Open Collections

UBC Faculty Research and Publications

Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care Pesut, Barbara; Duggleby, Wendy; Warner, Grace; Fassbender, Konrad; Antifeau, Elisabeth; Hooper, Brenda; Greig, Madeleine; Sullivan, Kelli Jul 3, 2017

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata


52383-12904_2017_Article_210.pdf [ 1016.22kB ]
JSON: 52383-1.0348702.json
JSON-LD: 52383-1.0348702-ld.json
RDF/XML (Pretty): 52383-1.0348702-rdf.xml
RDF/JSON: 52383-1.0348702-rdf.json
Turtle: 52383-1.0348702-turtle.txt
N-Triples: 52383-1.0348702-rdf-ntriples.txt
Original Record: 52383-1.0348702-source.json
Full Text

Full Text

RESEARCH ARTICLE Open AccessVolunteer navigation partnerships: Pilotinga compassionate community approach toearly palliative careBarbara Pesut1*, Wendy Duggleby2, Grace Warner3, Konrad Fassbender4, Elisabeth Antifeau5, Brenda Hooper6,Madeleine Greig7 and Kelli Sullivan7AbstractBackground: A compassionate community approach to palliative care provides important rationale for buildingcommunity-based hospice volunteer capacity. In this project, we piloted one such capacity-building model inwhich volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase foradults living in community. The goal was to improve quality of life by developing independence, engagement, andcommunity connections.Methods: Volunteers received navigation training through a three-day workshop and then conducted in-homevisits with clients living with advanced chronic illness over one year. A nurse navigator provided education andmentorship. 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 conductedvisits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connectionsand facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and foundthe role satisfying and meaningful. Clients and family rated the service as highly important to their care because ofhow 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 surrogatesocial 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 thecommunity. 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 feasibleway to foster a compassionate community approach to care for an aging population. The program is now beingimplemented by hospice societies in diverse communities across Canada.Keywords: Hospice and palliative care, Volunteers, Compassionate community, Navigation, Public health* Correspondence: barb.pesut@ubc.ca1Faculty of Health and Social Development, University of British ColumbiaOkanagan, 1147 Research Road, Kelowna, BC V1V 1V7, CanadaFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (, which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver( applies to the data made available in this article, unless otherwise stated.Pesut et al. BMC Palliative Care  (2018) 17:2 DOI 10.1186/s12904-017-0210-3“Everything comes at you so fast and there are so manydecisions to make and you’re all sixes and sevens andwhen your volunteers come out we can sit and talk aboutthis, and it helps us to understand a little more whythey’re [healthcare] doing this or that. And oh, what adifference that makes.” (N-CARE Client)BackgroundVolunteers play a vital role in palliative care through sup-port, advocacy, and caregiver respite [1] in a variety of set-tings, including residential care, hospital, and home. Theimportance of their role is magnified in rural areas wherehealthcare resources are limited [2–4], and in the contextof an aging population where early support [5], providedat home [6], is the optimal standard of care. Although re-search on volunteers is in a nascent stage, there is accu-mulating evidence of the benefits of volunteers forpalliative patients and their families [1, 7, 8].Developments in a public health approach to palliativecare provide important rationale for the growth of volun-teer capacity. Although the public health approach to pal-liative care has various understandings in the literature[9], the project reported in this paper builds upon the ap-proach that recognizes the essential nature of social sup-port to overall well-being [10], and the relevance of healthpromotion strategies for those on a palliative trajectory[11, 12]. This social support, public health approach re-quires strategic partnerships between governments, com-munities, and services to develop important social capital,which is characterized by relationships of trust, empathy,and cooperation. Healthy communities coordinate effortsto improve these essential partnerships; compassionatecommunities work to ensure that those most vulnerablebenefit from broad-based support in accordance with theirspecialized needs [13].Although the public health approach to palliative care isbecoming more visible in the literature, there is yet littleevidence to support this approach [14]. However, there arenotable studies in progress. The INSPIRE study is evaluat-ing the use of a volunteer-led social and practical supportmodel for community dwelling adults in Ireland [15]. TheELSA study is examining the effect of a ‘social action’ vol-unteer on adult and informal carer outcomes in 12 sites inEngland [16]. One pilot study in Australia tested the impactof a “community network facilitator,” whose role was tomobilize social networks, on caregiver support. Caregiversparticipating in the intervention arm realized improve-ments on a number of outcome measures, however no sig-nificant differences between the control and interventiongroup were identified; a result that could be attributed tothe small pilot sample size [17]. Results from these studieswill contribute to our understanding of how a public health,compassionate community approach to care can impactoutcomes for palliative clients and families in Westerncontexts.Community-based hospice societies are strategically po-sitioned to support the realization of a public health ap-proach to palliative care. Indeed, recent evidence suggeststhat there is substantial scope for hospices to developgreater community engagement to assist those living withadvanced life-limiting illnesses [18, 19]. However, a recentstudy exploring this public health approach in NewZealand indicated that although it was a priority for themajority of hospices studied, the means by which torealize that approach were less well-developed [20]. In thisproject, we sought to develop this compassionatecommunity, public health approach through a model ofvolunteer navigation called N-CARE (Navigation: con-necting, accessing, resourcing, engaging), designed to pro-vide early palliative support in rural communities throughcommunity-based hospice societies.N-CARE was developed based upon findings from atwo-year trial of nurse navigation to support an earlypalliative population [21]. It is