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 needs of the clients. Visits averaged approximately one hour in length. Volunteers were asked to document the nature of the services they provided. Table
4 provides examples, taken from the visit reports filled out by volunteers, of these services. Examples of navigation interventions included both individual (e.g., connecting individuals to community) and community capacity-building approaches (e.g., modifying community to support access). For example, one volunteer discovered that access to legal services was limited for those with mobility challenges and so advocated for changes in her community. One indication of the acceptability of an intervention is the number of cancelled visits. Over the one-year period there were 46 cancelled visits (15% of total booked visits), with the primary reasons being feeling unwell or having conflicting appointments. In total, volunteers dedicated 378.4 direct contact hours to visiting with older adults (calculated from visit duration recorded on visit reports). Volunteers devoted additional hours outside of direct contact time to explore potential solutions for clients. These hours were not recorded in this pilot. The cost of the nurse navigator over the one-year project was $37, 243 in wages. However, this cost included collecting and recording research-related data. Table
5 provides an overview of pilot evaluation findings.
Total Participant (n = 18) Visits | Total Visits Reported: n = 252 |
Breakdown by provider:
|
Nurse Navigator: n = 59 visits |
Volunteer Navigators: n = 176 visits |
Combined Nurse and Volunteer Navigator: n = 17 visits |
Days between visits | Mean: 17.88 SD:13.62 |
Number of visits received by individual participants | Range: 5–26 Mode: 17 |
Length 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 = 46 |
Reasons: Feeling unwell (n = 20); social/family obligations (n = 11); healthcare scheduling conflicts (n = 8); forgot visit (n = 3); other/unclear (n = 4) |
Table 4
Examples of support provided by volunteers
Connecting: Those things volunteers did to enable older adults to feel connected to others. |
• Psychosocial support for “disappointments” inherent in the advanced illness 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 understand and resolve conflict). • Identification of friend and family connections and strategies on how to connect. • Visits while in hospital or residential care. • Strategies to reduce loneliness. |
Accessing: Strategies that enabled clients to access the services and resources available. |
• Assistance with reaching healthcare providers and making appointments. • Practical strategies to speak to healthcare providers about most pressing needs (e.g., reminder strategies, identifying problems, practice pronouncing physician names, notes to family to make physician appointments, how to bring up sensitive medical issues, how to understand physician’s behaviours and/or reluctance to act, use of advocates for appointments, advocacy to set up regular home physician 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 such as 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-help groups and services, alternative therapies, counseling. • Home support services: Meals on Wheels, housekeeping, free yard work, 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 advertising for selling possessions, moving arrangements, places to donate treasured possessions). • Transportation and mobility (e.g., mobility aids, out of town travel assistance). • Identification of the best person to answer healthcare related questions. • Home safety/efficiency strategies (e.g., low cost kitchen appliance to replace broken one). • Comfort adaptations (e.g., therapeutic beds). • Personal safety strategies (e.g., replacing old shoes that could not be tied 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’s centre, adult day program). • Policy changes/services that affect seniors (e.g., information about changes 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 their lives and transitions. • Options for self-management in relation to their experiences (e.g., implementing an exercise program to alleviate pain, watching educational 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 art classes). • 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 refugees moving into the community). • Strategies to keep pets. • Strategies for preparing for stressful events (e.g., renewing driver’s license). • 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 while caregiver is away. |
Table 5
Overview of evaluation findings
Confident 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 development
More 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 development
More flexibility in visit schedule. Ensure sustainability of program. Additional education and mentorship. More awareness of program in community. |
Volunteer evaluation
Figure
1 provides an overview of the evaluation data collected from volunteers at six months and twelve months into the intervention. Results of the self-perceived confidence in navigation questionnaire indicated volunteers felt well-prepared. At the 12-month evaluation, means of all self-perceived competence items indicated satisfactory competence. Perceptions of the N-CARE program, gathered through the questionnaire and interviews, indicated that the program was well understood, well designed, and met a particular need in the community. Participants did indicate some concerns about the sustainability of the program in the community. Overall, volunteers indicated a high degree of satisfaction with the role on the satisfaction questionnaire. Volunteers indicated they would do the role again and would recommend it to others. Lower satisfaction was related to “Were you able to perform navigation services without difficulty?” and “Were you able to complete the navigation activities you wanted to?”
Qualitative interview data provided further insight into volunteer satisfaction. Volunteer navigators described the role as highly satisfying, largely because of the extended time for relationship-building. There was a strong sense of satisfaction in supporting clients over the long term. One participant described it as “making it easier for them to go down that path (of illness).” Not only did volunteers feel like they were contributing to the lives of these clients, but they acknowledged how clients contributed to their lives. It was a relationship of reciprocity as expressed in the words of this volunteer. “These people really touched me and I got a lot from them as well. I hope I gave them something but you know they became friends and part of my life.”
