Skip to main content
Top
Published in: BMC Palliative Care 1/2018

Open Access 01-12-2018 | Research article

Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care

Authors: Barbara Pesut, Wendy Duggleby, Grace Warner, Konrad Fassbender, Elisabeth Antifeau, Brenda Hooper, Madeleine Greig, Kelli Sullivan

Published in: BMC Palliative Care | Issue 1/2018

Login to get access

Abstract

Background

A compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections.

Methods

Volunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders.

Results

Seven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers.

Conclusions

Volunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.
Literature
1.
go back to reference Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacity in hospice palliative care: A narrative review. Am J Hosp Palliat Care. 2014;31:69–78.CrossRefPubMed Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacity in hospice palliative care: A narrative review. Am J Hosp Palliat Care. 2014;31:69–78.CrossRefPubMed
2.
go back to reference McKee M, Kelley ML, Guirguis-Younger M. So no one dies alone: a study of hospice volunteering with rural seniors. J Palliat Care. 2007;23:163–72.PubMed McKee M, Kelley ML, Guirguis-Younger M. So no one dies alone: a study of hospice volunteering with rural seniors. J Palliat Care. 2007;23:163–72.PubMed
3.
go back to reference McKee M, Kelley ML, Guirguis-Younger M, MacLean M, Nadin S. It takes a whole community: the contribution of rural hospice volunteers to whole-person palliative care. J Palliat Care. 2010;26:103–11.PubMed McKee M, Kelley ML, Guirguis-Younger M, MacLean M, Nadin S. It takes a whole community: the contribution of rural hospice volunteers to whole-person palliative care. J Palliat Care. 2010;26:103–11.PubMed
4.
go back to reference Duggleby WD, Penz K, Leipert BD, Wilson DM, Goodridge D, Williams A. ‘I am part of the community but...’ The changing context of rural living for persons with advanced cancer and their families. Rural Remote Health. 2011;11:1–12. Duggleby WD, Penz K, Leipert BD, Wilson DM, Goodridge D, Williams A. ‘I am part of the community but...’ The changing context of rural living for persons with advanced cancer and their families. Rural Remote Health. 2011;11:1–12.
5.
go back to reference Sawatzky R, Porterfield P, Lee J, Dixon D, Lounsbury K, Pesut B, et al. Conceptual foundations of a palliative approach: a knowledge synthesis. BMC Palliat Care. 2016;15:1–14.CrossRef Sawatzky R, Porterfield P, Lee J, Dixon D, Lounsbury K, Pesut B, et al. Conceptual foundations of a palliative approach: a knowledge synthesis. BMC Palliat Care. 2016;15:1–14.CrossRef
7.
go back to reference 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;13:1–12.CrossRef 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;13:1–12.CrossRef
8.
go back to reference Candy B, France R, Low J, Sampson L. Does involving volunteers in the provision of palliative care make a difference to patient and family well-being? A systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2015;52:756–68.CrossRefPubMed Candy B, France R, Low J, Sampson L. Does involving volunteers in the provision of palliative care make a difference to patient and family well-being? A systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2015;52:756–68.CrossRefPubMed
11.
go back to reference Kellehear A. Health Promoting Palliative Care. Melbourne: Oxford University Press; 1999. Kellehear A. Health Promoting Palliative Care. Melbourne: Oxford University Press; 1999.
12.
go back to reference Kellehear A, O’Connor D. Health-promoting palliative care: a practice example. Crit Public Health. 2008;18:111–5.CrossRef Kellehear A, O’Connor D. Health-promoting palliative care: a practice example. Crit Public Health. 2008;18:111–5.CrossRef
15.
go back to reference McLoughlin K, Rhatigan J, McGilloway S, Kellehear A, Lucey M, Twomey F, et al. INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness. BMC Palliat Care. 2015;14:65. doi:10.1186/s12904-015-0060-9.CrossRefPubMedPubMedCentral McLoughlin K, Rhatigan J, McGilloway S, Kellehear A, Lucey M, Twomey F, et al. INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness. BMC Palliat Care. 2015;14:65. doi:10.​1186/​s12904-015-0060-9.CrossRefPubMedPubMedCentral
16.