important to note that thepublic health approach to navigation described in thispilot is different from the health service approach to navi-gation, and hence, the volunteer roles differ. For example,cancer care has developed robust models of navigationthat incorporate volunteers who assist individuals to navi-gate cancer services [22–24]. Comparably, the publichealth approach of the volunteer role in the N-CAREmodel was focused on improving older adult quality of lifeby assisting them to develop social capital and connec-tions within their community. Moreover, the volunteerfocused on meeting the quality of life concerns of theclient through supportive interactions designed to inform,engage, and build belonging and security [13]. The naviga-tion role also included identifying and addressing commu-nity gaps as part of a capacity-building focus. As such,N-CARE included key elements of a public health approachincluding the mobilization of community-based resourcesand supportive networks by trained volunteers who wereoverseen by a community-based organization and advisorycommittee. However, volunteers were trained and sup-ported by an expert nurse navigator which facilitated someconnections to formal healthcare services. In this paper wereport the findings of the N-CARE pilot.MethodsThis pilot study was conducted in a single site conductedin a defined geographic area, consisting of three co-locatedrural communities, each with populations of 10,000 or less.The navigation intervention was piloted for 12 months(2015–2016). Mixed method evaluation was conducted atsix months and 12 months using questionnaires and semi-structured interviews (see Fig. 1). Qualitative and quantita-tive data were collected concurrently, analyzed separately,Pesut et al. BMC Palliative Care  (2018) 17:2 Page 2 of 11and used to triangulate findings. Ethical approval was ob-tained from two universities and the health authority.The intervention consisted of in-home visits by trainedvolunteers to provide navigation support. (see Fig. 1).Volunteers were supported by a nurse navigator who pro-vided an oversight and mentoring role. Clients and volun-teers were recruited as study participants. Client andvolunteer screening, and obtaining informed consent,were done by the nurse navigator. To be eligible, clientshad to be 55 years of age or older and have one or moreadvanced chronic illnesses that could reasonably lead todeath within the next year (e.g., cancer, solid organ failure,neurodegenerative). The service was only availablethrough the study, but clients could opt out of the evalu-ation and continue receiving the service if they desired todo so. Volunteers were required to have one year of vol-unteer experience (or equivalent background) and werescreened through a criminal record check, referencechecks, and an interview with the nurse navigator. Afterthe volunteers received navigation training, the nursenavigator matched the client with a volunteer and a jointvisit was conducted by the nurse and volunteer navigator.The volunteer navigator conducted independent visits ac-cording to the client preference (typically every two tothree weeks) over 12 months. The nurse navigator con-ducted independent visits every three months to collectoutcome data and to ensure the intervention was accept-able to clients. To facilitate the ongoing development ofvolunteers, the nurse navigator met with individual volun-teers on an as-needed basis, as well as through groupmeetings that took place every six weeks. During thesetwo-hour group meetings, volunteer navigators sharedtheir experiences of navigation and provided mutual ad-vice and support.The study used a community-based research approach.A 14-member community advisory committee, with rep-resentation from hospice societies, medicine, pharmacy,nursing, municipal government, residential care, and theregional health authority, provided guidance to the pro-ject. Part of the role of this committee was to capitalizeon the strategic partnerships that are essential to com-munity capacity-building. For example, the connectionFig. 1 Study processPesut et al. BMC Palliative Care  (2018) 17:2 Page 3 of 11to municipal government provided a forum throughwhich to share existing community gaps.A navigation curriculum, which included learning man-uals, case studies, and workshop materials, was developedto prepare volunteer navigators. The curriculum ad-dressed the following evidence-based [25] navigation com-petencies: understanding the navigator role, screening forquality of life concerns, advocating for clients, facilitatingcommunity connections, coordinating access to servicesand resources, and promoting active engagement. Thesesix overarching competencies were further delineated into27 specific indicators. Curriculum was piloted with thevolunteers who participated in this study in April of 2015during a three-day workshop. Minor revisions were madebased upon feedback obtained from the workshop andfrom other key stakeholders including the community ad-visory committee, and provincial and national hospice andpalliative care associations.Data collection and analysisTesting the feasibility of data collection procedures was anaim of this pilot study. Volunteer navigators recorded thefollowing data at each visit: duration and location of visit,people present, needs identified and addressed, and connec-tions made. Volunteer navigators used a journal to docu-ment successes, challenges, and overall perceptions of theintervention. Group mentoring sessions conducted by thenurse navigator with volunteer navigators were audio-tapedand transcribed. Transcripts of these sessions and volunteerjournals were analyzed as part of the evaluation.Volunteers completed self-efficacy and satisfaction ques-tionnaires (see Figure 1). The volunteer self-efficacy innavigation questionnaire required responses to the stem “Ifeel confident in my ability to ,” using a 4-point Likertscale of strongly agree to strongly disagree, in relation tothe 27 competencies upon which the navigation curricu-lum was constructed. The volunteer satisfaction question-naire consisted of eleven questions (e.g., did you feelworking as a navigator contributed to your satisfaction asa volunteer) to which volunteers were asked to respondusing a 4-point Likert scale of strongly agree to stronglydisagree. Clients completed self-efficacy, satisfaction, andquality of life questionnaires. The client self-efficacyquestionnaire required responses to the stem “I have con-fidence in my ability to” using a 4-point Likert scale ofstrongly agree to strongly disagree, in relation to 4 ques-tions (connection with healthcare system, connection withcommunity resources, contacting volunteer, and