Qualitative data also provided insights into why volunteers were less satisfied in their abilities to perform the navigation role and activities. It took time for volunteers to develop an understanding of their role. During the first six months they described feeling like they should be doing more for clients as opposed to spending time building relationship. Throughout the intervention period it was typical for the volunteers to question the value of their contributions. And if they were not clear on the role, it was challenging for them to construct criteria by which to measure how well they were performing in that role. In pondering this dilemma one volunteer suggested “sometimes just providing that safe environment for someone to ventilate about their issues – maybe that’s my criteria.” However, as they spent more time with clients they began to understand that the role was not limited to navigating resources but that it was also about ‘helping people navigate this time of their life on an emotional level.”
Volunteers expressed several recommendations for program development during the interviews. They suggested that the visit schedule should have even more flexibility. Clients had fluctuating needs and varied social support and so it was important to take that into account in a person-centered approach. They further spoke of the importance of the mentorship provided by the nurse navigator, suggesting that this mentorship could be expanded even further. As they learned the scope and boundaries of this new role, it was essential that they have someone knowledgeable and supportive to whom they could turn.
When responding to the questionnaire about their perceptions of the N-CARE program, volunteers reported a high degree of support for the program in their community. They were satisfied with how it was planned and implemented; however, they were less certain about how it could be sustained beyond the research period, largely because of the need to recruit early palliative clients. Of particular concern were the resources required to enhance public awareness of the program; although, volunteers expressed a number of innovative ideas on how to increase public awareness.
Client and family evaluation
Clients and family participated in an evaluation at six months and twelve months. Evaluation conducted at six months focused on client and family understandings of navigation, experiences of helpful interventions, challenges encountered, and perceived importance of the service. Clients and family were highly satisfied. When asked during the interviews how important the service was to them, the mean response was 8.6/10. Client scores on the self-efficacy in navigation questionnaire ranged from 2.91–3.55 on a 4-point rating scale with higher scores indicating better confidence. The collection of quality of life data using the McGill Quality of Life Questionnaire was feasible and acceptable to clients. Clients and family who participated in interviews at six months demonstrated an overall understanding of the role of the volunteer navigator (e.g., support); although, the idea of “navigation” was not well understood. Benefits of having a volunteer navigator included confidence in being able to ask for help, having someone knowledgeable and available, knowing there was backup when needed, helping put experiences into context, and bringing awareness of available resources. Challenges described by clients included focussing too much on the client’s illness, providing too much information, and trying to find time for volunteer visits amidst other medical appointments.
Evaluation conducted at 12-months indicated that all clients agreed or strongly agreed with statements on questionnaires regarding their confidence in self-navigation and their satisfaction with N-CARE. The only exception was two clients who disagreed with items related to being connected to the healthcare system and one client disagreed with being connected to community resources. The 12-month interview, conducted at study conclusion, focused on reasons for enrolling with the program and overall experiences and satisfaction with the service. Themes constructed from the data were clients’ experiences that made the service important, experiences of the intervention itself, and benefits of the intervention.
Experiences that made the N-CARE service important
Participants spoke eloquently about the experiences of having a chronic illness that led them to participate in the N-CARE project. Having a complex, advanced chronic illness led to feelings of stigma, isolation, loneliness, and disappearance of self. For example, this participant spoke of the experiences of developing cancer. “It causes a feeling of isolation and aloneness. Others treat you differently.” Coping with illness over an extended period of time could have devastating effects on self. As one participant shared “when you’ve been sick for a long time [voice breaking], after a while everything disappears, and all your stability [crying].” These effects were heightened if both partners where coping with a complex chronic illness. One participant described it as “two illnesses fighting here, you know, there’s two sick people. And once in a while you say things that you’d never say normally and it takes you back again and again. Is this the person I have become? You know it’s not a nice way to feel.”
This experience of advanced chronic illness was compounded by the challenges of aging. Participants spoke of the disrespect that accompanies aging in our society, and the resulting feelings of being patronized, which ultimately led to feelings of being “in the way.” One couple shared of the dilemma of trying to stay independent amidst increasing needs. They wanted to reach out for help but were not sure that their needs justified the time of the navigators. “I hope you are not wasting your time with us. But we knew they [navigators] weren’t and I guess we wanted them to say no [you are not wasting our time].” Another participant expressed surprise at finding herself elderly and wondering what services she should be looking for as an “elderly” person. “I have never been sick my whole life and so this being older is a new experience for me, so let’s see what it’s all about.”
The theme of not wanting to be a burden to others, or to the healthcare system, was prevalent. Participants were aware of the media attention being given to the healthcare costs of an aging population. They also did not want to be a burden to family and friends as a result of their increasing psychological needs. Moreover, seeing professionals such as a psychologist for what participants considered normal aging events could be perceived as making them “feel weaker.”
