‘just being there’ [3] added to the informality and sense of emotional support through close personal relationships engendered by volunteers. [6]

A study described in the review by Candy et al. [4] found that people with volunteer support lived on average 80 days longer than those without, while Connell et al. [1] reported that hospice users were generally more satisfied and rated their care as ‘excellent’ where volunteer hours were highest. Volunteers were valued for their expertise in acting in an intermediary role between husband-wife, wife-family member and family-paid staff. [4,6] The value of the emotional support role provided by volunteers is a consistent theme in studies reporting on feedback by carers and family members [1,5,6] with one service describing ‘emotional care’ as being performed by 86% of their volunteers. [3]

Many reviews indicated the potential for volunteers to contribute to meeting the increasing end of life and palliative care needs of the community. [3,5,6] Within this ‘economic’ theme, volunteers are valued as a possible workforce complement in the future, arguably taking the place of paid roles, to meet the needs of the aged and palliative care sector. Although this is speculative, the reviews don’t expand on the possible impact of this solution on the motivations of existing staff, or relationships with volunteers.
 

Relationships between volunteers and health care professionals

Most studies reflect an understanding of the volunteer as a workforce element of the clinical team in terms of their contribution to palliative care outcomes. [2,5,7] However, studies also note differences in the theoretical concepts of care between health care professionals and volunteers, noting the friendship-style care offered by volunteers [4] as if a surrogate friend or family member [3] ‘developing genuine and true relationships’ [3] in which they ‘express a commitment to the hallmarks of palliative care’ [6] and build trusting relationships in a personalised way [6] by using an approach described as a ‘third culture of care that fuses elements of formal care with the informal visiting of friends and neighbours’ [1] and arguably undertaking a role that is so alike to friendship that would be inappropriate for paid staff to perform. [6] 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. [1,5] Carers and family identified volunteers as having an identity separate from paid staff. [3]

These differences are revealed in conflict and tension between volunteers and health care professionals and in one study just over 36% of volunteers had considered leaving their role. Although nurses and health care professionals were consistently noted as supportive and valuing of palliative care volunteers [1,6] nevertheless conflict arose from their different theoretical understandings of care from health care professionals not recognising the skills and contribution of volunteers, a lack of role clarity and consequent inconsistency in volunteers support, a different interpretation of boundaries, a mismatch in expectations about volunteer autonomy and health care professional’s supervision and from contested understandings of confidentiality. [1] The consequent tension resulted in frustration for volunteers at being too rigorously ‘policed’ by clinicians [3] a sense of being less valued in the clinical hierarchy [1,3,5,6] receiving late or insufficient referrals [1] as well as experiencing exacerbated ‘job stress’. [3]

Training, meetings, mentoring and supervision are typical interventions by health care professionals and volunteer coordinators to address boundary issues. [1,5,6] In one of the studies discussed by Connell et al. [1] the volunteers generally understood their roles in not discussing a patient’s diagnosis, not gossiping and not proselytising, but typically matters addressed in boundary maintenance and professional development for volunteers include confidentiality, cultural understandings, accepting money or gifts from patients, and not performing certain domestic or personal care roles.
 

Volunteers, training and support

In general terms the goal of training is to empower volunteers and to understand their limits of service delivery, help them understand the palliative care system and so buffer against burnout. [1,5,6] In the review by Pesut et al. [6] two studies evaluated that volunteers felt more prepared to deal with the challenges of death and dying and had better self-care and well-being after completing either a 27-hour or 40-hour initial training program with ongoing learning tasks.

The subject 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. [1,5,6] Training for volunteers serves to clarify volunteer boundaries or practice [6] helps volunteers to establish their own practice and emotional framework [1] and empowers volunteers to act on an understanding of acceptable practice rather than to rely on personal judgement. [1] 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. [1,7]

Training, adequacy of training and the challenge of effective training is a significant sub-theme in the volunteer literature. The literature found that training programs varied in duration and content and were typically tailored to suit the activities and contextual setting of the volunteers [1,6] although it also found that evidence on the efficacy of training was lacking. The Cochrane review by Horey et al [2] found an absence of studies relating to the assessment of training and support for volunteers met the inclusion criteria. Studies were generally excluded on the basis of not being robust in design with no control group, no randomising of cohorts or because they represented unpublished theses. The literature supported the need for further research in this area. [1,5,6]

Structured training and capacity building of volunteers can enhance the confidence of health professionals in volunteers [1,6] although one study reviewed by Pesut et al. [6] found that some 30% of nurse respondents were unaware of the training provided to volunteers. Three of the studies included by Connell et al [1] identified a need for continuing education for volunteers, as well as access to support groups.

In addition, training can help buffer against the dynamics found in small communities where ‘everyone knows everyone’ [1] and in which the close community relationships can create ethical dilemmas for privacy and confidentiality for volunteers. [1,7] In these contexts (rural, paediatrics) often the death of the person is deeply felt and the need for emotional support for the volunteer is significant. [6,7] Similar issues are raised for rural and remote palliative care nurses discussed in Self Care pages.
 

Summary

Volunteers play a valuable role in palliative care and their skills can be utilised in a variety of contextual settings. It is important to remember that volunteers are offering their time and energy without financial reimbursement and enjoy the social and flexible nature of the role. However, training and initiation into palliative care organisations is important to define volunteer roles, reduce ambiguity and provide support and strategies for self-care and further skills in managing particular challenges that will be encountered in supporting people through their end of life. Currently the diversity of roles, contexts and theoretical understandings of palliative care complicate our understanding of how best to train and support volunteers but positive relationships between health care professionals and volunteers provides a positive basis for which volunteers to contribute to palliative care outcomes. More quality research is required in this area.
 

Evidence Gaps:

Gaps in the research identified were:
  • How to best train and support volunteers in palliative care
  • Measure short and long term success of volunteer programs for training and support
  • Calibrate palliative care outcomes following use of volunteer services
  • Cost benefits of using volunteer services

Page updated 23 May 2017

  • References

  1.  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. 2016 Jan 1:1049909116660517.
  2. 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.
  3. 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 10;13(1):3.
  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.
  5. 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. Palliative medicine. 2013;27(5):428-36.
  6. Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacity in hospice palliative care: a narrative review. Am J Hosp Palliat Care. 2014;31(1):69-78.
  7. 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.