commu-nicating needs to others). The client satisfaction question-naire consisted of 8 questions (e.g., were you able tocomplete the navigation activities you wanted to) to whichclients were asked to respond using a 4-point Likert scaleof strongly agree to strongly disagree. The McGill Qualityof Life Questionnaire was used to measure quality of life[26, 27]; a key outcome goal for the navigation interven-tion. Questionnaire items were all worded positively(other than the McGill Quality of Life) and anonymisedthrough the use of study identification numbers. Finally, cli-ents/family, volunteer/nurse navigators, and other stake-holders completed a questionnaire about their perceptionsof the N-CARE program and participated in semi-structured interviews, conducted by the Research Coordin-ator, about their experiences with N-CARE. Qualitative datawere managed using NVIVOQSR. Thematic analysis wasconducted using interpretive description [28]. Quantitativedata were analyzed using SPSSIBM.ResultsSeven volunteer navigators were recruited in the spring of2015 through community hospice societies (See Table 1).Eighteen older adults and three family clients were recruitedbetween April 2015 and February 2016 (See Table 2). Clientrecruitment was ongoing throughout the study to offset at-trition due to death or study withdrawal. At the six-monthevaluation, volunteer navigators and clients were invited tocontinue into the second six-month intervention period. Allvolunteers chose to continue. One client did not proceedinto the second six-month period as he felt he no longerhad need of the service. Two clients died while on theservice.A description of the visit profiles is provided in Table 3.The intervention specified visits every two to three weeks,but volunteers were instructed to adapt this to the needsof the clients. Visits averaged approximately one hour inlength. Volunteers were asked to document the nature ofthe services they provided. Table 4 provides examples,taken from the visit reports filled out by volunteers, ofthese services. Examples of navigation interventions in-cluded both individual (e.g., connecting individuals tocommunity) and community capacity-building approaches(e.g., modifying community to support access). For ex-ample, one volunteer discovered that access to legalservices was limited for those with mobility challengesTable 1 Volunteer demographics (n = 7)Variable ResultsAge Range: 53–70 Mean: 60.0Gender Male n = 0 Female n = 7Length of timevolunteering>10 years: n = 36–10 years: n = 10–5 years: n = 3Length of time volunteeringwith older adults>10 years: n = 16–10 years: n = 30–5 years: n = 3Volunteer agencyexperienceHospice, Canadian Mental Health,Hospital, Residential Care, BC CancerSociety, Red Cross, OtherPesut et al. BMC Palliative Care  (2018) 17:2 Page 4 of 11and so advocated for changes in her community. One in-dication of the acceptability of an intervention is the num-ber of cancelled visits. Over the one-year period therewere 46 cancelled visits (15% of total booked visits), withthe primary reasons being feeling unwell or having con-flicting appointments. In total, volunteers dedicated 378.4direct contact hours to visiting with older adults (calcu-lated from visit duration recorded on visit reports).Volunteers devoted additional hours outside of direct con-tact time to explore potential solutions for clients. Thesehours were not recorded in this pilot. The cost of thenurse navigator over the one-year project was $37, 243 inwages. However, this cost included collecting and record-ing research-related data. Table 5 provides an overview ofpilot evaluation findings.Volunteer evaluationFigure 1 provides an overview of the evaluation data col-lected from volunteers at six months and twelve monthsinto the intervention. Results of the self-perceived confi-dence in navigation questionnaire indicated volunteers feltwell-prepared. At the 12-month evaluation, means of allself-perceived competence items indicated satisfactorycompetence. Perceptions of the N-CARE program,Table 2 Client demographics (n = 18)Variable ResultsAge Range: 56–85 Mean: 70.0Gender Male: n = 8 Female: n = 10Living arrangements Alone: n = 8 With Family: n = 10Primary chronic condition Cancer: n = 7 Other: n = 11Table 3 Visit profilesVariable ResultsTotal Participant (n = 18)VisitsTotal Visits Reported: n = 252Breakdown by provider:Nurse Navigator: n = 59 visitsVolunteer Navigators: n = 176 visitsCombined Nurse and Volunteer Navigator:n = 17 visitsDays between visits Mean: 17.88 SD:13.62Number of visits receivedby individual participantsRange: 5–26Mode: 17Length of visits In person: Range: 10–210 min Mean (SD):86.24 min (39.45)By phone: Range 10–50 min Mean (SD):20.23 min (11.28)Declined visits N = 46Reasons: Feeling unwell (n = 20); social/family obligations (n = 11); healthcarescheduling conflicts (n = 8); forgot visit(n = 3); other/unclear (n = 4)Table 4 Examples of support provided by volunteersN-CARE = Connecting, Accessing, Resourcing and EngagingConnecting: Those things volunteers did to enable older adults to feelconnected to others.• Psychosocial support for “disappointments” inherent in the advancedillness trajectory.• Discussions about illness, coping, and overall life impact.• Social conversations.• Sharing of confidences difficult to discuss within family (e.g.,discussions about death).• Family and neighbour mediation functions (e.g., helping to understandand resolve conflict).• Identification of friend and family connections and strategies on howto connect.• Visits while in hospital or residential care.• Strategies to reduce loneliness.Accessing: Strategies that enabled clients to access the services andresources available.• Assistance with reaching healthcare providers and makingappointments.• Practical strategies to speak to healthcare providers about mostpressing needs (e.g., reminder strategies, identifying problems, practicepronouncing physician names, notes to family to make physicianappointments, how to bring up sensitive medical issues, how tounderstand physician’s behaviours and/or reluctance to act, use ofadvocates for appointments, advocacy to set up regular homephysician visits, conversation plans).• Strategies to communicate wishes (e.g., care plan on refrigerator).• Mobility device options to support access.• Lawyers with wheel chair access.• Assistance with filling out forms (e.g., home owner grant).• Strategies to voice healthcare related concerns (e.g., letter writing).• Facilitating access to road tests prior to renewing drivers licence.• Discussions about ‘best’ choices (e.g., cost) in accessing resources suchas transportation and help at home.