A primary reason for registering with the service were challenges with the healthcare system which was perceived by clients as cold and fragmented. Those with cancer struggled with fragmentation between the primary care system and the cancer care system. Although participants spoke highly of their primary care physicians, they felt physicians simply did not have time to help them solve their complex challenges or signpost common disease trajectories. One participant described having a number of psychological needs related to being a caregiver while struggling with her own complex illness. “My doctor, I feel doesn’t know me enough to understand and she doesn’t have the time to put into that. So that’s where your service comes in.”
Experiences of the intervention
Participants commented on the characteristics of the volunteers and the nature of the navigation visits. Participants valued volunteers who approached them professionally, but with a lay attitude. Volunteers were described as good listeners, caring, personable, outgoing, friendly, patient, positive, capable, conscientious, kind, non-intrusive, and diligent in finding out what they did not know. Visits with volunteers were described as non-intimidating, warm, welcoming, and respectful. The timing of visits was not always optimal. Participants recommended that the visit schedule be more flexible. For example, they suggested that six week intervals with the option for telephone calls in between might be more appropriate during times of stability.
The focus and nature of the volunteer navigator visits were not clear to clients at the outset, primarily because they were confused by the concept of navigation. Some were disappointed there was not more instrumental support (e.g., providing transportation or housecleaning). However, as their relationships with volunteers developed, participants described the importance of the visits in meeting their needs. “It was, ‘how are things going’ and then I opened up my mouth and we started to talk about what I felt we needed to talk about. It didn’t seem like they were on this or that, or we must talk about this today. It was more fitting of my needs each time.” Participants had a need to talk about their chronic illness and so appreciated that volunteers had some healthcare background; however, they did not expect healthcare advice. As one participant said, ‘It’s not so much about the medical; it was putting things in context.”
Benefits of the intervention
Older adults and family described four primary benefits of being part of the N-CARE service: making good decisions for both now and the future, having a surrogate safety net, supporting engagement with life, and, hence, transforming the nature of their illness experience. Volunteers performed roles of helping clients identify their needs and making good decisions around meeting those needs. Older adults referred to this as helping them with a “sober, second opinion,” “getting their house in order” or “getting them out of the woods.” Volunteers helped clients weigh options related to housing, finances, treatment decisions, transportation, and advance care planning. Volunteers helped participants sign-post, or identify what might be coming down the road, so they could make good decisions in light of what they had identified. One family spoke of feeling overwhelmed with options and questions, suggesting the timely information provided by the volunteer would be important in the future for her caregiving role. “What will help me as the caregiver is that I will be able to phone them [volunteer] and they’ll be able to put me where I am at, and what I should be doing, and that will be more than helpful.”
The volunteers also provided a surrogate “safety net.” Two participants were experiencing gaps in formal health services because of rural shortages and so spoke of the role the volunteer played in supporting them during this time. Without the psychological safety provided by the volunteer, clients spoke of feeling anxious about the future. For example, one couple who were both coping with chronic illness, and had no local family, valued the fact that they could call upon the volunteer if at some point they reached a “crisis point.” Volunteers also provided a measure of safety around what could be discussed. They were described as “friends but not quite friends” and their capacity to engage with deeper issues that family members felt uncomfortable talking about was important. For example, one participant shared that he and his spouse would never have entered the kinds of conversations they did without the presence of the volunteer. Another participant said “we have conversations that are, like I say, going deeper into cancer, and that’s a useful conversation for me to have.” Safety was also found in the advocacy role of volunteers; “I cannot think of the word right now…somebody that defends you. So she was good in clearing that kind of path for me. And taking away some anxiety.”
Engagement was another benefit cited by clients. Participants appreciated the ways in which volunteers supported their capacities. “I was surprised by how much it does help the minute she comes in. And later on I said to someone just the other day, ‘You know I did this and I didn’t realize I could still do it.’” One participant spoke of how she vacillated between wanting to be dead or alive and how the engagement she experienced through the program helped her. “Somehow you feel more alive when you’re ahead of the game…you’ve got something going there…this program does help.” Another participant suggested that the service kept him from slipping into depression after a series of losses and how he now felt productive and connected once again.
Overall, participants suggested that volunteers transformed their illness experience. “It showed us that other people have got the same problems…it gives us an uplifting…I’m sure other people have the same feelings we have…if someone’s there just to put a hand on your shoulder we know we’re going through it with other people.” Knowing there was a program for their unique needs helped to offset feelings of loneliness and neglect. “Somebody is looking out for the seniors [through N-CARE] and trying to find outside of their own little world of experience what is happening with the rest of us.” One couple spoke of how easy it was to lose pride in existence as you get older and how “life problems gang up on you.” The attention they received from the volunteer helped to re-instate that pride. One participant described the volunteer as a placebo. “Cancer is not just the physical thing, it’s an emotional wound. She’s sort of like a placebo in that she’s not going to cure my cancer, but she makes it a lot more livable.” Participants further spoke of humorous and uplifting moments they enjoyed with the volunteer. In this way participants were acknowledging how the intervention altered the qualitative nature of their experience, even if it did not change the medical trajectory.