go back to reference Walshe C, Algorta GP, Dodd S, Hill M, Ockenden N, Payne S, et al. Protocol for the end-of-life social action study (ELSA): a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action befriending services on end of life experience. BMC Palliat Care. 2016;15:60. doi:10.1186/s12904-016-0134-3.CrossRefPubMedPubMedCentral Walshe C, Algorta GP, Dodd S, Hill M, Ockenden N, Payne S, et al. Protocol for the end-of-life social action study (ELSA): a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action befriending services on end of life experience. BMC Palliat Care. 2016;15:60. doi:10.​1186/​s12904-016-0134-3.CrossRefPubMedPubMedCentral
17.
go back to reference Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC. Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot. Palliat Med. 2012;26(7):917–23. doi:10.1177/0269216311421834.CrossRefPubMed Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC. Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot. Palliat Med. 2012;26(7):917–23. doi:10.​1177/​0269216311421834​.CrossRefPubMed
18.
go back to reference Morris SM, Payne S, Ockenden N, Hill M. Hospice volunteers: bridging the gap to the community? Health Soc Care Community. 2015; doi:10.1111/hsc.12232. Morris SM, Payne S, Ockenden N, Hill M. Hospice volunteers: bridging the gap to the community? Health Soc Care Community. 2015; doi:10.​1111/​hsc.​12232.
19.
go back to reference MacLeod A, Skinner MW, Low E. Supporting hospice volunteers and caregivers through community-based participatory research. Health Soc Care Community. 2012;20:190–8.CrossRefPubMed MacLeod A, Skinner MW, Low E. Supporting hospice volunteers and caregivers through community-based participatory research. Health Soc Care Community. 2012;20:190–8.CrossRefPubMed
21.
go back to reference Pesut B, Hooper B, Jacobsen M, Nielsen B, Falk M & O ‘Connor BP. Nurse-led navigation to provide early palliative care in rural areas: a pilot study. BMC Palliat Care. 2017;16(37): doi:10.1186/s12904-017-0211-2 Pesut B, Hooper B, Jacobsen M, Nielsen B, Falk M & O ‘Connor BP. Nurse-led navigation to provide early palliative care in rural areas: a pilot study. BMC Palliat Care. 2017;16(37): doi:10.​1186/​s12904-017-0211-2
22.
go back to reference Case MAB. Oncology nurse navigator: ensuring safe passage. Clin J Oncol Nurs. 2011;15:33–40.CrossRef Case MAB. Oncology nurse navigator: ensuring safe passage. Clin J Oncol Nurs. 2011;15:33–40.CrossRef
23.
go back to reference Fillion L, Cook S, Veillette AM, Aubin MI, de Serres M, Rainville FO, et al. Professional navigation framework: elaboration and validation in a Canadian context. Oncol Nurs Forum. 2012;39:E58–69.CrossRefPubMed Fillion L, Cook S, Veillette AM, Aubin MI, de Serres M, Rainville FO, et al. Professional navigation framework: elaboration and validation in a Canadian context. Oncol Nurs Forum. 2012;39:E58–69.CrossRefPubMed
24.
go back to reference Lorhan S, Cleghorn L, Fitch M, Pang K, McAndrew A, Applin-Poole J, et al. Moving the agenda forward to cancer patient navigation: understanding volunteer and peer navigation approaches. J Cancer Educ. 2012;28:84–91.CrossRef Lorhan S, Cleghorn L, Fitch M, Pang K, McAndrew A, Applin-Poole J, et al. Moving the agenda forward to cancer patient navigation: understanding volunteer and peer navigation approaches. J Cancer Educ. 2012;28:84–91.CrossRef
26.
go back to reference Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.CrossRefPubMed Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.CrossRefPubMed
27.
go back to reference Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11:3–20.CrossRefPubMed Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11:3–20.CrossRefPubMed
28.
go back to reference Thorne S. Interpretive Description: qualitative Research for Applied Practice. 2nd ed. New York: Routledge; 2016. Thorne S. Interpretive Description: qualitative Research for Applied Practice. 2nd ed. New York: Routledge; 2016.
29.
Metadata
Title
Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care
Authors
Barbara Pesut
Wendy Duggleby
Grace Warner
Konrad Fassbender
Elisabeth Antifeau
Brenda Hooper
Madeleine Greig
Kelli Sullivan
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-017-0210-3

Other articles of this Issue 1/2018

BMC Palliative Care 1/2018 Go to the issue