• Flying options with airlines when accommodation required.Resourcing: Identifying resources according to client need.• Healthcare: physiotherapist, chiropractor, chronic illness self-helpgroups and services, alternative therapies, counseling.• Home support services: Meals on Wheels, housekeeping, free yardwork, home delivery of oxygen.• Available living options in the community (e.g., assisted living,residential, rentals that accept pets).• Resources to assist with making life changes (e.g., low cost advertisingfor selling possessions, moving arrangements, places to donatetreasured possessions).• Transportation and mobility (e.g., mobility aids, out of town travelassistance).• Identification of the best person to answer healthcare relatedquestions.• Home safety/efficiency strategies (e.g., low cost kitchen appliance toreplace broken one).• Comfort adaptations (e.g., therapeutic beds).• Personal safety strategies (e.g., replacing old shoes that could not betied with supportive shoes with Velcro).• Advance care planning resources (e.g., options for organ donation).• Sources of special dietary needs.• Seniors resources (e.g., ombudsman, office of senior’s advocate, senior’scentre, adult day program).• Policy changes/services that affect seniors (e.g., information aboutchanges to provincial health premiums for low income earners,palliative benefits).Engaging: Strategies that assisted clients to engage more fully with life.• Sounding board to assist clients with making decisions about theirlives and transitions.Pesut et al. BMC Palliative Care  (2018) 17:2 Page 5 of 11gathered through the questionnaire and interviews, indi-cated that the program was well understood, well de-signed, and met a particular need in the community.Participants did indicate some concerns about the sustain-ability of the program in the community. Overall, volun-teers indicated a high degree of satisfaction with the roleon the satisfaction questionnaire. Volunteers indicatedthey would do the role again and would recommend it toothers. Lower satisfaction was related to “Were you ableto perform navigation services without difficulty?” and“Were you able to complete the navigation activities youwanted to?”Qualitative interview data provided further insight intovolunteer satisfaction. Volunteer navigators described therole as highly satisfying, largely because of the extendedtime for relationship-building. There was a strong sense ofsatisfaction in supporting clients over the long term. Oneparticipant described it as “making it easier for them to godown that path (of illness).” Not only did volunteers feellike they were contributing to the lives of these clients,but they acknowledged how clients contributed to theirlives. It was a relationship of reciprocity as expressed inthe words of this volunteer. “These people really touchedme and I got a lot from them as well. I hope I gave themsomething but you know they became friends and part ofmy life.”Qualitative data also provided insights into whyvolunteers were less satisfied in their abilities to performthe navigation role and activities. It took time for volun-teers to develop an understanding of their role. Duringthe first six months they described feeling like theyshould be doing more for clients as opposed to spendingtime building relationship. Throughout the interventionperiod it was typical for the volunteers to question thevalue of their contributions. And if they were not clearon the role, it was challenging for them to construct cri-teria by which to measure how well they were perform-ing in that role. In pondering this dilemma onevolunteer suggested “sometimes just providing that safeenvironment for someone to ventilate about their issues –maybe that’s my criteria.” However, as they spent moretime with clients they began to understand that the rolewas not limited to navigating resources but that it wasalso about ‘helping people navigate this time of their lifeon an emotional level.”Volunteers expressed several recommendations forprogram development during the interviews. They sug-gested that the visit schedule should have even moreflexibility. Clients had fluctuating needs and varied socialsupport and so it was important to take that into ac-count in a person-centered approach. They furtherspoke of the importance of the mentorship provided bythe nurse navigator, suggesting that this mentorshipcould be expanded even further. As they learned thescope and boundaries of this new role, it was essentialthat they have someone knowledgeable and supportiveto whom they could turn.When responding to the questionnaire about theirperceptions of the N-CARE program, volunteers re-ported a high degree of support for the program in theircommunity. They were satisfied with how it was plannedand implemented; however, they were less certain abouthow it could be sustained beyond the research period,largely because of the need to recruit early palliativeclients. Of particular concern were the resources re-quired to enhance public awareness of the program;Table 4 Examples of support provided by volunteers(Continued)• Options for self-management in relation to their experiences(e.g., implementing an exercise program to alleviate pain, watchingeducational videos about dialysis, relaxation exercises for sleep,strategies to monitor cognition).• Discussions about spiritual interests.• Renewing older hobbies or interests (e.g., coloring leading to artclasses).• Seniors activity planning.• Playing games.• Advance care planning (e.g., funeral home visits).• Grief strategies to increase engagement with others after loss.• Design walking routes and an activity plan.• Facilitation of plan for philanthropic work (e.g., helping refugeesmoving into the community).• Strategies to keep pets.• Strategies for preparing for stressful events (e.g., renewing driver’slicense).• Imagining options for living and thinking through quality of life issues.• Options of how to modify hobbies so that they are achievable(e.g., camping, berry picking).• Crafting an ‘emergency’ plan to deal with contingencies whilecaregiver is away.Table 5 Overview of evaluation findingsClients and Family VolunteersConfident in self-navigation as measured by self-efficacy questionnaire.Highly satisfied with intervention.Service rated as highly important to care because of:Assistance with making good decisions.Trusted, knowledgeable person available.Supported engagement with life.Increased awareness of available resources.Experiences put in context.Areas for further developmentMore flexibility in visit schedules and types (e.g., in home versus telephone).Well prepared in navigation as measured by self-efficacy questionnaire.Highly satisfied with role because of:Extended time for building relationship.Relationships of reciprocity.Positive perceptions of N-CARE program.Areas for further developmentMore flexibility in visit schedule.Ensure sustainability of program.Additional education and mentorship.More awareness of program in community.Pesut et al. BMC Palliative Care  (2018) 17:2 Page 6 of 11although, volunteers expressed a number of innovativeideas on how to increase public awareness.Client and family evaluationClients and family participated in an evaluation at sixmonths and twelve months. Evaluation conducted at sixmonths focused on client and family understandings ofnavigation, experiences of helpful interventions, chal-lenges encountered, and perceived importance of the ser-vice. Clients and family were highly satisfied. When askedduring the interviews how important the service was tothem, the mean response was 8.6/10. Client scores on theself-efficacy in navigation questionnaire ranged from2.91–3.55 on a 4-point rating scale with higher scores in-dicating better confidence. The collection of quality of lifedata using the McGill Quality of Life Questionnaire wasfeasible and acceptable to clients. Clients and family whoparticipated in interviews at six months demonstrated anoverall understanding of the role of the volunteer naviga-tor (e.g., support); although, the idea of “navigation” wasnot well understood. Benefits of having a volunteer navi-gator included confidence in being able to ask for help,having someone knowledgeable and available, knowingthere was backup when needed, helping put experiencesinto context, and bringing awareness of available re-sources. Challenges described by clients included focus-sing too much on the client’s illness, providing too muchinformation, and trying to find time for volunteer visitsamidst other medical appointments.Evaluation conducted at 12-months indicated that allclients agreed or strongly agreed with statements on ques-tionnaires regarding their confidence in self-navigationand their satisfaction with N-CARE. The only exceptionwas two clients who disagreed with items related to beingconnected to the healthcare system and one client dis-agreed with being connected to community resources.The 12-month interview, conducted at study conclusion,focused on reasons for enrolling with the program andoverall experiences and satisfaction with the service.Themes constructed from the data were clients’ experi-ences that made the service important, experiences of theintervention itself, and benefits of the intervention.Experiences that made the N-CARE service importantParticipants spoke eloquently about the experiences ofhaving a chronic illness that led them to participate inthe N-CARE project. Having a complex, advancedchronic illness led to feelings of stigma, isolation, loneli-ness, and disappearance of self. For example, this partici-pant spoke of the experiences of developing cancer. “Itcauses a feeling of isolation and aloneness. Others treatyou differently.” Coping with illness over an extendedperiod of time could have devastating effects on self. Asone participant shared “when you’ve been sick for a longtime [voice breaking], after a while everything disappears,and all your stability [crying].” These effects wereheightened if both partners where coping with a com-plex chronic illness. One participant described it as “twoillnesses fighting here, you know, there’s two sick people.And once in a while you say things that you’d never saynormally and it takes you back again and again. Is thisthe person I have become? You know it’s not a nice wayto feel.”This experience of advanced chronic illness was com-pounded by the challenges of aging. Participants spokeof the disrespect that accompanies aging in our society,and the resulting feelings of being patronized, which ul-timately led to feelings of being “in the way.” One coupleshared of the dilemma of trying to stay independentamidst increasing needs. They wanted to reach out forhelp but were not sure that their needs justified the timeof the navigators. “I hope you are not wasting your timewith us. But we knew they [navigators] weren’t and Iguess we wanted them to say no [you are not wasting ourtime].” Another participant expressed surprise at findingherself elderly and wondering what services she shouldbe looking for as an “elderly” person. “I have never beensick my whole life and so this being older is a new experi-ence for me, so let’s see what it’s all about.”The theme of not wanting to be a burden to others, orto the healthcare system, was prevalent. Participantswere aware of the media attention being given to thehealthcare costs of an aging population. They also didnot want to be a burden to family and friends as a resultof their increasing psychological needs. Moreover, seeingprofessionals such as a psychologist for what participantsconsidered normal aging events could be perceived asmaking them “feel weaker.”A primary reason for registering with the service werechallenges with the healthcare system which was per-ceived by clients as cold and fragmented. Those withcancer struggled with fragmentation between the primarycare system and the cancer care system. Although partici-pants spoke highly of their primary care physicians, theyfelt physicians simply did not have time to help them solvetheir complex challenges or signpost common diseasetrajectories. One participant described having a number ofpsychological needs related to being a caregiver whilestruggling with her own complex illness. “My doctor, I feeldoesn’t know me enough to understand and she doesn’thave the time to put into that. So that’s where your servicecomes in.”Experiences of the interventionParticipants commented on the characteristics of thevolunteers and the nature of the navigation visits. Partici-pants valued volunteers who approached them profession-ally, but with a lay attitude. Volunteers were described asPesut et al. BMC Palliative Care  (2018) 17:2 Page 7 of 11good listeners, caring, personable, outgoing, friendly, pa-tient, positive, capable, conscientious, kind, non-intrusive,and diligent in finding out what they did not know. Visitswith volunteers were described as non-intimidating, warm,welcoming, and respectful. The timing of visits was not al-ways optimal. Participants recommended that the visitschedule be more flexible. For example, they suggested thatsix week intervals with the option for telephone calls in be-tween might be more appropriate during times of stability.The focus and nature of the volunteer navigator visitswere not clear to clients at the outset, primarily becausethey were confused by the concept of navigation. Somewere disappointed there was not more instrumental sup-port (e.g., providing transportation or housecleaning).However, as their relationships with volunteers developed,participants described the importance of the visits inmeeting their needs. “It was, ‘how are things going’ andthen I opened up my mouth and we started to talk aboutwhat I felt we needed to talk about. It didn’t seem like theywere on this or that, or we must talk about this today. Itwas more fitting of my needs each time.” Participants had aneed to talk about their chronic illness and so appreciatedthat volunteers had some healthcare background; however,they did not expect healthcare advice. As one participantsaid, ‘It’s not so much about the medical; it was puttingthings in context.”Benefits of the interventionOlder adults and family described four primary benefits ofbeing part of the N-CARE service: making good decisionsfor both now and the future, having a surrogate safety net,supporting engagement with life, and, hence, transformingthe nature of their illness experience. Volunteers per-formed roles of helping clients identify their needs andmaking good decisions around meeting those needs. Olderadults referred to this as helping them with a “sober, sec-ond opinion,” “getting their house in order” or “gettingthem out of the woods.” Volunteers helped clients weighoptions related to housing, finances, treatment decisions,transportation, and advance care planning. Volunteershelped participants sign-post, or identify what might becoming down the road, so they could make good decisionsin light of what they had identified. One family spoke offeeling overwhelmed with options and questions, suggest-ing the timely information provided by the volunteerwould be important in the future for her caregiving role.“What will help me as the caregiver is that I will be able tophone them [volunteer] and they’ll be able to put me whereI am at, and what I should be doing, and that will be morethan helpful.”The volunteers also provided a surrogate “safety net.”Two participants were experiencing gaps in formal healthservices because of rural shortages and so spoke of therole the volunteer played in supporting them during thistime. Without the psychological safety provided by thevolunteer, clients spoke of feeling anxious about the fu-ture. For example, one couple who were both coping withchronic illness, and had no local family, valued the factthat they could call upon the volunteer if at some pointthey reached a “crisis point.” Volunteers also provided ameasure of safety around what could be discussed. Theywere described as “friends but not quite friends” and theircapacity to engage with deeper issues that family membersfelt uncomfortable talking about was important. For ex-ample, one participant shared that he and his spousewould never have entered the kinds of conversations theydid without the presence of the volunteer. Another par-ticipant said “we have conversations that are, like I say, go-ing deeper into cancer, and that’s a useful conversation forme to have.” Safety was also found in the advocacy role ofvolunteers; “I cannot think of the word right now…some-body that defends you. So she was good in clearing thatkind of path for me. And taking away some anxiety.”Engagement was another benefit cited by clients.Participants appreciated the ways in which volunteerssupported their capacities. “I was surprised by how muchit does help the minute she comes in. And later on I saidto someone just the other day, ‘You know I did this and Ididn’t realize I could still do it.’” One participant spokeof how she vacillated between wanting to be dead oralive and how the engagement she experienced throughthe program helped her. “Somehow you feel more alivewhen you’re ahead of the game…you’ve got something go-ing there…this program does help.” Another participantsuggested that the service kept him from slipping intodepression after a series of losses and how he now feltproductive and connected once again.Overall, participants suggested that volunteers trans-formed their illness experience. “It showed us that otherpeople have got the same problems…it gives us an uplift-ing…I’m sure other people have the same feelings wehave…if someone’s there just to put a hand on your shoul-der we know we’re going through it with other people.”Knowing there was a program for their unique needshelped to offset feelings of loneliness and neglect. “Some-body is looking out for the seniors [through N-CARE] andtrying to find outside of their own little world of experiencewhat is happening with the rest of us.” One couple spokeof how easy it was to lose pride in existence as you getolder and how “life problems gang up on you.” The atten-tion they received from the volunteer helped to re-instatethat pride. One participant described the volunteer as aplacebo. “Cancer is not just the physical thing, it’s anemotional wound. She’s sort of like a placebo in that she’snot going to cure my cancer, but she makes it a lot morelivable.” Participants further spoke of humorous anduplifting moments they enjoyed with the volunteer. In thisway participants were acknowledging how the interventionPesut et al. BMC Palliative Care  (2018) 17:2 Page 8 of 11altered the qualitative nature of their experience, even if itdid not change the medical trajectory.DiscussionThe results of this pilot are promising. Recruitment wassuccessful with little study attrition. Recruitment was fa-cilitated by the community-based nature of the researchwhereby community members were involved with studyconceptualization and implementation. We attribute thelack of attrition, other than through death, to the year-long nature of the pilot in which volunteers and clientshad extended time to build trust and relationship. Themajority of visits occurred as mutually planned, withmost cancellations occurring because of poor health.Volunteers demonstrated a high degree of resourceful-ness in their navigation activities, found the role satisfy-ing and meaningful, and would recommend it to others.After some initial role confusion, volunteers and clientspartnered to meet a wide variety of needs through con-necting to others, finding resources, facilitating access tothose resources, and engaging clients with things thatsupported their quality of life and independence. Clientsdescribed a transformation of their illness experiencethat was similar to what was reported in a systematic re-view of public health interventions at end of life [14]. Akey theme from that review was how these interventionsmade a practical difference that transformed the imme-diate experience of illness.Assistance with decision-making was one of the most im-portant benefits cited by clients. For example, volunteers fa-cilitated conversations about meaning, and hence,contributed to clients’ sense of control which assisted theirdecision-making. This is similar to other research wherethis sense of control has been shown to be important for anearly palliative population [29] and where volunteer inter-ventions that focused on communication, emotional sup-port, education, and advocacy targeted the priority needs[19]. Navigation activities performed by volunteer partici-pants extended beyond building individual capacity tobuilding community capacity, again a key theme from thereview cited above [14]. They advocated at a communitylevel for the resources required by their clients. As a resultof this prolonged and intensive involvement with avolunteer, clients and families described a milieu of supportthat facilitated a sense of belonging, safety, and engage-ment. This community-based development of social capitalexemplifies a public health, compassionate communitiesapproach to care for this population [13].A number of lessons were learned that will be applied tofuture offerings of this program. First, with a new rolesuch as this, it will be important to provide ongoing edu-cation and mentoring. The nurse navigator on this projectprovided this ongoing mentorship. Although she providedlittle direct support to clients, her role in supportingvolunteers was important and could be expanded furtherto include structured ongoing education. Previous re-search has suggested that the priority needs for volunteersworking with this population are emotional support, roleclarification, and continuing education [19]. These priorityneeds can be met concurrently through sessions that pro-vide both structured education and unstructured oppor-tunities to connect with other volunteer navigators foremotional support and role development. Second, the pro-gram will be designed around more flexible in-home visitschedules with telephone contact between home visits.However, regular visits in the early phase of volunteer/cli-ent relationship will be encouraged so that relationshipand rapport can be established. This is particularly import-ant in light of the six month evaluation data suggestingthat clients and volunteers were still in the formativestages of understanding their partnership in the context ofnavigation. Third, more focused communication strategieswill be implemented to raise community awareness of theprogram. This will be particularly important to ensure thatappropriate clients are identified and made aware of theservices available to them.Although the pilot results were promising, there aretwo important limitations. First, this program was imple-mented within a single geographic region in which theresearch team had been involved for many years. A pre-vious project in the community had piloted a nurse navi-gator and so the community was well-prepared for thisnext step. With this expanded scope for the volunteer,this previous research and community partnership wasessential to ensuring that the program was implementedin a way that was acceptable to all stakeholders. Second,although the volunteers were mentored by a nurse navi-gator, N-CARE was only loosely connected to formalhealthcare services. The nurse navigator had been nurs-ing long-term in this geographic region and so had in-timate knowledge of the persons and services available,although she was not employed by the health regionduring this project. This lack of a stronger connectionwith healthcare may present difficulties in the future forrecruiting clients and for connecting clients with neededservices. Ideally, a program of this nature will work inpartnership with primary care. There is a need in futureto determine how to most effectively link these volun-teers more strategically to existing in-service healthcarepartners. Effective linking will ensure that volunteers getthe referrals and support they require to do their rolewhile maintaining the community-based, public healthnature of the intervention.ConclusionA program such as N-CARE has the potential to meetthree important needs: early support to improve the qual-ity of life of older adults living with advancing chronicPesut et al. BMC Palliative Care  (2018) 17:2 Page 9 of 11illness, a satisfying and meaningful role for volunteers,and a way to support a compassionate communitiesapproach to palliative care. N-CARE is currently beingimplemented and evaluated in diverse rural and urbancommunities across Canada. The objectives of this scaleup of N-CARE are to describe the adaptations that sup-port best-practices for implementation in diverse contexts;to evaluate outcomes at the individual, organization, andcommunity level; and to plan for sustainability. Futurestudies are required to explore outcomes of the N-CAREprogram in relation to standard care.AbbreviationsN-CARE: Navigation: connecting, accessing, resourcing, engagingAcknowledgmentsThe authors would like to thank the volunteers and clients who gavegenerously to make this study possible.FundingFunding was provided through the Peter Wall Foundation [F14–03057], theVancouver Foundation [UNR14–0682], and the Canadian Frailty Network[CAT2014-CPA]. Additional funding partners included the Canadian HospicePalliative Care Association, Pallium, Interior Health, the Canadian PatientSafety Institute, the University of Alberta, and the Canada Research ChairsProgram. Funding partners did not participate in the design of the study orin the collection, analysis, and interpretation of data. EA, an employee ofInterior Health, contributed to study design and the writing of themanuscript.Availability of data and materialsData that supports the writing of this manuscript, and the findings of thisresearch study, are not publicly available due to reasons of risking theconfidentiality and anonymity of research participants.Authors’ contributionsBP co-led project implementation and drafted the manuscript. WD and GWco-led project implementation and provided feedback on the manuscript.KF provided project specific expertise and provided feedback on the manuscript.BH and EA provided regional leadership on the project and provided feedbackon the manuscript. KS and MG assisted with data collection and analysis andprovided feedback on the manuscript. All authors read and approved the finalmanuscript.Competing interestsBH, MG and KS received financial remuneration from grant funds for servicesrendered in the conduct of this project. The authors declare that there areno other competing interests.Consent for publicationNot applicable.Ethics approval and consent to participateEthical approval was granted by the University of British Columbia OkanaganBehavioural Research Ethics Board and the Interior Health Research EthicsBoard (reference: H15–00003). Written informed consent was obtained fromclients and volunteers.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims in publishedmaps and institutional affiliations.Author details1Faculty of Health and Social Development, University of British ColumbiaOkanagan, 1147 Research Road, Kelowna, BC V1V 1V7, Canada. 2Faculty ofNursing, University of Alberta, 11405-87 Avenue, Edmonton, AB T6G 1C9,Canada. 3School of Occupational Therapy, Dalhousie University, 5869University Avenue, Halifax, NS B3H 4R2, Canada. 4Faculty of Medicine andDentistry, University of Alberta, 11560 University Avenue, Edmonton, AB T6G2G2, Canada. 5Interior Health Authority, Nelson, BC, Canada. 6Greater TrailHospice Society, 1500 Columbia Ave, Suite 7, Rossland, BC V1R 1J9, Canada.7School of Nursing, University of British Columbia Okanagan, 1147 ResearchRoad, Kelowna, BC V1V 1V7, Canada.Received: 7 February 2017 Accepted: 22 May 2017References1. Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacityin hospice palliative care: A narrative review. Am J Hosp Palliat Care.2014;31:69–78.2. McKee M, Kelley ML, Guirguis-Younger M. So no one dies alone: a study ofhospice volunteering with rural seniors. J Palliat Care. 2007;23:163–72.3. McKee M, Kelley ML, Guirguis-Younger M, MacLean M, Nadin S. It takes awhole community: the contribution of rural hospice volunteers to whole-person palliative care. J Palliat Care. 2010;26:103–11.4. Duggleby WD, Penz K, Leipert BD, Wilson DM, Goodridge D, Williams A. ‘Iam part of the community but...’ The changing context of rural living forpersons with advanced cancer and their families. Rural Remote Health.2011;11:1–12.5. 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;15:1–14.6. Albrecht H, Comartin J, Valeriote F, Block K, Scarpaleggia F. Not to beForgotten: Care of Vulnerable Canadians. 2011. on 30 Jan 2017.7. Burbeck R, Candy B, Low J, Rees R. Understanding the role of the volunteerin specialist palliative care: a systematic review and thematic synthesis ofqualitative studies. BMC Palliat Care. 2014;13:1–12.8. Candy B, France R, Low J, Sampson L. Does involving volunteers in theprovision 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;52:756–68.9. Dempers C, Gott M. Which public health approach to palliative care: anintegrative literature review. Prog Palliat Care. 2016. doi:10.1080/09699260.2016.1189483.10. World Health Organization. The Ottawa Charter for Health Promotion. In:Health Promotion. 1986. Accessed 30 Jan 2017.11. Kellehear A. Health Promoting Palliative Care. Melbourne: Oxford UniversityPress; 1999.12. Kellehear A, O’Connor D. Health-promoting palliative care: a practiceexample. Crit Public Health. 2008;18:111–5.13. Karapliagkou A, Kellehear A. Public Health Approaches to Palliative Care:A Toolkit. N.D. Accessed 30 Jan 2017.14. Sallnow L, Khan F, Uddin N, Kellehear A. The impact of a new public healthapproach to end-of-life care: A systematic review. Palliat Med. 2016;30(3):200–11. doi:10.1586/erp.11.18.15. 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 supportintervention for adults with life-limiting illness. BMC Palliat Care. 2015;14:65.doi:10.1186/s12904-015-0060-9.16. Walshe C, Algorta GP, Dodd S, Hill M, Ockenden N, Payne S, et al. Protocolfor the end-of-life social action study (ELSA): a randomised wait-listcontrolled trial and embedded qualitative case study evaluation assessingthe causal impact of social action befriending services on end of lifeexperience. BMC Palliat Care. 2016;15:60. doi:10.1186/s12904-016-0134-3.17. Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC. Can assessingcaregiver 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:10.1177/0269216311421834.18. Morris SM, Payne S, Ockenden N, Hill M. Hospice volunteers: bridging thegap to the community? Health Soc Care Community. 2015;doi:10.1111/hsc.12232.Pesut et al. BMC Palliative Care  (2018) 17:2 Page 10 of 1119. MacLeod A, Skinner MW, Low E. Supporting hospice volunteers andcaregivers through community-based participatory research. Health SocCare Community. 2012;20:190–8.20. Dempers C, Gott M. (2016). The status of a public health approach topalliative care at New Zealand hospices. Prog Palliat Care. 2016;doi:10.1080/09699260.2016.1261530.21. Pesut B, Hooper B, Jacobsen M, Nielsen B, Falk M & O ‘Connor BP. Nurse-lednavigation to provide early palliative care in rural areas: a pilot study. BMCPalliat Care. 2017;16(37): doi:10.1186/s12904-017-0211-222. Case MAB. Oncology nurse navigator: ensuring safe passage. Clin J Oncol Nurs.2011;15:33–40.23. Fillion L, Cook S, Veillette AM, Aubin MI, de Serres M, Rainville FO, et al.Professional navigation framework: elaboration and validation in a Canadiancontext. Oncol Nurs Forum. 2012;39:E58–69.24. Lorhan S, Cleghorn L, Fitch M, Pang K, McAndrew A, Applin-Poole J, et al.Moving the agenda forward to cancer patient navigation: understandingvolunteer and peer navigation approaches. J Cancer Educ. 2012;28:84–91.25. Duggleby W, Anderson J, Baxter S, Berry P, Cooper D, Fainsinger R,Fassbender K, Fraser K, Gayman K, Ghosh S, Goodridge D, Hallstrom L,Kaasalainen S, Kary S, Keating N, Kenmore K, MacLeod R, Mann A,Nekolaichuk C, Pesut B, Peterson Fraser M, Robinson C, Santos Salas A,Swanson S, Swindle J, Watanabe S, Watson L, Whitfield K, Williams A,Woytkiw T. Which way from here? Navigation Competencies for the Care ofOlder Rural Adults at the End of Life. 2014. Accessed 20 Jan 2017.26. Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of LifeQuestionnaire: a measure of quality of life appropriate for people withadvanced disease. A preliminary study of validity and acceptability. Palliat Med.1995;9:207–19.27. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of theMcGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existentialdomain. Palliat Med. 1997;11:3–20.28. Thorne S. Interpretive Description: qualitative Research for Applied Practice.2nd ed. New York: Routledge; 2016.29. Romo RD, Allison TA, Smith AK, Wallhagen MI. Sense of control in end-of-life decision-making. J Am Geriat Soc. 2016; doi:10.1111/jgs.14711.•  We accept pre-submission inquiries •  Our selector tool helps you to find the most relevant journal•  We provide round the clock customer support •  Convenient online submission•  Thorough peer review•  Inclusion in PubMed and all major indexing services •  Maximum visibility for your researchSubmit your manuscript your next manuscript to BioMed Central and we will help you at every step:Pesut et al. BMC Palliative Care  (2018) 17:2 Page 11 of 11


Citation Scheme:


Citations by CSL (citeproc-js)

Usage Statistics



Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            async >
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:


Related Items